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Liver Transplant

Posted by peakbagger @peakbagger, Jun 15, 2016

Would love to join a focus group primarily for Liver Transplant process, procedures and specific feedback. I am on Mayo Connect and get daily updates but find myself having to week through so much conversation only to find limited information on people who are trying to get on the UNOS transplant directory and the process they have to go through. I have information from several outside sources, but would like to get specific information from Mayo as I hold them in very high regards based on their expertise in this area. Please advise!

Interested in more discussions like this? Go to the Transplants Support Group.

peakbagger | @peakbagger | Jun 17, 2016

Trust me, I would never take input from anyone as negative, especially you. Having gone through a double transplant, you know what lies ahead for my next chapter. I run a Senior Service Business here in San Diego and have plenty of caregivers that I use, so that should be covered when needed. I also have so many offers to help with driving, shopping, etc. The bottom line is that I am the type of person who wants to do as much as I can myself as long as it is safe. I heal better and quicker that way. In addition, I have my wife and daughter to help as needed.

Interesting that you indicated that you were back on the trail after 5 months. That too is my goal and to take it easy. I am usually carrying around 55lbs on my back as I am in the back country for 4 days and carry extra gear for rescue situations that I may have to be involved in. Just as with the 3 prior (and one coming up) surgeries to remove HCC (liver cancer) tumors from my liver, I totally listen to my body. It is so amazing when one is in tune with their body as it communicates everything if you are adept as listening.

Hep C has many of it's own side affects to include fatigue, insomnia, brain fade, muscle pain, rashes, etc. Since going on drugs back in 2011, I have never felt 100% back to normal. Each day has it's own challenges that a positive mind and willing soul can overcome. Easy for me as I see so much physical, cognitive and emotional issues with my client and all my issues pale in comparison.

It's good to her that post surgery recovery is focus on out patient as that would totally be me. I want to walk to halls and see if there is someone I can help as it will take my mind off my specific discomfort. We will see how it goes. My wife said she is going to warn the doctor to keep me sedated as she knows I will be up and about!!

Congratulations on your 7 year post-transplant anniversary. I look forward to sharing my experience with such a positive attitude and outlook as you have. I do appreciate every bit of your feedback and will keep ya posted.

I took all 3 of your replies and tried to answer them all in this one email to save both of us time and energy. If I missed anything, feel free to let me know!

REPLY
Kristen Quick, Marketing Specialist | @kequick | Jun 20, 2016
In reply to @kequick "Thanks for the good questions @peakbagger! And thanks for tagging me in, Colleen. In the coming..." + (show)
@kequick

Thanks for the good questions @peakbagger! And thanks for tagging me in, Colleen. In the coming months, we're going to be adding something new to Mayo Clinic Connect called a Transplant Page. It will include include a liver blog written by our physicians and care teams, and a toolkit to help kidney and liver transplant patients find living donors. Besides providing information about the topics the community wants to hear about, the blog will also be a way for Connect members to share and offer feedback. We’ll keep you posted on our progress!

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Wow, your use of SRTR is impressive!

Yes, we’re excited for the “grand opening” of our new transplant page, too! As mentioned, it will include a toolkit to help patients navigate the process of finding a living kidney or liver donor. Until our toolkit publishes, check out this Mayo Clinic webpage http://mayocl.in/1RH6VbD It provides a pretty good overview of living-donor transplantation.

@peakbagger, You mention the challenge in choosing a transplant center that is close enough to travel to when a liver becomes available. Have you thought about living donation?

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peakbagger | @peakbagger | Jun 21, 2016
In reply to @kequick "Thanks for the good questions @peakbagger! And thanks for tagging me in, Colleen. In the coming..." + (show)
@kequick

Thanks for the good questions @peakbagger! And thanks for tagging me in, Colleen. In the coming months, we're going to be adding something new to Mayo Clinic Connect called a Transplant Page. It will include include a liver blog written by our physicians and care teams, and a toolkit to help kidney and liver transplant patients find living donors. Besides providing information about the topics the community wants to hear about, the blog will also be a way for Connect members to share and offer feedback. We’ll keep you posted on our progress!

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Interesting that you brought up the Living Donor aspect. Since I have Compensated Cirrhosis, on my 4th Liver cancer surgery and have Hep C type 1b, I am not aware that this is even an option. A Living Donor would provide only a partial liver. Knowing that it does regenerate itself over time and can eventually grow to a full size live, it makes sense. Given the info I mentioned, is this even a possibility???? No info I have gathered or Gastro's I have talked to indicated that this was a possibility>

Let me know your thoughts!

REPLY
Kristin Eggebraaten | @keggebraaten | Jun 21, 2016
In reply to @kequick "Thanks for the good questions @peakbagger! And thanks for tagging me in, Colleen. In the coming..." + (show)
@kequick

Thanks for the good questions @peakbagger! And thanks for tagging me in, Colleen. In the coming months, we're going to be adding something new to Mayo Clinic Connect called a Transplant Page. It will include include a liver blog written by our physicians and care teams, and a toolkit to help kidney and liver transplant patients find living donors. Besides providing information about the topics the community wants to hear about, the blog will also be a way for Connect members to share and offer feedback. We’ll keep you posted on our progress!

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@peakbagger, Good morning! I think I can provide help with your question. In order to know if living donor transplant is a possibility in your case, we would need more information about your liver cancer and your surgical history. Our surgeons at Mayo Clinic would be happy to speak with you to determine if they think that living donor transplant would be a good choice for you. If you would like more information about this option, you can email me directly at transplant-rst@mayo.edu. I would be happy to connect you with our team!

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jun 28, 2016

After transplant, the doctors want you up and walking. And tell your wife that they will keep you so busy with all kind of transplant education and monitoring, that you won't have time to get into any trouble!! Keep positive and take care of yourself so you will have the best possible outcome. Rosemary

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1 reply
peakbagger | @peakbagger | Jun 29, 2016
In reply to @rosemarya "After transplant, the doctors want you up and walking. And tell your wife that they will..." + (show)
@rosemarya

After transplant, the doctors want you up and walking. And tell your wife that they will keep you so busy with all kind of transplant education and monitoring, that you won't have time to get into any trouble!! Keep positive and take care of yourself so you will have the best possible outcome. Rosemary

Jump to this post

Sounds like a plan that will suite me well! I know they want me up and out as soon as possible given there are not complications. That is why Mayo is known as the BEST!

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