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.

Lungapalooza 2011

Why the organization Lung Transplant Foundation means so much to me:

This organization means so much to me for many reasons. The biggest reason is that my doctor, who stepped down from the medical director's position of the lung transplant program at Duke to put his main focus on research, truly does care for his patients. He is pouring everything he has into finding ways to prolong the lives of his "older" transplant patients, i.e. those 5+ years out from transplant.

The Lung Transplant Foundation was started by a fellow Duke lung transplantee, and although the entire board of directors is somehow affiliated with Duke or the area, the organization's goal is to branch out to other medical facilities to fund research there that focuses on extending the lives of lung transplant patients. Research at ANY center can benefit lung transplant recipients from around the world!

Because the lungs are the only transplanted organ that is exposed to our outside environment, they are susceptible to pollutants in the air, and this is just one more reason the lungs tend to reject quicker than any other transplantable solid organ in the body. Eventually, those of us who've had lung transplants will get chronic rejection in our lungs (scarring from our body's defense system attacking the foreign organs). My doctor's research focuses mainly on finding treatments to slow this down, and hopefully one day find a cure for it. This foundation is the only one of its kind, and with the funds the organization hopes to receive through awareness/fundraising, they hope to expand it, so that many research hospitals throughout the states can have grants to further their work.

All of us who get transplants want those few extra years to spend with our families and live our lives. We are told from the beginning that a transplant isn't a cure, it's just an extension of life. We all think at the beginning that getting another 5 years to live will be satisfactory. Although, it is wonderful to have those extra years, after you get there, you want more. Of course I am to the point of one day hoping to see my grandchildren born. I hope with the LTF's fundraising, and with doctors like Scott Palmer, Scientific Director at Duke, I and so many others like me, can look forward to a normal life expectancy after lung transplant.

Please sponsor me in the Lungapalooza 2011: A Walk for Breath which benefits Lung Transplant Foundation. You can go here to sponsor me in the walk, and you can read all about Lung Transplant Foundation here.

Thank you for helping save the lives of me and of many of my closest friends! XO

Lungapalooza: A Walk For Breath

On September 19th, 2010, the inaugural Lungapalooza: A Walk for Breath was held at Duke University Medical Center. The Lungapalooza is an event to raise money for the Lung Transplant Foundation, a non-profit organization who's mission is "to promote and advance research in order to improve long-term outcomes among lung transplant recipients".

Below is a slide show put together by Amber, a dear friend who has had two double lung transplants, and who was a major facilitator in making the Lungapalooza happen. The photographs were mostly taken by me and by another amateur photographer who works for Duke University's Center for Living.

Enjoy!!!

Lungapalooza from Amber Wesemann on Vimeo.