Thursday, September 22, 2011

The Truth about Lung Transplantation

Most of those who are at end-stage lung disease hear this statement when considering lung transplantation as an option: "You are trading one illness for another". Ok yeah, that's true, but it is not a reason to say no to transplant.

I do have the greatest respect for my friends who decide that transplant isn't right for them though. I recently had a young Cystic Fibrosis friend pass away, because her center turned her down for transplant, and she said she didn't have the means to travel to another center. In my heart, I think she was just scared, and she didn't want to go through the transplant process. That is very understandable, since it is definitely a scary surgery/recovery.

When I was being evaluated for a transplant, and undergoing the treatments necessary to get me as healthy as could be for a lung transplant, I knew no one who had gone through the surgery. Even though we should be thankful for all of the online support groups now, and the forums, and facebook for giving us a pretty good picture of what lung transplant surgery looks like, I still am kind of thankful that I knew nothing about the process at the time. I did meet two young women after I had been evaluated and accepted into Duke's lung transplant program who had been through lung transplantation. One had done extremely well, and the other was struggling, even after almost a year post-transplant. I knew it was the end of my life with my old lungs. There was no question that I would go through the surgery. I went in with a positive attitude and also with faith that no matter the outcome, I would be going home... either to my family or to heaven!!! It got me through, and it was the only reason I was able to have peace through it all.

Fast forward almost 10 years. I see the reality of those who have had lung transplants. The lungs are the single most solid organ that is more likely to be rejected by your body than any other. Even though I do know someone who is 18 years out of double lung transplant, I don't know many who are more than 10 years out. It's a reality. It's definitely not something we obsess over or focus on, but it is reality. Again, that is why I support the Lung Transplant Foundation, who's main goal is to fund research by doctors like Scott Palmer at Duke, who continue to find ways to combat chronic rejection in those who've had lung transplants.

As most of my friends know, I had to have a kidney transplant 7 years after my double lung/living lobar transplant. This will happen to about 15% of those who've had lung transplants due to the damage the anti-rejection meds do to the kidneys. That is only one of the possible complications that come with lung transplantation. The risk of cancer is much greater in those who've had transplants, because the anti-rejection meds decrease your immunity. I've had several friends survive these cancers, several friends who are still fighting, and several friends who unfortunately lost their battle to cancer after successfully coming through a transplant.

I have squamous cell carcinoma on my scalp. It is spreading, and even though I have treated it with topical medication and cryotherapy, I am getting new patches almost every few weeks. If surgery is the only final option, I'm not sure how much scalp I will have left. I'm so thankful that it hasn't gone beyond the superficial layer and that I have a great dermatologist, but this is just a reality of post-transplantation for a lot of folks.

When looking for a center to be transplanted at, I want to remind all of my end-stage lung disease friends to look for a center that cares more about getting you 10 years out than getting you 2!!! I cannot stress this enough. Most transplant centers today can get you off the table and through recovery. MOST centers today cannot or rather will not treat chronic rejection (an eventuality with those who've had lung transplants) aggressively. Ask your center what they do for you if you are suspected of having Bronchiolitis Obliterans (chronic rejection). If they say "we just put you on Azithromycin 3 times a week), leave immediately and find yourself another center. It's unacceptable! Getting you off the table isn't enough. I promise when you get 10 years out, you will want more and more and more. Am I being selfish? Maybe.. since so many don't even get the chance of a second life, but I'm also being realistic and telling you how you will feel!

I am thankful for my 10 years (this November) with my new lobes. I am so beyond thankful to my mom and uncle for their donation (my mom's twice donation). But I want more time. I want to see my daughter grow up and graduate and go to college and get married and have children. I am selfish. I want time. I beg all of you to be as selfish as I am.


Leah said...

Absolutely wonderful and helpful post! If I had known that my transplant center had no protocol for their patients in chronic rejection I would have gone elsewhere to begin with. I appreciate the hard work they did to get me transplanted, but like you said, I want MORE. It's not too much to ask, especially when there are so many centers using all kinds of methods to help with cr.
I spoke to my tx coordinator the other day and explained that I found a Dr who is treating my cr with photopheresis and she said she hasn't even heard of such a treatment! Hard to believe this is a teaching hospital that doesn't keep up with the latest treatments.
Patients need to be more aware of what their potential transplant center is capable of doing for patients in BOS (cr).
Thanks for writing this, Christy! I hope a lot of pre tx people read this before choosing their tx center.

Christy said...

Leah, I know that some are tired of me drilling it into them, but since BOS is a reality for those who've had lung transplantees (if nothing else gets you first), it's so important to be informed. I'm so sorry you had such a crappy center, but I am glad at least one doctor listened to you. Much love and many wishes for many more years!!! XOXO

Christine said...

Thanks for good questions to ask our centers!! Hang in there with the cancer crud.

Shannon said...

hey, my uncle with Cf is now almost 15 years out of his transplant! pretty amazing! Ilike to remember he and I share some of the same genes, so maybe when my time comes my body (and donor's body) will cooperate. I get so down sometimes about the statistics with tx and what I've seen my friends go through that the positive stories and all the people who say even if I only get one, five, ten years out of this - it was worth it are what keeps me hanging onto the idea that tx can be and is a miracle

Loretta said...

wow. that's amazing to receive 2 lobe of lungs from live donor. such a wonderful gift.

i just found your blog. =)