15th Year Transplant Anniversary

Hallelujah! 🙌 Praise the Lord. 🙏🏻 It’s hard to believe but today is the 15th anniversary of my double lung and liver transplant at Methodist Hospital in Houston, Texas. My life-saving transplant was on April 19, 2011. 🫁

It’s been an amazing journey and I’m so happy to have lived an extra 15 “bonus” years. What a blessing to receive the Gift of Life. 💚 I’m so thankful and grateful to still be alive after so many years. I’ll never forget my pre-transplant doctor telling me I might make it 5 years if I’m lucky. The statistics show that 50% of lung transplant recipients make it 5 years. The statistics also show that only 20% of lung transplant recipients make it 10 years. I’ve yet to find any statistics on 15 years but I know it’s a smaller percentage. 

I give all the thanks and glory to God for my miracle life saving transplant and continued good health. A lot of times I ask “Why have I been so blessed?” I don’t feel so special but I know I am special in God’s eyes. My donor is always in my thoughts and I’m so grateful to him and his family that he was willing to be an organ donor.  I don’t think I’ll ever fully comprehend what happened to me and I know I write that every year but my transplant experience still feels so surreal even after all of these years. That’s the best way to describe it. It’s hard to still process after 15 years that those are his organs keeping me alive; no longer my God given organs. It can be a lot to process and think about at times. 

I had a wonderful past year but I was in the hospital again for an intestinal blockage due to cystic fibrosis. It was my third blockage in just a little over 1 1/2 years . I was in the hospital from January 7th till the 12th. It was a lot of pain but not as bad as the blockage last year which landed me in ICU. I became septic last year.  Thankfully I was able to avoid surgery but it’s always scary and painful when a blockage happens. 

The highlight of the past year was that I just got back from a weeklong cruise to the Caribbean April 5-12.  🛳️ My parents and life partner Sharon joined me on the Carnival Dream ship. My former doctor, Dr. Allen, and family friend Evelyn also joined us. We had a great time. The food and was wonderful. I know I definitely gained weight! Lol 😂 The ship docked at Jamaica, Grand Cayman Island and Cozumel. We took a bus tour excursion at Jamaica and again at Grand Cayman but went to the beach at Cozumel. It was a private beach and the excursion included a lunch buffet. The beach sand was so white and the water was so clear. It was fun to get in the water and relive memories of when I visited a Cozumel beach back in 1998. I originally planned to swim with the stingrays in Grand Cayman but my new doctor didn’t think it was a good idea. I’ve always tried to live smart and adhere to the philosophy of “it’s better to be safe than sorry” especially when you are on a distant island far out in the Caribbean. 🏝️

Speaking of my new doctor, his name is Dr. Kumar.  He joined the transplant team at the beginning of this year and became the new lung transplant director replacing Dr. Grazia. My former doctor, Dr. Todd Grazia, left the hospital after being my doctor for 8 years. He was a great doctor with the absolute best bed side manner. He had Sharon and me laughing so hard sometimes at some of his personal stories. I’m going to miss him and it’s left a hole and void in my heart.  My transplant coordinator April also left during the winter to become a full-time CF nurse. She had been my lung transplant coordinator for approximately 5 years. It’s been tough because both Dr. Grazia and April were so instrumental in my care for many years. It always helped my peace of mind being under their care.  
I’m sure the level of care at Baylor Hospital will continue to be excellent.  Hopefully I’ll have a good connection with my new doctor and nurse over time. 

I’ve overcome so much my whole life. So many medical challenges and obstacles. I almost didn’t survive as an infant without emergency surgery (meconium ileus) and my parents were told I would not survive past age 6 or 7. The prognosis for cystic fibrosis patients in the 1960’s and 70’s was very grim. It’s not like it is today where the outlook is very promising and positive due to gene therapy. My parents though were by my side every step of the way and have continued to be by my side to this day. I would not be here today without all their help. We are a great team and they were very involved and hands-on in my care well before my need of a transplant in 2010. Cystic fibrosis is a horrible disease which required daily care every single day of my life for 42 years pre-transplant. Every single day required aerosol nebulizer treatments and chest percussion therapy (CPT) multiple times each day administered by my parents. I’ve come so far from those days of taking treatments. God really did bless me with the best parents ever. I’m the luckiest man on the face of the Earth. I recently told my therapist that if God asked me (hypothetically speaking) if I wanted to relive my life CF-free but with different parents that I’d turn that offer down. I wouldn’t trade my parents for anything. I love them so much and it saddens me to know we are getting to the end of our journey together on Earth as we get older. Only God knows the future but Father Time seems to move ahead quicker with each passing year. We just have to make the most of each day together and continue to live life to the fullest. ❤️

God also really blessed me with the best partner I could ever hope for who is so intelligent, beautiful, thoughtful and caring. Sharon has been steadfast by my side since 2017 and has never wavered. She is my best friend and soulmate. We really do have a special bond together. I never thought or imagined it would be possible to love again after Jeannine passed away but God knew my pain and grief. I firmly believe God brought us both together even though we were 1000 miles apart when we met. I don’t know where I’d be without my parents and Sharon. I’d probably be in a deep, dark depression and perhaps not even here any longer if I was all alone.  They continue to give me daily support, love and encouragement. Sharon always has a positive affirmation and tells me “25 years or more together”.  That’s what I need to hear to keep fighting and going sometimes.  Hope for the future and our life together. 💕

In conclusion, God is good and I’ve been blessed beyond measure. I have had many medical miracles throughout my life and God continues to save me. I don’t know or understand why I’ve been given this long life and saved many times when all my dear CF camp friends have passed but someday it will all be revealed. I just have to continue to have hope and faith. ✝️

Thank you for reading my blog today and thanks to everyone who has loved, prayed and supported me throughout the years.  It deeply touches my heart and I greatly appreciate it.  Please pray that I will get to celebrate a sixteenth anniversary next year. 🙏🏻

Take care and God bless. 

Gary

Former lung transplant doctor – Dr. Grazia

New transplant lung doctor – Dr. Kumar

Liver transplant doctor – Dr. Asrani

Hospitalized for a intestinal blockage January 2026.

Waving goodbye to my parents and Sharon after their visit.

Carnival cruise 7 day Western Caribbean April 5 – 12, 2026.

Other pictures from the past year 2025-2026.

14th Year Transplant Anniversary

Today is the 14th anniversary of my double lung and liver transplant at Houston Methodist Hospital. I thank God for this life saving miracle transplant. I also thank my donor and donor family for such a selfless gift. I was so sick with my lung function at 17% of predicted and had waited a long and agonizing 9 months on the list. It feels so good to be alive and I’ve made so many great memories over the past 14 extra years. I thank my parents and life partner who have been my rock and supported me through all the stressful and difficult times. It hasn’t been an easy journey and people think, “oh you’re cured because you received a transplant” but that’s not the case. There is always the fear of rejection and other complications. I also want to thank all the doctors, nurses, CNA’s, and therapists at Baylor Dallas Hospital, Methodist Hospital of Houston and Kindred Hospital who played such a critical role in saving my life with such wonderful care. I will always be grateful and thankful to all the excellent healthcare professionals. I have always said those are my heroes; not movie stars and athletes. 

The past year has been very chaotic at times but also very relaxing and memorable. This past year I was admitted to the hospital twice for bowel blockages related to cystic fibrosis. My first admission was late April / early May for one week. The second admission was this past holiday season with admission on December 26 and discharged January 6. Both hospital stays were extremely scary and I was in the worst pain of my life. Bowel blockages are extremely painful and uncomfortable. I had a NG tube inserted up the back of my nose , down my throat and into my stomach and small intestine. The NG tube was hooked up to suction. We prayed each time that the suction would work and remove the blockage; otherwise I would need emergency surgery. I remember talking to the surgeons about my case and they were not optimistic the NG tube would work. Thank God the NG tube and suction eventually removed both blockages but it took many days. Cystic fibrosis patients typically have a blockage called D.I.O.S.

D.I.O.S stands for Distal Intestinal Obstruction Syndrome. My obstruction both times was in the small intestine so it was difficult to treat with commonly used therapy. Thankfully, the doctors gave the NG tube and suction the necessary time to work. 

The second blockage over the holidays got so scary that I was admitted to the ICU for 4 days. My blood pressure had fallen dangerously low and remained low. I required two different blood pressure meds administered by IV that can only be given in ICU. In addition, I threw up 5 or 6 times my first night in the hospital and had aspirated into my lungs. As a result, I had mild pneumonia in one of my lungs and required antibiotics. I was surprised to hear when the doctor told me I was septic. I don’t think I’ve ever been septic in my lifetime. Overall, it was a very scary and traumatic time in ICU. The whole ordeal really traumatized me and I was pretty scared. I did have to wear oxygen for a few days due to the mild pneumonia but overall my transplanted lungs and liver continued to do great. That’s one of the misconceptions about my health that people have. Not only do I have transplant issues and side effects from all the medications I take and possible rejection at any moment but I still have cystic fibrosis. I have diabetes, bowel obstructions, GI issues requiring digestive enzymes and malabsorption (osteoporosis) all because of my cystic fibrosis. It’s no walk in the park and every day is a struggle plus I have neuropathy due to the diabetes and anti-rejection medication called prograf. It’s a lot of stuff but I try to manage everything to the best of my ability and keep a positive outlook but I have my days when I get overwhelmed or get down. 

I was also diagnosed with skin cancer in December. I remember asking the nurse over the phone if I really had cancer.  She said I did indeed have cancer and it was a basal cell carcinoma in two spots on my back. It freaked me out because my biological uncle passed away from melanoma in 2012. One spot was just scraped away and frozen but the bigger spot had to be cut out and required 8 to 9 stitches. The transplant meds (Cellcept) and being immunosuppressed put me at a much greater risk for all types of cancer.  The dermatologist said it was practically a miracle I made it almost 14 years post transplant with no skin cancer yet. Thank you God for protecting me all of these years. I will continue to have semi-annual skin body checks and my Cellcept anti-rejection dosage was decreased in half to minimize the risk of cancer again. 

My family took two cruises the past year. We took one cruise in October for my father’s 80th birthday and just finished a cruise this month for my mother‘s 80th birthday too. Our close family friend, Evelyn joined us in October and my former CF doctor from Houston joined us in April. We cruised on Carnival Jubilee in October and the Carnival Dream this month (April). We had such a great time on both ships. The Jubilee is a new ship with all the new technology like USB ports in the room compared to the Dream which is older with no USB ports and only one outlet in the cabins. Yet, I preferred the Dream because of the atmosphere and ambience and it was much less crowded than the Jubilee mega ship. 

We travelled to Cozumel, Roatan and Costa Maya, Mexico on our October Western Caribbean cruise. This month we sailed to Key West, Florida and The Bahamas (Freeport, Half Moon Cay, Nassau). Both cruises sailed out of Galveston. We had a blast and I took some great pictures. Way too many than I can post here on my blog but I’ll try to pick out a few key pictures from each cruise for your viewing pleasure. I’m excited because we also have another cruise booked for next April right before my transplant anniversary.  I don’t want to jinx it because a lot can happen between now and then. Stay tuned next year to see if we were able to go on that cruise and where we went. It’s going to be exciting too and it might even become a new favorite of mine.

In conclusion, I continue to be blessed beyond measure. God has been so good to me and my family. I have the best parents a guy could ever hope for and I wouldn’t change a thing if I had to do over. My life partner’s love is unwavering and I’m the luckiest man alive to have such a beautiful woman by my side through good times and bad times. It’s fitting this transplant anniversary falls on Easter weekend. My transplant in 2011 took place during Holy Week on a Tuesday and I was moved out of ICU on Easter Sunday. What an Easter to remember and what a miracle to behold. Even though it’s been 14 years there are times when everything in the past seems just so surreal and that it even happened. I was so sick with so much anxiety and everything just seemed a blur in Houston. I can’t believe how fast time has just flown by but I am so thankful too and grateful to still be alive. 

Thank you for reading my blog and thank you for the continued love, prayers and support of this ongoing journey for the past 14 years. I really appreciate it. 

Happy Easter everyone. God bless.

Gary 

13th Year Transplant Anniversary

Today is the 13th anniversary of my double lung and liver transplant at Houston Methodist Hospital. I give all the glory to God for my life-saving transplant due to cystic fibrosis. My donor is my hero and I can’t thank my donor’s family enough for donating their loved one’s organs. I will always be eternally thankful and grateful to them. My parents have been with me every step of my journey and they are my rock and foundation. I love them both with all my heart. They are the best parents in the world and every day I have with them is precious. My dear Sharon has loved and accepted me unconditionally in spite of all my health problems and issues since the first day we met. I’ve dealt with lots of health problems the past thirteen years post-transplant and that doesn’t even count the first 42 years of my life with my CF lungs and liver. I was in the hospital all the time for IV antibiotics due to chronic pneumonia and I had frequent episodes of hemoptysis and GI bleeds. I’ll never forget my CF doctor in 2010 telling me, “I might make it 5 years with my lung transplant if I was lucky.” I do not like it when doctors call it luck but that’s how many of them are taught to think. I also do not like it when doctors tell you your lifespan is nearly exhausted. The average percentage of lung transplant recipients who survive 5 years is only 50%. That’s not considered very good odds when you are the patient but what could I do when my lung function was 17% of predicted pre-transplant and I struggled to breathe. I loved life and I wanted to live longer. I’m so thankful that I continued to fight and took the chance to have my transplant. God has truly blessed me and my story really is a miracle. There had only been 42 lungs-liver transplants performed before mine in the United States and I was only the 4th lungs-liver transplant performed at Houston Methodist Hospital. It was considered high risk and dangerous when I had mine.  It was a miracle I survived the ten hour operation which included multiple blood transfusions and being hooked up to the heart lung bypass machine for the liver transplant surgery.

I think most people think all my obstacles and challenges are behind me now after 13 years of a transplant but that is anything but the truth. I still battle digestive-related cystic fibrosis issues on a daily basis and take digestive enzymes as well as having CFRD (Cystic Fibrosis Related Diabetes). Plus, I also still have to keep a close watch over my transplanted lungs and liver. People wrongly assume that I am out of the woods now that I’m 13 years post and in the clear. The transplant doctors made it very evident to me that I will never be in the clear and completely safe with my transplanted organs. They will always have the ability to reject if my body is not severely immunosuppressed and even then rejection can still happen at any time even if I don’t miss a single dose of medicine. The anti-rejection meds are not a guarantee for a worry free transplant. Therefore, prayer is especially powerful and important because as you can see not even the immuno suppressant meds can afford any guarantee for longevity.

I briefly saw a therapist in 2019 before the pandemic started. I quit seeing the therapist once the pandemic started. I’ve seriously considered going back to get some help. No one really talks about mental health in our society and I rarely ever see anyone post about their mental health issues on Facebook. It’s a taboo subject that no one wants to talk about or address. That’s why I give Simone Biles so much credit for openly talking about mental health during the Olympics. 

I am beyond grateful and thankful to be alive. It feels so good to be able to be able to breathe easy. I used to go to CF camp every summer and fall. All of those CF friends from camp have long since passed away. In addition, a lot of my fellow lung transplant friends are also deceased. Survivors guilt is a very real feeling and emotion and it’s been hard to lose so many friends to a common illness or disease. Am I worthy to be alive an additional 13 years? There are a lot of thoughts that go through my head especially every year when it’s my anniversary. So many people were not so blessed as myself and that makes me sad. I’m very happy for myself but I miss my CF and transplant friends terribly.  God has definitely blessed me beyond measure and I do frequently ask myself, “Why am I still alive?”

On a different note, last November Sharon came home from work on a Friday afternoon not feeling well. She woke up Saturday morning feeling terrible. She took a Covid test and it came back positive. I wore a N95 mask as well as disposable gloves to take care of her. I started having fever and chills on Tuesday and also tested positive for Covid . I had made it over three years since the pandemic started and never caught Covid. I guess my luck wore out. I immediately contacted my nurse and doctor and they scheduled me to come to the hospital on Wednesday through Friday of that week for a IV infusion called Remdesivir. Remdesivir is an antiviral medicine that works against severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). It helps to minimize the symptoms of Covid. I can only assume it worked for me because my Covid never really got serious even though I felt crummy. Sharon and I both eventually got over the Covid after a week. My lung function went down a bit but at least I was never hospitalized nor had any shortness of breath. Thank you God for helping Sharon and I get over Covid . I remember how terrified I was in 2020 on possibly catching Covid. I had a lot of real anxiety even going out to stores and being around other people in 2020. My doctor required me to get the Covid vaccine and boosters. I’d like to think that also helped minimize the Covid symptoms as well as the remdesivir helped too.  

Prior to catching Covid my parents and Sharon headed to the Texas Panhandle for my Dad’s 60th high school reunion in September. My Dad was a graduate of Memphis High School (north of Witchita Falls and south of Amarillo) class of 1963. I always looked forward to visiting my Dad’s hometown when I was a kid. It was extra special to attend my Dad’s 60th reunion and see all of his former classmates. It was also a special trip because it was Sharon’s first time to see the Texas Panhandle and to see my Dad’s hometown. We had a great time and I’m so happy that I will always have that memory. I know it meant a lot to my Dad. That trip will forever hold a special place in my heart. 

I can’t conclude this anniversary blog without bragging briefly about Sharon. Last September her boss gave her a special promotion and title. Sharon was promoted to Lead Aide for her shift. My parents and I were so so proud of her. She had been employed by her company for four years and that included working each and every weekend. That’s a huge sacrifice that most employees are not willing to make for their job and employer. Sharon never complained about working weekends and is one of the hardest working employees at her company. I’m so proud of her and I love her with all my heart. 

I’m looking forward to this October.  My parents, Sharon and I are going on a 8 day cruise out of Galveston. We are going on the new Carnival Jubilee! Yay! The Jubilee started sailing last December. It will be my third cruise and Sharon’s first cruise.  I had originally wanted to go on a cruise in 2021 for my 10th transplant anniversary but we decided against it because of the pandemic. This October will be my Dad’s 80th birthday so it seemed like the perfect time plus it will be Sharon’s birthday too. My Dad and Sharon’s birthdays are only two days apart. We are going to have the time of our lives and October can’t get here soon enough. Who knows? I may even muster enough courage to ride the Bolt roller coaster on the Jubilee. The world’s first roller coaster on a cruise ship. Stay tuned! 

The past thirteen years have just flown by. It really does feel that time continues to get faster and faster. I had always heard as a kid that time goes by faster as you age. Of course I never believed that and I thought people were just being ridiculous . It just seems like yesterday or yesteryear that I was living in an apartment in Houston with my parents waiting on the call for my lungs and liver. I never gave up hope but it wasn’t easy. To be honest, end-stage cystic fibrosis was hell. I could feel myself slowly suffocating and drowning in thick mucus with each passing day . The 9 month wait was agonizing and grueling but I was finally saved and rescued on Tuesday, April 19th, 2011. I’ll never forget that I had CF clinic the previous day on Monday, April 18th. The doctors discussed that day (unbeknownst to me) of telling me to pack my belongings to head home to go on hospice. Thankfully, I never knew about those discussions and that never took place but it gives me chills to think of what was about the take place the following morning at 8:50 am when I received “the call” from my lung coordinator . It changed my life and it saved my life. That day I was given the greatest gift a person can receive. I was given the “gift of life” and with that I was given a second chance and a new lease on life; a rebirth.  I will forever be grateful for that gift and I’m so thankful to be alive and breathing easy thanks to my donor and the miracle made possible with God’s help and answered prayers.  I will never lose perspective on what’s really important in my journey nor will I forget the family, friends and supporters who have been by my side for the past 13 years. Thank you to everyone who has continued to pray for me, support me or has reached out either to me or my parents and inquired how I was feeling. It means the world to me and I will never forget it.

April is National Donate Life month. Be a Hero and register to be an organ donor. 

Thank you for reading my blog. God bless.

Gary 

My 55th Birthday! Blessed to live this long with Cystic Fibrosis. 🙏🏼💜

Sharon went back to school last summer for more medical training. I was so proud of her. She did great! ❤️

Relaxing with two of our cats – Marda and Romeo.

Our sweet cat Marda. She would meow outside our door every morning promptly at 6 a.m. for breakfast. Sadly she passed away last summer from liver failure. We miss her. 😢

Picture with my favorite respiratory therapists and friends. Cindy and Vada took care of me back in the 1990’s when I was admitted to the hospital due to cystic fibrosis.

Sharon and her parents at their favorite restaurant – Taste of Philippines in Garland, Texas. 🇵🇭

My loving, supportive parents at one of our favorite restaurants – The String Bean in Richardson, Texas. A guy could not ask for any better parents. Love them so much. ❤️

Sharon – The woman who puts such a big smile on my face and fills my heart full of love. I thank God for bringing us together. 💕

My Dad (dark blue shirt) and his high school classmates. Memphis High School class of ‘63.

My Dad and I inside the Hall County Museum in Memphis, Texas. The two-headed calf named Robbie was owned by his Grandparents. The calf lived for one week.

Sharon and I saw this sign at a rest stop on our way to Memphis for my Dad’s high school reunion. We had a good laugh. 🤣🐍

Sharon and her sisters Karen and Margaret accompanied me to the grand opening of Yogurtland in Plano. We got so excited when they took our picture for their Instagram page. 😊🍦

Lovely lunch with the beautiful Sharon. Nothing makes my heart happier than to be in her company. ❤️

Receiving an IV infusion (1 out of 3) of Remdesivir when I had Covid.

Easter picture 2024 at our church Christ United Methodist. It was a beautiful Easter service.

Easter 2024 ✝️

Dinner with my love at Chili’s 🌶️

Dinner with Sharon’s family (Jeremiah, Karen and Isaiah) at Red Robin. It was the boys first time to eat at Red Robin. They loved it and we had a great time. 💙💙

Christmas picture 2023 with our nephews Dylan and Cole. Not the best picture of me but it’s good of everyone else. 💙

Family picture with my sister Holly and our youngest nephew named Jameson. He turned 5 on December 5, 2023.

Solar Eclipse 2024! It passed directly over us and the entire D/FW metroplex. We witnessed complete totality. It was truly a sight to behold! Spectacular!

The love of my life! She makes everything worth it and she completes me. God is good and I give thanks for her everyday. 🙏🏼💝

12th Year Transplant Anniversary

Hallelujah! Praise God! Today is the twelfth anniversary of my double lung and liver transplant. It’s such a great feeling to still be alive and breathing twelve years later. Twelve years ago on a Tuesday shortly before 9 am I received the call that a donor was available that matched my needs. My mother answered the phone call. My lung coordinator asked to speak to me and my mom told the coordinator that I was asleep. The coordinator said with a laugh “Well, you better go wake him up then”!!! At the time I had been on the list for over 9 months. I wouldn’t say that I had given up hopes of a match but I wouldn’t say that I was expecting that call on April 19th either. Ironically, I had been to CF clinic the day prior on Monday, April 18th, and there was discussion among a few of my doctors that it might be best to just pack my things up and go back home to Plano and enter hospice. There was serious doubt among some of the staff that there would ever be a match and that I’d receive that “call”. I did not know about that discussion at the time but I did learn about it years later. It’s still difficult to process and fathom that even some of the doctors were beginning to cast doubt and view my transplant prospects as bleak.

My lung transplant doctor had told me a few months prior to April that there had been a total of 3 prospective lung donors for me since I had been on the list but that I had not been called and notified because the liver team felt the donor liver of each was not suitable. Therein lies the extreme difficulty and problem to find two different perfect organs at the same time from the same donor. I must say though that the liver team of doctors always looked out for my best interests and they showed patience in waiting for a perfect match. As a result, I received a healthy liver that immediately started working for me after the transplant surgery. I never turned jaundice unlike some liver transplant recipients after surgery.

Looking back it’s been an emotionally and physically challenging journey, but I’m so glad I pushed through and continued to fight. If anyone is reading this blog that is pre-transplant I urge you to try and get listed and stay strong. Transplant offers the chance for a better tomorrow and a possible better life. Transplant offered me Hope and that Hope is what kept me fighting and pushing daily. People ask “Was it worth it?” and “Would you do it again?” My answer would be – “Absolutely!” To steal a line from one of my favorite movies of all time: “It’s a Wonderful Life”

I have been doing pretty good overall the past year. I’ve had some nagging issues but nothing serious. I have had a lot of headaches this year as well as continued neuropathy in my feet and occasional liver processing pains. I also battle continued fatigue as I seem to get worn out and tire easy but that’s okay. I’m not complaining. My kidney function values continue to fluctuate. Sometimes they are really good and even in the normal range and other times my values are high and out of range. I continue to drink lots of water. The only time I’m not drinking water is when I have my 1-2 cups of coffee daily. My lungs have been feeling good as far as I can tell. It feels so good to breathe easy after struggling to breathe with CF lungs for 42 years. There are things in life that we all take for granted like I take for granted being able to walk, but one thing I don’t take for granted is breathing. That’s for sure! All in all things are going good and I’m trying my best to take good care of myself. I never miss any meds and I’m extremely compliant with doctor’s orders. I guess last year I started taking Prolia shots every 6 months for my bones and osteoporosis. I have weak bones due to CF malabsorption. The Prolia shots increase bone density and make them stronger. The Prolia shot is also supposed to greatly reduce the chance for fracture of the spine, hip and other bones. Osteoporosis is just one of the many problems caused by Cystic Fibrosis.

The pandemic is now officially over. Finally! Yet, I still continue to wear my KN95 when I go out in the public. Both my lung transplant doctor and infectious disease doctor have told me to keep wearing my mask. Covid is no longer widespread but there are still isolated cases of it out and about. My lungs are too precious to take any chances and I don’t really care what people may think of me still wearing a mask. It’s no contest and I’m not that vain anyhow.

Speaking of Covid…… Sharon came down with Covid late last August. She had 5 positive tests over the course of 19 days. Unfortunately, She caught it from one of her clients. I was her caregiver for those 19 days. I fed her, washed her dirty dishes, gave her medicine and administered the Covid tests. I wore a new disposable N95 each day as well as wore new gloves every time I stepped in her room. It really is a miracle that I did NOT catch Covid. I believe that my Guardian Angel was watching over me and protecting me. I should have caught Covid but miraculously I’ve continued to be Covid free 3 plus years and counting. I felt so bad for Sharon as she was completely miserable. She lost her taste, lost her appetite and lost 10 pounds. Not to mention she felt terrible especially the first 10 days of sickness. I’m so very thankful to God that Sharon fully recovered from Covid and is doing good today. Prayers were definitely answered. It was a very stressful nineteen days.

It’s been a difficult time for my family the past 6 months. My Aunt Carolyn (Mother’s sister) had battled depression on and off for over 10 years. She got severely depressed again last summer and stopped eating. She also stopped calling and answering phone calls. Last October we had to admit her to the hospital because she had lost so much weight and was so weak and feeble. She only weighed 73 pounds. She was in the hospital for a week and transferred to a rehabilitation facility. We visited her daily and did all we could including forcing her to eat , bathing her and helping her dress but unfortunately she passed away due to cardiac arrest triggered by poor health and malnutrition. She was only 72 years old. It’s so, so sad. Carolyn was my only aunt. She was always so good to me and my family. She was very caring and thoughtful. I will never forget how she mailed a get well card to Sharon last September while Sharon was battling Covid. She took the time to go buy Sharon a card and mail it even though she was severely mentally ill . She cared about others especially her family. My heart is sad writing about her in this blog. I miss her dearly. She was a great aunt whom I loved deeply. My aunt loved cats and had a cat named Bear. We have adopted Bear into our home. It’s the least we could do for Carolyn. I hope it makes her happy and that she is smiling down upon us.

My parents were very blessed last fall to take their dream cruise with good friend Evelyn from Missouri. My mom had always wanted to visit the Panama Canal. Their cruise included the ports of Jamaica, Aruba, Curaçao, Cartagena (Columbia), Panama, Limon and Cozumel. The cruise lasted 2 weeks out of Galveston on the Carnival Dream. They had to cancel 2 prior cruises due to the pandemic. They had a wonderful time and I was so happy they were able to go on this cruise and that I’m now healthy and stable enough to stay home on my own. My parents made many sacrifices during my 42 years with Cystic Fibrosis lungs and that included taking care of me with an ever watchful eye and not leaving me home alone to go on a vacation . I dealt with the fear of hemoptysis (coughing up blood) for over 25 years (my first hemoptysis was at 16 years old) and it was terrifying each and every time. You never get used to coughing up a cup full of pure liquid blood and not knowing if it will stop or if you will bleed out. It’s terrifying. Trust me on that. That is the primary reason why my parents rarely ever went on trips together without me prior to my transplant along with the need for CPT (chest physiotherapy).

I had a really good past year. Nothing major happened for me nor did I go on any far away exotic trips but that’s okay. I just had a good time staying home with my family and cats. I’m happy and content with my life and I don’t need to try and impress anyone with lavish purchases or expensive vacations. I’m a simple person with simple needs and I’m just thankful to be alive each and every day.

Last spring our friend from Missouri flew down to spend a few days with us. Her name is Evelyn and she was a close family friend to Jeannine and her family. Evelyn was always so nice to me when I used to visit Jeannine in Missouri. I give thanks that she has remained close to my parents and me. We took a road trip to Waco to see Chip & Joanna’s Magnolia Market while she was here. That was a lot of fun and we all had a great time. We also got some beautiful pictures with the Texas bluebonnets. Hopefully Evelyn can visit us again someday or we can meet her in Branson, Missouri (not far from her home).

A week and a half ago was Easter. Sharon works as a caregiver on the weekends so we have not been able to attend Sunday church together since she moved to Texas. Sharon came up with the wonderful idea of using a vacation day to take off for Easter Sunday which was also coincidentally my mom’s birthday, too. I’m so happy she thought of that because it was an extra special Easter to go to church with my parents with Sharon by my side. I will never forget that my transplant took place during Holy Week 2011. As a matter of fact, I was moved out of ICU on Easter Sunday 2011. So as you can imagine Easter has an additional symbolic meaning to me as my own rebirth or resurrection from a certain CF suffocating death. Back in 2011 my Minister called me “an Easter miracle”. No truer words have ever been spoken.

In conclusion, God has blessed me beyond measure. I do not know if I am worthy for such good fortune and continued blessings but I am forever thankful and grateful for the extra “bonus” 12 years of life that have been bestowed upon me. I give praise and glory to God for my good health. All things are possible through Him. I will forever be thankful and grateful to my donor and his family for such a selfless act of kindness and generosity. I hope someday they will stumble across my blog and know how much I appreciate this gift. I’ve done everything possible to take good care of myself and be 100% compliant and honor their son’s memory. Of course I give a big thanks and all my love to my parents, my girlfriend Sharon, and the rest of my family for their undying love and support. They are what keeps me going and pushing forward daily. I owe everything to all the doctors, nurses and therapists who have taken such good care of me since day 1 as a newborn. It’s not just the transplant doctors and nurses that made a difference in my life but also all the wonderful medical staff at Cystic Fibrosis clinic during my lifetime. They did an amazing and miraculous job helping me get to the age of 42 with Cystic Fibrosis lungs. It was well documented that Cystic Fibrosis was the #1 genetic killer when I was growing up. I kept defying the odds. So I really was a miracle patient long before my transplant; especially with all the frequent hemoptysis and pneumonia. The data shows that 50% of all lung transplant recipients make it 5 years post transplant and only 20% make it 10 years post transplant. It would be a safe assumption to say I’m not only a Cystic Fibrosis miracle but also a lung transplant miracle. 🙌

I want to thank all my readers. I greatly appreciate all the love, prayers and support and I especially love all the encouraging comments. Thank you from the bottom of my heart. It’s been a wonderful life and amazing journey. It hasn’t always been smooth or easy but I’m still here with a big smile on my face. I pray I’ll still be here for more years to come writing more blog entries and updates.

Thank you very much for spending a few minutes to read my blog. I hope you found it insightful and enjoyed it. Sometimes it’s hard to know what to write about but I do my best.

Take care and God Bless. 🙏🏻💜

Gary

P.S. Be a Hero. Donate Life. ♻️💚

April is Donate Life month. They had a poster at Baylor Dallas Hospital today 4/19/23.

My amazing Lung transplant pulmonologist – Dr. Grazia. Picture taken on my twelfth transplant anniversary at clinic.

My wonderful lung transplant coordinator – April. Picture taken on my twelfth transplant anniversary at clinic.

Another display at Baylor Dallas for Donate Life month.

Lung transplant clinic 4/19/23 with Sharon. 💚🫁

In a field of Texas Bluebonnets in our town. They are so beautiful every spring.

Had a wonderful time at Magnolia Market in Waco with my mom, Sharon & good friend Evelyn.

Had a wonderful lunch at Chip & Joanna’s Magnolia Table restaurant.

We had a lot of fun at Magnolia Market and I’m especially happy that Evelyn (from Missouri) got to visit it for the first time.

With my sweetheart along the Brazos River in Waco, Texas.

I’m the happiest man in the world with my love by my side. Here we are at one of our favorite restaurants called The String Bean.

Another picture at The String Bean with Sharon & my Dad. The big smile on my face says it all.

Pictured with the best Dad in the world whom I love with all my heart. ❤️

A lovely dinner at Saltgrass with Sharon. Nothing makes me happier than being by her side. I love you so much Sharon. ❤️

Family dinner at The String Bean. We always have the best time.

My parents bought me a Series 7 Apple Watch for my birthday last July. Thank you Mom & Dad. I love you both so much and I love my Apple Watch. 🍎

Sharon and my Dad share a birthday only 2 days apart. My mother and I got them a Nothing Bundt Cake for their birthdays last October! 🎉🎈🎂

Our former neighbors The Osugas came to visit us last fall. They now live on the island of Kauai. It was a special treat that they finally got to meet Sharon.

My dear Aunt Carolyn. We miss her so much. May she Rest In Peace.

My parents on their cruise to the Panama Canal. I’m so happy they were able to take a trip on their bucket list.

Picture taken with my youngest nephew Jameson whom I never would have known without my life-saving transplant. He is a blessing and a great joy to our family. We love you Jameson. 💙

Picture taken in front of our house with my sister Holly and her sons Cole and Dylan. They were approximately 4 and 2 1/2 years old when I received my transplant. It’s been a blessing to watch them grow up.

My Aunt’s memorial service. We love you Aunt Carolyn. ❤️

Easter 2023 with beautiful Sharon. It was an extra special Easter for me.

Easter 2023 with my parents and Sharon. I love them all so much. God really blessed me with the best family and support system.

11th Year Transplant Anniversary

Today is the eleventh anniversary of my double lung & liver transplant at Houston Methodist Hospital. It’s hard to believe that eleven years have passed since I was so sick and couldn’t breathe. My lung function was at 17% and the doctors typically recommend lung transplantation at 30% and below. It was a real struggle and it was definitely my most difficult time with cystic fibrosis. Everyday was a struggle to breathe and I coughed up thick, sticky mucus constantly. This transplant was the greatest gift in my lifetime. It literally saved me not only from death but from having to endure a horrific last few months of life.

 

I give continued thanks to my donor and his family. My donor is my hero. I thank him everyday for this selfless gift of life. I think of him constantly and I wonder how his family is handling his loss eleven years later. He would be 32 years old now.  I’ve been blessed beyond measure and give thanks to God for my wonderful life. I also have the best parents in the whole world. They continue to love and support me . They are amazing and are my rock and foundation. I love them so much.   I’m also so blessed to have such a beautiful, intelligent, and charming girlfriend in my life. Sharon brings me so much happiness each and every day. Even the most boring task or chore becomes fun as long as she is by my side. I love her to the moon and back. 

 

The past year has had some ups and downs. I had a lot of testing last year to try and figure out the organizing pneumonia and nodules. My doctor did an amazing job researching the potential culprit that was causing my problem. The lung team initially thought I had chronic rejection but were baffled because my lung function was still stable in spite of a troublesome looking chest CT scan. It turns out that an anti-rejection medication called Rapamune can cause nodules after long term use. I was on Rapamune for 9 years. It was a very stressful time for my family and me as we waited for the doctors to figure out what was happening.  Chronic rejection does not have a good prognosis and is very difficult to treat. That is actually my biggest fear.  I try not to worry about it day to day but the thought of rejection never leaves my mind. There was a huge sigh of relief after Dr. Grazia said the Rapamune caused the problem and that I would be okay going forward.  Dr. Grazia stopped the Rapamune immediately last spring and started me on a different anti-rejection medication called Cellcept.  I take 500mg of Cellcept twice a day.  I’ve taken it for a full year now and it seems to be doing a good job. My lung function has been stable the past year and my X-ray has improved. 

 

However, I received more troubling news during my annual checkup. My liver transplant doctor told me that my abdominal ultrasound revealed that I had portal hypertension and fatty liver. I was in complete shock and couldn’t believe it. How could I have a fatty liver if I had lost so much weight a few years ago?  There was a time I was up to 178 pounds back in 2017 before I started exercising and changed my eating habits. I got down to 145 pounds and have maintained it for years now. The doctor said I only have stage 1 fatty liver but it’s still very concerning and troubling. I’ve tried so hard to take care of these organs, including my liver. I have never even had a sip of alcohol in my 11 years post transplant. That’s how serious I am about taking great care of this gift I received. All I can do is to pray about it and do my part with diet, exercise and maintaining a strict no alcohol policy. 

 

I’ve also been dealing with a lot of neuropathy nerve pain in my right foot for the past 3 to 4 months. It’s been excruciating at times. It’s not just the sole of my foot but also my toes. It is sharp nerve pain that comes and goes without warning. I’ve dealt with mild neuropathy ever since my transplant in 2011. Everyone says it’s from the diabetes but I’m still convinced it’s from the anti-rejection med called Prograf. I never had neuropathy until I started taking Prograf and the neuropathy came on immediately afterwards. In addition, I have very good control over my diabetes. My last A1C was 5.6 which is a very good average glucose for the past 3 months.  I talked to Dr. Grazia, my lung doctor, about possibly starting a new medicine called Gabapentin. Gabapentin is primarily used to prevent seizures but can also be given to help with neuropathy and nerve pain.  Dr. Grazia agreed to start me on the Gabapentin to see if it works. I’m currently taking it 3 times a day at the lowest starting dose. Please pray the Gabapentin works for me and I get some relief. I’ve been miserable with this nerve pain and extremely uncomfortable. 

 

I went to lung transplant clinic on April 6th, 2022 and received a good checkup. My lung function is stable and slightly better than my January visit. My lungs sound good and my chest X-ray looks good, too. My kidney function is also better than my January visit. I’ve really been trying to drink water on a regular basis the past few years. Prograf (anti-rejection medicine) is toxic to the kidneys and impairs kidney function over long term use. I currently have stage 2 kidney disease. I was very thankful and relieved to receive a good checkup especially after such a bumpy ride last year. I always go into my doctor visits cautiously optimistic for a good checkup but I realize there are surprises sometimes. 

 

I’ve been getting out more and more as the pandemic wanes. It feels good to get out and get back to living and enjoying life. I still wear a KN95 mask everywhere I go in spite of the CDC dropping the nationwide mask mandate. My lung doctor and my infectious disease doctor both said to continue wearing my mask even though I’ve been vaccinated.  I had my fourth vaccine shot (2nd booster) in early March. My parents and Sharon also got vaccinated and had their booster shot. My parents, Sharon and I been very fortunate and blessed that we have not had Covid thus far. I don’t live in fear of it but I am aware that I’m highly susceptible to getting it and just have to be careful and use good judgment. 

 

We had an exciting summer last year when Sharon’s family moved here from California. Her family had been wanting to leave California due to the high cost of living there, plus they all missed Sharon. They had been apart for almost two years. Sharon was very excited they moved here and I’ve really enjoyed their company and getting to know them better. I look forward to spending the rest of my life with them. They are a blessing in my life along with Sharon. Sharon and I recently celebrated five years together. It’s been the happiest five years of my life. We plan on growing old together and I pray that happens.

 

I have been staying extremely busy since Sharon’s family moved here. No one in the family drives except the brother-in-law and he is busy at his two jobs.  The parents don’t drive, Sharon’s sisters don’t drive and Sharon doesn’t drive.  In addition, Sharon has two younger nephews.  I have been the full-time Uber/Taxi service for the family.  I take the family to the doctor, dentist, grocery store, Walmart, and more importantly school and work.  As a matter of fact, I take Sharon and her sisters to and from work 7 days a week (since their work schedules overlap).  The alarm is set for approximately 6 a.m. each morning. I also take and pickup the youngest nephew to and from school each weekday.  It’s a lot of work and it’s tiring but it’s been fun.  I’m proud of myself for not forgetting and for always being on time. I enjoy helping Sharon’s family. They moved here not knowing anyone but my family. It’s given me a sense of responsibility and purpose. It’s a way I can do a good deed and give back. 

 I look back on my life and reflect on how blessed I’ve been in spite of being diagnosed with the #1 genetic killer as a newborn baby in 1968. Cystic fibrosis has been hell at times and very scary especially when I was end-stage. It’s amazing and hard to believe all the medical obstacles I’ve overcome during my lifetime. There is no doubt in my mind that I’m here because God saved me countless times from death even before my transplant occurred. Of course, I have a lot of questions why I’m still a survivor when so many of my cystic fibrosis and transplant friends are deceased. In addition, I deal with a lot of survivor guilt. I’m very happy and thankful to be alive but it hasn’t always been easy from a psychological standpoint. 

 

I’ve been the luckiest person on Earth to have the best parents ever. People have no idea how much my parents have sacrificed during their lifetime to take care of me.  It’s not easy having a child with a terminal illness and being told they would be lucky to reach the age of 5. They did everything possible to keep me alive including relocating to Houston for 17 months to give me another chance at life and doing CPT (Chest Physical Therapy) on my lungs after all my aerosol treatments. My parents used to cup their hands and clap on my lungs (CPT) in different positions in an attempt to get gravity to help drain the thick, sticky mucus from my lungs. That was performed two, three or sometimes four times a day after every treatment as a child as well as an adult pre-transplant. The CPT was very tiring on my parents but they never missed a treatment. They did everything possible to help keep me alive.  I owe everything to my parents for these fifty three years and I love them so much. I get sad sometimes because time is going by so quickly and we are all starting to grow old.  I don’t know where the time went. It seems like only yesterday that my Mother and I were riding in an ambulance down interstate I-45 from Dallas to Houston in June 2010 to start the transplant evaluation process. Time really does fly. It seems like only yesterday. 

 

I would like to thank everyone who has read and followed my blog the past eleven years. Thank you very very much. Thank you also for all the supportive comments especially during those difficult days in 2010 and 2011. They really helped lift me up when I was so scared and depressed. I never would have guessed and imagined that I’d still be making blog posts eleven years later. I’ve been very blessed and just pray I have many more years with my parents, my beautiful Sharon, family and friends. 

 

Thank you and God Bless. God is good. 

 

Be a Hero. Donate Life. 💚♻️

 

Gary ❤️

Edited with BlogPad Pro

10th Year Transplant Anniversary

It’s hard to believe but today I celebrate the tenth anniversary of my double lung and liver transplant at Methodist Hospital in Houston, Texas. It’s been a roller coaster ride at times but overall it’s been the most wonderful ten years I could ever hope for. I give all the glory to God for my miracle saving transplant. I felt His presence the day I received the call that a match had been found. I know He helped guide the surgeon’s hands that day to perform a perfect surgery with no complications. I can never repay the gift I received from my donor but he is my hero and I am forever grateful for his selfless act of organ donation.

My parents have always been my rock and foundation. I wouldn’t be here today without their love and support. They have always done everything in their power to help and protect me. Cystic fibrosis is a horrible disease and it also takes a huge mental toll on the patient and the entire family. My family has been under incredible amounts of stress even before I was diagnosed with end-stage cystic fibrosis. I almost died numerous times from either bleed outs or from pneumonia. It’s safe to assume that I’ve been a living miracle even before my transplant. I almost died as an infant at one day old due to meconium ileus as I had an intestinal blockage and had to have emergency surgery as a newborn. I caught double pneumonia at 4 years of age and almost died from it. The doctors repeatedly told my parents I wouldn’t live past age six and definitely not to teenage years but I continued to defy the odds and the medical experts. God continued to bless me with more life and more years and now I’ve reached an age that seemed impossible when I was diagnosed with cystic fibrosis in 1968. I’m now very proud and blessed to say that I’m now into my 50’s and loving every minute of it. I try to enjoy all the small things in life that most take for granted starting with the ability to breathe easy with no distress. I also love the fact that I do not cough anymore after spending the first 42 years of my life coughing nonstop and persistently. I used to live on cough drops and used to be so embarrassed of my cough in places like school, church and the library. It was extremely stressful and very uncomfortable when people would look over at me coughing like I had the plague or something. Thankfully the days of my embarrassing cough are gone all thanks to my wonderful and perfect donor lungs.

The past ten years have just been amazing and it’s hard to eloquently put into the right words what this transplant has meant to me. I remember discussing in 2010 the possibility of going for a transplant with my doctor. He did not discourage nor encourage the idea but he let me know the statistics so I was pretty informed of the prognosis and possibilities. He let me know (and it’s a known fact at all the lung transplant centers) that I had a 50% chance to live 5 years from the time of my transplant. Let me tell you. 5 years may not seem like a lot but it sounded pretty good to me when my lung function was 17% and I was basically home bound 24/7 on 5 to 6 liters of oxygen. End stage cystic fibrosis was a horrible existence and I wouldn’t wish it on anyone. I never really understood how bad it was until I walked in those shoes. Ultimately, I decided I’d pursue a transplant and put my faith and trust in God to bless me with an additional 5 years or more. It turned out to be the best decision I ever made and I’d make that decision again if I had it to do over. I’m just so blessed and I’m just so thankful. There have been so many prayers from family, friends and even complete strangers who read this blog. I thank everyone for all the prayers over the past ten years. It means so much to me.

I’ve gone to many different hospitals throughout my lifetime. They have all been instrumental in helping me get well. I spent so much of my life in a hospital that growing up my heroes were not necessarily sports figures or celebrities, but instead my heroes were the doctors, nurses and respiratory therapists that took such good care of me. They have always been the people whom I look up to and continue to admire and respect today. There were so many times when I felt down or scared but the medical staff at the hospitals held my hand and reassured me that it was going to be okay. I’d like to mention three hospitals in particular that either played or currently plays a significant role in my transplant journey.

Methodist Hospital in Houston is a wonderful hospital that took a chance on a 42 year old cystic fibrosis patient back in the summer of 2010. Dr. Harish Seethamraju believed in me to be a good candidate for a very high risk and complicated multi-organ transplant. I can never repay him or the entire medical staff in listing me for a life-saving transplant. I’m forever thankful I was given the chance to continue living and make more memories here on Earth. I was not ready to die and I was willing to fight harder than ever before. Everybody at Methodist Hospital was wonderful and I received the best care possible.

The second hospital that played a key role in my transplant journey was Kindred Hospital in Houston. I was a patient there for 3 months prior to my transplant and for one month post transplant recovery. I was very sick In January 2011 and Dr. Allen came up with the great idea of admitting me to Kindred Hospital to help me get stronger for the upcoming transplant whenever it happened. I was really struggling with my health and Kindred has a very good physical therapy and rehab program to make patients stronger. Kindred really made a difference in my health and all of the staff were just wonderful. I even met some wonderful therapists and nurses there and we have become life-long friends ever since.

The final Hospital that has played a key role in my transplant journey is Baylor Scott & White Hospital of Dallas. I used to go to Baylor Hospital from 2000 to 2010 but left Baylor in 2010 to go down to Methodist Hospital in Houston for the transplant evaluation. Baylor is an exceptional hospital and I was heartbroken to leave it in 2010. I made the decision to transfer my care back to Baylor in August 2013. Baylor has a great lung transplant program and I felt they could administer to my needs and keep a better watch over my health, lungs and liver closer to my hometown than a hospital 5 hours away. The doctors and nurses at Baylor continue to excel and are phenomenal. They haven’t missed a beat since I first started going there in spring 2000. I cannot thank the Baylor staff enough for keeping such a close watch over me the past 7 1/2 years (2013-2021). Thank you to all the medical staff that have cared for me throughout my life. They are my heroes and I can never thank them enough. Each one of them has made a difference in my life. Thank you thank you thank you!

The past year has been especially stressful as a transplant patient because of Covid-19. Of course the pandemic has affected all of us around the world and has changed how we live our lives. I have taken all the necessary precautions and safety measures in an effort to stay well. Thankfully I have not caught Covid, nor have my parents or Sharon. I did go out the past year and tried to have some sense of normalcy in spite of these crazy times. I wore a N-95 or KN-95 mask as well as disposable gloves. I know everyone has been frustrated with the past year and I was no exception. I wanted so badly to go on a short trip and do something fun. Unfortunately, that didn’t happen. It’s ok though. I’m just thankful to still be alive and Covid-free. I did get the Pfizer 2 shot COVID vaccine in February. My parents also received both shots. I didn’t have any problems with that first shot but I had some side effects with the second shot. I had chills and body aches for 24 hours and extreme fatigue for a week afterwards. It’s a bit of a mystery but my liver function lab values significantly spiked after the second shot. My liver doctor said the vaccine probably wasn’t to blame but the timing is strange. Thankfully my liver function values have returned back to a normal range but my doctor was definitely alarmed by the results. He even called me personally on his own cell phone to discuss the situation and ordered an abdominal ultrasound. I guess I’ll never know what made my liver to behave so abnormally. Nevertheless, I’m glad I got the vaccine shots and I feel a bit more protected. My doctor did say I probably only have 40 to 50% protection because I’m immuno-suppressed and that affects the effectiveness of the vaccine. I’m eagerly looking forward to doing some fun things later this year. I just wish I had more exciting news and stories to share of the past year on this special anniversary. I know you understand though because we all had to make changes in our lives and sacrifices. Hopefully the upcoming post-transplant year will be much more exciting and I’m able to make some more wonderful memories.

I continue to have some ongoing transplant issues that are still not resolved. I still have nodules in my lungs and they have grown in size. They were first discovered during my annual chest CT scan in June 2019. Now my chest X-ray indicates that I also have organizing pneumonia in my upper lobes. I’ve had a lot of lab work, tests and doctor visits this year due to these issues including a bronchoscopy. Thankfully the bronchoscopy came back negative for cancer, rejection and other bugs but confirmed the nodules and pneumonia. My understanding of the organizing pneumonia is that it’s infiltrates (particles) in my lungs that shouldn’t be there. My doctor has spent a lot of time trying to figure out why the nodules and pneumonia appeared in the first place and how to treat the problems and make them disappear. I’m currently on a month long prednisone steroid burst in an effort to get rid of the pneumonia. One of my anti-rejection meds has also been changed. The doctors are always hesitant to change the anti-rejection meds especially if they have been working so well for so long. Only time will tell if the med changes fix the problems in my lungs. I go back to see my lung transplant doctor at the end of this month. I try not to think about what’s going on and instead just put my trust and faith in God that everything will turn out okay and that I’ll be all right. I’ve been really impressed with my new doctor. He is very thorough and detailed going over my test results. I know I am in good hands. My lung transplant coordinator has also been very supportive and helpful with these ongoing issues.

Please keep me in your thoughts and prayers that my lung issues improve and that my lung function continues to remain good. Thank you for reading my blog and following my transplant journey. It’s all still a bit surreal even ten years later. I’ve been blessed beyond measure and I’m just so thankful and grateful. I’m looking forward to the year ahead and I’m excited to make more memories with Sharon, my parents, my sister, family members and friends. It’s been a difficult and scary year with the pandemic but I believe that better days lie ahead for all of us. I know everyone is ready to get back to a “normal” life. Just keep the faith and believe! Thank you and God bless.

Be a Hero. Donate Life. 💚💚♻️♻️

Gary

9th Year Transplant Anniversary

Hallelujah! Today is my 9th double lung and liver transplant anniversary. I thank God every day for this Gift of Life and the miracle I received from Him.  I’ve been blessed beyond measure to celebrate and live nine extra years thanks to my donor and a selfless act by him and my donor family.  There have been obstacles along the way but it’s been worth every minute to have extra time with my family and friends and I would do it again. Currently, the most pressing issue is trying to stay well and not catch COVID-19. Thankfully everyone in my family is doing well and no one has gotten sick.  I wear a mask and gloves when I do go to the store but that is very infrequent. I only go to the store when I need more supplies or food. Please keep me in your prayers that I can get through this pandemic unscathed. The prognosis would not be good if I caught it. 

Overall, I had a good 2019 year. My parents and I went to Lubbock in June for a Robertson family reunion. It was my first time to visit Lubbock and I enjoyed it in spite of the fact everyone says there is not much to do in Lubbock. Personally, I liked Lubbock.  We drove around the Texas Tech campus and also went to the Buddy Holly museum and that was a lot of fun.  We drove to Amarillo after visiting Lubbock and went to see the Cadillac Ranch as well as visiting my Dad’s good friends whom he grew up with.  Later in the summer my parents and I went to another family reunion in Waco to see the Davis (father’s mother) cousins.  It’s always a lot of fun to see my dad’s first cousins and my second cousins. We followed the reunion with a trip to Chip and Joanna’s Magnolia Market at the Silos, also in Waco. It was extremely crowded and extremely hot. My mom almost passed out from heat exhaustion but she had a lot of fun and thoroughly enjoyed the homemade cupcakes. 

My parents and I experienced a very sad event in early August (after our trip to Waco) when our rescue cat named Daphne came down sick and we had to put her down due to liver failure. There wasn’t a dry eye in the house and the loss of our cat really took an emotional toll on us. Daphne was a very sweet and affectionate tortoiseshell cat that was the only “lap cat” that we have ever owned.  We will never forget Daphne and her memory will always be in our hearts. 

Later in August we got in touch with our neighbor (whom we had adopted Daphne from) to help us find another tortoiseshell cat that needed a good home. Our neighbor Sondra found us a sweet tortoiseshell female at a foster home that she helps support. It turned out that the female cat had a brother that needed adoption too so we went ahead and adopted them both. We were only looking for one cat (we’ve never had more than one before) but my mother said that we couldn’t separate and break them up. So now we have two lovable and adorable young cats thanks to my mom’s caring heart. We named the girl cat Bella and the boy cat Romeo. They are both sweet cats but Bella can be a pill. Haha I really think that’s only because they are very young (2 years old) and very playful. 

September was a very exciting month because my girlfriend Sharon moved to Plano, Texas from Los Angeles. We are both very excited to start a new chapter of our life together here in Texas. Sharon loves Texas and is very happy to be here. God has blessed me again with Sharon in my life and made me so very happy. I love her very much and look forward to spending the rest of my life with her. 

Things got a little crazy in the fall with my transplant and health. I received a good checkup with the lung transplant doctor the end of August but my kidney function was elevated. As a result, the doctor told me to stop taking my prograf (main anti-rejection drug) at night time. I remember making a comment to the nurse that I was concerned and wasn’t sure that was a good idea. Fast forward to September and again in October when my nurse called me alarmingly to let me know that my Prograf levels from the lab work came back undetectable. The reason that’s a big issue is because without the recommended level of prograf in my bloodstream I’ll go into rejection and die. It’s a fine line to have enough of the medicine in my bloodstream to prevent rejection but not too much that will damage my kidneys. Prograf is very toxic to the kidneys. It’s very, very important that I take my medicine on time and take the right dosage to maintain a desired level of medication.  The good news is my prograf level finally got back to the desired level but it took over a month as well as having to increase my prograf dosage. Thankfully my lab work has been stable the past few months. 

I had another scare in October and November when I caught a cold in October and it went into pneumonia in November. As a matter of fact, I received quite a shock when my Primary Care Physician called me on Thanksgiving morning to let me know that my X-ray showed I had the early stages of pneumonia in my upper lobes. I was very surprised because I felt good and had no symptoms but the pneumonia continued to persist into December.  I saw one of the lung transplant doctors in December and he diagnosed me with chronic rejection based on a recent CT scan and what the data showed.  All of the doctors in the department met to discuss my case and re-examine the data. Much to my relief the doctor called a few days later to apologize that it was a misdiagnosis and that I did not have rejection. Whew! That was a scary time in my life. Rejection is one of the biggest fears for a transplant recipient.  A lot of family and friends prayed for me during this stressful period and those prayers were answered. I thank God that I’m still doing good and to the best of my knowledge do not have rejection. Praise the Lord!

A lot of my blog’s focus over the years has naturally centered around my transplant and how those organs are doing but I also have another issue that I live with on a daily basis. I may have mentioned a few times in the past that I was diagnosed with CFRD (Cystic Fibrosis Related Diabetes) in July 2010.  It’s been a daily struggle the past ten years but I think I’ve done a pretty good job maintaining my diabetes and keeping it in check. For the past 10 years I’ve given myself a shot of long-acting insulin every morning when I wake up as well as additional shots of short-acting insulin with each meal and snacks.  I’ve also had to track my blood sugars daily using a meter and by pricking my finger with a lancet. It’s not any fun and to be honest; diabetes is a real pain.  I try and keep a close watch on what I eat and drink but I still battle high and low blood sugars. Sometimes I wake up at 3 am with a blood sugar of 50 or thereabouts and get myself a glass of juice and fix a peanut butter and jelly sandwich. I decided to transfer my care last summer to a endocrinologist (diabetes doctor) in my hometown of Plano because diabetes care requires a lot of doctor visits and felt it would be much easier on me and my parents than having to drive to downtown Dallas. I love my new doctor. She is really nice.

Sharon was watching television a few months ago and saw a commercial for a CGM (Continuous Glucose Monitor) and thought it might be useful for me to try one and that it could really help my diabetes management. She knows how much I hate pricking my finger 4 or 5 times a day. I asked the doctor about getting a CGM in February and she told me that a lot of her patients have had great results using a CGM. She recommended the Dexcom G6 and I started using it at the end of February. The technology is just amazing. A little needle is placed under my skin which in turn is attached to a transmitter. The transmitter sends to my IPhone what my current blood sugar is without having to prick my finger anymore. I just love it!  It’s so convenient how I can just look at my phone anytime I want to get my blood sugar. It’s also waterproof so I can take a shower or even go swimming. It also has audio alarms that go off if my blood sugar is too high or too low which is really nice. There are a few negatives and it’s not perfect. The sensor which contains the needle has to be replaced every 10 days and the transmitter has to be replaced every 3 months. In addition, sometimes the sensor has trouble reading the blood sugar and won’t work for a few hours but thankfully  that hasn’t happened very often. The new CGM has been a real blessing in my diabetes care. Diabetes management is a full time job and takes a lot of work but thankfully I don’t have to mentally remember to take prick my fingers 4 or 5 times a day anymore. That’s really helped me and sometimes it’s the smaller things in life that are our biggest blessings. 

I had a very nice Christmas and New Years with my parents and it was especially nice and meaningful to have Sharon here to celebrate with me. My parents bought tickets for all of us to go see the Gift of Christmas at Prestonwood Baptist Church in Plano, Texas right before Christmas.  I had seen the performance before and always loved it but I was especially excited for Sharon to finally see it. It was a great gift from my parents and Sharon had the best time ever and as an added bonus my mother got great seats. It’s a special memory with my parents and Sharon that I’ll never forget.

The first part of 2020 has been pretty uneventful besides the national news of the pandemic. We are just trying to stay well and stay inside. All of my doctor visits for last month and this month have been cancelled. I’m not sure yet if I’ll be able to have all my yearly testing as part of my annual checkup. I usually start the annual testing in May and have my lung transplant  doctor visit in June. I guess no one really knows and we will just have to wait and see . I hope and pray this pandemic passes soon for everyone’s sake as well and I can keep my annual checkup on schedule. Let us all pray this is over soon. It’s so hard to stay inside all the time especially now that spring is here.

In conclusion, I’m very very thankful to still be alive and overcome all the obstacles and adversity. I’m thankful to God and my donor and donor family for this transplant as well as my parents who sacrificed a lot throughout their life to keep me alive.  I’ve been blessed to have the best parents in the world and I love them with all my heart. I’ve had a great life thanks to my parents and of course God. There have been countless doctors, nurses, respiratory therapists and physical therapists during my journey that have taken great care of me and whom I owe a debt and gratitude to for all that they have done for me. It’s hard to believe that this time next year will be my 10th transplant anniversary!!! Where did all the time go?? Time really does fly by.  I pray that I’ll still be here to update and celebrate with my readers next year. Thank you everyone who takes the time to read my blog annually. I really appreciate it. I also appreciate all the nice comments of support posted on my blog over the years. I’ve read every comment since I started this blog in 2010. Thank you also for all the prayers, love and support. Take care everyone. Hope to talk to you next year. God Bless. 

Gary 

Easter 2019 at CUMC Plano, Texas

 

Easter egg hunt for my nephews Cole & Dylan 2019.

Riding around the farm on the ATV with my Dad: April 2019

Statue of Buddy Holly just outside museum in Lubbock, Texas: June 2019

 

Cadillac Ranch along Route 66 in Amarillo, Texas: June 2019

Enjoying my free mushroom burger at Red Robin for my 51st birthday July 8, 2019.

 

Visited the Audie Murphy museum in Greenville, Texas: July 2019

Visited Chip & Joanna’s Magnolia market in Waco, Texas: August 2019

Picture taken with my Dad’s first cousin Dub at the annual Davis family reunion: August 2019

 

brother Romeo & sister Bella in their new Forever Home: August 2019

We all attended my nephew Cole’s soccer games last fall. 9 month old little brother Jameson attended too: September 2019

My best friend from high school; Brian visited me in October from Wisconsin. I had not seen him since 2009.

 

Free Birthday dinner for my sweetheart Sharon “Mushi” at one of our favorite restaurants called String Bean in Richardson, Texas: October 2019.

 

We all attended the State Fair of Texas for my Dad’s birthday on October 17, 2019. Sharon loved the Fair and especially the Fletcher’s corny dogs.

 

My new fur babies – Romeo & Bella. They are a lot of fun and it’s been a blessing to have them in our home: November 2019

 

Thanksgiving 2019 with my sister Holly’s family.

 

Picture of my sister Holly and Sharon taken Thanksgiving 2019 at Holly’s house.

 

Christmas themed picture taken at Prestonwood Baptist Church in Plano, Texas for the Gift of Christmas show: December 2019

Family picture for my Mom’s birthday on April 9, 2020.

 

 

 

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8th Year Transplant Anniversary

Today marks the eighth anniversary of my double lung and liver transplant at Houston Methodist Hospital. Eight years ago my transplant occurred a few days before Easter. Today is Good Friday and once again my anniversary falls during the Holy Week. Eight years ago my minister called my transplant an “Easter miracle”.  It really was a miracle that I survived the surgery and fully recovered. I was so very close to death numerous times while my lung function was 17%.  It was a daily struggle just to breathe, but thankfully I received the “call” that the doctors had found a match for me. The transplant has given me a second chance at life: a chance to be reborn with a new beginning. I remember that day like it was yesterday. It was a Tuesday and I had just been to see my doctor at CF clinic the day prior. I received the “call” shortly before 9 a.m. and I was wheeled into surgery around 3 p.m.  It was the best feeling to wake up the next morning with new lungs and to be able to breathe effortlessly. I give God all the glory for my “Easter miracle” life-saving transplant. He has blessed me beyond measure. I’m so grateful and thankful to my donor and donor family that I’ve been given more years thanks to their selfless decision to donate.  I’m also very thankful to all the doctors, nurses and therapists who have provided such great care over the years. 

 

My donor lungs and liver continue to function well and are doing great. I’m still doing a good job controlling my diabetes but it’s a daily chore. I caught Influenza type A at the end of January. It was really a bummer because both my father and I probably caught the flu from someone sitting in the booth behind us at a Dallas restaurant. I can’t believe how some people can be so inconsiderate and put other people at risk with their careless decisions and selfishness.  The flu symptoms lasted about a week. I’ve had to visit my doctors a few extra times because of the flu, as well as have additional lung function tests to make sure my lungs are still okay. My transplant nurse explained that having the flu puts me at high risk for rejection afterwards. That is why it’s so important for me to stay well and to not get around sick people. Please keep me in your prayers that my lungs continue to do well and that I can avoid any rejection.

 

My lung transplant doctor in October told me that I needed to lose weight. I weighed 178 on the hospital scales which is a B.M.I. (Body Mass Index) over the normal range. It’s been a constant struggle to keep my weight in check since my transplant. I take prednisone everyday and the prednisone increases my appetite. I talked to some friends for advice and did some research on how to effectively lose weight.  I’ve cut out a lot of sugar and carbohydrates and switched to a mostly vegetable diet. I also stopped having a late dinner and started a daily exercise program. I’ve been on my diet and exercise program for 6 months now and I’m happy to report that I’ve lost over 25 pounds. I still have a little more to go, but I’m really proud of myself for maintaining motivation and discipline to finally lose weight. It’s a great feeling and self esteem boost to see what I have accomplished. 

 

When I was born in 1968 I had emergency surgery as an infant to save my life. I had something called meconium ileus that was caused by cystic fibrosis. That was only the beginning of a difficult road ahead. My parents were told I wouldn’t live past 5 or 6 years old. So to celebrate my 50th birthday last July was nothing short of a miracle. My parents never thought their son would live to be 50 and I didn’t either.  However we always hoped and prayed that I would be blessed with a longer life than predicted. I had a wonderful birthday party celebration with my parents and my Sunday school class. It’s a blessing to be 50 years old and I realize how blessed and fortunate I have been in spite of being born with cystic fibrosis. Most all of my CF friends growing up never got the chance to turn 50 and it still hurts me that they were not around to celebrate my milestone last July. I miss them all dearly and sometimes I deal with “survivor guilt” and ask why me. I do feel though that my friends were smiling down on me last July and they were with me in spirit to celebrate my 50th birthday. 

 

I’ve had a great time the past year and having my love Sharon in my life has made it extra special. I really enjoyed all the times that Sharon came to visit me.  We always have so much fun together and make great memories. She is so amazing and I love her dearly.  I look forward to spending the rest of my life with her. My life is happier, more joyful and more complete with Sharon in my life. I am forever grateful for her unconditional love and support. ❤️

 

My parents and I took some Texas road trips the past year. We went to Fort Worth in May, along with Sharon to attend a Robertson family reunion. That was a lot of fun meeting my relatives and hearing stories about my cousins. Sharon had a lot of fun too, and we even got the chance to visit the world famous Ft. Worth Zoo where I saw the white tiger.  My parents and I traveled to Waco in August to attend the annual Davis (my father’s mother’s maiden name) family reunion. We had a great time and I enjoyed seeing my cousins. It’s always a joy and treat to attend the Davis reunion. We drove to the Texas Panhandle (Memphis, TX) In September for my dad’s high school reunion. I always have so much fun going back to my dad’s hometown and seeing all his high school classmates and friends. His high school class made me an honorary member when I was waiting for my transplant in 2011. They are so kind and sweet and a special group of people.  We also watched the Hall County parade that weekend and it was pretty cool to witness. The parade had that small town U.S.A. feeling to it on the red brick town square. After the parade we visited the Hall County Museum to see the two-headed calf that had been born on the John Robertson farm in 1921.

 

We had an exciting addition to our family last year.  My third nephew was born this past December on the 5th. His name is Jameson River Stanford. He is a healthy baby boy and another gift from God. He is a handsome and very cute baby with blue eyes just like his mother.  He is a joy to be around and is so well behaved. He loves to smile and laugh and move his legs to the music. We all went out for my mother’s birthday last week and I don’t think Jameson cried once at the restaurant. That’s amazing for a 4 month old baby. I’m very happy for my sister’s entire family. He is a real blessing. 

 

I’ve been so blessed with more years on this Earth. I call it bonus time because I would not be here today writing this blog and updating you (my readers) if it had not been for God, my donor, his family, my doctors and nurses, my family and friends. I know It’s all in God’s hands, but we do have a part to play in our existence. He gives us free choice and free will to make the right decisions. I feel that I’ve done a good job throughout my life making wise and smart decisions. I like to have fun and enjoy life like anyone else, but I try not to lose sight there is always room for improvement as well as to be a compliant patient at all times. For example, my Sunday school class all know not to expect me at church if it’s raining and that I keep a low-profile during flu season.  I do not want to take a chance on getting pneumonia or the flu. I’ve tried to live smart. I have a friend who always says, “God gave you a brain. Use it!” I never lose sight of that. I hope my donor is looking down and approves of my decisions and that I’ve displayed how much I cherish and respect this gift that I have received. 

 

In closing, I want to personally thank you – my readers – for still reading and following my blog. I sincerely hope you enjoy reading the annual updates and know how much I appreciate the prayers and support. I will never be in the clear or out of the woods. There is always the chance for rejection so please keep me in your thoughts and prayers. I would have never guessed when I started writing this blog in 2010 that I’d still be writing in 2019. God is so good and I thank Him for all the blessings that flow unto me. It’s been amazing and still a bit surreal even eight years later. 

 

Have a Happy Easter everyone and please sign up to be an organ donor. April is the official Donate Life month. Thank you and God Bless. 

 

Gary  

Fort Worth Zoo with Sharon. Enjoying the giraffe exhibit.

My parents with Sharon at the Ft. Worth Zoo.

My father and Sharon at the famous Joe T. Garcia’s Mexican restaurant in Ft. Worth

Sharon and I really enjoyed Joe T. Garcia’s. The food was delicious.

Sharon and I in front of my house. She looks so beautiful.

Lab work as part of my annual transplant check-up.

My 50th Birthday cake. What a blessing to celebrate.

Family group picture taken at my sister’s gender reveal party.

Sitting in my new 2018 Hyundai Santa Fe. I’ve always wanted an SUV.

My mother thought this was a funny sign so we just had to get a picture with it. Only in the Texas Panhandle. 🐍😂

Enjoying the Hall County Parade in Memphis, Texas. My dad’s hometown.

My great grandfather’s 2 headed calf. Kept in the Memphis, Tx museum. 

Celebrating Sharon’s b-day at the String Bean in Richardson, Texas. They have really good home-cooked food.

My rescue cat Daphne. She is a lap cat as evident in this picture with my dad. 🐱

My parents and I had the special opportunity to attend the Cowboys Thanksgiving game last year and watch it from a suite thanks to my sister and brother-in-law. 🦃🏈

My nephew Jameson. It’s wonderful to be an uncle again.

Spent the day in downtown Grapevine, Texas last holiday season. It was a lot of fun. Picture with my mom.

Christmas Eve service 2018 at Christ United Methodist Church in Plano, Texas.

Sharon’s first time to try gelato. She loved it. 🍧

Recent picture with my dad, sister Holly and nephew Jameson.

Helping my dad on the farm in East Texas.

All dressed up for church this month (April). ✝️

 

 

 

 

 

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7th Year Transplant Anniversary

Today I celebrate seven wonderful and amazing years with my lungs and liver transplant performed at Houston Methodist Hospital on April 19, 2011.  It’s hard to believe it’s been seven years. I’ve been so blessed.  I have enjoyed a good past year and have had a few minor issues but overall everything is going well. I was having chest pains last spring and summer but I went to a cardiologist for extensive testing and received a good report. I’m still going to Baylor Dallas for my medical care and checkups. It’s a wonderful hospital and I love my transplant coordinator and doctors.  

 

The most amazing and great thing happened this past year.  I met a wonderful lady named Sharon S. at the beginning of 2017 and fell deeply in love. She is beautiful in every sense of the word and is so supportive and understanding of my health issues. Sharon has a beautiful smile, a wonderful personality, is highly intelligent and on top of all of that is very funny. She makes me laugh daily with her funny remarks and wit.  I give God thanks for bringing her into my life . He knew that we had both been grieving and were a perfect match for each other in so many ways. 

 

She has flown in to see me four times in the past year and we have had so much fun hanging out and taking fun road trips to Houston and Waco.  We went to Waco last April to visit Chip and Joanna Gaines’ Magnolia Market and saw the famous Silos from the show “Fixer Upper”. We even got to try some delicious cupcakes from Joanna’s bakery.

 

We took a trip to Houston last August and visited Kindred Hospital to see some of the healthcare professionals who took care of me for four months (before and after my transplant) in 2011. We also met a fellow lung transplant recipient who had her transplant last Spring and has followed my blog for many years. We had a great time comparing notes regarding our transplants. Sharon loves Joel Osteen so we attended a church service on Sunday morning. Everyone was very nice and friendly at Lakewood Church and we got to sit on the fourth row. We wanted to go to Galveston but just ran out of time. 

 

Baylor Hospital in Dallas had a Celebration of Life party last April during the official Donate Life month. It was the first time that my parents and I had been invited. We had a good time and saw many familiar faces, including the lung transplant director – Dr. Rosenblatt. 

 

Unfortunately, I do have some very sad news to report.  One of my CF doctors passed away last month. His name was Dr. Robert Kramer or Dr. Bob as he was known in the CF community. Dr. Kramer was an amazing doctor and so caring with all of his patients. He was a leading authority in the United States in the care and treatment of Cystic Fibrosis patients. Dr. Kramer diagnosed me in 1968 when I was 2 days old and told my parents that I would need immediate surgery.  Dr. Kramer cared for me the next thirty years and helped me through some serious illnesses, including double pneumonia at the age of four.  Dr. Bob was a father figure to his patients and was a very loving, warm doctor. I still remember him telling me as a teenager that his goal and wish was to see his CF patients get grey hair and grow old. I’ve been extremely blessed and fortunate to live long enough to have a few grey hairs. I know that would make Dr. Kramer extremely happy!  He kept in touch with me when I moved to Houston to get listed for my multi-organ transplant. His support and words of encouragement and advice helped me greatly during a very difficult and scary time when I could not breathe. He even flew down to Houston to visit me at Kindred Hospital only a few weeks after my life-saving transplant. I was so surprised and shocked that a doctor would take time and fly to a different city to see a former patient but that was vintage Dr. Bob. We had a wonderful visit that day at the hospital. He immediately asked to see my new transplant med list upon arrival – once my doctor, always my doctor (even in his retirement). He was a dear, kind-hearted man who will be deeply missed but never forgotten. Rest In peace Dr. Kramer and thank you for caring for me and all my Cystic Fibrosis friends. We loved you. ❤️

 

I think of my donor and his family regularly throughput the year but especially this time of year. I pray for their strength and comfort this week because I know the pain never goes away. 🙏🏻 Eternal thanks to them for the gift that saved my life.  This month is National Donate Life and I urge you to sign up to be an organ donor (I signed up at 21) or at least tell your loved ones your wishes. Life is precious and we are all blessed to be here each and every day. Tomorrow is promised to no one. 

 

This summer is a big summer for me and my family. Believe it or not, I will be turning 50 years old on July 8th. That may not seem like a big deal to the casual reader but you have to consider that my parents were told in 1968 that my life expectancy was 5 to 6 years old. Is it a miracle that I’m turning 50 with Cystic Fibrosis? I would say a resounding “YES”, especially when you consider what I’ve been through in my lifetime. I endured countless bouts of pneumonia on and off during my 42 years with CF lungs, GI bleeds, life threatening hemoptysis (coughing up blood) and a multi-organ transplant with pages and pages of possible complications. So this summer I will celebrate and give God all the glory and thanks for my continued miracle that I’m still here and able to update my readers another year. Thank you for reading my blog and for your continued support and prayers for eight years since I started chronicling my life through this blog. 

 

Thank you and God Bless. I will provide another update next spring. ❤️

 

Gary 

 

First pic taken post-op minutes after I woke up the next morning 4/20/11

Picture with Sharon in a field of beautiful bluebonnets April 2017. The Texas state flower.

 

Happiness is holding Sharon in my arms. 😍

 

Picture with Sharon over the Brazos River in Waco, Texas.

 

Selfie picture with Sharon at the Dallas Arboretum November 2017.

Selfie pics collage at the Dallas Arboretum with my sweetheart.

 

Picture with Sharon at the Dallas Galleria last November 2017.

 

Our first Valentine’s Day together. ❤️ We celebrated at a local hibachi grill.

 

Picture with my parents at the Baylor Hospital transplant reunion April 2017.

 

Baylor transplant group photo times. I was in both the lung and liver photo. 😊

 

Picture with Dr. Kramer taken at Kindred Hospital in Houston May 2011.

 

Dr. Kramer looking over my new transplant med list.

 

Easter Sunday 2018 with my parents at our church.

 

Surrounded by two beautiful ladies, Sharon and my sister Holly. 🌹

 

Headed to a Hawaiian themed church Sunday school party last August.

 

A Texas tradition – a Fletcher’s corny dog with my dad @ The State Fair of Texas last Oct.

 

Picture with my nephews Cole and Dylan last Christmas. I’ve been blessed to have an additional seven years with them.

 

Out celebrating my 49th birthday with my parents last July.

 

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6th Year Transplant Anniversary

Today is the 6th anniversary of my double lung and liver transplant @ Methodist Hospital in Houston.   I’ve been so blessed to be able to spend six extra years with my family and friends. I give God all the glory for my transplant miracle because it really is a miracle that I am still alive today. The doctor said I had less than 2 years to live when I was diagnosed with end-stage Cystic Fibrosis in January 2010. I give thanks and remember my donor for the Gift of Life that I received.  My thoughts and prayers are with the donor family.  I know this is a difficult time for them.

I had a difficult past year as I tried to adjust to life without my girlfriend Jeannine who passed December 31, 2015. I loved her very very much. She is deeply missed and will never be forgotten.  One of Jeannine’s closest friends in Missouri told me to seek out a GriefShare support group when I got back to Texas. I found a great Baptist church in Richardson, Texas that had a GriefShare group.  GriefShare was so helpful in helping me cope with Jeannine’s loss that I ended up attending 2 full course sessions (24 weeks total).  I would highly recommend GriefShare to anyone who is grieving the loss of a loved one. 

I joined a wonderful singles Sunday school class @ St. Andrews Methodist Church in March. The class has been a blessing in my life as I have made many new wonderful friends.

The loss of Jeannine was a devastating loss and it deeply crushed my spirits, but Jeannine would want me to continue living life to the fullest so that’s what I am trying to do.  I went on a cruise to the Mexican Riviera (Cabo San Lucas, Puerto Vallarta) in April with my parents, Jeannine’s parents and their family friends from Missouri.  Jeannine was originally supposed to go with me.  We had a good time on the Princess cruise ship. It was our first time to visit Cabo and Puerto Vallarta and to sail Princess. 

 My mother and I took a road trip to Independence, Missouri in July to visit Jeannine’s parents and friends . We had a good visit and were able to see the beautiful garden Jeannine’s parents planted in her memory. My mom and I are big baseball fans so we attended a Texas VS Kansas City baseball game and even saw the 2015 World Series trophy. That was really neat and the Royals have a gorgeous ballpark.

In August, I hosted a Jukebox/Pool party for my Sunday school class. Everyone had a great time sitting outside by the pool listening to Golden Oldies Classic 45’s on my father’s jukebox.  One of the leaders of the class was so excited I hosted a party. She said I was the first male to host a party in years. LOL

In early October I flew out to Anaheim, California to visit my good friends Tim and Tina. I had such a good time and so much fun which included going to the San Diego Zoo, Aquarium of the Pacific in Long Beach, Medieval Times (first time) and touring the USS Midway aircraft carrier. I also got the opportunity to go to Disneyland for the first time ever with my friends Lisa and Sara. Thank you Tim, Tina, Lisa, and Sara for the wonderful memories. 

My parents and I flew to New Orleans in late October for a short visit to the French Quarter and Bourbon Street. We had a lot of fun in New Orleans and I’d love to go back again someday. We loved the Cafe Du Monde French Market Coffee Stand and their beignets! They were delicious. My parents and I spent a full day at the World War II Museum. It was simply amazing. We also tried Uber for the first time. It was a pleasant and enjoyable experience. 

I was very fortunate and blessed to get through 2016 without getting sick (in spite of all the traveling) but 2017 has been a difficult beginning.  I came down with a cold in January and was sick most of the month. I got over the cold and felt better in February but I went to church for Ash Wednesday service and came down very sick the next morning. I had all the symptoms of another classic cold (stuffy nose, scratchy throat, cough ). I waited 4 or 5 days and didn’t get better so I contacted my nurse who had me come to the hospital for a nasal wash. Much to my surprise – the results came back positive for a respiratory virus called RSV (Respiratory Syncytial Virus) . It was a nasty virus that caused my lung function to drop as well as causing bronchitis like symptoms. I even had to have CPT (Chest Physical Therapy) on my lungs because of the phlegm in my bases that I could not cough up without help. It was the first time I’ve had to have “clapping” since my old Cystic Fibrosis lungs in 2011 pre-transplant. I thought I might have to be admitted but the doctor chose to give me an oral medication called Ribavirin. I took it for 2 weeks.  It was a rough month of March but I am better now and my lung function is back up to its baseline. I give thanks to God for healing me and I give thanks to everyone who prayed for me that follow my blog or follow me on Facebook.  God is good. 

I’ve had an amazing six years with my new donor lungs and liver and I pray I have many more years with them. I am so thankful and blessed to have received the “Gift of Life” and have been able to spend another 6 years with my family and friends.  

Thank you for reading and following my blog.  I am blessed. God Bless you. 

Gary

Picture with my parents just minutes before I went into the OR.

Picture taken after I woke up from my life-saving transplant the next morning.

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In Memory – Jeannine

It has been a very difficult year for me emotionally. A year ago today the love of my life passed away. Jeannine came down sick with pneumonia last December and got progressively worse. She was 23 months post lung transplant. She almost made it to two years. Her second lung transplant anniversary would have been January 31, 2016. It has been so painful and I don’t even have the right words to convey my feelings and emotions. It was the most painful thing that I’ve ever experienced.   Jeannine would have turned 40 on December 2nd.  I had hoped and prayed that she would make it to age forty because turning forty is a huge milestone in the Cystic Fibrosis community.   We had talked about throwing a big party for her birthday celebration and I was going to fly up to Kansas City for it.  We were supposed to go on a week long cruise to Cabo San Lucas and Puerto Vallarta in April. Jeannine loved the ocean and we had booked a balcony room. We were both looking forward to it so much.  What probably hurt the most was that we never got to take the cruise together. We had talked about going on a cruise for years. It was on our bucket list of things to do as a couple. 

 

Jeannine was was not only my girlfriend of 4 1/2 years but she was my soulmate and my best friend.  She was the love of my life and I give God thanks for bringing us together in spite of the fact that we lived 500 miles apart. I have so many happy memories of Jeannine. Jeannine had the sweetest voice and the cutest smile. I can still hear her saying on a daily basis , ” Baby, I love you”.  She told me that she loved me every time we talked and I always said it back to her because I knew we were both on “borrowed time”.  She had the best personality and she loved everyone she met. Living a life with a terminal progressive illness is extremely difficult but Jeannine was always so positive and in good spirits.  She loved to laugh and had the prettiest smile. She was a great motivator and I looked to her for daily encouragement. She gave me the nickname “Bright Eyes” right when we met because of the sparkle and twinkle in my eyes.  I always told her that I had that sparkle and twinkle because of her.  My life was  never a life of “Bright Eyes” until I met her.  Jeannine’s biggest worry and fear in life was that I would go into rejection and she would lose me. She would always tell me, “Baby,  please don’t ever leave me and don’t ever go anywhere. I can’t go on living without you”. I would always assure her that I wasn’t going anywhere and would gently wipe away her tears.  I understand why she would say those things because it’s so hard to be left behind ; especially when you need that person to help you continue fighting and to help you back up when you fall down. We were that person for each other. We always helped each other up after numerous medical struggles and setbacks. 

 

I thank Jeannine’s donor and donor family for her Gift of Life.  I was at the hospital with her the day she received her transplant in Dallas at UTSW Hospital.  I will never forget it. It seems like only yesterday.  I was able to spend almost two extra years with Jeannine thanks to one caring family who performed a selfless act by donating their loved one’s lungs. I want to thank Jeannine’s parents for their love and hospitality. They have always been so kind and loving to me and they supported Jeannine and I being together from the very beginning ; including allowing Jeannine to fly down to Houston to meet me in person shortly after my transplant. I want to thank the rest of Jeannine’s family for their love and making me feel a part of their family. I gained a new wonderful family when God brought Jeannine and I together. I also gained many new wonderful friends through Jeannine. So many beautiful people in Missouri entered my life as a result of my relationship with Jeannine. Dear friends that will always be life long friends. Some of the warmest, friendliest people live in Independence, Missouri (Jeannine’s hometown) . I also want to thank my parents for their love of Jeannine and always being so nice and kind to her when she would visit.  Many people supported us  being together including my doctors and Jeannine’s doctor. That meant a lot to both of us that our doctors would give their blessing for two cystic fibrosis patients being together.    It always meant so much to us to have our doctors’ support.  Thank you to  everyone who  loved Jeannine. She made me so happy and she was the best thing that ever happened to me. 

 

I miss you Jeannine. I will always miss you. I miss your daily phone calls, your texts, the time on Skype together , and I miss the anticipation of your next visit and flight down to Dallas.  We had the best time together in spite of our days being numbered. We lived every day to the fullest when we were together and we cherished every moment.  I’m so grateful and thankful you reached out and found me on Facebook just days after my transplant in April 2011. Thank you for loving me the way you did. We experienced a true love that very few people will ever experience . We understood each other’s pain and suffering with Cystic Fibrosis like no one else could. We truly understood each other’s struggles of living with a deadly disease and because of that we made each other stronger.  We both believed that God brought us together. It was not by chance and it was not by luck. 

 

I will see you again Baby. I don’t know how long I have here on Earth but I promise to continue taking care of myself and to live my life to the fullest in your memory.  I know you would not want me to mourn your loss but rather recall all the beautiful memories we had together.   I will love you to the end of time. Now and forever. I always called you my “Angel Eyes” sent from God and now you truly are my angel watching over me.  Thank you for the best 4  and 1/2 years of my life. 

 

RIP Ladybug, Baby, Angel Eyes, Jeannine 

 

Love Eternally, 

 

Bright Eyes

 

 

P.S. To my readers – It was very hard and difficult to pick 15-20 pictures that captured my 4.5 years with Jeannine. I tried to pick out some of my favorites. I hope you like them as much as I do. Thank you. 

 

First time I met Jeannine when she flew to Houston.

I was so happy when Jeannine got to meet my CF doctor – Dr. Allen.  One of the doctors who saved my life.

Jeannine flew down for Valentine’s Day 2012.

The love of my life. Happiness.

I gave Jeannine a beautiful Sapphire and Diamond promise ring on Valentines Day 2012. She loved it so much that she cried.

Jeannine and I loved going to church together.

Jeannine loved it when I would hug and hold her tight

Jeannine loved IHOP and we always sat beside each other in the booth.

Jeannine and I had so much fun seeing the play Peter Pan

The jack-o-lantern that Jeannine carved at her house.

Christmas 2012 and New Year 2013 with Jeannine

Jeannine loved her dog Brandy so so much. That was her baby.

Jeannine and I had so much fun riding my 4-wheeler at my grandparents farm in East Texas July 2013.

I took Jeannine to her favorite restaurant Red Lobster less than 3 months after her lung transplant. She was so happy.

May 2015 – almost 1.5 years post transplant for Jeannine.

I was so happy that Jeannine got to go to the Kansas City zoo with me and her good friend Wendy Patrick before she got sick.

One of my favorite pictures of my sweet Jeannine. My Ladybug. My Angel Eyes.  RIP Baby

 

 

 

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5th Year Transplant Anniversary

Today I celebrate my 5th double lung and liver transplant anniversary!!!  I can’t believe it. *happy dance* I’m still alive and doing good. I’m sorry I haven’t posted a blog update in over a year. Time is just flying by.  I have been enjoying life to the fullest and been involved in supporting my girlfriend Jeannine during her transplant journey and visiting her as much as possible.  I’m very thankful to God, my donor and donor family for five extra years of life.  It’s been an amazing ride and such a blessing.  Thank you to my wonderful and supportive parents who have always been my rock and foundation. They are the most loving and caring parents in the world. Thank you to the rest of my family and friends who have supported me in my battle against cystic fibrosis and along my transplant journey.  I could not have done it without everyone’s support.  In addition, a big thank you to all the many doctors, nurses and therapists that provided wonderful care.  Thank you to all the healthcare professionals.  They are my heroes.  Finally, thank you “the readers” of my blog who have left supportive comments over the years and prayed for me.  You are my prayer warriors. Thank you. God heard and answered the prayers.  Miracles really do come true.  I believe I am a miracle of God.  The glory goes to Him. 

 

Five years is a big milestone in the lung transplant community.  Only 50% of lung transplant recipients survive five years.  I realize how fortunate and blessed I am to not only receive the Gift of Life but to survive five years.  God and my donor have allowed me to feel what it would have been like if I had been born with healthy lungs and liver.  I used to cough nonstop and even cough up blood. It was a constant cough that sounded like a combination of bronchitis and pneumonia. I used to have so many people give me looks and stare. Now I no longer have a persistent cough. It’s wonderful!

 

My lungs and liver have been functioning good. I did have a little bit of mild rejection in Fall 2015 and caught a couple of head colds (rhinovirus) but I recovered without any permanent damage to my lungs. I’m still under close watch of the doctors and nurses at Baylor University Medical Center in Dallas.  They continue to provide excellent care.

 

It’s been a bumpy journey at times but it has been worth it. I would do it again. It feels so good to be alive.  I hope that my donor is proud of me. I give thanks everyday.

  

I would like to thank you for the support and for reading my blog.  Please feel free to comment or email me if it’s your first time to read my blog and are moved by my journey or have questions. I reply to private emails and have even become Facebook friends with some of my readers.  I would love to meet you. 

 

Thank you and God bless. 

 

Gary 

Picture taken with my parents before going into the operating room.

Present day picture April 2016. Taken a week before my 5th transplant anniversary.

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Donate Life Transplant Games 2014

The Transplant Games were held in Houston, Texas from July 11 – 15. Originally, I was going to go to the Games with my girlfriend Jeannine who had a lung transplant in January 2014. Unfortunately, she broke her right hip and had to stay home. :(( We were both really bummed about it. I wanted her to meet fellow transplant recipients from across the United States and hear their inspirational stories and share her journey. I asked my parents if they would join me and if they wanted to go to The Games. They have always supported me throughout this journey so naturally they wanted to go. One of my CF transplant friends recently called them “my rock” and that’s very true and accurate. We were all excited to go back to Houston (where I had my transplant). We left last Friday, July 11. We left home a little late so we didn’t arrive in Houston till the afternoon. We got all checked in for the Games but unfortunately missed the welcome reception.

We had to go to bed early Friday night because I had a 5K Transplant Games Walk early Saturday morning. We had to wake up at 5:45 Saturday morning for the walk. I’m not sure about you but that’s early for me. lol The cool thing about the walk is one of my Houston doctors walked with me. Her name is Dr. Allen. Dr. Allen was instrumental in my care from 2010-2012. I owe so much to her. She is the wise and wonderful doctor who suggested I go to Kindred Hospital when I was so sick (while on the waiting list) in 2011. She happened to be in town last weekend and wanted to walk with me!!! It was so cool and I was deeply touched. Dr. Allen has watched my whole transformation from using a walker and barely being able to walk to the restroom (on 5L oxygen) in the hospital to now being able to walk a 5K. I only had to stop once and that was to take my 9 a.m. transplant pills. It is such a blessing and I’m so grateful to my donor that I was able to walk with my doctor WITHOUT supplemental oxygen! Praise God.

Saturday night was the opening ceremonies of the Transplant Games! It was VERY hot but we still enjoyed ourselves. There was so much electricity and excitement in the air. I even spotted my pre-transplant lung coordinator Maricella in the stands. I didn’t get registered in time to walk into the stadium with Team Texas but that’s okay. I still had a blast. My parents and I watched all the transplant recipient athletes walk in. That was really cool. They were mostly grouped by state but there were a few city teams like Team Philadelphia. Team Texas had over 700 members compared to 30 something members back in 2012. Go Team Texas! The living donors walked into the stadium next ; followed by the donor families. Everyone got on their feet and gave them a standing ovation. It was so emotional. There probably wasn’t a dry eye in the stadium. The last group to enter was the Quarter Century Club. They were the transplant recipients who have had their transplant 25 years or more. They wore t-shirts that had the number of years of their transplanted organ on their shirt. I saw one person whose shirt said “40”. In other words, they have had their transplant 40 years!!! How awesome is that??? The opening ceremonies concluded with a spectacular fireworks show.

My parents and I went to Hermann Park on Sunday to ride the train. I’ve always loved trains; especially as a kid. I used to watch the train go by in Hermann Park while I was on oxygen. That was a lot of fun. The Houston Zoo is next door to the train pickup / drop off but we didn’t have time. We had to get back to the convention center because I had a lung transplant gathering to attend. One of my FB transplant friends hosted the party. I met a lot of very nice lung transplant recipients at the gathering. Hopefully I made some new life long friends. We all have such a close connection and bond. I also finally got to meet my CF lung transplant friend, Jess. Jess received her transplant exactly 1 year and 1 day before mine. Jess used to write a blog while I was on the transplant waiting list. Her journey gave me so much hope when I was having a hard time breathing. Walking with Dr. Allen and meeting Jess were definitely the highlights of the Games. I loved the lung transplant gathering. I’m so glad I attended it.

On Monday my mother and I attended five one hour workshops. (Nineteen different workshops were offered.)

I chose to attend:
1) Understanding the Need-Communicating with Donor Families and Recipients
2) Physical Fitness: Enhancing the Quality of Life after Transplant
3) Making Food Taste Great as a Transplant Recipient
4) Organ Transplantation-Preparation and Life-Long Impact
5) And in their Last Hour, They Gave a Lifetime

I learned a lot at the workshops, including the need for more people to sign up to be organ donors. They told me that as of 7/14/14 there are 122,863 people on the waiting list. Eighteen people that are on the transplant list die each day. :((( That makes me really sad to hear.

There was a coffee hour both Sunday and Monday night. I missed the coffee house Sunday night because of the lung gathering; therefore, I definitely wanted to visit the coffee house Monday. My parents and Jess attended also. It was an open coffee house where people could come and go as they wished. It was a place for us to share our journey around friends and to honor our donor’s life. There was a mix of transplant recipients, donor families, and supporters/caregivers. It was an open microphone format. Jess got up and shared her journey and read a poem. She did a fantastic job. So proud of her. I listened to a lot of other transplant recipients share their stories. The donor families spoke also. It was very moving and emotional hearing them talk about their loved ones. My heart goes out to them. I thank them so much for honoring their loved one’s wishes. Towards the end of the coffee house I worked up the courage (not a public speaker; especially with a microphone) to share my journey and thank my donor. In addition, I spoke about Jeannine’s journey and the gift of life she recently received. We have both been blessed and received such a wonderful gift. I came away from the coffee house deeply moved by all the stories and hearing about some of the donors–our Heroes.

Tuesday was the last day of the Transplant Games. I was sad because it was the last day, but I was determined to make it a memorable last day. We had lunch at Methodist Hospital with a church friend named Latham who used to visit me every Tuesday while I was at Kindred Hospital ( 3 months pre / 1 month post ). Latham encouraged me so many times to keep pushing along, keep fighting and to keep the faith. After lunch my parents and I were walking along in Methodist Hospital when my father spotted my liver surgeon, Dr. Ghobrial. It was awesome to see him again and to thank him for all he did for me.

I also went to visit my Kindred Hospital “family” where I spent so much time while on the transplant list and then also after my transplant. It was so good to see everyone that took care of me. I also got to see Bob the CEO who always did a great job making sure I was well taken care of while I was a patient there. I always love to visit Kindred Hospital. They are wonderful, caring people.

Tuesday night was the closing ceremonies at the convention center. I sat with Jess and her friend Ducky. A lot of awards were handed out like male/female athlete of the year along with recognition of the sponsors. I might add that the Team Spirit Award went to Team Texas!! Yeehaw! They said it cost 2.2 million dollars to put the Games on. WOW!!! I think everybody was sad it was over but pumped up when they announced the 2016 Transplant Games will be in Cleveland. Cleveland Rocks! Right? I’m ready to go!! It seemed like everybody had a blast! I know my parents and I did. I’ve already spoken to some more of my CF transplant FB friends and a few of us plan to attend the next one. This was my first Transplant Games and I can’t wait for the next.

In closing, please sign up to be an organ donor. I just renewed my driver’s license this month and once again I checked YES to being an organ donor. I don’t need to repeat the numbers mentioned earlier, but you know it’s the right thing to do. Be a Hero! Donate Life. Thank you very much and thank you for reading my blog. Thank you Donor and thank you God for my many blessings.

Donate Life Website

Registration was held @ The Hilton Americas Hotel

5K walk with wonderful Dr. Allen. That was SO awesome!

At Compass Stadium watching the athletes walk-in for the Opening Ceremonies

Riding the train @ Hermann Park

My fellow CF Lung Transplant friend Jess who had her transplant 4/18/10

Group photo of some of the recipients @ The Lung Transplant Gathering

One of the workshop classes. Standing with Megan who presented the workshop.

Picture of some of my Kindred Hospital family that I visited. From left to right: Samira, Tiffany and Metrice

Pictured with my good friend Latham

One of my awesome liver transplant surgeons: Dr. Ghobrial

Picture of me with my parents at the closing ceremonies

Excited! The Transplant Games for 2016 will be in Cleveland!

2014 Dallas Great Strides

Had a wonderful Great Strides 5K walk today to raise money for cystic fibrosis research. I walked with my parents, my good respiratory therapist friend Angie, her husband Todd, and Angie’s Collin County Community College respiratory students for Team Jeannine and Gary. I really appreciate Angie creating and forming a team honoring Jeannine and me. Unfortunately, I didn’t get to walk with my girlfriend Jeannine this year. She is back home in Missouri recovering from her lung transplant and getting stronger but we walked in her honor. The last two years I’ve walked with Jeannine and her family in the Kansas City Great Strides.

It was overcast and a little humid this morning but still nice weather. It rained after the event. That was a close call. We had to walk to the car in the rain. Thank you to everyone who donated to help find a cure for CF. You are making a difference–a difference where one day there will be a cure. I want to see a cure in my lifetime. The Dallas Great Strides had over 1000 walkers and raised over $300,000. What a wonderful and successful event! It was a great day and I feel blessed and thankful that I was able to walk for the third straight year post lung and liver transplant. Thank you God and my donor for this amazing gift that keeps on giving.

My dad showing off this year’s Great Strides t-shirt before the walk.

Start of the walk. Some of Team Jeannine and Gary walkers. From L to R; Angie, Todd, Tori, Randy (father), Me

Team Jeannine and Gary nearing the finish line.

My parents during the walk. Really enjoyed walking with them today. It was a special moment. My mom wore her “Organ Donation Saved My Son’s Life” t-shirt.

Crossed the finish line! I made it 5K (3.1 miles)

Enjoying the food, music, and festivities after the walk.

Lungs & Liver 3 Year Check-Ups

I had my annual lung and liver check-ups last Friday and today. I’ve had a lot of tests for my third annual visit. I saw the lung doctor last Friday. Dr. Huang said my lungs were doing good. I dropped a few percentage points on my pulmonary function test but the doctor wasn’t concerned. I continue to have fluid on my right lung. It remains a mystery. I’m still breathing easy and I feel good. My 24 hour urine collection was normal. Yay! I was worried about the urine collection because I have early stage kidney disease. Unfortunately, that’s one of the side effects from the transplant meds. Prograf is toxic to the kidneys.
 
 My blood work all came back normal. In addition, I had an echocardiogram last Friday to check my heart. I never heard the results so I assume that’s good news. I also had a bone density test last week. The bone density test showed I have osteoporosis. 😦 I had osteoporosis even before my transplant. It’s quite common in cystic fibrosis patients due to malabsorption. I had a six minute walk and walked 1,350 feet. It was down a couple of hundred feet from last August but I did the best I could. Dr. Huang wants to see me back in clinic in six weeks since I have the fluid on my lung. That’s okay. I’m thankful he is keeping a close watch over me.
 
 Today was my annual liver transplant check-up. I saw Dr. Asrani and his Nurse Practitioner Allison. Dr. Asrani said my liver ultrasound and Doppler looked good. There was a good flow. All of my liver blood work numbers looked good. Dr. Asrani said I was doing great from a liver transplant standpoint. Yay! It was so great to hear a good report. I do need to lose some weight and that continues to be an issue. There was a theory that the fluid on my right lung might be coming from my abdomen but there was no evidence of that. Finally, Dr. Asrani said I don’t need to come back for another year! He will continue to monitor my weekly blood work and will be available if I have any problems.
 
 I saw the dermatologist yesterday for my semi-annual body check to check for skin cancer. I see the ophthalmologist tomorrow and the diabetes doctor next Tuesday. That just leaves the dentist as my final check-up. That will be in the weeks to come.
 
  My girlfriend Jeannine will be leaving Dallas on May 24 and finally going home. I’m going to miss her but so happy for her. She has been here since November 4, 2013. We have cherished our time together. She will have to come back to Dallas for monthly check-ups for the first year. She has had a rough recovery from her lung transplant but is doing better. She is breathing easy like me. Giving thanks for our miracles.
 
 All in all, I received pretty good news for my third anniversary check-ups. I’m very very blessed and very happy to be alive for another year. It’s so wonderful. Having a transplant really makes you appreciate life and change your perspective. Thank you everyone for reading my blog and following my journey. Thank you also for all the comments and support. Thank you God, my donor and his family for the gift of life. It’s been the best three years of my life.

Finished my 6 minute walk. Pictured with RT Ana who timed my walk.

Outside the Imaging Center where I had my liver ultrasound and Doppler.

In the liver transplant waiting room. Had a late appointment so it was empty. OK with me. Holding a purple flower pen for Cystic Fibrosis month.

In the liver exam room. Going over my med list and waiting on the doctor.

Pictured with my wonderful liver doctor: Dr. Asrani. Loving the great report he shared with me.

Great News at Lung Clinic

I went to lung transplant clinic @ Baylor Hospital today with my mother. They had me do extensive pulmonary function tests. It took almost an hour. Wow! My lung function has been dropping steadily the past few months. Last Monday my FeV1 was 2.66 liters or 69% of predicted. Today Dr. Huang walked into the exam room and said my lung function had “magically” gone up. Quite a bit actually. It was 3.05 liters today!!! Hallelujah! I couldn’t believe it; neither could my doctor. Because the results were so good, Dr. Huang even checked to make certain he wasn’t looking at results for another patient. Dr. Huang was very happy. I’m thrilled. Glory be to God for prayers answered. I’ve been really stressed out over the decreased lower lung function since last November.
 
 Dr. Huang is still not sure why I have fluid on my right lung. He said the CT scan showed I had a little fluid in my abdomen but not much. He thinks the fluid may be coming from my abdomen. There is not a major concern about the fluid right now as long as my lung function remains good. I go back to clinic in two weeks for my annual checkup.
 
 Just wanted to share the great news today with everyone who follows my journey. Today was a really great day. *Happy Dance*
 

My good RT friend Angie stopped by to see me while I was a patient last month @ Baylor Hospital.

The whole chest tube and drainage setup from last month.

Still a little groggy and medicated from the bronchoscopy 3/27/14. lol Bronchoscopy performed by the wonderful Dr. Huang.

Discharge day last month. My name is in the name plate on the wall. It was my first time on the Baylor transplant floor. They took great care of me.

Lung clinic today 4/21/14. Dr. Huang pictured. We are both very happy with the lung function results.

Pictured with my awesome lung coordinator Jill @ lung clinic today 4/21/14.

3 Year Transplant Anniversary

Hello everyone,
 
 Giving thanks today on my 3rd transplant anniversary. I’m so blessed and so grateful for the gift I received April 19, 2011. The Lord and my donor blessed me with a precious gift. It feels great to be alive and able to breathe easy. Thankful for my wonderful parents and girlfriend Jeannine who have given me great support and their love. Thankful for the rest of my family, doctors and friends who have been by my side.
 
 Things have been going well but I’ve been having some issues lately. My liver continues to do good but I have been having fluid on my right lung since November 2013. I had 1/2 liter of fluid drained in late February 2014. In addition, I had a pneumothorax (collapsed lung) last month. The doctor admitted me to Baylor Hospital in Dallas and put a chest tube in for a week. They had to re-inflate the lung and drain more fluid. The fluid has since returned. It’s a mystery why I have fluid on my lung. The doctors are not sure why I continue to have this issue. They continue to run tests to figure things out. I had a bronchoscopy while I was in the hospital to check my lungs for rejection. Thankfully, the biopsy came back negative. No rejection. Praise God.
 
 My GF Jeannine got seriously ill last year. Her doctor said she needed a lung transplant. She was Medi Vac flown to Dallas November 4th. She was evaluated for a transplant and placed on the list Dec 30. Jeannine received the “call” on the morning of January 31st. The doctors had lungs for her. She had some complications and had half of her left donor lung removed a week after her transplant. She is currently out of the hospital and recovering in the Dallas area. She is doing amazing and doctors are pleased with her progress. We are enjoying our time together. I’m so happy that Jeannine is doing well and can breathe easy. We both received the best gift a person can ever receive: The Gift of Life! We now share a unique common bond.
 
 I hope to have more news when the doctors figure out the cause of the fluid. Thank you for continuing to read my blog and thank you for the prayers.
 

Enjoying lunch and celebrating my anniversary with Jeannine today. So happy.

Celebrating Life on my 3rd anniversary. What a wonderful day.

Chest tube last month. Not much fun (in spite of the thumbs up).

Meeting My New Doctors @ Baylor Hospital in Dallas

I went to Baylor Hospital in Dallas for clinic this week. I had an appointment with my new endocrinologist on Monday. I met Dr. Hollander and had a good visit. We went over my medical history and discussed my current diabetes treatment. She felt I was doing good with my diabetes care and elected to stay with my current treatment plan. I had blood work to test my A1C, thyroid level, and testosterone level. The A1C test gives a picture of the average blood glucose (blood sugar) control for the past 2 to 3 months. The average A1C is 7%. I don’t mean to brag but mine was an amazingly low value of 4.9%. Outstanding! My thyroid level was normal but my testosterone level is low. All in all, I’m doing good with my diabetes care. I’m very pleased and thankful for my good report.

On Tuesday I had liver clinic. I met my new hepatologist, Dr. Asrani. It was a long visit but thorough. I went over my long medical history with his nurse practitioner, Allison. The visit went well and Dr. Asrani was happy to hear that I’m over 2 years post transplant and never had rejection. He was concerned though with my lab work. He said my liver function test values were slightly elevated from September 13th blood work. He wants me to get blood work on October 7th to check for CMV and to recheck my liver values. In addition, I have a doppler and ultrasound of my liver scheduled next week. Dr. Asrani wants to see how my liver looks and get a baseline. He also said I may need an MRI of my abdomen but that depends on how the ultrasound turns out. I had a good visit and I like my new doctor, but I still miss Dr. Gordon and Dr. Ghobrial in Houston. I felt it was necessary to transfer my complete care to Dallas and not just my lung care. I feel I have 3 really good doctors (lungs, liver, diabetes) in Dallas and I have no doubt that I will continue to receive the same excellent care that I received in Houston.

My next lung clinic appointment is November 11 with Dr. Rosenblatt. I will try to keep everyone updated. Hopefully my lung function will go up. I’m exercising daily and taking good care of myself. Every day I chart my vitals and blood sugar results. I still need to lose some weight. I’m working on that but it’s hard being on prednisone.

May God continue to bless me. I’m so happy. Thank you to my donor and his family for this wonderful gift. I’m so thankful and so grateful. Thank you everyone for reading and following my miraculous journey.

My diabetes doctor, Dr. Hollander.

Dr. Asrani’s nurse practitioner, Allison.

My liver transplant doctor (hepatologist), Dr. Asrani.

Outside the liver transplant clinic.

Stopped by to see Lisa, my former liver transplant coordinator from Houston. She now works at Baylor Hospital in Dallas.

Outside in front of the Baylor Hospital Simmons Transplant Institute.

Transfer of Care to Dallas

Hi everyone ,

I wanted to give my readers an update on the latest news regarding my medical care. There is some big news. I received a letter from my insurance in early July that Dr. Harish Seethamraju (my transplant pulmonologist and transplant center director ) left Houston and moved to Kentucky. He officially left 6/30/13. It came as a big shock. I have yet to receive a letter from Methodist Hospital but the move was confirmed by my lung coordinator. Dr. Harish is the doctor who accepted my case three years ago, and his picture is featured many times in my blog. I am so thankful that I had Dr. Harish as my doctor. He will be greatly missed. I received wonderful care.

My parents and I decided that now was a good time to move my care back to Dallas. There are many reasons for this decision. The first reason was due to Dr. Harish moving and leaving Methodist Hospital. The second reason was because of the continued cost. It was costing me $500 in gas and hotel bills every clinic week. Another reason was the fact that I was in the process of losing my liver surgeon doctors who I loved so dearly. (During my May clinic appointment, they introduced me to a new liver doctor who would start following my case since I am now two years post transplant.) Also, the 4 1/2 hour drive to Houston was becoming increasingly more difficult for my parents, and it’s never an “easy” drive with the Houston traffic . Finally, it will be nice having friends and family nearby to offer support as needed.

Therefore, we decided to move my post transplant care back to Baylor Hospital in Dallas. I went to Baylor Hospital for my CF care from 2000-2010. I met with Dr. Millard (my former CF doctor) and he contacted Dr. Rosenblatt’s office regarding the possibility of them “adopting” me. As a result , I had an appointment this past Monday (August 12) with Dr. Rosenblatt who is the transplant pulmonologist director . The appointment went well, but my lung function is down again. I blew between 76%-79% of predicted. Dr. Rosenblatt said I have “mild” obstruction. I was a bit concerned and upset with that. I’m not sure what’s causing it since I’ve never had any confirmed rejection. He said I was doing good exercising and had my diabetes under control. Overall, he still said I was “doing great”. Dr. Rosenblatt is not only knowledgeable about lung transplants but also cystic fibrosis . I still have the symptoms and side effects from CF. The transplant only “cures” the lungs and liver aspect of CF. My new lung coordinator told me to contact the transplant teams in Houston and let them know that Dr. Rosenblatt had “adopted” my case. He wants to see me back in 3 months. That’s about the same amount of time that I was seeing the Houston transplant teams. In addition, the doctor wants me to have weekly blood work. That won’t be bad. I’m going to start getting my blood work done @ Baylor Hospital in Plano.

I meet my new hepatologist (liver) and endocrinologist (diabetes) next month at Baylor Dallas. I plan on making another post and update after my appointments in September. Stay tuned.

Recently I had the privilege and honor of meeting one of my dear CF camp buddies named Angi. She is a multi-organ transplant recipient and her doctor is Dr. Rosenblatt. Angi and I used to go to CF camp as kids every summer and fall. It was the best time of our childhood. I last saw Angi approximately 30 years ago. We met up last Monday at Baylor Hospital. Angi offered to show me around the hospital and introduce me to everyone. It was so nice of her to spend her day with me. I was lost but Angi helped me learn the ropes. Thank you so very much Angi. 🙂

Thank you for reading my blog and following my journey. It’s the beginning of a new chapter.

My CF camp buddy Angi. It was so great to see her.

Taking my oxygen saturation. Getting ready for the 6 minute walk.

6 min walk. I set a new personal record of 1570 feet.

My father & I sitting in the transplant clinic waiting room.

My new lung transplant coordinator Jill.

My new lung transplant pulmonologist Dr. Rosenblatt.

2nd Year Transplant Anniversary Check-Up

Last week was my 2nd transplant anniversary annual check-up. My mother and I left for Houston last Monday, May 20. I had a full week of tests and doctor appointments. Last Tuesday I had lung clinic. I had a lot of tests Tuesday. One of my tests was a bone density test. The bone density test showed that I have osteoporosis. It is quite common in CFers and post transplant patients. I don’t absorb calcium very well because of the CF and the prednisone. The doctors are very concerned that I may fracture a bone. They put me on a weekly dose of vitamin D2 (50,000 units). In addition, my blood pressure continues to run high despite being on a blood pressure medicine. It was 158 / 81. Dr. Harish put me on a second blood pressure medicine. I was already on Metoprolol. The new one is called Lisinopril. I’m hoping it works to finally bring my blood pressure down to a normal level. I did well on my six minute walk. I walked 1450 feet in six minutes. My record is 1500 feet. The bad news is my lung function was down 13% to 73% of predicted. I had a really sharp pain in my right side which accounted for the lower numbers. Dr. Harish ordered a kidney ultrasound to check for kidney stones and also ordered PFT’s (pulmonary function tests) to be redone Friday. The positive news is Dr. Harish said my lungs look “pristine” on the CT scan.

I had a bronchoscopy on Wednesday. Dr. Harish said my lungs “looked good”. The great news is my biopsy showed NO rejection and NO infection! Yay! My kidney ultrasound on Wednesday was inconclusive. My coordinator said I may “possibly” have a kidney stone and need to see a urologist. What?!

On Thursday I saw Dr. Gordon and the liver team. In addition, I had an abdominal ultrasound (including liver) . Dr. Gordon said my liver looked good, the blood vessels were normal size, and the flow rate was good. My liver enzyme levels were normal. My mother and I presented Dr. Gordon with a baby gift for her precious newborn baby girl. Thursday was a really good day.
I spent the rest of Thursday doing a 24 hour urine collection (ordered by the liver team). The urine collection may not be fun but it is vital to check the functional level of the kidneys. The transplant drugs are very hard on the kidneys and it is not uncommon for transplant individuals to eventually need kidney transplants later in life. Therefore, I’m grateful they are keeping such a close watch over my kidneys. I’m already in the early stages of kidney disease. 😦

Friday was the fourth and final day of testing. I had to turn in the 24 hour urine collection followed by more blood work. The vampires…. Errrrrr, phlebotomist took 12 vials of blood. That is in addition to the 20 vials of blood taken Tuesday. I’m surprised I had any blood left after Friday morning. LOL I had PFT’s again as well as another 6 min walk after the blood work. My PFT’s were better this time. I blew 81% of predicted (only 5% less than Feb.) and my lung volume was up 1/2 liter from Tuesday. I wanted to get higher results but that’s the best I could do with the dull pain in my right side. I got exactly the same distance on the 6 minute walk as Tuesday: 1450 feet. All in all it was a good day. It felt good to finally be finished with all the testing. It was a very exhausting five days. Whew! I was tired. The annual testing is pretty intense. It turns out to be a pretty good physical which will detect anything wrong. I’m grateful for the ever watchful eye at Methodist Hospital. They do a great job making sure I get the best care possible in the ever changing world of transplantation.

I went to Missouri for two weeks earlier in the month (prior to my annual check-up) of May. I went to visit my girlfriend Jeannine as well as participate in the Cystic Fibrosis annual walk called Great Strides. It was my 2nd year in a row to walk at the Great Strides in Kansas City. I had a blast in Missouri and the walk was a huge success. We had beautiful weather and a good turnout. It felt really good to give back to the CF foundation and help them get one step closer to a cure. There are promising breakthrough drugs on the horizon.

I would like to thank everyone who donated to this years Cystic Fibrosis Great Strides walk. You know who you are. THANK YOU. It was greatly appreciated. For those of you who didn’t donate… You can always donate next year! 🙂 Team Gary and Jeannine did really well with fundraising. The walk was a huge success due to everyone’s generosity. I raised $878 and Jeannine raised an amazing $1,385! I’m proud to announce that Team Gary & Jeannine raised a combined $2,263!!! We are looking forward to the day when CF stands for “Cure Found”.

Thank you for reading my blog and following my journey. It’s been an amazing and wonderful two years. Thank you, donor. It’s been a blessed ride.

Still knocked out from the bronchoscopy. In the recovery room.

Presenting the baby gift to Dr. Gordon.

Dropping off the container for the 24 hour urine collection. Notice the igloo (which I had to carry all around the hospital) in my right hand.

Jeannine and I at the Great Strides walk in Kansas City. We have our team t-shirts on.

Sitting on the front porch in front of Jeannine’s house.

Another picture of the happy couple.