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Healthcare FacilityThe Methodist Hospital
6565 Fannin Street
Houston, TX 77030-2707
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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.
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
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.
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.
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.
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!
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.
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.
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*