Liver transplant - Let's support each other

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. 


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.

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.

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

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.

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

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!

Sorry I must make a correction. My transplant was in October 2020, not 2024. 🥴See what I mean. Hahahahaha

Thank you for the response! I have done what I always have, that being following my instincts, and mostly the doctors orders. I have many other medical issues that aren't transplant related, so I keep a close eye on what my body tells me. I have had several near death experiences thanks to that lovely infection called cellulitis... Since my transplant, I've had many major surgeries, none of which thankfully are liver related, except for the cataract, and detached retina surgeries, which are prednisone related.
I guess my best advice is to live life, not in a sheltered environment, but get up, get out, and do life! I spent 10 years as a Scoutmaster for the BSA, camping mostly in a tent one weekend a month 11 months of the year (I live in Illinois so we see a good amount of brutal cold) I am as I said a writer, and a musician! I did a 7 year stint in an oldies (50's-70's) band, and now play guitar and bass for my church praise team. I write pop, Christian, and donor awareness songs too! I'll include a link to one of them here.
My best advice is to push the boundaries of what you think you can do. Currently I'm recovering from spinal fusion surgery, 7 weeks post today. Not the toughest surgery I've had, but it is one of the most challenging!
As for the advances in liver transplant, I am completely in awe. When I was transplanted, the average stay in hospital was 21-26 days, then you were to stay in the Rochester area for 2 months post. I was out of the hospital in 10 days, and home a month and 4 days after my transplant. I not only made it home for Christmas, I made it home for my birthday! With the stats we were given about the length of stay, we didn't think once September passed that I would be home for either. My then 2 sons (I have 3 adopted children now too) were 4 1/2, and 6. I believe my being able to be home for Christmas was the best gift they got that year! For me it sure was!

Peace
God Bless

@bigjoek, Good Morning. Congratulations on your successful liver transplant. Wow! You will be celebrating 32 years later year, while I will be celebrating 15 years later this month. I can fully identify with the feelings that you have expressed in your poem. Thank you for sharing your post transplant gift for using words to express the beauty of the Gift of Life. As you have already said, " Truly this is a gift I was given to say those things that others feel, yet cannot express."
I am inspired to read of your longevity with a liver transplant. I know that there were some bump along the journey and with being one of the early recipients and early Prograf (tacrolimus) studies, you must be in awe of the advances with the entire world of transplantation.
Joe, How have you managed to remain healthy and protect your transplanted liver for 31+ years? What has worked for you?