Liver transplant - Let's support each other

Wow! Thank you big Joe for your inspiration. Your poem perfectly captures what we all feel - but you have expressed it so eloquently. I am just a little over 2 years post liver transplant - and have regained my good health. A true gift that I never really believed I would ever experience. I think about my donor and his or her family from time to time, and the anguish they must have gone through. But their final act of love - has provided me - and so many others with our second chance at life. Wishing you continued good health. You have found your purpose in life - inspiring others and providing the comfort to donor families - that their loved ones final gift was not in vain. Bravo!

thank you for the kind words! I hope that you have written to your donor family! I wrote my donor family every year for nearly 8 years. Before my 8th anniversary, I received a letter from the family of my donor! I can't divulge how I got it because at the time Mayo, and Lifesource did not allow recipients and donor families to correspond. That all has changed though, and the chance of getting a letter back is far greater than it was in 1992!!
In 2000 I received a letter from Mayo/Lifesource stating my donor's family had requested to exchange contact information! It took close to a year for me to receive the letter because it was sent to me c/o Mayo Clinic. That's the equivalent of sending it to me care of Delaware....
When I got the letter, I let it all sink in, and finally called the number provided. I immediately hung up lol. I called probably 6 times before I finally let it go to voicemail, and left a message.
Fast forward to Labor Day weekend in 2000. My wife, and then 2 sons (my wife and I adopted 3 siblings from Russia in 2009) drove from our home in Illinois, to Waterloo Iowa to meet the two surviving family members of my donor Carolyn. She had been a physical therapist for brain injury patients, and ironically enough, died from an aneurysm that burst in her brain.
My family and I spent the weekend with them sharing stories, and the "few" poems I had written to date. We visited their parents graves, broke bread together at their mom's favorite restaurant, and enjoyed each others company. Sadly one of the daughters has passed, but I am still in contact with the remaining daughter. Carolyn's husband passed away about a year after her, from heart complications.
This past November, my wife and I went back to Iowa to spend a weekend with Carolyn's daughter. I cannot tell you how happy we were all to see each other again! The daughter and I have been in contact over the last 23 years, and consider each other family. We have built a strong bond and friendship that would not have happened if not for the selfless gift of life given. Sadly however, none of the other recipients ever wrote to the family. Their loss...
I was the only one to write, and thus the only one to get to meet the daughters!
I hope that if you haven't written, or have written, that this encourages you, and all others to write either for the first time, or for the second, third, fifth... One never knows what will happen.
Nothing will happen if you don't write...
In closing I am going to include a poem I wrote. My writing is instantaneous...I don't plan to write, I don't sit down and say "I'm going to write a poem today"... my writing is a gift I've been given. The poems choose me, and when they're written. If you wish to see more of my work, look up Inspirational Poetry by Joseph E. Kralicek on Facebook, and leave me a message that you were there!
Sorry for the diatribe, I'm a writer! lol

Yes Joe, I have written to my donor family, but have not heard back. I will continue to write each year and fully understand that I may never hear back. How wonderful that you have maintained a relationship with your donor’s family. This second poem is even more beautiful than the first. You truly have a gift. I’m not on FB much, but will definitely make a point of visiting your site.

Soooo glad you've written them! I am also part of a three time donor family... all three were tissue, bone, and cornea donors. Since it wasn't my immediate family (in-laws) I didn't expect any correspondence. Knowing that they helped others through their donations was enough of a gift for me. I would love to think that they became donors because of my experience, but that doesn't really matter. They did it!
Some families never write back because the death may have been tragic. Deaths by suicide, gunshot, or car accident are often the reason families don't write back. Their trauma is just too raw, and reliving it too painful to write back. I was blessed to meet my donors daughters. Something I will always be grateful for!
Have a blessed day!
Joe

In a joyous state of mind, and soon to be off to church. It suddenly struck me, how many liver transplant patients have reached that 1 year goal recently? I have something especially for those who have celebrated that milestone!
I remember being told that the first year was the toughest, but now 31+ years later, it's a blurry memory.
So.... for those of you who are about to, or have recently celebrated your first transplant anniversary, this is for you!

Joe K.

My story, hopefully in full by method of several parts... lol
My name is Joe, and this is my transplant story:
I was diagnosed at the age of 32 with what was thought to be chronic active hepatitis, but after a few wrong diagnosis's and a once botched biopsy the successful biopsy showed advanced cirrhosis. The diagnosis was finally pinned down to auto immune hepatitis, and treatment began. My primary physician had studied at Mayo in Rochester MN, and felt he could treat me, but that I would be better suited to go where the experts are. was on a program of prednisone and imuran with the hopes that that would put the hepatitis in remission. This was all started when I had my first appointment at Mayo Clinic, with Dr William Tremain. For those of you who are familiar with the story Johnny Appleseed, that true life character was Johnny Tremain, and yes I asked, and yes he is a distant relative... All was going well, my number, were going down, my weight was going up thanks to high doses of prednisone, until one day in August of 1992. My doctor had referred me to an gastroenterologist at Mayo a Dr Rakala. He sat my wife and myself down in a conference room just for these conversations, and said he was going to refer my case to the transplant team. I looked him straight faced and said "ok"... he turned to my wife and said "that shows he's in denial".... I, having a very quick wit and sense of humor quipped "no doc, denial is a river in Egypt!" he again said that I was in denial, my wife with her face in her hands said "no doctor... he has a warped sense of humor". I was placed on the transplant list, given a pager, and had to go home, get things to take with me for an elongated stay in Rochester. Emblazoned in my memory... is my then 4 1/2 year old son running down the sidewalk trying to keep up with my car as I drove to Rochester, 6 hours away. I cried for 4 1/2 hours leaving him, and my 6 year old son at home with my wife Meg. Once I crossed over the Mississippi, coming from the Chicagoland area, I cried less, and built my will to survive. My first few days I stayed in a convent on the north side of Rochester, because no lodging for Mayo patients was available. I was able to stay with family in Wisconsin only 2.5 hour drive from the clinic, and each Tuesday and Friday I drove to the clinic for my blood work etc pre transplant. (I was able to move into the Gift of Life house, which then (1992) was the convent and a house, after transplant).
I waited in rural Wisconsin for 2 1/2 months, which now would seem like a very short time, but in 1992, the average wait for a liver was 4-6 weeks. I was in an area that television had but 3 channels the tv could pick up, so I immersed myself in reading, and keeping a daily journal. Each day I would record the date, time, weather conditions, and the mood I was in. My stay in Wisconsin was uneventful, and quiet. Often times it was too quiet, and since I carried a pager (cell phones were not available then) I was able to get out and walk, or drive the 30 minutes to the closest town to pick up necessities. Once a month for a day and a half, my family drove the 4 hours up to see me. It was the most joyous, and painful time of my wait. My two sons loved seeing me, as did my wife, but when Sunday came around, and they had to leave, I went into a deep slump. Of course I would journal these feelings and put them aside for a time when I was better able to work through them. 
I had always been positive. I knew I was dying right before my friends and family, but always kept a positive outlook. I would go up for my bloodwork and any other tests they asked for, and always would visit with others at the Gift of Life Transplant House, and made a few friends who I kept in touch with regularly. I kept their spirits up, and in return, felt I had been given a purpose to fulfill by being there for them. In truth, I was alone, fighting this life threatening battle all on my own. My wife and children stayed in Illinois to give the boys some sort of a normal family life. It was draining on all of us.
As I said I wrote daily in my journal. It had become my sounding board. One day I realized that I had not addressed the possibility of not surviving, and needed to leave them something to explain how I fought this battle with my head held high, and never let it get me down for more than a small time. That passage, titled “Joe’s Creed To Life” was what would later become the biggest thing I had ever done as a writer.
Fast forward for a moment to about 5 years post transplant for a moment… I finally allowed my wife to read my journal, and I pointed out that I had written this piece. I had never written anything before in my life, and was quite nervous about this. She read it, and exclaimed “YOU NEED TO SHARE THIS!!” I wasn’t ready to, but she convinced me.

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. 


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.

I became, or discovered I am a very gifted poet, having penned over 300 pieces of poetry, and having a book published. I have always been a musician, I play guitar and bass, and was able to join an old high school friend for a 7 year stint in a 50’s-70’s oldies band. I currently play guitar and bass for my praise team at church. Quite a long way from where I began in music as a blues then hard rock/heavy metal guitarist. I write music, Christian, pop, and specialty songs for organ donation. 
Currently I am retired, having taken early retirement due to COVID. This gave me the opportunity to spend quality time with my wife of now nearly 41 years… we were literally newlyweds (5 years married) when I got sick. I was able to do a recording project for her in which she gave me a list of her favorite love songs, and I was to record them, with me doing all the instruments, and voices. Mission accomplished! Want to hear? Look up Joe Kralicek on Soundcloud (it’s a free music sharing app)!
For those who walk the same path as did I, I applaud you! Be strong, even in times of weakness, PRAY… remember that better days are ahead… my creed is “every day is a good day, some are just better than others”. 
Also join a transplant support group on Facebook! I help run Transplant Survivors, Transplants and Tattoos, Christian Transplant Support, and a group for ONLY caregivers called Caregivers Transplant Support. 
Don’t be afraid to reach out for help, for advice, or just someone to listen to you… that’s what I am here for…
Lastly… write your donor family. I am not just a recipient, I am part of a 3 time donor family. I wrote my donor family each year about the time of my transplant to let them know of my gratitude. Please do the same with your donor family, even if they don’t respond. After almost 8 years, I got a response from my donor family. My donor, Carolyn, was a 48 year old mother of 2, a wife and a physical therapist for brain injury patients. I was the ONLY ONE of 5 recipients that wrote. I got to meet Carolyn’s 2 daughters, and still am in contact with the one who is still living. We are family…she agrees.
Current Status:
I am currently in recovery from yet another surgery. I had to have lumbar fusion, and a micro discectomy due to failure of L4 and the disc between L4 & L5. I am doing physical therapy twice a week, and progressing slowly. This followed surgery back in 2023 for extreme damage to my right shoulder and rehab… lol I don’t do things lightly. I was told it could be up to 6 months before my back begins to feel normal again… I’ll find out. I’m a tough cookie. I am able to play my guitar for hours a day now, and am working on writing more. I’m going to slip in a link to one of my donor songs, especially since I’m writing this during National Donate Life Month!
Im not indestructible, but I’m tough enough to push past the pain to get things done, and smart enough to know when to rest, even if I’ve already over done things.

Remember…. Baby steps. Yes it will hurt, no it won’t be easy… but anything worth living for is worthy of doing this. I would do it again in a heartbeat if necessary.
Thank you for allowing me to share my story… even if you won’t be seeing me at the reunion picnic, know that I’m cheering for each and every one of you… You are worthy!!
Live Life, Love Life, Give Life

Peace
Joe Kralicek
Mayo Clinic Liver Transplant #397
November 1, 1992

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!!