Liver transplant - Let's support each other

Thank you for your response. I have been enjoying connect. I've learned so many things and it has definitely opened up options to me for meds and treatments doctors don't always talk about. Give me something to have in my bag, do yo speak when I talk w doctors. Sometimes frustration is doctors don't seem to bring up all options and nice for me to have questions I can bring yo them. Especially since you sometimes onlysee them once yearly. I am doing good. I have some portal hypertension even with new liver but it's controlled. Feel good every day and active and traveling lots. I have much to br grateful for

@mkhogan - Greetings today from a rainy central Kentucky! I want to say that I totally agree with your assessment that it would be awesome if more became aware of the benefits connecting with others.
I received my transplant in 2009, before Mayo Connect existed, and like you, I discovered it during one of my own on-line searches since there were no support groups in my area. I have enjoyed being a part of the conversations on Connect for over 10 years, and have proudly watched it grow as technology has become more available to the world. When in Rochester during my annual appointment, I have seen Mayo Connect Brochures at information desks and in the waiting areas, including some in transplant areas. Due to space availability and multitude of topic specific brochures, these are not placed everywhere. Have you seen the kiosks in the main lobby area? Mayo Connect is on it! And more recently is on the Mayo Clinic Patient portal. I think a brochure might be included in the take-home information, too.

During my time on Connect, I have been blessed to meet and interact with organ transplant patients from all over the world. I like to think of all us sitting around a kitchen table with cup of coffee or tea and chatting while getting and receiving support from each other. So, @mkhogan, I am inviting you to pour a cup of coffee or tea and join us. What is going on with you and your precious liver? What is something that you learned on Connect that is most helpful for you? Any updates you would like to share since your most recent comments?

I am 5 years post transplant. Stumbled on this several years later. I think it would be helpful if mayo social workers or nurse coordinators gave people this specific information. I was not given it. I remember one doctor mentioned striking up conversations with other people in the waiting rooms to help people connect. It's hard to do. If there is this around, it would be awesome for more to know. I still learn so much here and get ideas of what to bring up to my care team

Hi, and Welcome to Connect. I am happy that you have joined this transplant discussion group after stumbling upon it! Congratulations on your upcoming liver transplant 1st anniversary! Do you have any plans to celebrate, or honor the special day?
I am a liver/kidney recipient. I found Mayo Connect when I was looking for other people who had either transplanted, or who had my disease (PSC). Like, you, there was no one in my vicinity.
I commend you and your wife for your joint plan to share with others in your area who are affected by liver disease. I don't have any 1st hand support group experience to share. When do you plan to get it activated?

I invite you and also any members of your group, to come visit Mayo Clinic Connect. I welcome you to join in and to share your experience with others from nearby and distant places. As you have already indicated - It can be lonely out there. The purpose of Connect is to share our experiences with others, and to support and encourage others along the way.

This and That and Talk - My Transplant
https://connect.mayoclinic.org/discussion/this-and-that-and-talk-my-transpant/
Living Life after your Transplant
https://connect.mayoclinic.org/group/transplants/tab/discussions/?pg=6#group-92-activitystream
I recommend that you browse the Newsfeed posts in the Transplant Pages.
https://connect.mayoclinic.org/page/transplant/
@parmcat, Do you intend this support group to be at the hospital where you transplanted?

Perfect. This link works fine, I just clicked its . Nice song. Thank you for sharing.

I tried to include one of my songs on SoundCloud, but it was declined, I think because I hadn't been here long enough. I'll try again with this reply! Thank you!
Also thank you for your perspective on my path! It has been a long interesting one to say the least!
Here (hopefully) is the link!!
soundcloud.com/joe-kralicek/hero-revisited (you will have to copy this and add the HTTPS before the link and it should work)

You could include a SoundCloud link to your songs.
Wow! You have certainly traveled a path not often taken. It sounds like you have made a trail in your woods and breathed in the challenges. Thank you for sharing. Wishing you much success and lots of music to share and keep you going.

I was hoping to slip in a song or two that I wrote about organ donation, but.... files are just a bit too big....I tried!!

I was in station 53 after my transplant, having received the 397th liver transplant Mayo had performed, Soon I was given a roommate…. My dear friend Dean! He and I had gone to breakfast the Friday before my call… and we both resigned ourselves to just be patient and leave it to God to decide. The day I was released from the hospital, I was feeling rather full of myself, and headed down to the subway… I walked a mile that day. Of course I had to take a long long nap when I got back to the GOL Transplant house!
I was told when I went through my evaluation, I would be in the hospital for 21-26 days, and needed to stay in the Rochester area for 2 months. I broke a record, and was released 10 days after surgery, and was released to go home as long as I broke up the 6 hour drive into 2 days. I went back to my sisters, and celebrated with them, and the next morning I was on my way HOME! A month and 4 days after surgery, I was home! 
I had to return to Mayo for a possible rejection episode, when they discovered I had strictures. They placed a T-tube in my left lobe from both the chest, and rib cage, and I had those for many months. After they were removed, I never had issues again.
When I would go back for my check ups, I would stay at the Clinic View Inn, which is no longer called that…I would bring my wife and kids and we would make a family mini vacation out if it so I could spend time with my family rather than going through it alone again. We cherished these trips, even though I spent a lot of time in exam rooms.
Little by little the tests became less and less. I finally started going on my own and was able to visit a dear friend I had made, who was the housekeeper at the Clinic View Inn. She and I became friends after as I returned from a day of testing, she said “Hi” and I asked how she was doing… she replied “do you really want to know?” And at that moment I had to decide if I really meant it, or was it just something to say in passing… I sat down, and said “as a matter of fact I do”… we’ve been friends ever since!
Many things have changed since I was transplanted. When I was evaluated, the criteria for transplant in livers was A) blood type B) body size, and C) time on the waiting list. The MELD score had not yet been discovered/invented. I was put at the top of the list for blood type A+ and much to my dismay at the time, got bumped 3 times… twice by the same person. That person was a man named Fred, whom I had made good friends with because it was as if God had said “he needs someone to understand and talk with” and we were both blood type A!
We called ourselves the A team… He had a rough time of it. He was still hospitalized when I got my transplant. I would go to his room, dragging my IV pole and read to him, rub out his leg cramps, and just carry on conversation so he wouldn’t feel so alone. He ended up needing a second transplant because he developed a clot in the portal vein. That was why I was bumped twice by the same person….
On the Tuesday that followed my transplant, a mere 2 days post transplant, I attended the support group that Mayo held for the patients at Station 53. Jaws dropped, eyes opened wide…I had just received my gift of life!
I had signed up for every study they put in front of me. One of them was for a dosage study for a new drug then known as FK506, now known as Prograf, or tacrolimus. In the blind study I evidently drew the high dose, starting out at 30mg a day. I now take 1mg a day for reference.
I am proud to say that I did what I did for those who followed the path I chose, not for myself. Anyone who is now on that drug has many people to thank for agreeing to partake in that study, and I am proud to one of them.
Life since transplant hasn’t always been easy, but never tough enough to make me regret my decision. I’ve had my fair share of infections, a few near deaths, a stroke, and 11 major surgeries since transplant, but none of them related to the transplant itself.
I have experience near death several times due to sepsis infections from recurring cellulitis, but again that’s not transplant related.
Since transplant I went back to driving a truck for a living, loading and unloading my own truck with materials that were often double my own weight, and having to get them on the truck under my own power. I spent 10 years as a Scoutmaster for 2 different Boy Scout Troops, served on the district level, and got to see both my older sons become Eagle Scouts. 
In 2009 my wife and I traveled to Russia to adopt a sibling group of 2 girls and a boy, and in the blink of an eye, I had 5 children! 
Now I have a daughter in law, a son in law, and 4 grandchildren.