Health & Beauty, Home & Happiness

April 3, 2016

Donate Life Month 2016



About a year ago I was in the doctor's office with a small group of friends, family, and health care workers discussing my future need for a double lung transplant and what that all means for me.

I wasn't aware that double lung transplants cost upward to $1,000,000 or that in certain circumstances helicopter rides to transplant centers have to be paid for upfront. I knew about all of the pills post tx, the chest tubes, the physical therapy, etc..

The cost of transplant can be a huge burden on families. I wish families didn't have to work so hard or struggle to be able to provide basic needs and life saving medications for their children. I also wish families could focus on spending time together instead of worrying about how much time they have left together.

Transplant comes with a lot of risks. The risk of rejection is highest in the first year. Organ failure is another top concern. Basically, it's like trading one set of problems for another.

In order to have the best chances at transplant they want you to be as healthy as you can but patients are listed in order of severity of disease, meaning the sickest patients are at the top of the list and your position on the list changes based on your Lung Allocation Score (LAS.)

In order to be put on the list patients go through what's called "evaluation" which is basically a series of tests and blood work that check the heart, lungs, and other organs to make sure they're in good enough condition to go through the operation. There's a lot of paperwork involved and patients can also be declined for a number of reasons.

The goal is to make sure patients survive long enough to get the call but that they are sick enough to where their quality of life would be better and hopefully longer with a transplant and its risks.

Usually pft's need to stay in the 30% or lower range for a long period of time and patients are usually on some sort of supplemental oxygen and/or need help with daily tasks (grocery shopping, meals, laundry.. etc) in order to be evaluated and eligible for a transplant along with many other factors.

Fundraising can be done through a number of organizations such as COTA, which helps families raise funds for organ transplants.

The operation usually takes six hours or more and double lung transplants are one of the riskiest organ transplants because of the risk of infection. Patients must live close to the transplant center after transplant usually for several months or more with a caretaker and are required to do extensive physical therapy.

I have some friends with CF that have received transplants or are currently on the list. All of them so far have seemed extremely grateful to have gotten their transplants and I'm glad that transplant has offered them another chance at life. The quality of life some people have after transplant is amazing - I've heard of people running marathons, going back to school, getting jobs.. etc. Approximately 80% of transplant recipients live 1 year post transplant and about 50% of lung transplant recipients live 5 years post transplant.

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Personal note:

Deciding whether or not to have a transplant is an extremely personal choice. I'm still not sure if transplant is right for me. I go back and forth on the decision and I know it's a huge responsibility and decision to make. If you have lung failure and you don't get a transplant you essentially die, so transplants are literally life-saving for people. Transplants are NOT a cure for Cystic Fibrosis.

For now I'm working on being as healthy as I can and trying to accomplish as many of my life goals as I can. I think regardless of whatever decision I make I'm not really going to know what I'll decide until I have to. I've heard the stories and I've seen the difference it can make, but there's a lot more to it than just a surgery and I've been considering everything into making my decision.

However much time I have left I'm already grateful because I've gotten to do a lot of things that I've wanted to do and experience some things I never imagined I would experience. Hopefully I have at least a few good years left in me with these lungs before I have to make a final decision. I'm happy that the option for transplants exists for the people who want and need them that wouldn't otherwise survive.

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How to Help:

**The number of organs currently needed outweigh the number of organs that are donated so please if you aren't an organ donor, read more information about it and find out how you can become one at: www.organdonor.gov **
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1 comment

  1. Hi there, Sara! I just wanted to apologize for my HUGE delay in responding to your request to be added to the CF Blogroll. I've been really sick for the last few months and it's gotten me quite behind! I have added your link now. Best of health to you, and good luck with the transplant decision!

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