My father is 82, type 2 diabetic and is in Congestive heart failure.
He fell twice last week, basically passed out when standing up, the 1st was at 3 am trying to sit on a toilet and he ended up with severe bruising on his back and buttocks.
The next morning he fell after getting out out bed and fractured his C4 and suffered massive bruising on his entire left side.

He ends up in the hospital and has the diagnosis of Advanced Stiff heart added to his growing list of illness. He’s also stage 3 kidney failure. His Cardiologist took him off of Entresto and told us this syndrome is rare and that it doesn’t have many treatment options. This new Cardiologist has entered him into the Beth Israel Heart Failure program.

I’m looking for any feedback this membership can provide, I feel like we’ll lose him inside of a year, he’s miserable, weak and 6-4 down to 165lbs from 235.

He’s retired NYSP and NYPD and had a 2nd career as a Financial Planner.
He smoked 3 packs a day for 35 years and drank heavily during those years as well. He had his 1st heart attack at 46 and had Quad bypass at 56.Since the bypass he’s had multiple stents and has almost lost his left leg due to blockages and had multiple vascular surgeries on the leg. I know he’s a mess but he’s fighting and I want to help him.

Thank you

My heart goes out to you. I’m watching my father decline daily, and it’s tearing me up, even though I know it happens to us all- if we are lucky to live to such a great age.

There is a resident cardio guy here, and he might chime in, but if you haven’t got home help, it might be time to look into that- even if it’s just a few days a week..life alert or Apple Watch might be useful for future falls as well. I’m currently debating with my parents to get these devices. The other thing I have done is put cameras in both of their homes inside and out, and I check in by phone daily- if I don’t get a call back within a certain amount of time, I start checking cameras.. they currently have the cameras indoor video shut off to respect their privacy, but it gives me peace of mind to see my dad out filling the bird feeders at 6 AM.
I hope this helps in some way. Understand you are not alone.

quote:

Originally posted by irreverent:
My heart goes out to you. I’m watching my father decline daily, and it’s tearing me up, even though I know it happens to us all- if we are lucky to live to such a great age.

There is a resident cardio guy here, and he might chime in, but if you haven’t got home help, it might be time to look into that- even if it’s just a few days a week..life alert or Apple Watch might be useful for future falls as well. I’m currently debating with my parents to get these devices. The other thing I have done is put cameras in both of their homes inside and out and I check in daily if I don’t get a call back within a certain amount of time, I start checking cameras.. they currently have the cameras indoor video shut off to respect their privacy, but it gives me peace of mind to see my dad out checking the feeders at 6 AM.
I hope this helps in some way. Understand you are not alone.

Thank you,

I did get him an Apple Watch and setup the fall option. My mother can’t drive and they live 80 minutes from us. They wouldn’t move and live in a house, regular non 55 plus neighborhood. They do have a 1st floor master but he’s been sleeping upstairs which has ended.
I mentioned cameras and got a very negative reaction, I honestly think they both are in denial.

Dr. Stephen Sinatra tells of the four supplements you need to take for congested heart failure.

I did not watch the video, but I would expect that Natto-Kinase would be high on the list. It is proven to dissolve plaque build up over time. Takes months, and has to be taken away from food several times a day.

Smoking irritates the lining of arteries, and that starts the plaque problem. The two main problems are low blood flow the the cardiac arteries and high resistance in the arteries of the body. The bypass surgery probably tremendously helped the first problem. According to the natto kinase organization, 3/4 of the product comes from China and has no therapeutic value. I know that the Designs From Health version works well, Natto- Serrazime.

I'm your friendly SigForum cardiologist--but retired for almost 10 years now.
Stiff heart or restrictive cardiomyopathy is very unusual; the most common cause is amyloidosis IIRC, and treatment is much more difficult than for dilated cardiomyopathy. Diagnosis is made by echocardiogram.
It sounds like the new cardiologist is doing the right thing, I would follow his recommendations.

Heart transplants work for this condition. A local man received a donor heart for this condition five years ago and is doing well. I do not know how many comorbid condtions he has, but was in his late 60s. Agree with above statement.

I'm very sorry. My dad passed away due to congestive heart failure, at a more advanced age than your dad. He had a very healthy lifestyle but the heart issues were genetic. He had been in great physical condition until near the end, when he declined precipitously.

Thank you for your responses,

The Cardiologist told us this condition was rare, he's also not a candidate for a heart pump or replacement. He also has Peripheral artery disease in his legs and is/was on blood thinners.

He`s uncomfortable and having the neck brace for his fractured C4 is adding to his misery.

He`s transferred all but 1 of his guns to me and given me power of attorney so I feel like he knows what's coming.
Before this diagnosis he was given 1 to 1.5 years to live-this was in May. It sounds like the stiff heart may shorten that, he asked the new Cardiologist and he said it wouldn't be fair to speculate at this point. The type 2 diabetes is really making his life difficult despite aggressively trying to manage it, throw in IBS-C as well. That I wouldn't wish on my worst enemy.

I appreciate the comments.

LIner

I broke my neck (fractured C1 and crushed C2, I know, I know very lucky) and tried a few different neck braces. I never found one that is comfortable. I'm not sure how long ago this happened but at some point he will rid himself of the ones needed after the surgery and move on to a "collar". At that point his life will improve. Wishing the best for your dad Liner.

I can't add anything relevant except to offer our prayers for your father, you and all concerned in his health care.

Liner, my thoughts are with you and your father.

In March, I had to make the worst decision of my life, taking my mother off of life support for nearly the same things - congestive heart failure, kidney and liver failure, pulmonary edema, along with T2 Diabetes and after effects of having Covid. She fought as hard as she could for almost 2 years, but in the end, her body just couldn't take any more.

Both my sister and I knew what the eventual outcome would be, especially after seeing Covid totally demolishing her in 2022. I guess that is the only thing I can say somewhat prepared me for her passing in March, though, it didn't make it any easier.

I just got back 2 weeks ago going through your neck of the woods to spread her ashes in different places in Stockbridge, MA.

I sincerely hope the Doc is able to find a way to give him more time without him suffering.

Sorry to hear about your dad. The Beth Israel program could be a good move, they might have some new options. It’s worth looking into palliative care for better comfort and quality of life.

I’m really sorry to hear about your dad’s situation—it sounds incredibly tough. The Beth Israel Heart Failure program is well-regarded, and it’s good that he’s been entered into it. They should have the expertise to provide the best possible care and possibly offer new treatment options or clinical trials.

Given his history, it’s essential to keep him comfortable and manage his symptoms as best as possible. I’d recommend asking his healthcare team about any palliative care options to improve his quality of life. Support groups for families dealing with similar issues might also offer some comfort and practical advice. Hang in there and take care of yourself too—supporting a loved one through this is emotionally draining.

quote:

Originally posted by sjtill:
I'm your friendly SigForum cardiologist--but retired for almost 10 years now.
Stiff heart or restrictive cardiomyopathy is very unusual; the most common cause is amyloidosis IIRC, and treatment is much more difficult than for dilated cardiomyopathy. Diagnosis is made by echocardiogram.
It sounds like the new cardiologist is doing the right thing, I would follow his recommendations.

Beth Israel confirmed he has Amyloids in his heart, and he was accepted into the BI Heart Failure group. There is talk of a costly drug but he would need a grant-$200k plus annually. The IBS-C is ruining whats left of life. He`s struggling to manage it.

Liner, I'm very sorry to hear this; as I said and you quoted, restrictive cardiomyopathy from amyloidosis is much harder to treat. I know nothing of newer experimental drug treatments.
But your dad is in the best of hands as far as cardiology practice is concerned. God bless.

quote:

Originally posted by sjtill:
Liner, I'm very sorry to hear this; as I said and you quoted, restrictive cardiomyopathy from amyloidosis is much harder to treat. I know nothing of newer experimental drug treatments.
But your dad is in the best of hands as far as cardiology practice is concerned. God bless.

His Cardiologist mentioned a new drug that costs upwards of $220k annually that can stop new Amyloids from developing. My parents don`t have that and his NYC SBA union coverage won`t cover so he has to try and get a grant. I`ll get the name and post it. Thank you

Very sad to hear this. While this may seem a different approach, might I add taking him to a good baptist or non-denominational church. I say this with love as eternity/salvation is a very important thing to consider. We are never too old or too young to talk about it and I have had many conversations/bible studies with family members. I have conversed with some patients who start the conversation about God/Jesus/salvation and their worries. As I get older and have increasing medical issues as well, I need something stronger in this world to keep me going and "with God, all things are possible", Matthew 19:26. I will pray for him and you.

LIner,

Sorry to hear of your dad’s health struggles. It sounds like he’s lucky to have you checking on him. I sent you an email.

RR

Texas Heart/ Mayo etc may have more options.

Testosterone can do a lot for diabetes, but PAD is tough.

There was a group out of Boston with some good research on it, but they had management problems.

Mayo was looking into their research as well, when my father passed about 7 years ago.

I don’t know what the financial situation is, but be wary of people showing up looking for investment in cures. There are people who look for families who are suffering from diseases, auto get “funding.”