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davidgenebarnes
@davidgenebarnes

Posts: 44
Joined: Dec 13, 2016

How do I get listed for a transplant

Posted by @davidgenebarnes, Dec 13, 2016

Everyone in Phoenix has told me that Mayo is the place to go. Was diagnosed at Honor health three months ago and taking classes at Banner.

REPLY

@davidgenebarnes Welcome to Connect. I am happy that you have come here for answers to your question. I believe that we can help you in answering this question. Have you been diagnosed with a condition that might progress to need for transplant? Or have your doctors begun talking about the need for a transplant? For me, it was my doctor that referred me to the transplant department for the process.
Rosemary

I was diagnosed with liver failure about 3 months ago. Doctors recommend a transplant. I am following their dietary guidelines, taking my prescribed medication and going to the suggested classes

@davidgenebarnes

I was diagnosed with liver failure about 3 months ago. Doctors recommend a transplant. I am following their dietary guidelines, taking my prescribed medication and going to the suggested classes

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What do you mean when you say they suggested it? Are you under care of a primary care physician, or a gastroenterologist?
It sounds like you are being proactive by keeping prescribed medications and following dietary guidelines. That is important to do; keep it up! I was diagnosed with primary sclerosing cholangitis and it took 8+ years to develop to cirrhosis/liver failure. That is when I was referred to transplant evaluation.
Some liver conditions are reversible; the liver is a fantastic organ. What do you have? And have they discussed any of this with you?
Rosemary

I have cirrhosis and they have recommended a transplant. I have both a primary and a gastroenoligist Have had many discussions with them regarding a transply

Transplant. Oops

@davidgenebarnes

I have cirrhosis and they have recommended a transplant. I have both a primary and a gastroenoligist Have had many discussions with them regarding a transply

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Hi David, So glad you’ve found our group, welcome! I can share a little bit of information about getting listed for transplant, though the process varies a bit based on what organ you need and the transplant center you choose. Typically the first step is a transplant evaluation, which includes blood work, radiology testing, a bone density test, and testing specific to your organ (urology for kidneys transplant, cardiac testing for heart transplant, etc.). At Mayo Clinic, patients also meet with each member of the transplant team during their evaluation. Here’s an overview of Mayo’s transplant care team and the role each member plays: https://connect.mayoclinic.org/page/transplant/#/!tab=resources-38. If you are overdue for any preventive care during your evaluation, you will be asked to complete that as well.

Once the testing is complete, the team will meet to discuss your case and results. As long as your test results show you are healthy/stable enough to receive a transplant, and you meet other criteria such as having a dedicated caregiver, you would be placed on the waiting list. While this process sounds long and difficult, depending on the organ, the process can typically be completed within a couple of weeks. You mentioned you are in need of a liver transplant, have you considered living donation?

Finally, if it’s useful, here is a link to request an appointment at one of our campuses:
http://mayocl.in/1mtmR63

@davidgenebarnes

I have cirrhosis and they have recommended a transplant. I have both a primary and a gastroenoligist Have had many discussions with them regarding a transply

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I fit all requirements less one, I work in Phoenix yet my Wife and I live in NorCal so I wouldn’t have a caregiver

@davidgenebarnes, I would like to encourage you to contact Mayo in your area, and see what they have to say. I hope for the best possible outcome for you. Rosemary

@davidgenebarnes

I have cirrhosis and they have recommended a transplant. I have both a primary and a gastroenoligist Have had many discussions with them regarding a transply

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I’m sorry you are in a situation where you will need to be far from home. A caregiver is a critical part of the success for transplant patients, and is necessary to be placed on the transplant list. The good news is, caregivers can come in many forms. You don’t necessarily need to have a spouse as your caregiver. A caregiver can be anyone willing to stand by you and help you with your needs. Some patients can have multiple caregivers so one person doesn’t have to spend several weeks away from their jobs and families. Our social work team would talk with you about caregiver needs and possible options during your evaluation.

Also, for patients like you who do not live in the area, there are short- and long-term housing accommodations available near Mayo Clinic’s Phoenix campus. The Help in Healing Home is a small village with a community house surrounded by casitas that offers low-cost housing for patients and caregivers. It’s designed for individuals requiring a prolonged recovery, where the risk of infection is minimized, in a supportive environment that is close to medical professionals. Here is a link if you’re interested: http://www.helpinhealinghome.org/.

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