TexasCHLforum.com

Been a while since I updated on my now 19 yo son Joe. Last April, he had a viral infection of the heart that destroyed the lower 2 chambers of his heart, the third was inactive, leaving the 1st chamber enlarged to do all the work.

Two days before Christmas, Drs called and told him "early Christmas present." That he was to turn off his portable IV pump he had been wearing since he got out of ICU, 8 mo prior. A month later, he felt no worse, so the port was removed from his chest. He was told they saw no reason he couldn't go back to college (Tarelton) as long as he continued his regimine of cardio-rehab and low sodium diet, plenty of rest. He got an apt so he could do all of that and not have to pay for cafeteria food which he would be forced to do in a dorm.

The echocardiograms still show an EF (ejection fraction...percent of blood pumped by each heartbeat) of 8-12%. So while poor, is no worse. His defribulator has gone off twice, but each time the readout showed he was ok, just had gotten his heart racing and it had to come down.

They have said at some point... 6 mo, 6 yrs, etc. His heart will wear out. A cold, a flu, just fatigue. And then they will know they have to do the LVAD (implanted heart pump) which they were preping him to do at the hospital, until they said they wanted to try without it.

So, everything is status quo. It is a day-at-a-time, but aren't we all?

Thanks for all the well wishes
Wayne

wgoforth wrote:So, everything is status quo. It is a day-at-a-time, but aren't we all?

Thanks for all the well wishes Wayne

Wayne - Your story breaks my heart. Continued wishes and prayers for your son.

WildBill wrote:

wgoforth wrote:So, everything is status quo. It is a day-at-a-time, but aren't we all?

Thanks for all the well wishes Wayne

Wayne - Your story breaks my heart. Continued wishes and prayers for your son.

Thanks Bill. We are simply happy to have more time with him. In April, I was preparing the family for his emminent death. I do have to say that the hardest thing I ever had to do was, once he was brought out of the sedation/intubation, having to tell him what they had found in the 2 days they had him out. They didn't know what all was up when they put him out.

Appreciate the CHL friends here.

Great thoughts out to your son.

Go Texans! (Tarleton Class of '88 & '89)

We will continue praying. We lived six or seven years with the day-to-day issue with the heart. We understand what you are dealing with.

After 10 years of living on the edge following a major stroke, my dad passed almost a year ago (Saturday). It was 10 years of last days. It's amazing both what a trial and what a gift that was at the same time.

Prayers for strength, peace and continued good news for you and yours.

Wayne, I forget... was there a reason why your son is not a candidate for a transplant? I apologize if you've already told us. Chalk it up to loss of brain cells on my part...

The Annoyed Man wrote:Wayne, I forget... was there a reason why your son is not a candidate for a transplant? I apologize if you've already told us. Chalk it up to loss of brain cells on my part...

Oh hey bro, understand. At first they were looking toward transplant. But the avg lifespan with transplant is 12 years. They said that due to his young age, that would still leave him with such a shortened lifespan; And that also due to his age, his immune system would be strong enough to try to reject it. They had planned to do the heart pump (LVAD) and had prepared us by showing how to function with this (open heart surgery, bypassimg the heart with a pump that pumps the blood). Our own forum member Treggs was planning on being there (great family). It was to happen on a Mon. Fri afternoon the heart team came in and said they just don't see people this young to know what a young heart is capable of recovery wise. So they opted to implant a difribulator, the IV pump for a heart stimulant medications, and half a dozen prescriptions. They said this way, if he ends up having to have the transplant/LVAD, at least they will KNOW he had to. And that is ok, gives time to perfect technology more.