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Organ Donation and Transplant: What is Your story?
Every transplant patient has a unique story to tell. Let's create this place to share our stories. By sharing, we can meet others like us, we can encourage people who are at the beginning of their journey, and we can support those who are on the waiting list.
Here are some questions for you to consider as you write your story:
– Focus on yourself and how you felt, what you did, who helped you.
– How did you find out that you would need an organ transplant?
– What was the waiting and recovery like for you?
– How has your life changed since your transplant?
Organ donation and transplant is a very personal. To respect the privacy of all be sure to have permission before sharing identifying details about others involved in your story, for example
– your donor/recipient (age, circumstances of death, etc)
– your caregiver or family members (say "my husband", rather than using a full name)
What is your transplant story?
Note: If you want to ask a question for another member who has posted their transplant story here in this discussion, be sure to add their @membername in your post, for example @rosemarya. Your question may already be discussed in other transplant discussions. Be sure to check here first: https://connect.mayoclinic.org/group/transplants/ That way this discussion can be reserved for member transplant stories and hopefully make it easier to read and find similar symptoms to your own.
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What a heart-warming story - full of sadness, but also hope and happiness. I'm so glad to hear your husband received the care he needed at Mayo - they do, indeed, work miracles. Our book will be published next May by Cornell University Press. I will absolutely provide updates to this group, including a sneak peak at the cover art, which we hope to see very soon! Thank you for your encouragement for that project.
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2 ReactionsHello, I wanted to give everyone a up date. I am alive and well after having a liver transplant 2.5 years ago. My transplant doctor warned me that I might gain weight. I gained and lost 20 pounds. I have gained all my muscle mass back. I am still on Tacrolimus 5 per day. I feel good, and Have mental clarity. I am blessed that I was able to live through such a event and I credit the fine people at Cedars-Sinai Transplant center for my out come. I can't express more the fact that your chances of success are better if you find out as much information about your condition as possible and that includes finding a transplant specialist to evaluate your condition. Keep yourself in good shape other than the obvious, and ask questions of the health professionals you deal with.
If you are in need of a parasentesis you may be better off scheduling with interventional radiology instead of the emergency room. All is well and best wishes to all. TIM
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3 ReactionsThank you so much for sharing. I am in the testing process to be a living donor for my mom. I fly to Arizona mid November to complete my testing process and if all goes well then I will be having surgery in January.
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3 ReactionsWhat a blessing that you may be able to donate to your mom. Best of luck with the testing and, hopefully, subsequent surgery!
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3 Reactions@jillmartinez55, Welcome to Mayo Connect. I hope that your tests are going smoothly for you as you proceed toward donating a kidney to your mother.
Have you read @cmael's story at the beginning of this discussion? Her daughter was her living donor, you will see it if you scroll to the 1st page of this discussion.
Here is a discussion I want to share with you. "Kidney transplant - The Journey from the Donor's Side." If you click on the link you will be taken directly to the discussion and you will meet @mauraacro, who shares her kidney donation experience and details from the testing thru the actual donation to the present. It is a long/popular discussion! If you start at the beginning, you can follow her and other donors. You will be both educated and inspired. And I urge you to ask your questions to these living donor "experts" and to know that you are one of our transplant heroes!
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/
I will be looking for you there, and I am always available if you have questions or get lost on Connect.
And, before I forget - Please come back to this discussion and share your transplant story in 2021!
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3 ReactionsMy transplant journey began on Christmas Eve, 2013. My son and daughter were home for the holidays and we were having a nice Christmas Eve dinner. I was acting strangely and my husband was immediately concerned and called the EMTs. They checked everything out, my husband and daughter thought I might be having a stroke, but nothing showed up that they could test for so I was brought to the ER. I underwent numerous tests but it was determined that I was overtired, dehydrated, and a couple of other things and advised to see my PCP for follow-up.
I went to my PCP but nothing was determined. I had more of these episodes of confusion, some were more serious than others. The PCP that I had at the time called me one afternoon and told me that she thought I had Alzheimer’s! Two other doctors literally guffawed at that, and also were surprised that a doctor would call a patient on the phone to give them what is such terrible news. I began my search for another PCP. She was a family practitioner and I was told by a couple of other doctors that I should consider a doctor of internal medicine, they are generally better diagnosticians, although there are some family doctors who are better at that than others.
I found another doctor who was highly recommended but he was also mystified. He sent me to a neurologist thinking my problem was neurological. The neurologist checked me out and his first guess was that it was a post-migraine syndrome since I had severe migraines prior to menopause. He also thought it could some type of seizure and put me on a drug for that. That did not help. I continued to have HE episodes, some of which caused hospital stays of a few days. I had low platelets so I was seeing a hematologist for that and he could not determine the reason for my declining platelet count, called it “ITP” which basically means they don’t know.
At that point, during a hospital admission, the neurologist suggested that it might be my liver. I also had hand tremors, terrible leg cramps, particularly in my thighs, I was always cold, had severe edema a number of times, along with the HE episodes. (HE is short for Hepatic Encephalopathy which is caused by ammonia going to the brain. It causes a great deal of confusion and sometimes delirium. If not treated it can put a person into a coma and even cause death.) They tested me for high ammonia and sure enough, it was high. This all took place over about 15 months – it was March of 2015 when that was finally recognized. I was sent for a CT scan to confirm cirrhosis and sure enough, that was the problem. It was April when I got the diagnosis. My PCP told me I needed to see a hepatologist and suggested a particular hospital. We went there and did not care for it so I did my own research and chose Mass General. It was June when I got to see the hepatologist there. She told me that I probably had cirrhosis for 10 years, it takes a long time for symptoms to be so pronounced that it is recognized. When I looked back I realized that must be true because my platelets had been declining for a number of years, I was diagnosed with diabetes in that time frame, and my hands had been shaking for years. That was originally diagnosed as “essential tremor”.
They started the evaluation for a liver transplant and I was put on the list sometime during the summer with a MELD of 18. Being in region 1 transplants generally took place when the patient’s MELD was in the 30s so I knew I would have a long wait. Also, when my cirrhosis was first diagnosed I was put on lactulose but the hepatologist put me on xifaxan and I was able to drop lactulose for almost a year and had no HE episodes. When I did have an HE episode again I had to resume taking lactulose along with xifaxan.
During most of this time I was able to lead my normal life, doing all of the things I had always done. Even after I was on both lactulose and xifaxan though I did have HE episodes so I had to be careful. For me, my episodes were almost always preceded by a bad stomach ache. If I had any degree of stomach discomfort and I was out I would immediately head home, just in case. Most often nothing did happen, but it was better to not take risks.
In August of 2016 I started retaining fluid. A week before this I was at my PCP and he commented on how well I looked and said if he didn’t know he would think I was perfectly healthy. Over the next month though I gained about 35 pounds of fluid and there was fluid leaking out of my feet and ankles. Thinking this was going to be life until November I was a bit discouraged but miraculously for me, I got the call on September 22! My transplant occurred on September 23, 2016. It was a 7.5 hour surgery and I discovered afterward that there were 3 transplant surgeons in the surgical room.
I was in the hospital for 6 days during which I had some pain, initially fairly severe, but by the time I went home it was pretty much gone. On my first post-transplant visit, a week later, I was doing so well that I amazed the transplant team. Other than the swollen belly which took a while to go down, I looked as good as I would normally look. I was back to doing everything within a couple of months. My only restriction was to not lift anything heavy, a gallon of water was how they defined that. I have never had a problem with my liver since then, just some relatively minor problems from my immunotherapy.
Some people wonder if they should go ahead with having a transplant, which is something I pondered also, but I am so glad that I did. The last four years have been good ones, including this time of isolation due to COVID. My daughter and son both have gotten married and I was able to be there for that, and to dance with my son at his wedding. Due to our ages and my immunotherapy we are isolating heavily, getting everything delivered, but we get to Zoom with our son and daughter and talk to them on the phone frequently and are looking forward to being able to be with them again. Neither of them lives close to us.
I have no regrets and do not feel any guilt about my donor, I had nothing to do with her death, which was tragic. I feel a great deal of grief for her family though and think of her every day.
To all of you who are awaiting a transplant, I wish you good fortune in getting one without too long a wait, and that all is as successful as mine was.
JK
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7 ReactionsWe are dealing with a very recent transplant - our family member just had a heart/lung transplant at Mayo. I'm the patient's ex-wife, which may sound strange that I'm closely involved, but we are a tight extended family and I think of him as my brother. Due to Covid he's only allowed one visitor, and that has been our adult son. So we're doing what we can to support my son as he supports his dad.
We are just starting this very long journey of healing, and understand there are a lot of ups and downs about to be faced. I offered to my son to reach out and find us some support groups and gather information to share with him and his siblings. My coping mechanism is to gather information and learn all I can.
We'd appreciate any insights, wisdom, tips or whatever people would be willing to share with us. We will also be looking for support groups to join for my ex, and for us family members.
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5 Reactions@bcrandall Welcome to Mayo Connect! My husband is a kidney transplant recipient, now 4 years out. Each transplant patient and their support team is a unique story, a unique journey. It's wonderful that you are all working together to make this time as meaningful and smooth as you can! Was the surgery at a Mayo Clinic campus, or somewhere else? Either way, congratulations!
Here are a few links to existing discussions within the transplant group conversations:
Dealing with tips and suggestions is https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
Lung transplant thoughts here https://connect.mayoclinic.org/discussion/lung-transplant-post-op-would-like-to-hear-positive-stories/
Post transplant thoughts here https://connect.mayoclinic.org/discussion/changes-after-transplant/?commentsorderby=ASC#chv4-comment-stream-header
@danab is a fairly recent heart transplant patient, and possibly offer you thoughts. Also, check with your ex-husband's transplant team, to source out local support groups who may have some ideas. I think you might hear "everything in it's time", "don't forget to take your meds!" often, as we heard ;)) It's true!
I look forward to hearing from you.
Ginger
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3 Reactions@bcrandall Hi and Congratulations on your ex-husband's new Heart and Lung. Exciting times and I didn't see this post before my answer in the other message but either way is fine. If you haven't seen it yet at the beginning of this thread is my transplant story. I welcome expanding on any.portion of the process going forward. Please share any concerns you may have and if i cant answer them there are others here also. As for a support group this is a great one and i highly.recomend the patient portal. Nurse Coordinators are a great resource also. They can also direct you to others in the Mayo departments like the social workers to get questions about his direct care. I also would suggest that your Son and ex husband also join here at connect, there are caregivers also here that are a great resource. We look forward to hearing more as the process unfolds.
Have a Blessed Day
Dana
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4 ReactionsThank you very much for your quick response. I'm having my son, daughter and step-son all join this forum also so they can get more information.
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5 Reactions