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Replies to "Thanks for the good questions @peakbagger! And thanks for tagging me in, Colleen. In the coming..."
I don't want to come off as negative, but keep in mind that you might get sicker as you wait for transplant. I only say this so that you plan for a caregiver to be available to you when needed. However, anything is possible.
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?
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!
@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!
The "Transplant Page" sounds awesome and I look forward to it's grand opening.
Thank you also for your suggestion on spending time on the SRTR site? This was one of the first places I went to back in October 2015 as I was evaluating Regions/Hospitals for subsequent transplant and listing. I actually pulled down the full PDF report from each of the Hospitals I was interested in and did a spreadsheet that gives me a summary view of all the statistics. In addition, I added Hospital infection rates from common infections to the spreadsheet as this was important to me as well.
It is a great resource and allows me to check outside of my region and transplant timing. I particularly researched Oschners in New Orleans as they have one of the highest ratings and are also recommended by UCLA and other hospitals in my region. The challenge is getting there within 8 hour time frame upon notification. Others have suggested going down there to live when you are close to the top of the list and then just have your support team from home fly in once you head to the hospital. That may eventually be the direction I go, but for now client commitments, grand kids, et all force me to stay pretty close to home most of the time.
Lastly, when talking to UCLA about finding a treatment for Hep C prior to the actual transplant, they indicated that it would be better for me if I was not cured prior to the transplant as it would open more options and allow me to take a HEP C infected liver as well as one that was not. They indicated with new treatments, curing the new liver would not be an issue.
Thanks again partner for your feedback!