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Hypoplastic left heart
I'm a 34 year old female who was diagnosed with HPLH at birth I have had 2 open heart surgery and lots of stents and much more done over the years I'm now at the point of stiff heart and need a heart transplant that's my only opinion. What can I do if I decide not to go through the process
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If you wouldn't mind a question first, what do YOU understand of your options and likely outcomes, treated or not?
Myright side of heart is working twice as hard to take care of my left side of my heart I was given the opportunity to get a transplant as a baby and my parents didn't wanna wait for a baby to buy I completely get it and not mad at them for it.now it's more medicine such as pain meds to. Control the pain the heart transplant is the last step before death
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1 Reactionhttps://www.cdc.gov/heart-defects/about/hypoplastic-left-heart-syndrome.html
You probably are already quite well up on all of this, especially if you have lived with this for decades now. This is outside my own experience and learning, but it sounds like antidiuretics, strict dietary regimen, and perhaps surgery are the only treatments, with the latter to be done as early in life as possible. You are now left with little options except for a heart transplant.
That choice is obviously entirely yours, with anything else to be negotiated with a specialist willing to do what he/she can. I believe you mentioned pain, which can be controlled via pain meds, but I'm sure that's just out of palliation. I wish I had some experience or wisdom to share. I do hope someone sees this who does have what you need and pipes up.
Good luck to you!!