Organ Donation and Transplant: What is Your story?

@scottij That's a very compelling opening of your story. I am the daughter of a heart patient and was a caregiver to my dad at end stage heart failure. I would get phone calls from my mom that my dad was very lethargic and his breathing was labored (which was fluid in the lungs) and I sent my dad to the emergency room many times. My dad had also had a head injury at 65 and could not reason well, so convincing him of needing medical attention was difficult, but I asked him to go to the hospital for my mom because she was worried. I had to employ this tactic with paramedics standing there trying to convince him to go and get my mom to ask him. When my mom told me he had collapsed on the floor and then in a few minutes got up and was fine, I told her that she could not assume that because were are not qualified to make that decision and we don't know why it happened. She wanted to side with my dad and his idea that he was fine because he was the head of the family. It was an electrical problem, and the pacemaker he had at the time had restarted his heart. Next there was an observational stay at the hospital and they were about to release my dad because nothing had happened. He decided to use the restroom unassisted, and the electrical misfire happened again, so in rushed all the emergency people with their paddles to shock his heart into behaving again.

I like your description of the "typical male fashion" of thinking about things. That is the very thing that will add extra risk to a problematic situation. Some things are beyond our control and the sooner we accept reality; the better our chances are.

Hi there! Facing an organ transplant can be a scary proposition. I feel like anybody facing this kind of surgery faces a lot of fear. There is fear of not finding a match, or finding a match in time; fear of rejecting the organ, fear of the other side effects that come with anti-rejection meds, etc. Several years back; I was pre-qualified for a double lung transplant because my lung function tests showed that I was entering a danger level for lung failure. That was in 2016. I was able to divert the need for transplant then, but, have been in a slow decline since then, and Mayo feels like I need to get listed now. I will begin my journey on May 16 with two weeks of pre-qualifying tests to see if I am still a candidate for a transplant. Lung transplants are particularly more difficult than other solid organ transplants in that the new lungs get exposed to foreign elements when a person breathes in outside air. I have learned that I am HLA Class 1 and Class 2 positive, which means I am autoimmune and will more than likely be constantly rejecting the new lungs. These genes are rare, as is my blood type B+ which will make cross-matching extremely difficult if not impossible. Mayo still thinks I should go for it, but I am worried about my quality of life if I do. I have been in Pulmonary Rehab for several months now and it has helped me a lot with energy and shortness of breath. My present plan that I follow is to stay as fit as possible and keep a positive attitude. I keep a sunny disposition and do not dwell on what may lie ahead. Today, I am breathing ok, I can walk, I can still go shopping (or other places), walk my dogs a mile each day...... so, I will just enjoy this day and be grateful that I am at this level, at this time. That is my story; anyone else out there with HLA (Human Leukocyte Antigens) complications?

Hi there! Facing an organ transplant can be a scary proposition. I feel like anybody facing this kind of surgery faces a lot of fear. There is fear of not finding a match, or finding a match in time; fear of rejecting the organ, fear of the other side effects that come with anti-rejection meds, etc. Several years back; I was pre-qualified for a double lung transplant because my lung function tests showed that I was entering a danger level for lung failure. That was in 2016. I was able to divert the need for transplant then, but, have been in a slow decline since then, and Mayo feels like I need to get listed now. I will begin my journey on May 16 with two weeks of pre-qualifying tests to see if I am still a candidate for a transplant. Lung transplants are particularly more difficult than other solid organ transplants in that the new lungs get exposed to foreign elements when a person breathes in outside air. I have learned that I am HLA Class 1 and Class 2 positive, which means I am autoimmune and will more than likely be constantly rejecting the new lungs. These genes are rare, as is my blood type B+ which will make cross-matching extremely difficult if not impossible. Mayo still thinks I should go for it, but I am worried about my quality of life if I do. I have been in Pulmonary Rehab for several months now and it has helped me a lot with energy and shortness of breath. My present plan that I follow is to stay as fit as possible and keep a positive attitude. I keep a sunny disposition and do not dwell on what may lie ahead. Today, I am breathing ok, I can walk, I can still go shopping (or other places), walk my dogs a mile each day...... so, I will just enjoy this day and be grateful that I am at this level, at this time. That is my story; anyone else out there with HLA (Human Leukocyte Antigens) complications?

Thank you so much for sharing your story about your experience with your father. I have been reading posts for a couple of weeks now, and would like to thank everyone that has contributed to the site. This is my first contribution and I hope that my story is helpful to someone else. - I was diagnosed with PBC more than 20 years ago. Thanks to medication, my disease did not progress much for a very long time. Up until about a year ago I was prepared to live out the rest of my life with my original equipment liver and treat symptoms as they came along. Since that time, in addition to CKD, I have been diagnosed with both Gastroparesis and a malignant NET in my stomach. Fortunately, my doctor was able to identify and remove the tumor before it had an opportunity to grow or spread. Just a few months ago, my doctor determined that my numbers were indicative of a rapid escalation of my PBC. It was time to meet the transplant team. So, as you can imagine it’s been a rather stressful year! I am currently awaiting word on a live donor candidate so I can move forward sooner. I understand the wait on the list can be rather long, especially in New York. I have a number of symptoms that could be related to any one of these issues or none of them. It has taken me a while (and a good therapist) to learn to put myself first. I still have a difficulty at times deciding whether I should alert my doctors when something new arises for fear that I will be wasting their time. But I am working on that, and my doctors agree that I should air on the side of caution regardless of the issue. I believe I read I read another post earlier today where someone described the fear, excitement, and anxiety at every turn. It is very comforting to know that others are experiencing the same myriad of emotions. I am very happy with my doctors and my transplant team, so I am trying to be patient, take care of my needs, and get through this process step-by-step. Sorry for the “novel”, and thank you again for sharing your experiences with me!

Thank you so much for sharing your story about your experience with your father. I have been reading posts for a couple of weeks now, and would like to thank everyone that has contributed to the site. This is my first contribution and I hope that my story is helpful to someone else. - I was diagnosed with PBC more than 20 years ago. Thanks to medication, my disease did not progress much for a very long time. Up until about a year ago I was prepared to live out the rest of my life with my original equipment liver and treat symptoms as they came along. Since that time, in addition to CKD, I have been diagnosed with both Gastroparesis and a malignant NET in my stomach. Fortunately, my doctor was able to identify and remove the tumor before it had an opportunity to grow or spread. Just a few months ago, my doctor determined that my numbers were indicative of a rapid escalation of my PBC. It was time to meet the transplant team. So, as you can imagine it’s been a rather stressful year! I am currently awaiting word on a live donor candidate so I can move forward sooner. I understand the wait on the list can be rather long, especially in New York. I have a number of symptoms that could be related to any one of these issues or none of them. It has taken me a while (and a good therapist) to learn to put myself first. I still have a difficulty at times deciding whether I should alert my doctors when something new arises for fear that I will be wasting their time. But I am working on that, and my doctors agree that I should air on the side of caution regardless of the issue. I believe I read I read another post earlier today where someone described the fear, excitement, and anxiety at every turn. It is very comforting to know that others are experiencing the same myriad of emotions. I am very happy with my doctors and my transplant team, so I am trying to be patient, take care of my needs, and get through this process step-by-step. Sorry for the “novel”, and thank you again for sharing your experiences with me!

@tream01, Welcome to Connect. I can feel your fear and your excitement about the prospect of getting your liver transplant in the hopefully, not too distant future. Mine was 13 years ago and I remember the same emotions.
I am happy to hear that you might get the liver early with a living donor. It does sound like you have already found a good match in your transplant team! They are absolutely correct that you should never hesitate to contact them.
You said that you are getting helpful tips and encouragement by reading the posts. That is terrific! We learn and support each other by sharing our experiences.

Here are a couple of discussions that I want to share with you:
-It's getting real... found a living donor
https://connect.mayoclinic.org/discussion/its-getting-real-found-a-living-donor/
-Liver transplant - Let's support each other
https://connect.mayoclinic.org/discussion/liver-support-group/
@tream01, I can't wait to read the next chapter of your novel!
How can I help you as you prepare for transplant?

@tream01 Welcome to Mayo Clinic Connect! I'm glad you have been reading the posts and decided to let us know about your own health journey. So many of us have a multi-pronged story, and getting it down onto a post can be therapeutic, don't you agree?

My husband had a kidney transplant in 2016, and the trepidation/excitement/logistics definitely were part of his story, also. As everyone says, "baby step" and reading the experiences here can go a long way to calming you down. Definitely keep a journal if you can. You can write about your feelings, have another section for questions, and your doctors were wise to tell you to err on the side of caution when it comes to letting them know about questions you have. They are part of your medical team, but also support you! I have found that most doctors like an involved patient. It's difficult to put ourselves first, yep, I've been there, done that!

Does your team have information about your CKD? Cause and what may be in the treatment future for it?
Ginger

As I am in the process of writing a book on my experience I am finding it impossible to put a few short paragraphs down to share with others. The book is based on a poem that I have always liked:

Behind you are all your memories
In front of you are all your dreams
Around you are all who love you
Inside of you is all you need

I intend to cover how I got to emergency valve surgery despite a life of apparent health and the subsequent life-saving heart transplant nine months later. Followed by a second section on what I intend to do with the additional years granted to me. The third part will focus on all of those whom I have to thank for being here and lastly, what is inside of me and creates my drive.

I have titled the book "All Days Are Good Days; Some Days Are Just Better Than Others" Here is a excerpt
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As usual we went to dinner that night and Vicki asked if I was okay as I seemed listless. I said I was having a hard time catching my breath. We thought it might be a cold or even valley fever, a fungus infection prevalent in the Southwest where we were new residents. We skipped dessert and came home. I went to bed early as I was rising at 3:30 AM to catch a 5:30 AM flight to New York where I was having dinner with a client and then conducting a transition lab for said client over the next two days.

Within a half an hour of shutting the bedroom door Vicki came in and said she could hear me trying to breathe and wanted me to go to the emergency room. I reluctantly called the closest ER and they said I probably should come in but that if I had to be admitted they could not admit me due to limited bed space in the hospital. In typical male fashion I thanked them, hung up, and ranted for a few minutes. I told Vicki that I was fine and would likely sleep on the plane (God, I miss first class travel). She begged me to reconsider as she heard about a new ER that had recently opened. “Let’s just go and be sure you are okay.” We made the 15-minute drive and walked in.

It certainly was a new ER and thoroughly unknown to anyone else as the only people in the facility were staff who were all standing around drinking coffee. Apparently, I said the magic words, “shortness of breath,” and they immediately set me up in a room. I was poked, prodded, x-rayed, and scanned. Nurses were in and out and I was the center of attention in the way you do not want to be the center of attention. After a few minutes I asked the doctor when I would be released as I needed to catch that flight to New York in a few hours. He looked at me quizzically and said, “You are not going anywhere. You are on the verge of a major cardiac event. We are trying to admit you to an available hospital. My guess is you have congestive heart failure.” And then he walked out.

“What the hell?” And then both Vicki and I were googling Congestive Heart Failure. He had to be wrong. I had none of the markers. My blood pressure was low. Sodium was good. Cholesterol was good, no, great. I exercised like a demon. I had no water retention (that I could see). I was not obese. I was not diabetic. I did not smoke. I did not do drugs. I had no family history. It had to be something else. It had to be. But it was not. It was time to live one of my rules: Face reality as it is and not as you want it to be.
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Best always,
s!
Scott Jensen

My Kidney Donor Story- ! am almost 72 years old. My 45 y o son had IgA nephropathy which progressed to him needing peritoneal dialysis over a year ago. I was originally screened to be a kidney donor at Mayo Jacksonville but was turned down because of "short renal arteries". I got a second opinion at Mayo Rochester and was approved as the surgeon thought my renal arteries were not short. I was put in the paired donor program. A total of 6 of us had our surgery on 3/31/2022 ( 3 donors and 3 recipients). My son was one of the recipients. My son and I are doing fine. I tried to communicate with the recipient of my kidney via 2 emails but I have heard nothing back. Of note is my father had a heart transplant in about 1991 and he lived till 2001. My father saw several grandchildren grow up because of his heart transplant, I regularly donate blood. I encourage others to be donors.