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Organ Donation and Transplant: What is Your story?
Transplants | Last Active: 5 days ago | Replies (94)Comment receiving replies
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
Replies to "As I am in the process of writing a book on my experience I am finding..."
Exactly what happened to my wife. But found out later it ran in the family.
Scott: I enjoyed your excerpt and looking forward to reading your book when published. I am saving your post so I can look for it. Do you have a publisher yet? So many healthy people experience the same symptoms every day and ignore them. We all have that "this cannot happen to me" because I follow the health guide rules of eating correctly, exercising and stay away from drugs and smoking. What we don't understand is that heart failure can be passed on from generation to generation even to those who follow the rules. Our son, Scott was a prime example. He was forty (40) years old, had his own landscaping business, very active, ran triathlons, and very active with his friends. He had never been overweight and did not take drugs. He had a beer with the guys on the weekends watching football. Can you imagine getting a phone call at work that your son is in ICU on a ventilator because he had dropped dead of heart failure. The ambulance crew brought him back; but it was too late he lost all brain function due to not getting enough oxygen to his brain and organs. We too, like you, stated "this cannot be happening". As the family rushed to his side we were told the sad news and all had to say goodbye to him. My husband just had a heart transplant on October 7th at Mayo Jacksonville. He struggled with congested heart failure for 4 years. In and out of the hospital. The doctors did everything possible to stop these attacks by implanting pacemakers, defibrillators, watchman and he was on a new FDA study for the WISE system. He was the first WISE system implant in Florida. In May the doctors said "it is time for the Mayo as we have done all we can". He will be 74 this November and we knew the cutoff was 75 to be eligible for a transplant. We were lucky as he qualified and Mayo and their due diligence made it happen. We are blessed. Please keeping giving us excerpt of your upcoming book.
@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.
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.
@scottij
I just began posting on Connect this past July and I recently came across one of your posts from November of 2020 on the thread titled "Transplant anti-rejection medications. What's your advice?" I wanted to contact you so I thought I'd check this site that was new to me to see if you had posted your story here. And lo and behold...here you are!
First of all, congratulations on your life-saving heart transplant, and I pray that you are continuing to do well. I enjoyed reading your post and I love the poem you shared at the beginning as well as your new rule to live by at the end: Face reality as it is and not as you want it to be. The poem and your rule will now become words for me to remember and live by, as well,
I plan to go through this thread to read all of the interesting stories shared by transplant recipients. We all have different stories and have come to the same destination of transplant via different roads.
The reason I wanted to contact you is that in your post from the thread "Transplant anti-rejection medications. What's your advice?" you mentioned that you had named your new heart "Dave." I thought I was the only person who named their new transplanted organ. I had a kidney transplant 11 months ago and named my adopted kidney "Maisha" which means life. Maisha is treating me well, and I pray that Dave is treating you well. I call Maisha my adopted kidney because, unfortunately, her original host passed away and Maisha no longer had a viable home. So, I was offered, and I gladly adopted her. And I'm trying my best to be a good Mom to her. 😊
Scott, best wishes to you.
Connect
Hi Scott, please share the release date. This book will be so helpful to others. Those in denial, those in need, those going through transition,, and caregivers of all! Thanks fir sharing.