Liver transplant - Let's support each other

@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.

Page 2 of my story...
I typeset the piece, titled it “A Creed To Life A Transplant Patients Promise” and made 5 copies. I took them with me to the clinic (back then the liver transplant clinic was at Eisenberg 3G). I gave one copy to my nurse coordinator, and one to the person at the front desk. The other 3 I gave to some folks I thought it would help. I signed it “authors name withheld by request” because as I told my wife, if it fails miserably, I don’t want others to know it was me… and if it becomes popular, I didn’t want people to know it was me! I felt that way because I can remember parts of Robert Frosts poem about organ donation, but mostly I remember his name.
To date I have handed out over 10 thousand physical copies of this one piece.
Now back to the rest of my journey….
I carried a pager during my wait, and it had no display, it just beeped. The entire town where I was staying knew I was the stranger waiting for an organ transplant. My pager went off 6 times during that wait. Each time I had to call in to Mayo, and tell them my name, clinic number, and what organ I was awaiting. All 6 times I was told that no one had called… The 7th and final page came at approximately 5 pm on October 31, aka Halloween…. As a teen, my friends and I made prank phone calls to random numbers on Halloween, so I didn’t get up to call in… My sister insisted I call in so begrudgingly I got up and dialed the memorized number… This time was different. Before I could get out my whole name, clinic number, shoe size, and what I think of the Vikings, the operator stopped me short. I figured she got tired of my bashing the Vikings… she came back on the line and said “Joe, a doctor would like to speak with you”….
Dr Nikius, originally from New York, got on the line and said the words I’ve been waiting all these days to hear: “Joe.. we believe we have a liver for you”…
I just stared at the phone for a few seconds…. Uttered “a no shit”, and screamed right in his ear!! Asked how fast I could get there, I said 3 hours. I had to pack… I swear I packed the same pair of underwear a dozen times…
Hopped into my car with my sister, and here husband, and drove to Mayo. I paid for a hotel room for them to stay in overnight, and they brought my car back to their home the next day.
Surgery was scheduled for 5 am the next morning. I never feared any of this. A clergy came into my room and asked if there was any particular prayers or Bible verse I would like him to read, and it dawned on me…. All my life I had been fascinated with Psalm 23…. Yea though I travel through the valley of death I shall fear no evil for Thou art with me”…. THIS is what I’ve been preparing for all my life!! I was ready for this… I had been for many years.
I was taken to the OR and requested that I be sat up on the gurney. If this was to be my last memory, I didn’t want it to be of ceiling lights…
Onto the operating table, a mask placed over my mouth and nose and told to count backward from 100…. I swear it was one hun…….zzzzzzzzz
I awoke in ICU with more tubes than I’d ever seen in any horror movie, a trachea tube breathing for me, and my hands restrained. My wife was there, as I had paged her after getting the call, and I actually made it out of surgery before she arrived…
She was talking to me, and I tried to gesture with my hands, but she reminded me that they were restrained so I couldn’t pull out the tubes etc… They gave her a dry erase board so I could write notes back to her… I wrote three letters… I…N…O….. I KNOW!! 
I was in ICU for about 24 hours, and at one point was brought back to surgery because I was bleeding out. I was given 28 total pints of blood during the entire procedure. After, and I don’t remember the number of hours, they had drawn about 8 ounces of blood, and separated the white blood cells, placed a radioactive markers on them, and rushed me to xray to inject the white cells back so they could see where they went 24 hours post transplant. I had agreed to this, and with literally no immune system, it was the most dangerous test I agreed to. While going through my evaluation, I met a man who was also a liver transplant patient, and he was adamant about signing up for Mayo’s many studies… he boldly told me DON’T do it!!! It was at that moment that I decided to sign up for EVERY STUDY Mayo presented to me. I didn’t go through this just to save my own life… others had done studies that benefited me before my transplant, I was going to give back… and I did.