Share this:
arlene618
@arlene618

Posts: 2
Joined: Nov 01, 2018

Lung transplants and wait times

Posted by @arlene618, Fri, Nov 2 2:14pm

Is there an average wait time for being on a transplant list? I have been on one for over 2 years and I think I am still on the bottom of a wait list? Does anyone else feel like they are getting worse with time yet they still are a low priority? I feel like I just can’t go on. Things are harder to do. Taking a shower cooking doing the dishes are all hard to do even with oxygen cranked up. What do the magic numbers need to be are far as breathing ctiteria. Is there such a thing?

REPLY

@arlene618 I don't know about lungs, but I do know that with the liver (my husband transplanted 7/7/18) that it depends on what is called a MELD score (Measurement of end stage liver disease) plus blood type and body size.

Waiting is so hard. Prayers that you move up and get the call soon.

Blessings,
JoDee

Hi @arlene618 and welcome to Connect. You'll notice that I modified the title of the discussion you started to "Lung transplants and wait times" to be more specific. It also distinguishes it from the other lung transplant discussion. You might be interested in these too:
– I'm considering a double lung transplant any advice. https://connect.mayoclinic.org/discussion/im-considering-a-double-lung-transplant-any-advice/
– Lung transplant https://connect.mayoclinic.org/discussion/lung-transplant-2b6d3f/
– “Patient & Doctor Chat 15 Years Post Lung Transplant” (archived video chat) http://mayocl.in/29W8WAa

To your question about wait times: The US Department of Health & Human Services has a database you can use to calculate wait times by organ. You can access it here: https://optn.transplant.hrsa.gov/data/view-data-reports/build-advanced/
It can be a bit daunting. I had to ask a colleague for help 🙂
Step 1: Choose "Waiting List"
Step 2: Choose "Waiting Time"
Step 3: Choose "Organ"

The results (attached) showed that most lung transplant recipients wait between 30 days to 2 years.

I'm sure that information isn't very encouraging if you have already been waiting for longer than 2 years. Have your doctors explained why you've been on the list for so long? Are you registered at multiple care centers?

Wait time by organ

The best information I know of related to transplants and wait times is UNOS. I'd include a link, but I'm a new member, and the powers that be won't allow it. Regardless, it's UNOS.org.

They are the folks who allocate organs in the US. You can drill down by region, state and transplant center. What becomes apparent is that wait times are not consistent region to region.

@mickj

The best information I know of related to transplants and wait times is UNOS. I'd include a link, but I'm a new member, and the powers that be won't allow it. Regardless, it's UNOS.org.

They are the folks who allocate organs in the US. You can drill down by region, state and transplant center. What becomes apparent is that wait times are not consistent region to region.

Jump to this post

Welcome @mickj. UNOS is a great resource. Here's the link https://unos.org/data/

Sorry about not allowing you to post the link. You see, we do that to stop spammers from flooding the community with unwanted links. It helps keep the community safe. You will be able to post links in a few days. For now, I'll be your link proxy. 🙂 Especially for relevant, credible and useful links like UNOS.

Mick, we look forward to getting to know you. Are you a transplant recipient? If yes, what organ?

@arlene618, I am a liver/kidney transplant recipient. Although I am not familiar with receiving a lung transplant, I am aware that everyone's situation is a very individual one. I understand your current struggle with managing the tasks of everyday living because that is how I felt prior to my transplant. (but I did not rely on supplemental oxygen).

I urge you to talk with your doctor(s) about your own specific situation about the length of time that you can expect to be waiting.

I assure you that it is okay to ask for help. And, yes, the waiting is awful. What are you able to do that occupies your mind and passes the time? Do you have family or friends nearby who can assist you with your daily needs?

@colleenyoung

Welcome @mickj. UNOS is a great resource. Here's the link https://unos.org/data/

Sorry about not allowing you to post the link. You see, we do that to stop spammers from flooding the community with unwanted links. It helps keep the community safe. You will be able to post links in a few days. For now, I'll be your link proxy. 🙂 Especially for relevant, credible and useful links like UNOS.

Mick, we look forward to getting to know you. Are you a transplant recipient? If yes, what organ?

Jump to this post

@colleenyoung Thanks for the welcome. And thanks for being my proxy. I completely understand why it's needed.

I am 4 months post liver transplant. For the most part, I'm going to stay on the sidelines on this forum because I'm so new to the journey. Add to that, I've had an extremely easy time post-transplant, kind of a best case scenario. I wasn't very sick going in (MELD of 14), and other than ascites, I was doing good. Add to that, I was only on the transplant list for a month, and it looks like I got a "clean" organ. I'm unbelievably fortunate.

@mickj

@colleenyoung Thanks for the welcome. And thanks for being my proxy. I completely understand why it's needed.

I am 4 months post liver transplant. For the most part, I'm going to stay on the sidelines on this forum because I'm so new to the journey. Add to that, I've had an extremely easy time post-transplant, kind of a best case scenario. I wasn't very sick going in (MELD of 14), and other than ascites, I was doing good. Add to that, I was only on the transplant list for a month, and it looks like I got a "clean" organ. I'm unbelievably fortunate.

Jump to this post

@mickj, Welcome. I am happy for you to have received your liver transplant, and that you are doing well with your recovery. Being 4 months new is a wonderful feeling, isn't it?
I am a liver/kidney recipient. I am 9+ years post transplant, and my recovery and life have been an amazing journey.

While you are still in recovery and watching Connect from the sidelines, I want you to know that you are welcome to read, ask, and share in any of the dicsussions.
I also want to point out the Pages section of Connect where there are materials for transplant recipients as well as living donors. Here are 2 newsfeed articles that I want to share with you.

What to Expect: Post Transplant Care
https://connect.mayoclinic.org/page/transplant/newsfeed/what-to-expect-annual-post-transplant-follow-up/

Top Transplant Hacks: Patients Share Their Best Tips and Tricks
https://connect.mayoclinic.org/page/transplant/newsfeed/top-transplant-hacks-patients-share-their-best-tips-and-tricks/

Any thoughts? Any questions? Anytime!

@rosemarya

@arlene618, I am a liver/kidney transplant recipient. Although I am not familiar with receiving a lung transplant, I am aware that everyone's situation is a very individual one. I understand your current struggle with managing the tasks of everyday living because that is how I felt prior to my transplant. (but I did not rely on supplemental oxygen).

I urge you to talk with your doctor(s) about your own specific situation about the length of time that you can expect to be waiting.

I assure you that it is okay to ask for help. And, yes, the waiting is awful. What are you able to do that occupies your mind and passes the time? Do you have family or friends nearby who can assist you with your daily needs?

Jump to this post

@arlene618 please keep up hope. I have a MELD score of 30 and have been on a wait list for 16 months. Some days I get very discouraged but with the support of this great group of people I am able to endure. From symptoms and side effects, medicines and experiences they are a wealth of knowledge.

@jodeej

@arlene618 I don't know about lungs, but I do know that with the liver (my husband transplanted 7/7/18) that it depends on what is called a MELD score (Measurement of end stage liver disease) plus blood type and body size.

Waiting is so hard. Prayers that you move up and get the call soon.

Blessings,
JoDee

Jump to this post

@jodeej I was w/o daring if you could help me with a question? My MELD is 30 my blood type O+. I've been waiting 16 months on the wait list. They tell me they are waiting for the right size. I'm not sure what size has to do with the transplant? I am a female 5'1". Is this what is holding me back?

Liked by jodeej

@gaylea1

@jodeej I was w/o daring if you could help me with a question? My MELD is 30 my blood type O+. I've been waiting 16 months on the wait list. They tell me they are waiting for the right size. I'm not sure what size has to do with the transplant? I am a female 5'1". Is this what is holding me back?

Jump to this post

@gaylea1 I know that body size is a consideration because if a person is to small their liver won't be large enough for a bigger person and a large person's liver is to big for a smaller person. Depending on where you live I would think that a 30 score should have you close to the top of the list. My husband got his with that score, but it was during the summer. I don't think that transplants happen as often this time of year, which is frustrating when you are waiting. You have lots of support here!
Blessings,
JoDee

@jodeej

@gaylea1 I know that body size is a consideration because if a person is to small their liver won't be large enough for a bigger person and a large person's liver is to big for a smaller person. Depending on where you live I would think that a 30 score should have you close to the top of the list. My husband got his with that score, but it was during the summer. I don't think that transplants happen as often this time of year, which is frustrating when you are waiting. You have lots of support here!
Blessings,
JoDee

Jump to this post

@jodeej yes I am very close to the top but am aware that others are being transplanted as the wait for the correct size. We our weather gets worse our donors seem to be on the rise. Thanks for your support and insight.

Liked by jodeej

@mickj

The best information I know of related to transplants and wait times is UNOS. I'd include a link, but I'm a new member, and the powers that be won't allow it. Regardless, it's UNOS.org.

They are the folks who allocate organs in the US. You can drill down by region, state and transplant center. What becomes apparent is that wait times are not consistent region to region.

Jump to this post

Thanks for the information

Please login or register to post a reply.