Transplant

[MikeInMT]

Its been a long time since I have posted here. I received my double lung transplant 7-29-2013, at age 30. If any of you have any questions about any aspect of my expierence going through the transplant feel free to ask. I will share any thing and everything. I will start logging in here more often

 

[cam]

I'm goin to need one probably near future my pfts r bad how painful was it after and how ru feeling and doing with rejection and did u have cepecia or pudemudes and how is the outlook for you in future and how bad were u before u recived ur lungs and how was recovery sorry lot of questions thank u very much. I'm so worried

 

[MikeInMT]

No, don't apologize you can never ask to many questions on a major surgery as this. To be honest I do not remember much of the first few weeks after surgery, as you will be on a lot of pain killers, well atleast I was. I have had zero rejection attempts. And don't pay attention to life expectancy numbers. CFers are in a class of their own. The numbers they twll you are average of everyone young and old. But every body is different on how their body adjusts. My body could have not done any better. My pfts now are 95%. My dr said its not very common to achieve that high. It also takes low dose of anti rejection to suppress my immune system. I never had MRSA but was plagued with pseudomonis. As how bad I got, I won't lie or paint a pretty picture. I was in rough shape. Going grocery shopping was very hard for me. It felt like I had just pulled a double shift. I had to take a nap. I was sleeping up to 16 hours a day. Going into surgery my pdt was 19 %. It does get worse but it is very much worth it. Waking up from surgery was night to day difference. The worse complication I have had was with the wires. I could not pull or reach up and grab stuff was painful, was not a big deal after dr removed them. But if that is the worse complication I have had then great. But no matter what giving up was never an option for me. Some advice I would recomend is getting a feeding tube. I got to where I was only eating maybe 5 crackers a day. The feeding tube kept my weight up and got me through transplant. I hope nothing but the best for you and anyone who is or will be going through this. As always feel free to message me if you need someone to talk to.

Edit: I forgot to say the hardest part was getting off them damn pain pills. Try to take as few as possible. Cause once you get hooked it is hell getting off them

 

[cam]

Thank u so much for reply I needed to hear that ur doin good and there is hope thank u

 

[daniela.l]

Hello! I am an 18 year old with severe cystic fibrosis. Over the last two years, my lungs have taken a turn for the worst. My PFts went from 55% to now, 20%. Right now I am in contact with the transplant team as it seems that this is the only way to improve my health. I grow MRSA and Pseudomonas that are resistant to basically any antibiotics. How long were you on the waiting list? It seems that it takes a long time to get the actual lung transplant.

 

[donin]

Daniela - my son is 25 and has just started being evaluated for transplant. It is very overwhelming. We live in New England and it seems the wait times are longest here. I hope that he might be able to go to Duke or Pitt where transplants seem to happen faster, but moving out of state will be challenging. Where are you looking?

Mike - where were you transplanted?

Thanks.

 

[cam]

Goin to pitt on 23rd to start this I hope it goes well I just hop one day that there is a cure for everyone so no body else in the world goes threw this and everyone gets healthy I just want to breathe and live and able to do things and enjoy life hope nothing but best for everyone

 

[daniela.l]

Donin, I am being seen in the University of Michigan Health System. I have yet to schedule an appointment with the transplant team, but I am nervous and definitely overwhelmed that this is happening sooner than I thought. Is Pitt the place where most lung transplants are done? Good luck to your son!

 

[donin]

Daniela - From my research I think that Duke and Pitt are really the places to go. Of course there are challenges (financial and logistic) with moving far out of state for an undetermined length of time. I wish that I thought my son could get a transplant fast enough in Boston, but there just aren't enough organs. I hope that you are listed and transplanted quickly and can resume your life with easy breathing.

 

[piggylu]

Good to hear you are doing well!!!!
Anybody on this thread gone to University of Colorado in Denver for transplant?

 

[LittleLab4CF]

Congratulations MikeinMT! And thanks for offering to speak (write) with fellow and future transplant patients. I'm saving this thread just for these questions. Scientists of my generation saw some of the first organ transplants and many, including me, worked on the problems and challenges of transplant. I was on a team doing kidney transplants on dogs and primates and later observed a kidney transplant on twin sisters, one a donor, one recipient.

I understand the mechanics of organ transplant and can't begin to imagine the mental and emotional travails of the process first person. On another post topic, DLT was discussed with wide ranging feelings. From keeping pictures and maybe video of the surgery to show anyone who was interested to not wanting to know " nuthin" everyone is different. I'd love seeing a DLT because I am curious and know I will never need one, but...

Anyone who has roots in farming and ranching eventually must eat what they grow. My Great Uncle Lovell was a Nebraska rancher/farmer and though I spent parts of the year visiting, my big city attitude scratched his itch to "learn me a lesson", which usually involved pain and embarrassment. Ever take a chicken from the yard and eat it? In addition to running around with its head cut off, it was shooting blood everywhere it ran, flopping its headless neck like an unattended garden hose. Then we scald, dress and I would get to pluck feathers for ever. Strangely enough the roasted bird looked and smelled delicious and I ate up. After supper Uncle Lovell and I went back out in the completely black night and shut everything up or in. About two seconds after he praised me for not avoiding my Aunt's cooking, all things considered, I was sick. To this day I never look at food without appreciating what was done to provide it. And I can appreciate the physical trauma in such procedures.

More to the point, TX patients have been there and done that and many CFers are heading toward an experience equivalent to a trip to Mars. There's no better reference and help but that from those who've been through the process, including any family.

Thanks to all who are willing to answer transplant related questions.

LL

 

[AllthebestforLiam]

Thank you for offering to answer questions. I have always been wondering whether the new lung will eventually get the same problems with mucus, bacteria etc, and if you still have to do inhalations and vest treatments with your new lung. I mean, does the body turn the healthy, non-CF-lung into a CF-lung? Or will it be CF free and the new lung will last for as long as it doesn't get rejected? Do you have to be very careful about viruses and bacteria after your transplant?
Thanks!

 

[MikeInMT]

Hello! I am an 18 year old with severe cystic fibrosis. Over the last two years, my lungs have taken a turn for the worst. My PFts went from 55% to now, 20%. Right now I am in contact with the transplant team as it seems that this is the only way to improve my health. I grow MRSA and Pseudomonas that are resistant to basically any antibiotics. How long were you on the waiting list? It seems that it takes a long time to get the actual lung transplant.

A lot of things can determine the wait time, such as location, blood type, lung size. I was on the list a total of about a year and a half. I have 3 "dry" runs before getting a set of lungs.

 

[MikeInMT]

Daniela - my son is 25 and has just started being evaluated for transplant. It is very overwhelming. We live in New England and it seems the wait times are longest here. I hope that he might be able to go to Duke or Pitt where transplants seem to happen faster, but moving out of state will be challenging. Where are you looking?

Mike - where were you transplanted?

Thanks.

I had my transplant done at the University of Washington Medical Center in Seattle. Denver is closer to where I live, but as you said the wait times are long. So I chose Seattle.

 

[MikeInMT]

Good to hear you are doing well!!!!
Anybody on this thread gone to University of Colorado in Denver for transplant?

That is the closest transplant center to me, The CF doctor, before he retired, Dr. Accurso actually recomended I go to Seattle because of the amount of transplants done.

 

[MikeInMT]

Thank you for offering to answer questions. I have always been wondering whether the new lung will eventually get the same problems with mucus, bacteria etc, and if you still have to do inhalations and vest treatments with your new lung. I mean, does the body turn the healthy, non-CF-lung into a CF-lung? Or will it be CF free and the new lung will last for as long as it doesn't get rejected? Do you have to be very careful about viruses and bacteria after your transplant?
Thanks!

The new lungs will not get infected with Cystic Fibrosis, as they were created "normal" without the defective Gene. 3 Days after the breathing tube was removed, I took off the oxygen, and 10 days after breathing tube removed I have yet to do a neb. And yes to an extent about viruses and bacteria. I definatly am more aware of my surroundings and sorts. an example is when I go grocery shopping I always wipe down the handle on the cart. And I always wear a mask at the hospital.