Friday, June 27, 2014

Resources for potential transplant patients- where to begin?

As I begin my transplant journey I think about how much I have learned already. The very idea of a transplant is overwhelming. Once you get past that idea there is so much to think about- where to get the transplant, how much insurance will pay for, who will support you and much more. There is a lot of data out there but it is important to know where to look for it. Your transplant center should answer all your questions but may not volunteer information about their program unless they are asked.

Once you are told that you might need a transplant the first place you should go is
UNOS stands for United Network for Organ Sharing. They are a non profit group that controls a huge database of all the patients waiting for organs in the United States. When an organ becomes available UNOS will help determine who should get the organ. They also maintain large amounts of data about waiting lists and each transplant center. If you go to and click on donation and transplantation then data you will see all the information available. You can look at waiting lists by center, UNOS region, organs, blood type and many other variables. This will give you some idea of how many people are waiting for each particular organ at each center. For example, as of 6/26/14 there are 4,021 people waiting for hearts in the entire country. You can drive yourself crazy looking at these statistics but they are also very useful.

UNOS also has a lot of information about organ donation awareness. There are several educational brochures teaching people about organ donation and addressing some common myths. There is information about how to sign up as an organ donor as well.

Another very important site is Scientific Registry of Transplant Recipients. ( This site lists survival rates for each center for each organ. There is also a very detailed report about each transplant center. If you click on transplant center report then choose your organ you can see the report for each center. I would strongly suggest reading these reports. They have very detailed statistics about mortality rates on the list, how many transplants are done, how fast the waiting lists move, etc.

Take a look at several transplant centers. Your insurance company should allow you to choose where you are most comfortable. The closest one may not be the right one for you. Talk to your current doctors about their thoughts. Join support groups. There are several on Facebook that I have found to be helpful: (my experience is with heart transplant patients but there are many groups for all types of organs)

Heart transplant survivors

Heart transplant

TLC Transplant Lifestyle Changes

Heart transplant families

Transplant community outreach

Transplant: The good the bad and the Ugly

Transplant survivors

I would suggest joining as many groups as you can. Meet people who have been through what you are going through. It was VERY helpful for me to talk to people on Facebook who are my age who have been through this. They can help you understand things much more than the transplant team can and will relate to you in a different way.

I'd love to hear about resources or support groups you may have found.

1 comment:

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