Transplant Fear

[kathleen-sheffer]

Hi Chris! Thank you for starting the topic and sharing your story. I’d say it’s never too early to start thinking about transplantation. You will not receive a transplant unless it’s absolutely necessary. Unfortunately, organs are in such high demand and short supply that PH patients often spend at least a year on the waiting list *after* doctors have decided a transplant is absolutely necessary. Your doctor is right to suggest you start considering it.

I went through a full transplant evaluation and workup in June 2015, but my team said I wasn’t sick enough to be listed because I would never receive organs at such a low priority. Great with me! Then, in May 2016, I had an event where I coughed up blood and my O2 sats dropped into the 30’s. I was on 4 liters of oxygen and couldn’t make it a block without feeling like I was going to pass out – a huge change from months prior when I was hiking up steep hills unassisted. July 1, 2016 I was transplanted, and so grateful I had already gone through all the training and testing when I wasn’t in an emergency situation.

As far as your question, how long does it last, your team will give you statistics on 1, 5 and 10-year survival rates. However, the first successful double-lung transplants were performed in the mid-1980’s and some of the first recipients are still alive today. So there’s no way to say how long a transplant can last. I personally know recipients who are over 20 years post-transplant.

Transplant recipients are on an immunosuppression regimen for the rest of their lives, which includes a low dose of Prednisone, usually CellCept and Tacrolimus (or another in its class).

Transplantation is not a cure, but it is a treatment option for PH and specialists should be looking at all the options you have to give you the best quality of life. Fear is natural, but having more information can give you some power over it. Keep your questions coming, I’m all ears!

[Cris Dingman]

Thanks Kathleen. I guess I’m just having to get used to my new reality, and I am hard-headed! It’s having to learn that I cannot just “walk this off” like I would have done I the past. And part of me is hoping and praying that some sort of stem cell therapy will come along. So much progress has been made in so many medical areas, maybe… My other question, that my doc won’t, or can’t, answer is how long do most PH patients stay “stable” until their health really starts going downhill. Thanks for getting this site going by the way!

[kathleen-sheffer]

You’re right, it’s a hard one to walk off. I am hoping and praying that progress will be made with stem cell therapy and other methods to reverse pulmonary hypertension! I also hope improvements will continue to be made to the way transplants are performed and maintained.

Even if there were an answer to how long most PH patients stay stable, it probably wouldn’t be useful to you as your journey will be unique. I’ve been told, and learned in practice, that the downhill trend can be quite sudden, making it all the more important to be prepared in advance. However, I was treated for 16 years and know many other long-term PH survivors.

I was first evaluated and listed for a transplant in 2003 and went off the list with the development of Revatio, which kept me stable for another 12 years, during which time many improvements were made to transplantation. I encourage you to explore all your options, which does include transplant.

[kaye-norlin]

Hi Chris,
I received a bi-lateral lung transplant on January 3rd, 2018. it was a very difficult decision for me to have the transplant, even on the way to OR, every fiber in me was screaming to go home. I made the decision with my family after a sudden and severe change in my PAH in 2016 when I did “code” in the hospital; fortunately, I did this in front of a nurse in the intensive care unit so the response was rapid and I survived. I was sent to a transplant center the next day to wait for a transplant or die (no one expected me to live) but my health improved and I went home a month later. I decided on the transplant because it was my best option for a future. I had 2 false alarms for transplant in 2017 which was ok with me because I wasn’t quite ready but in late 2017 when I knew that my PAH was getting worse again, I was ready. Even though I was terrified, I didn’t want to die; I have things to do. I am home and getting stronger each day, but waiting for spring to be in the world again. I feel that I can now plan my life.

Prior to my transplant, I was very busy working as a social worker, teaching at the junior college, teaching yoga for people with health or disability issues, costuming plays, gardening… I gave much of that up or modified how I did it when I got really ill. My decision to transplant was a quality of life issue. I am excited to get back to doing things that I love. I retired December 2017 from social work but I have so many other things to do. I am so happy with my decision now but it was truly the most difficult thing I have ever done. I have a great family, good transplant support group to attend and I am allowed to go back there and yoga at the cancer center starting next week.

I have a lot of new fears, post-transplant, but prior to January, my biggest fear was dying soon. I follow my team’s instructions, watch my diet, exercise, and avoid anyone who wants to tell me horror stories. I like my life better without the oxygen attached 24/7 and the tube coming from my chest. I take lots of meds but that will get better. I feel that I have control of my life again and I plan on living a long time and have my goals and bucket list. I, too, know people who were transplanted 20+ years ago and are thriving.

The decision to transplant or not is different for everyone and is an extraordinarily difficult decision. I hope you find the best path for you and I send my prayers.

[kathleen-sheffer]

Thank you so much for sharing your story, Kaye! I have the same feeling of relief at being able to plan my life now after years of uncertainty leading up to my transplant. I’m so glad you took the plunge, despite the overwhelming fear! I can’t wait to see what you will do with your new lungs. I am sure your yoga students will benefit from the perspective you gained from the experience.

[kaye-norlin]

Kathleen,
Have you tried the harmonica for post-transplant lungs? Just wondering since research says it is good and more fun than the Aerobika. I just got one but have no idea what to do with it and have little musical talent- should have bought an instruction book.

[michael-allen-parker]

I was diagnosed 2 years ago with stage 4 heart failure from pulmanary arterial hypertension. My disease has progressed and my heart has worsened so talk of a double lung transplant possibly even heart transplant is emerging. Has anyone had heart failure and went through a double lung transplant ?

[kaye-norlin]

Michael, Yes I was in heart failure, “coded” once, survived my bi-lateral transplant and am thriving now. Trust your team and make the decision that is best for you.

[cyndi-mackey-roark]

I just started the talk with my doctor. Can anyone talk about the pain and roughly how long it takes to recover. How long are you in the hospital or laid up? I have a 3 year old and it worries me to miss out on so much during recovery or how he could impact my recovery.

Thanks
Cyndi

[kathleen-sheffer]

Hi Cyndi,

Everyone’s transplant journey is different so it’s difficult to predict the things you ask about. I can say that I was hospitalized for 23 days, which is a bit longer than average I think. I lived close to the hospital for two more months and was living independently around 4-5 months after surgery. I would say I had fully recovered a year after my transplant. You will only receive a transplant if you have exhausted all other options so it’s a relatively short time you might miss out on in exchange for more life and more energy with your family. One thousand times better than the alternative!

Transplant patients need to be even more careful than PH patients about getting sick. Infections can start a cycle of rejection issues, and immunosuppressant medications make us more prone to them. For this reason your doctors might advise you not care for your child while he or she is ill. You will find a way to safely do the things that matter to you, though.

Good luck to you and feel free to keep asking questions – a few others here have received transplants as well.

[kaye-norlin]

Hi Cyndi,
Everyone is completely different. I was in the hospital also for 23 days, out on Jan 26, 2018. I had some issues with kidneys and fluid retention, electrolyte problems; my digestive system kind of shut down due to an old cancer issue- and a few other things. I have heard of people getting out in 7 days. I was end-stage PAH and heart failure when I was transplanted. Went to my first indoor flea market today. Back to yoga. Working from home. Taking an on-line class. Mall walking starts tomorrow so I am in shape to do the O2 Breath on May 5th. If I didn’t do this, I would be a world-class couch potato.

[kathleen-sheffer]

Kaye, it’s such a coincidence we were both hospitalized for 23 days! I guess we are not a great case study in “everyone is different.” Haha. I’m so glad you are setting goals and doing new things since your transplant. Love hearing this!

[jamesvolinsky]

At 70 years old is a lung transplant a good idea,James Volinsky. My first post,am I doing this right.

[kathleen-sheffer]

Hi James and welcome to the forums. I know a few transplant recipients over 70 who have benefitted from the operation. Some centers do have an age cut-off, but age is more than a number. If your physicians think transplant is a good idea for you, I would trust them enough to start the process and learn more.