My 30 Year Old Husband Died Tga

My husband actually came on this web site not to long ago and responded to some of your stories... Made me cry to see them.

Jonathan Kanne, was born in 1981 with Transposition of the Great Vessels (Arteries). He had the Mustered procedure done (Fail) when he was a day or two old. My husband was in and out of hospitals, all through his child hood. But when Jon was in his teens and all through his 20's he was doing ok. My husband was a Firefighter/EMT for 10 years and a Sheriffs Deputy for 1. He never told anyone about his condition, it was only on a need to know basis. He also had 3 pacemakers in a span of 7 years, for accelerated junctional rhythm.

My husband was in great shape when I met him.. I met him at an MMA gym. When Jon told me about his condition, I was sad and confused. I was surprised that there wasn't a simple cure for this. And that he had to deal with it. Taking so many pills a day, the pacemaker, and feeling like "Ugh" most times. But my husband always had a smile and never let anyone see how bad he was truly hurting...

About 8 months ago, Jon and I went camping... When I was getting things situated, Jon walked to the truck to get some matches. A good 10 feet from me. Jon was holding on to the side of the truck breathing in so heavily like he just ran a marathon and sweating. That was the begging of it all. Jon was getting so tired so fast. Walking caused him to run out of breath. He was so tired all the time, and had bad anxiety attacks most every night. Jon would sit up in bed and say "I cant hardly breath.." When that happened, I rushed him to the ER.

Jon was diagnosed with Congestive Heart Failure. And his heart was enlarged (Bigger than a melon). From then on he was in and out of hospitals (And having in total 5 different surgeries, Cardiac caths, balloon pump..). Lasix did nothing, Jon's body got so used to his pills that the pills did nothing (Believe it or not your body can build an immunity to prescription pills). So we had to go to the ER and have them give him Lasix in IV form and another type of fast acting fluid capturing pill about 3 times a week, his lugs would fill up that easily. The doctor said that Jon's pills were no longer working, and Jon was on a no sodium diet, and yet he was still retaining over 900ml of fluid in his lungs. That meant that Jon's heart was just failing.

The only solution to Jon getting better was a heart transplant. My husband was #1 on the heart transplant list for a week and a half. He was a universal recipetent, AB+. But they needed a donor who wasn't donating their lungs as well. People with TGA need the pulmonary valves connected to the lungs. Its so hard finding that. Lungs and a heart intact. So the doctors ended up saying they just wanted the heart, they didn't want to wait any longer. Jon was on a balloon pump, he was bed ridden and was hooked up to so many IV's and machines.

The doctors had to switch out the balloon pump, they are only good for a week. They did the surgery on the 3rd of April. The surgery was a success, Jon's numbers went up and he was feeling "Better". The doctor kept bringing up the LVAD (Mechanical Assist Device). They do not make LVAD's for people with transposition. Nor had they attempted to do this surgery on a person with TGA. The risks out weigh the benefits when it comes to an LVAD. Its a whole open heart surgery, plus they take you off the transplant list for at least 6 months to heal. That is of course, if you survive. Septic, blood clots, stroke, and trauma are the higher ricks for that stupid machine.

One doctor was pushing the idea, the rest of the transplant team were against it.

Jon went to sleep that night and never woke up. He had a stroke. In the end it wasn't his heart that killed him but his brain. Jonathan's heart was so use to pushing and Go, Go, Go! That he hung on for 7 hours. The doctors said he was brain dead and that he was never coming back. They took him off all machines and turned his pacemaker off. I held him in my arms for 7 hours and watched the love of my life pass away.

Its been 40 days and I still cant believe this... I miss him so much.
Jonathan was an organ donor and 4 people benefited from him. The doctor's at OHSU up in Portland Oregon are now monitoring the brain as well, for patients with TGA. No one saw this coming. He was doing so well, his numbers were up he was on less medicines. And in the end it wasnt even his heart that killed him.

hollyhud hollyhud
22-25, F
1 Response May 14, 2012

I'm sorry for your loss.