Connect
← Return to Organ Donation and Transplant: What is Your story?
Discussion
Organ Donation and Transplant: What is Your story?
Transplants | Last Active: 5 days ago | Replies (94)Comment receiving replies
@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.
Replies to "@scottij That's a very compelling opening of your story. I am the daughter of a heart..."
Connect
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!