Liver Transplant

Welcome @peakbagger. I'm pleased that you've been watching the discussions on Connect and chose to post a message. I hear you about having to weed through the messages in the daily digest to find those that are relevant to you. Making the daily digests more user friendly and relevant is part of a future round of improvements on Connect. In the meantime to make the daily digest more relevant now, you can change your settings to tailor the information you get. Here's how:

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You mention that you're interested in talking with others about liver transplant process, procedures and specific feedback. We've got some exciting things coming about that too. I'm tagging @kequick on this discussion to tell you more.

I'd also like to bring @rosemarya @wmoser2613 @user_chcbc919c @magrand48 into this discussion as they or a family member has had a liver transplant. I think they'll be excited about these new developments, as well as want to connect with you.

Awesome Colleen! I was counting on your reply and you did not disappoint.

I initially went through the process of isolating the information and threads I was interested in. Mainly, I chose the "Transplant" thread. As you know, this includes all types of transplants to include hand, kidney, etc.

I am excited to hear that you have some new things coming in regards to the liver transplant process, procedures and specific feedback. I also appreciate you bringing others into the conversation especially since they have been either personally or indirectly involved in the liver transplant process.

To help everyone understand where my current focus is, I am providing a brief background:

I am a 63 year old male. I was diagnosed with Hep C in January 2000. I was on a clinical trial 6 years ago but to no avail. Two years ago I went on a 6 month Harvoni regimen which did not work as by body built up a resistance to the drug combination (RAV).
I am very active in pursuing all information regarding current and future drugs for the cure of Hep C.

My Gastro currently states that there are no drugs currently on the market that will cure my Hep C though everyone feels that in 2017 there should be much better options. I have compensated cirrhosis, RAVS and prior treatment and am Genotype 1b.

In March of 2014 they found 2 cancerous tumors in my liver. Radio Frequency ablation was performed in July 2014 for the big one and September 2014 for the other. In September 2015 they found another 2 tumors which were ablated in October 2015. In May of 2016 they found 2 more tumors and suggested I get on a Liver Transplant list. I live in San Diego and have begun the process with UCLA to get on the list. My first series of testing for list placement will be on July 11, 2016. Though this is my primary focus at this point, my next step is to go back to City of Hope for another ablation to kill the 2 new tumors.

I have researched the liver transplant process since last October and feel confident about the process, the procedure, and the recovery and feel I have chosen one of the best Hospitals. The challenge for me and others who live in the West coast region is the shortage of donors and the length of time expected to be on the list (1.5 to 2 year). I am seriously considering getting double listed once I am initially put on the list. That is where Mayo Phoenix comes into play and why I have been active on your site for some time. Though you are in the same region, personal feedback from friends of friends have indicated that they were able to get to the top of your list with a MELD score significantly lower that that required at UCLA. These are my areas of interest in addition prior experience as it relates to recovery, immunosuppressant drug advances, etc.

Thank you for your support and feedback.

I'm glad I didn't disappoint and that I'm so predictable 🙂 Good to learn a bit more about you @peakbagger. This helps me connect you with discussions and members. You will definitely be interested in the developments that Kristin will tell you more about, and she'll be interested in getting your feedback.

I think you might be interested in connecting with @afterthetreatment @airtruck54 and @rkz06 on this thread "After Hep C treatment" https://connect.mayoclinic.org/discussion/people-cured-from-hep-c-harvoni/

Also did you see the information that my colleague gave to @bobbutler when he asked "How do I get on multiple transplant lists for a liver?" https://connect.mayoclinic.org/discussion/i-have-been-added-to-the-transplant-list-for-a-liver-at/

Again, I'm going to pull @kequick into this conversation to see if she and her team can provide more info regarding the MELD score at Mayo, etc.
Colleen

PS: I like your username choice and your photo. Looks like you're a mountain climber. Are you still reaching for the clouds from mountain tops?

You are awesome Colleen! I appreciate all of the information and contact you provided.

Yes, I have been a volunteer U.S. Forest Ranger for 25 years and focus on Wilderness Patrols. Once a month I climb up to 9,500 feet and base camp there for 3 nights and 4 days. During that time, I hike up to the tallest peak in Southern California at 11,500 feet. I must admit that it kick my behind more these days, but it doesn't stop me from the passion I have for being in the wilderness. I also run a Senior Service business in North Coutny San Diego. I am always confronted with people who have physical and cognitive impairment in addition to dealing with at least 3 clients a year that I take through the final process of life. I truly enjoy being the person comforting them in the final moments while holding their hands and ensuring that they are completely comfortable. Therefore, these outings help to rejuvenate me and my soul for the next round of clients.

Here in also lays the challenge of having to go through the process ahead of me. Taking 3 months off for a liver transplant when I have so many seniors relying on my care is a big challenge. I do realize that I am no good to them if I am no longer a part of this world, so I will do what I have to do. Being so active, I am not the typical "lay in the hospital" type of person. So the recovery process concerns me more than the actual surgery and it's implications.

Thanks again for your support!

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!

That’s great you’ve done so much research and talked to others about your options, @peakbagger. Have you spent time on the SRTR site? (Stands for Scientific Registry of Transplant Recipients.) It contains a wealth of data on transplant rates and wait times by center. Here’s the website: http://www.srtr.org/.

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!

I want to wish you the very best possible pre-transplant evaluation and prompt transplant listing. I am a 67 y old female. I have just celebrated my 7th anniversary of simultaneous liver/kidney transplant. And these have been wonderful years.
I do not know anything about HepC, because I transplanted due to Primary Sclerosing Cholangitis.

WOW you are doing some exciting hiking! My husband and I enjoy hiking. But not quite to your level of skill. 5 months after my liver/kidney transplant, I was back on the trail; but took it easy.
You say you are not a 'lay in the hospital' type of person. Most of the recovery after the initial surgery recovery, is 'out patient'. After being sick for months, I felt better immediately after my surgery. Pain was manageable. Mostly got tired easily, so daily naps were vital for a while. I would say that by 9 months things were pretty routine for me.
Take care, listen to your body and to your medical team. Hope you enjoy many more years doing all those things that you love!

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.