Organ Donation and Transplant: What is Your story?

Welcome. This discussion is for everybody involved in organ transplantation. You do not need to be a gifted writer to tell your story. If you like to write in paragraphs, or if you like to use lists or bulleted items please feel free to do so. Your story might be long or it might be short, and you can share what you are comfortable to share about yourself.
We look forward to reading your story.

@glinda, @billacaregiver, @gphetteplace, @azdan99, @jolinda, @gaylea1, @2011panc, @john1492, @tasher3433, @btwest6, @tjgisewhite, @jsw, @michaelswaim, @loungingsofa70, @mpow00, @estrada53, @cmael, @jodeej, @jerrynord,@ca426, @almula, @amyintucson, @guidant07 and all members.

My Story-
My transplant story started when my primary care physician noticed abnormal results on a routine blood test. He referred me to a gastroenterologist and I was diagnosed with Primary Sclerosing Cholangitis (PSC). For nearly 8 years, I was asymptomatic and under his care.

During the summer of 2008, I began to notice fatigue, itching, and nausea that I credited to a recent vacation and hiking. As soon as the jaundice appeared, I knew that I was wrong! A week later, I had an appointment at the Liver Transplant Clinic. The surgeon said that my disease was progressing and that I would need a liver transplant in the near future.

I was evaluated and placed on the UNOS liver transplant list in November of 2008. My condition deteriorated and my symptoms got worse. The fatigue was overwhelming, and the ascites made walking difficult. I only left the house if I had a doctor’s appointment.
In January 2009, I got news that I might have cholangiocarcinoma and was inactivated from the transplant list until a biopsy could confirm otherwise. Due to biliary blockage, the attempts at biopsy were not successful. My transplant team made arrangements for me to be seen at the Mayo Clinic in Rochester.

My appointment was to be in 5 weeks, but I missed it. Acute kidney failure put me in ICU and on emergency dialysis. My condition stabilized and after 5 days, I was flown from ICU in Kentucky to Mayo in Minnesota, a distance of nearly 800 miles.

I spent 2 weeks in the hospital with inpatient dialysis and other interventions. Biopsy results were negative for cancer and I was re-evaluated and reactivated on the UNOS list - for a simultaneous liver and kidney transplant. I requested to stay at Mayo for my transplant.

My husband was at my side the entire time and for 13 weeks our home was at the Gift of Life Transplant House where we met other transplant patients. We discovered that we were not going to be alone, even though our family and friends were many miles away.

The days and weeks leading up to my transplant were long and exhausting. Time seemed to slow down, as day after day I struggled to regain some strength and weight so I would be strong enough for surgery. The jaundice, the nausea, the fatigue, the ascites, the inability to sleep, the procedures, and the dialysis were my normal.

I got the Call from my transplant surgeon early one April morning in 2009. We rode the patient shuttle to the hospital. I remember getting cheers and high fives from the nursing staff as my husband pushed my wheelchair down the hallway! The morning was busy, as I had a short dialysis treatment, and was visited by surgeon, anesthesiologist, chaplain, several doctors, and even our 2 sons who were in town to visit us that week.

My surgery was successful. My new organs began to function immediately. My days of recovery went well, and every day, I was stronger than the day before. It was a joyful time for me and my family.

After 3 weeks, I returned home. Gradually my strength and my endurance continued to improve. Since my transplant, I am once again able to go hiking with my husband, I have resumed playing my violin on Sundays at my church, and have also started a prayer shawl ministry there. I have also joined Mayo Clinic Connect where I volunteer as a Mentor.

@rosemarya thank you for sharing. you re true gift to all of us in our journey.

MY STORY

My experience with kidney disease started when I was in my early twenties. I had been having recurring uti’s. My doctor referred me to a urologist. After having an IV pyelogram, which he requested, I went back for a follow up visit. He told me that my kidneys look as though I have a lot of scarring and my kidneys were small due to chronic pyelonephritis. At the time, I was naive and felt like the diagnosis wasn’t right since other than the recurring bladder infections, I felt pretty good.
Years went by and the bladder infections, which at times went into the kidneys, seemed to be under control. Then, when I was in my fifties, my blood work started showing that my kidney function was going down. She referred me to a nephrologist. He talked to me about my kidney function and told me an analogy about how it’s like trying to run a 6 cylinder car on 4 cylinders. The stress on the kidneys will eventually cause them to fail. This scared the living daylights out of me and I thought my life was not going to last long. I continued seeing the nephrologist once a year at first and more frequently as my kidney function deteriorated. I was eventually told that I should meet with a representative about dialysis, but there was the option of having a transplant. They seemed to think that because of my age of 74, there probably wasn’t much of a chance for me to get a transplant. I thought that peritoneal dialysis was what I’d choose. My family, however, thought that I should try for a transplant and I had two daughters and a grandson that would be willing to be tested for a match. My grandson was ruled out right away, when he contacted Mayo, because he’s a type 1 diabetic. Two of my 3 daughters were tested and found to both be a match.
In Nov of 2017, I went to Mayo for 3 days to be tested to see if I could be a candidate for a kidney transplant. I was very nervous. I felt as though this was all surreal. I felt pretty good, I thought, and can’t be at the point of needing a transplant. My GFR was 13. After all of the testing and finding out that I was in pretty good health for having a transplant, the doctor said that she was willing to present my case before the board. The only negative was my frailty score and that was because of arthritis in my hands. Everything else was fine. About a week later, I found out that I was approved for a transplant. Since both daughters were a match, they decided between them which one would be the donor. My donor daughter was very enthusiastic about being a donor and was found to be a good candidate to give me one of her kidneys.
We set a date for April, based on the weather being safe then, without snowstorms being likely. I rented a house from AirBNB for a month. My oldest daughter would be the caretaker for both me and her sister. My husband also stayed with us. His dementia made him unable to be the main caretaker, but he was a help. My daughter’s family stayed at the house for a few days before I went there to stay.
On the day of the transplant, I was pretty scared and shaking. It went well and I felt pretty good when I was back in my room. My daughter was right down the hall from me.
After the anesthesia wore off, I wasn’t feeling as well. I had a problem with painful abdominal cramping for a couple of days, before they had me drink some magnesium citrate. They had given me morphine for the pain before the laxative finally kicked in. It worked so well that I was up all night having accidents in the bed and on the way to the bathroom. I think that was probably the worst part of my recovery. The diarrhea continued until I had been out of the hospital for a few days, although it continued to improve. My other problem was that I started showing signs of rejection. To treat it, I had daily infusions of Medrol, a steroid for about 5 days. This stopped the rejection and I was told that my immune system was in the 17% of people my age that have a stronger one. Because of that, they hadn’t given me enough immunosuppressants. My abdominal pain from the surgery lasted for about 7 weeks, but I felt good otherwise. I also realised that even though I thought I still felt pretty good before surgery, I definitely had much more energy and generally felt much better after. It’s now been 2 ½ years since my surgery and things are going well, except for one thing. The BK virus showed up at my last Mayo checkup in May. They treated it by lowering my Cellcept dose. It is still showing up in my labs, but is slowly coming down. Now, instead of doing labs every two weeks, I can go back to once a month. My donor daughter is doing terrific and we’re very close.
Sometimes, it still seems like a dream that I’ve had a kidney transplant and I’m so grateful.

Cmael

My Heart Transplant Story

2008 Flu Virus causes Pericarditis, Heart Failure & Hospitalization resulting in an Ejection Factor (EF) of 5%. I went home with a combination pacemaker/ defibrillator plus antiarrhythmic drugs.

2008-2011 Recovered well EF returned to the 45% range and life was normal. I enjoyed hiking and camping working around the house, Worked Full time as a Communication Technician.

2011-2015
Received my first of a few Defibrillator shock’s, my Cardiologist recommended me to an Electrophysiologist (EP) Cardiologist.
Two Successful Mapping and Ablation’s with Medication Adjustment, Quit Smoking after 30+ years

November 2015 Third Ablation (different Doctor), very Un-Successful and not needed, my advice always questions a major surgery if there is no urgent need.
Post procedure I went thru the worst week in my life. Multiple arrhythmias, 8 shocks all within a few hours. One positive I decided alcohol was not my friend and gave it up also. Glad I did since Heart Transplants are out if you indulge.

January 2016 New EP Doctor recommended by my other doctors. Used Medication and Pacemaker adjustments to control Arrhythmias.

November 2017 my heart finally started having too many arrhythmias and after a couple more ablations my EP doctor recommended that he wanted to have an evaluation at Mayo clinic just to be ready if it became likely that a Heart Transplant was needed.

December 2017 I was Transferred to Mayo for Evaluation (6th), underwent a Thyroidectomy due to Amiodarone Toxicity (13th), Discharge to Home (14th), But back for good on the 18th due to Arrhythmias.

Mayo Transplant Committee Approved Replacement(22nd) pending Insurance, Final Ablation Tried but Heart to far gone (26th), Listed on UNOS Status Code 2 (29th). It got to the point that only IV drugs could control my arrhythmias, so I was probably not leaving the Hospital.

Then on the 31st I became unresponsive and had what appeared to be a stroke. What was interesting is during that time I was in the strangest dream I’ve ever had, turned out I had become allergic to the very drug keeping me alive IV Amiodarone. Well this made things worse, so I was brought up to a UNOS Status 1b on the transplant list.

January 2nd, 2018 tried an MRI in hopes of finding the bad paths but having a pacemaker made that difficult.

January 4th, 2018 What an interesting night, they scheduled me for a PET scan, and they said that it works better if you have some fatty food. Being Late & the Cafeteria closed my wife was going to go out and get me something, I wanted a steak, but it was probably just be a burger. Just before she was about to leave the Nurse came in and said forget the food your now NPO. Well shucks I was looking forward to the steak. I asked why and She said the Dr will be in shortly to explain.

Well that is when I met my Transplant Surgeon, so would you like a new Heart? Looking at my Wife we both thought that was the news but now confirmed. Well of course we answered yes, but there was an issue with this heart and he was not able to tell us what, I said can you give me some odds and his answer was “If it was my wife, I would recommend it” I said that’s good enough for us let’s do it. He did say he had a policy that he goes and looks at it himself before his finial decision so you will not know until you wake up if I decided it was a good one.

January 5, 2018 Heading to the pre-op Excited and in wonder at the same time. But I knew this was all in God’s plan for my life.
First the paperwork and the best part of that was signing the pacemaker removal. After the past couple of years, it couldn’t be gone fast enough. We’ll all prep completed and off to La La land for me. Next thing I remember was back in ICU with enough stuff hooked up to me to wonder what I had gotten myself into. No turning back now had a different Heart and Praying it was a good one

October 2020 I am almost 3 years post-transplant with a great Heart and doing very well. I’m walking 4-5 miles at least 5 days a week, Hiking and I’m back on the golf course. Life is looking pretty good. I won’t say I haven’t had issues it seems I catch virus easy I have had CMV and Parvo B19 which I get treatments for. But they really don’t cause any symptoms and except for the monthly IVIG treatments and extra antibiotics I really do enjoy my life. I had to retire due to my age and that my last position would not be contusive to my new requirements and to close to retirement age to retrain into something else. I now enjoy volunteering at my church Live-Streaming and Website Administration which brings me satisfaction and keeps me busy.
There are many other detains I left out to try and keep it readable but Please feel free to ask any Questions and I can elaborate.

@jerrydrennan, it is wonderful to hear from you. I hope you will add your own your story highlights here, too!
Rosemary

What a journey! Thank you for sharing. It sounds as though your positive attitude helped as much as anything else☺️

What a miracle. My husband went through the same steps as you for 3 and half years. October 7th he received his new heart and we felt so blessed. He was home in 10 days after surgery and we were on our way to recovery. As his caregiver I had no idea what I was in for. We have always been close and really loved being with each other, and I imagined it would be the same after the new heart. I suddenly realized that his life was now in my hands and I had to follow medication instructions and food instructions by the book. The first couple of days of was a nervous wreck, but finally got into the rhythm of the meds and watching what I cooked and served him. He is diabetic and of course he craves sugar or anything sweet and crunchy. On Prednisone his craving became worse and all of a sudden I became Nurse Kratcit on withholding sweets. We had a few talks on the issue but when the craving came there was no stopping him. Finally in the last couple of days I have been showing him the pattern of his blood gluose since he started wanting sugar-free cookies (no such thing but if they say sugar free he believes it). He has finally realized the difference in his blood gluose before and after the 2 cookie binges and he came around. He is doing well and very happy with the Mayo Transplant Team. Hoping for a speedy recovery and keeping his vitals where they need to be. Thanks for your story.

@jstoll, I would love to hear more of your story as a caregiver, caring for your husband while waiting for a heart to be available, getting the call, waiting during surgery and the care at home now. What's it like being bedside and involved?

@jstoll Congratulations on the new Heart That's awesome. Hang in there tho the first 6 months will be a challenge with all the appointments and biopsies. But life will settle down pretty quickly. My wife also went thru what life would be like going forward. But it will become so routine after a while you won't even notice it. Any questions come up please ask.
Dana