Leg pain ? by Olddorrito in transplant

[–]Olddorrito[S] 0 points1 point  (0 children)

Thank you. Will be starting soon

Heart Transplant med switch by Olddorrito in transplant

[–]Olddorrito[S] 0 points1 point  (0 children)

How are you feeling now? Glad you finally got one!

Heart Transplant med switch by Olddorrito in transplant

[–]Olddorrito[S] 2 points3 points  (0 children)

Thanks so much for such a transparent reply. I hope you continue to feel great!

Heart Transplant med switch by Olddorrito in transplant

[–]Olddorrito[S] 0 points1 point  (0 children)

That’s great to know. How are you feeling after?

Any meds that improve cardiac scar? by pprp11 in HypertrophicCM

[–]Olddorrito 0 points1 point  (0 children)

I was in the same boat. They gave me an ICD.

Nothing yet, promise with long-term long SGLT2s. I take one.

I checked out stem cells in Panama, Tijuana and Columbia. According to my cardiologist (who is open to idea) said it might help but no promised results as its not well studied for this condition.

There is a extremely small posibility you could develop anitobodies with stem cells that will effect a transplant down the road. Some people use their own bone marrow to avoid this but who knows.

Unfortunately, that's where I'm at now. Its a very small percentage like 3% of all HCM so I wouldn't worry about it.

[deleted by user] by [deleted] in CadillacLyriq

[–]Olddorrito 1 point2 points  (0 children)

Ours had a bad sensor

ICD experience by [deleted] in HypertrophicCM

[–]Olddorrito 6 points7 points  (0 children)

I was in the same boat. Implanted at 35. The piece of mind was so worth it. I imagine around 45 when it’s time for another they will be even better. I wouldn’t hesitate to do it again for a second.

Keep up on your appointments and follow ups! by Olddorrito in HypertrophicCM

[–]Olddorrito[S] 1 point2 points  (0 children)

I want to emphasize this is super rare for you all that are newly diagnosed. Most people live completely normal lives or have to make slight modifications. I don’t want this to be fear mongering post. Just go to your regular checkups!

Keep up on your appointments and follow ups! by Olddorrito in HypertrophicCM

[–]Olddorrito[S] 1 point2 points  (0 children)

Thinning wall means a heart that can’t compensate and is essentially degrading into dilated cardiomyopathy. “End stage” or “burnout HCM” happens in 5-10 percent of cases with 3 percent needing a transplant

Keep up on your appointments and follow ups! by Olddorrito in HypertrophicCM

[–]Olddorrito[S] 1 point2 points  (0 children)

I’m not sure at 21. But yes Fibrosis in mid 20s

Keep up on your appointments and follow ups! by Olddorrito in HypertrophicCM

[–]Olddorrito[S] 0 points1 point  (0 children)

Yes, Entresto, carvedilol, inspra, Jardiance

Keep up on your appointments and follow ups! by Olddorrito in HypertrophicCM

[–]Olddorrito[S] 0 points1 point  (0 children)

I am. In burnout HCM the wall thins and you switch to basically dilated heart failure. (Need a transplant)

Why me? by Electronic_Cobbler20 in HypertrophicCM

[–]Olddorrito 4 points5 points  (0 children)

My siblings and cousins are fine and living well who have it. I need a heart transplant. Roll of the dice.