How Long Have You Been Listed?

[Mary Easley]

This is my first post to the forum. I was diagnosed with PAH 2 years ago and am on triple combo therapy along with diuretics, potassium, and iron. And of course, oxygen. Anemia has been a problem due to severe nosebleeds caused by Tyvaso (I think) and complicated by HHT, Hereditary Hemorrhagic Telangiectasia (try saying that 3 times quickly). A person with HHT forms blood vessels without the capillaries that are usually present between arteries and veins. My bleeds are intense since they come from arteries instead of capillaries. I had 4 transfusions last summer. Two rare diseases, I really hit the jackpot!
I recently received insurance authorization for lung transplant evaluation at UCSD. I am going to go for the evaluation, but at 65 years old, wonder if I am wasting my time and UCSD staff time. Once approved, on average do people wait months or years on the waiting list? I know it is dependent on a suitable match, but as O- blood type it might be awhile. How long can you remain on the waiting list only to be excluded because you have gotten too old?
I thank all of you for information I have gleaned from these forums. First hand experience descriptions have been so helpful.

[Colleen]

Welcome Mary! Thank you for sharing and asking these important questions.

My son received a heart and double lung transplant 5 years ago. He waited a year and had one dry run. He’s had friends who only waited a few weeks, some waited years and sadly, there have been many whose call didn’t come in time. You will be rated for listing and certain things place you higher up on the waiting list. My son was in heart failure, on milrinone and had many other very serious problems showing proof of rapid decline, so he was placed high on the list.

I believe your overall health plays a more significant role in listing for transplant than age. Yes, you have to be critically ill, but you also have to maintain enough strength and a stable condition otherwise the decision might be made that a person isn’t strong enough to survive a transplant.

It makes me sad to hear that you are worried about wasting the time of others. Saving your life will not be a waste of anyone’s time and now-a-days, 65 is still young.

To be honest though, I’m not sure if there are age limitations. I think if you are 70 or older they will look more closely at your overall health and how much you will benefit from transplant. You will be assigned a representative that will be able to go over a lot of these questions with you.

[Brittany Foster]

Hi Mary,
Wow it really sounds like you hit the “jackpot” of medical conditions. I really hope that the medical team will be a help to you in answering some of these questions because everyone is different. I think it would also be best to talk with those that have received transplants here on the forums and to the ones that have been through the process. Colleen will be able to give some good advice. I know that when people are older than 60 and awaiting a transplant they start to worry about whether or not they will qualify because of their age. So you are not alone in your questions and your concerns. Like Colleen said, you are YOUNG and I’m sure you are young at heart and want to do so much more with your life and time. All of us are worthy of that in my opinion no matter what their age is!