Just listed and learning to understand UNOS numbers

@gigi32, Hi and Welcome to Mayo Clinic Connect. I am happy to hear that you have reached this exciting event after undergoing your evaluation for your organ transplant! I remember receiving that special phone call from my transplant coordinator that was followed by the official letter from UNOS - The Organ Procurement and Transplantation Network! I bet you are excited and nervous at the same time.

The UNOS transplant list, is not actually a list of names, like a grocery list or attendees for an event. The UNOS Transplant waiting list is actually a data base of information about the candidates who are eligible to receive an organ for transplant. Each organ must be matched to an individual and this data base is activated when an organ becomes available. A patient might be on the list for a longer time or a shorter time depending on the availability of a matching organ and the need of a patient.
You will hear patients telling that I am #?? on the list, and what I think they are saying is that -at their transplant center they are the most in need (top of list) for that location.
You can read more about this a the UNOS site. https://unos.org/transplant/

Gigi, Where are you for your transplant care? What organ are you waiting for?

Friend, also consider living donation. Many people think that there is no way they could find a living donor. But there are many, many hopeful stories of unexpected living donations. Good luck.

@rosemarya thank you so much any info at this point is helpful. It is actually my husband he does not like computer technology so I’m his ears and computer tech. We are at Mayo Clinic in Rochester and are waiting for a liver. It is a new avenue for us like for so many before us. So questions pop into our heads constantly. This connect helps.

@benedict66066 thank you actually both of our sons will be going through the evaluation in March so we will know if they are candidates. We are a little apprehensive in having them do it for a variety of reasons they both own their own businesses, time away and if its considered a previous health concern if they need to switch insurances in the future. But we are looking at everything right now.

My numbers were in the mid 30s over 40 you’re not going to make it and I had stage 4 kidney failure plus 9 liters of fluid from acites every 2 days , I recommend being in your best shape ever before the transplant including your diet

@gigi32
Mayo in Rochester is where I recieved my transplant in 2009! I am doing great and am blessed with a wonderful healthy life.
Has your your husband already gone thru the evaluation process?

@gigi32
For your husband!
Mayo Clinic has a newly Released book: "Mayo Clinic Guide to Organ Transplant".

I purchased one online and it contains excellent information. I highly reccomend it!
I would expect it to be in the Mayo Gift Store on Campus.

@rosemarya yes and he was just listed last week. He had to have sine more tests for his heart and they blocked the blood vessel leading to his tumor in the liver last week also. Glad to hear you had a great experience at Mayo !

@gigi32, I add my welcome. Here are a few links that you might appreciate as you, your husband and family begin the transplant journey.

Here's a link to the book @rosemarya referred to
- Mayo Clinic Guide to Organ Transplant https://mcpress.mayoclinic.org/product/mayo-clinic-guide-to-organ-transplant/

Caregiver discussions
- Transplant Caregiver Advice: Got Tips to Share?https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
- What to watch for as a caregiver after liver transplant?https://connect.mayoclinic.org/discussion/what-i-should-stay-watchful-as-a-caregiver-after-liver-transplant/

Liver donor
- Process of being a live liver donor https://connect.mayoclinic.org/discussion/process-of-being-a-live-liver-donor/

Keep asking questions. You've got many people ready to journey along side you and your family. 🙂