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Scriffignano119 karma

I would be more than happy to share my story with any and all who want to hear it.

I was born with a congential heart defect were i only had 3/4 chambers of the heart. At 8 weeks old i turned blue and was projectile vomitting. It took 3 open heart surguries and a pacemaker to get me well again. I had 4 more pacemakers until I was 14 and my body always ran super cold. Sitting a pool would turn my lips blue, I couldnt keep up with other kids, and I had less of an immune system. The thing was despite all these things. My parents never held me back from enjoying life. I was told to enjoy life to the fullest and that my condition was no reason to shelter me.

Shortly before I turned 14 though... things started to go south fast. My stomach started to swell with fluids and my heart was failing fast. It was growing in size and crushing my organs and killing my appetite. I was literally dying from the inside out. My spirit or will to live never faltered though. I wanted to live to the fullest of my ability.

When I was told I was getting a new heart... I was really scared at first... cried in the bathroom for hours because it was very scary. As time passed though I accepted that this was needed. Once I found out what would happen to me once I was post transplant though... I was excited at the possiblity to be normal. I actually couldn't wait and counted the days.

I was put on the list January 31st 2007 and got the call for the transplant 5 days later. The procedure took 12 hours and it was rough. I got the flu from my donor and I was in a coma for 10 day due to internal bleeding. When I finally came to... i was a literal zombie. Several days later I was able to function well enough and they removed the tube so I could talk (No food yet). The next day I was able to eat but my joy was short lived. My left lung collapsed and I was put back into surgery. I was in a coma for another 2 days and had to restart the process all over again.

When I was finally able to leave the hospital I was transferred to a step down house to recover. A week later I was able to go home for the first time in a literal month and a half. I was only able to stay for a weekend though. I was rehospitalized again due to rejection of the heart by my body and it took a week to get that back under control. This in and out of the hospital would continue until May of 2007. I was able to go back to school my final week of 8th grade, but it was only half day. I looked alot different due to my medication. I had an extremely chubby baby face due to a steroid I had to take to combat rejection. My friends did not recognize me at first. lol.

Now... I go for a short check up every 6 months, have blood work every 4 months, and have no restrictions except for two dietary restrictions. No raw meat like sushi and no grapefruit or anything with grapefruit in it.

Tell your boy to hang in there. There is hope for the future. Look for a support group for him. There are lots of transplant support groups all over the world. The help you need or want is there with people who understand your plight. Give him a hug and be there for him.

Scriffignano74 karma

  1. No. it feels like part of my body physically and mentally. My immune system doesnt recognize my new heart though so... Im on immune suppression medication.

  2. I gained a few quirks like a sweet tooth that I never had before.

  3. I try my best to live to the fullest every day. For example... I love horse back riding and go out riding every friday for a few hours every time.

  4. Its... something that sits in the back of my mind all the time. My line of thinking is that I now have to live life for two people, myself and my donor. I was born with my health problems so... I cope better than someone who got slapped with this burden mid life but sometimes it can be hard to deal with. When people claim I am handicapped, I remind them that I am not because the only restricitions I have are medication and I can't eat raw sushi or grapefruit. Otherwise my lifestyle is no different than anyone else and if you saw me in a crowd... you would never know I had any issues. However... I have a motto I live by and its a direct quote from the first Pokemon movie of all things.

"The circumstances of one's birth is irrrelevant, its what you do with the gift of life that determines who you are." ~ Mewtwo.

Scriffignano55 karma

I tried to reach out to the donor family, but got no response. That was the hardest letter I ever wrote. Tears the entire time.

Scriffignano36 karma

Hmmm... I guess the most underrated thing I don't talk about was the initial change after transplant. Before... my body always ran cool and slow. 100 beats a minute at max after running, Temperature was a few degrees colder, Couldn't be in a pool or bath for that matteer for more than 10 minutes without my lips turning blue. My skin was super pale all the time.

Right after the tranplant however... the nurses had to keep my room at 50 degrees farenheit and no blankets what so ever because I felt so hot. My poor mother suffered for weeks until I became more acclimated to how the human body was supposed to feel. She had to wear a heavy winter coat in the room at all times. My skin turned flush red because the blood flow doubled. My heart felt like a powerful freight train. Honestly I would compare my transplant to an Anime protagonist style transformation. It was exhilarating. I never felt so happy in all my life.

Scriffignano30 karma

Yes I do. It goes from the base of my neck down to my belly button and T's off at the bottom.