Connect
Comment receiving replies
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.
Replies to "Welcome @peakbagger. I'm pleased that you've been watching the discussions on Connect and chose to post..."
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.
Connect
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.