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peakbagger
@peakbagger

Posts: 7
Joined: May 05, 2016

Liver Transplant

Posted by @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!

REPLY

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:

1. Go to your Account Settings (You can find the Account Settings in the dropdown menu beside your picture in the upper right corner or click this link https://connect.mayoclinic.org/account)
2. Scroll to the bottom of this page.
3. Check the box that says “ONLY INCLUDE THE SPECIFIC THREADS AND GROUPS I AM FOLLOWING IN MY DIGEST.”
4. Click Save Profile.

Now you will only receive messages from the group(s) that you follow. You can find more helpful tips on How to Get Started on Connect. https://connect.mayoclinic.org/get-started-on-connect/

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.

@colleenyoung

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:

1. Go to your Account Settings (You can find the Account Settings in the dropdown menu beside your picture in the upper right corner or click this link https://connect.mayoclinic.org/account)
2. Scroll to the bottom of this page.
3. Check the box that says “ONLY INCLUDE THE SPECIFIC THREADS AND GROUPS I AM FOLLOWING IN MY DIGEST.”
4. Click Save Profile.

Now you will only receive messages from the group(s) that you follow. You can find more helpful tips on How to Get Started on Connect. https://connect.mayoclinic.org/get-started-on-connect/

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.

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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!

@colleenyoung

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?

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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/.

@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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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!

@colleenyoung

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:

1. Go to your Account Settings (You can find the Account Settings in the dropdown menu beside your picture in the upper right corner or click this link https://connect.mayoclinic.org/account)
2. Scroll to the bottom of this page.
3. Check the box that says “ONLY INCLUDE THE SPECIFIC THREADS AND GROUPS I AM FOLLOWING IN MY DIGEST.”
4. Click Save Profile.

Now you will only receive messages from the group(s) that you follow. You can find more helpful tips on How to Get Started on Connect. https://connect.mayoclinic.org/get-started-on-connect/

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.

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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.

Liked by Ali Skahan

@peakbagger

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!

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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!

@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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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.

Liked by Ali Skahan

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!

Liked by Ali Skahan

@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?

@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!

@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!

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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