21 year old Transpostion of Great Valves patient needs help
Our son is 21 years old. He's a Transposition of the Great Valve patient who had the old "Mustard Surgery" at Children's Hospital in Detroit. When he was 13 years old he had a pace-maker put in due to scar tissue interferring with the electrical pathways. At that same time, it was discovered that his "Sinus Node Vein" (where the lead wire to the pacer was to go through) was "extremely" narrow. He had been living for 13 years with very little blood flow through that vein, which is the "main vein" to the heart .... So, instead of putting in the pace-maker that day, they put in a stent. Six weeks later, they put in the pace-maker and ran the lead-wire through it. He was only the 5th patient that had the lead wire run through a stent in the sinus node vein (at the time), there at Children's Hospital in Detroit...We were told that if the lead wire leaned into the wall of the stent, it would collect calcium deposits, etc. and there would be nothing further that could be done. The last time it was checked through heart cath., (approximately 2 1/2 years ago or so), it was still floating in the middle of the stent without touching the sides of it. We are very thankful for that.
Our son's pace-maker has nearly run out now, and will have to be replaced very soon. Here's the problem:
He was under "our" insurance, because he was in college. He decided to drop out of college, which then took him off our insurance. He's been unable thus far to get a job and his health is not good. He hasn't been to the Cardiologist like he was supposed to do for quite some time now, because of lack of money and no insurance. He is supposed to be going to his cardiologist every 6 months. He's been unable to do his pace-maker checks, because he has no money to pay the bill. He's getting very concerned, as are we, his parents. Does anyone out there know of anyplace or anyone who could help a patient out in his situation so that he can get his health and physical needs taken care of?...... I'm also wondering if there's anyone else out there who has a child with the same problem of the narrowed "Sinus-node vein" who didn't have it discovered until they had lived for years without it being stretched by a stent. If there is, we are wondering if you have noticed any affect on their behaviors, reasoning, life-skills, etc.
We'd appreciate any help that is available out there, as would he. He doesn't want his name posted out there for the world to see right now, but has asked us to help him in his search. He's afraid his time is running out. He's getting scared, and doesn't know what to do about his situation. We can't help him financially, so we need to find another way in which he can attain some kind of "real" help....