That's great news, Sammy! Keep on doing whatever you're doing!

Great news indeed. Not just stabilized but improved.
Sounds like you're out of the crisis phase of the illness.
Keep doing what you're doing Sam

Awesome to hear your improving !!!

That's awesome !!

So this is probably of now interest to you, but my other half was diagnosed with very similar results, 15% heart use... and after losing 120 lbs his doctor just told him that his heart is operating at around 34% capacity.

So there is light at the end of the tunnel. They will tell you that your heart is not an organ that can improve with time and changes, but they are wrong. They are doctors... they always have to give you the worst case scenario.

I know you can get thru this! Besides, you have to. Your posts are a good part of the reason I became addicted to this website and UER in the first place.

Good luck

Posted by tax_mouse So this is probably of now interest to you, but my other half was diagnosed with very similar results, 15% heart use... and after losing 120 lbs his doctor just told him that his heart is operating at around 34% capacity. So there is light at the end of the tunnel. They will tell you that your heart is not an organ that can improve with time and changes, but they are wrong. They are doctors... they always have to give you the worst case scenario. I know you can get thru this! Besides, you have to. Your posts are a good part of the reason I became addicted to this website and UER in the first place. Good luck

thanks for that, but my heart has gone too far for that... the only they are trying to do is make things more comfortable and try to give me more time. I met with a pulmonary specialist today. This is address the apnea that I have had since forever ago. I have a sleep study in July.

Posted by Samurai thanks for that, but my heart has gone too far for that... the only they are trying to do is make things more comfortable and try to give me more time. I met with a pulmonary specialist today. This is address the apnea that I have had since forever ago. I have a sleep study in July.

Stop that, you
Drop the weight even if it's not comfortable
Why are they taking so long with the sleep study?
You need to stop the sleep apnea ASAP if changing your sleeping position isn't doing it!!!

The heart can heal given the chance and proper conditions.
Either way, prime yourself for survival...
Jeep Dave's whole world revolves around you

It really doesn't sound much different than my other half's situation...

I contacted family at least twice as they rushed him to the hospital in an ambulance. Listened to the doctors say "it's time to make arrangements if you haven't already".

The realization finally hit him when the doctor walked into his room one day and said "Mr. Mouse (anonymity in place, lol) Do you wish to die here in the hospital, or would you rather die at home. Those are your only two choices" He said "Doc, you must be talking to somebody else!" That was the day that changed his life.

Dropping the weight was not easy, it took him a little over a year to do it and he said it was one of the hardest things he has ever done, but well worth it!

If he can do it.... So can you!

Never give up Sam !!!

Doctors have and are proven wrong many times over !!!

Posted by blackhawk Stop that, you Drop the weight even if it's not comfortable Why are they taking so long with the sleep study? You need to stop the sleep apnea ASAP if changing your sleeping position isn't doing it!!! The heart can heal given the chance and proper conditions. Either way, prime yourself for survival... Jeep Dave's whole world revolves around you

120lbs? I have a better chance of getting picked up by a UFO.
As for the sleep study, there is a long line of people ahead of me. I am on the on-call list for cancellations. That's how serious my thing is. As for the heart healing, dilated myopathy doesn't heal. Your heart just gets worse and worse as time goes on. Dropping weight will make me more comfortable, but the heart is still going to go kaput. I have no illusions about the time I have left and have, to a certain extent, made peace with that. That's not giving up, that's just being rational.

one of the pains in the ass about all this is dealing with the insurance companies and the fact that there are some drugs they won't pay for. I was proscribe "Entresto" back in January. Had enough to go until april and then ran out. Insurance company won't pay for it and it's really expensive. And of course, it works. (eyeroll)

it's the other horseshit that drives you nuts... insurance companies, paying bills. When you go from making $2k a month to less than $600 a month, the stress level goes batshit.

Posted by Samurai 120lbs? I have a better chance of getting picked up by a UFO. As for the sleep study, there is a long line of people ahead of me. I am on the on-call list for cancellations. That's how serious my thing is. As for the heart healing, dilated myopathy doesn't heal. Your heart just gets worse and worse as time goes on. Dropping weight will make me more comfortable, but the heart is still going to go kaput. I have no illusions about the time I have left and have, to a certain extent, made peace with that. That's not giving up, that's just being rational. one of the pains in the ass about all this is dealing with the insurance companies and the fact that there are some drugs they won't pay for. I was proscribe "Entresto" back in January. Had enough to go until april and then ran out. Insurance company won't pay for it and it's really expensive. And of course, it works. (eyeroll) it's the other horseshit that drives you nuts... insurance companies, paying bills. When you go from making $2k a month to less than $600 a month, the stress level goes batshit.

The outcome is not cut and dry. How fast and drastically you alter your lifestyle will effect the outcome. Get on SS disability now for its medical insurance and prescription coverage.
Get sodium and fluids under control.
Drop the weight, it may take 2 years... do it.
Exercise.

https://www.entres...tion-copay-savings
http://www.heart.o...le.jsp#mainContent

Using generic substitutes may work too.
https://en.m.wikip...lsartan/sacubitril
Similar class generic drugs without sacubitril, such as valsartan alone, cost approximately $48 a year.[7]

Your doctor needs to work with you for putting together generic drug combos if possible for Entresto!

Posted by blackhawk Using generic substitutes may work too. https://en.m.wikip...lsartan/sacubitril Similar class generic drugs without sacubitril, such as valsartan alone, cost approximately $48 a year.[7] Your doctor needs to work with you for putting together generic drug combos if possible for Entresto!

for some reason, they don't return my calls... lol

Posted by Samurai for some reason, they don't return my calls... lol

Talk to the doctor than. Hammer em.
Some GPs are very knowledgeable as well.

ok... spent the first half of the day on the phone. First call was to the people that manage my 401k. Got that hardship ball rolling again, just waiting on two different sets of paperwork to get here. Next I got my bank on the phone so they could call the people I have my temp disability insurance through on my pickup. There was a snafu with the forms and they were late. Lady at the credit union fixed it like a boss and even refunded the money I had paid for the payment last week. Sweet. And then finally, jumped in the car and headed to my doctors office (2 hour drive) to drop off the long-term disability papers to be sent back to the people that manage that.

it's amazing the amount of forms you have to deal with... (!!!!!)

I hope you're feeling better Sam. I've never met you, but we've talked a few times, and I've always admired your gruff teddy bear persona. Sending you Love and warm feelings....... Hetero Love, don't get your hopes up!!!

Hetero? spellin' 'aint ma' strong point....

Posted by cr400 I hope you're feeling better Sam. I've never met you, but we've talked a few times, and I've always admired your gruff teddy bear persona. Sending you Love and warm feelings....... Hetero Love, don't get your hopes up!!! Hetero? spellin' 'aint ma' strong point....

Thanks.

Hope you get some good news, and there are always advances in medicine popping up. You never know what the future holds.

Keep your head up, you've got this.

Just a bit of an update... completed the long-term disability paperwork and handed it off to my doctor as well as completed the paperwork for cleaning out my 401k and filing for Social Security Disability. yay.

Problem I am having now if the paperwork is taking forever to get done and my funds are dwindling... but what can you do. Hopefully, by the end of July I will at least have my 401k money and disability until the SSD kicks in.

I feel like shit to be honest, tired all the fucking time. Can't get out of my own way. Still don't have the medication I need. The doctors are promising they can get it, but I still ain't seen it. I now, stop whining. Ok, i'll stop whining.

Other than I am still here and still pissing people off.

Sam you can whine all you want, this year hasnt been the easiest for me either, but hey, your still here, thats what counts buddy.

I am still here and still pissing people off.

Attaboy!