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My Father and Congestive Heart Failure, Advanced stiff heart Login/Join 
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Picture of valkyrie1
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Testosterone injections has its own issues which should be researched before taking. Stiffness of the heart is directly related to the smoking and drinking. Throw in type 2 diabetes and you have major issues. Theres diabetes medication that can help the heart. All tough to deal with when you get older
 
Posts: 2372 | Location: Florida | Registered: March 01, 2012Reply With QuoteReport This Post
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Originally posted by valkyrie1:
Testosterone injections has its own issues which should be researched before taking. Stiffness of the heart is directly related to the smoking and drinking. Throw in type 2 diabetes and you have major issues. There's diabetes medication that can help the heart. All tough to deal with when you get older

Thank you,

He smoked 3 plus packs a day for 35 years and while he doesn't really drink now, he did pretty heavily for a long time. I`m amazed he`s still with us! He was diagnosed with type 2 diabetes at 57 and I feel like that disease is what has destroyed him.
 
Posts: 2133 | Location: Worcester County, MA  | Registered: December 05, 2004Reply With QuoteReport This Post
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Originally posted by RR:
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


RR- I received it and Thank you. Guys like you are what makes this place so special.
 
Posts: 2133 | Location: Worcester County, MA  | Registered: December 05, 2004Reply With QuoteReport This Post
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Originally posted by patw:
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.


I started talking to him about this, and he said he's made his peace with God- he`s catholic (was an Altar Boy) and because doesn't attend church now he asked me to have his service at my Church. He wants to be cremated and have his ashes spread at his CC in CT and in Ireland where his ancestry is.
 
Posts: 2133 | Location: Worcester County, MA  | Registered: December 05, 2004Reply With QuoteReport This Post
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Originally posted by RB211:
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.


I`m sorry to hear this, he`s tasked me with all his medical decisions and I`m truly dreading having to make this call if it comes to it. I pray he goes peacefully in his sleep but he's a fighter and I fear he will go "out" hard.
 
Posts: 2133 | Location: Worcester County, MA  | Registered: December 05, 2004Reply With QuoteReport This Post
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Originally posted by Aglifter:
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.”


Thank you,

The treatment was mentioned by the BI Heart Failure committee he's seeing. More to come as I learn how the process works, his initial reaction was he didn't want to take anything. He`s a fighter but he`s tired and the IBS-C is destroying his life when added to his other conditions.
 
Posts: 2133 | Location: Worcester County, MA  | Registered: December 05, 2004Reply With QuoteReport This Post
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Up until 2016 I was in what most would call perfect health, as in ran marathons, but then genetics and hereditary issues kicked in. I had an octuple bypass surgery for the "Sticky" cholesterol I inherited, an ablation in 2022 for AFIB, and then I was diagnosed with cardiac amyloidosis in November, 2023. Mine is considered the "Wild type", not the familial version. The cardiologist said 2-3 years would be the life expectation but with the new drug called Vyndamax patients had seen some pretty positive results. Vyndamax is the $280,000 a year drug mentioned in another post. My wife and I discussed and agreed at my age of 68 we would not drain our savings just to give me a few more years, but we have been fortunate and insurance plus a grant from Pfizer are currently covering the cost. I've been on it and Entresto for a little over a year and my EF (Effective Fraction, a measure of heart pumping efficiency) has actually improved. My cardiologist called me her guinea pig because I am one of the first patients of hers to observe with this treatment. If they can learn something from treating me that helps them down the line with other patients it's just an added bonus. I'm 69 now, I have a pretty good quality of life, don't run marathons any more but I split wood for an hour yesterday. I tire more quickly than I like to but can still keep up with the grandkids!

Sorry for the long post but thought my experience might help others in a similar situation make the tough decisions.
 
Posts: 43 | Location: Lake Cumberland, KY | Registered: January 09, 2003Reply With QuoteReport This Post
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Originally posted by mlee:
Up until 2016 I was in what most would call perfect health, as in ran marathons, but then genetics and hereditary issues kicked in. I had an octuple bypass surgery for the "Sticky" cholesterol I inherited, an ablation in 2022 for AFIB, and then I was diagnosed with cardiac amyloidosis in November, 2023. Mine is considered the "Wild type", not the familial version. The cardiologist said 2-3 years would be the life expectation but with the new drug called Vyndamax patients had seen some pretty positive results. Vyndamax is the $280,000 a year drug mentioned in another post. My wife and I discussed and agreed at my age of 68 we would not drain our savings just to give me a few more years, but we have been fortunate and insurance plus a grant from Pfizer are currently covering the cost. I've been on it and Entresto for a little over a year and my EF (Effective Fraction, a measure of heart pumping efficiency) has actually improved. My cardiologist called me her guinea pig because I am one of the first patients of hers to observe with this treatment. If they can learn something from treating me that helps them down the line with other patients it's just an added bonus. I'm 69 now, I have a pretty good quality of life, don't run marathons any more but I split wood for an hour yesterday. I tire more quickly than I like to but can still keep up with the grandkids!

Sorry for the long post but thought my experience might help others in a similar situation make the tough decisions.


Very helpful! He has 2 blood tests this week to type the Ameyloids and rule out Myeloma. Thank you
 
Posts: 2133 | Location: Worcester County, MA  | Registered: December 05, 2004Reply With QuoteReport This Post
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An update on dad,

This week he was in for another vascular surgery on his right leg, once in the surgeon found a large calcium mass blocking the artery from his heart down through his abdomen to his leg.
It took 3.5 hours to clear this, he was under heavy sedation and did ok. He had the blood tests for Myeloma and now we wait. I`m taking my daughter to see him today, he sounds bad, really out of breath and he sounds resigned to passing soon. This surgery wiped him out and he`s not getting any leg strength back.
I was added to his banking accounts, and he's giving me a checkbook today. He's also giving me the iPad he uses for his banking and financial transactions.

I hope I`m reading him wrong, my guts are telling me I`m not.

This message has been edited. Last edited by: liner,
 
Posts: 2133 | Location: Worcester County, MA  | Registered: December 05, 2004Reply With QuoteReport This Post
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That kind of surgery is a huge burden on the heart and other systems, like the kidneys.
Just continue to have serious discussions within the family and with the doctors working most closely with him, regarding the benefit vs burden of further invasive procedures.
You sound like you're dealing with this realistically and the family is working together. Be grateful your Dad is still with it to be able to make decisions together with the family.
God bless.


_________________________
“Remember, remember the fifth of November!"
 
Posts: 18712 | Location: One hop from Paradise | Registered: July 27, 2004Reply With QuoteReport This Post
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Originally posted by RR:
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


I received your package and can’t wait to share the hat, patch, and coin with Dad. I truly appreciate this thoughtful gesture— I know you took the time to find these items, and I can’t thank you enough. I’m going to frame the patch for him.

His Amyloid blood test came back, and it turns out Myeloma is not the cause. The doctors believe it originates from his liver. The BI Heart Failure cardiologist he’s working with is recommending a very expensive drug to help stop the new Amyloid formations. BI will collaborate with the drug maker to secure a grant to cover the high cost of $225k a year. He’s also started using oxygen, as his shortness of breath is becoming more bothersome without it.

I truly appreciate all your replies and personal anecdotes. I’ve always viewed my father as a larger-than-life figure, and it’s been incredibly difficult to watch him decline so steeply. At 6'4", he’s down to 155 lbs, and his overall demeanor seems to be focused on just making it through another day. It’s sobering, and it’s forced me to take a hard look at how I’m treating my own body at 59. I’ve never smoked, I work out, but I’ve been drinking more than I should. I’ve already started making changes to reduce my alcohol consumption, and I’m planning to see a cardiologist soon.

Thanks again for everything.

Mike
 
Posts: 2133 | Location: Worcester County, MA  | Registered: December 05, 2004Reply With QuoteReport This Post
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I have no real advice, just wanted you to know you're not alone. You just do the best you can. My dad will be 94 this month. He has CHF, dementia, and a list of other malidies and histories that leave a med list as long as your arm. He is getting a Thoracentesis this week to drain fluid so he can get his lungs to expand enough to breathe. It's a mess.

But with a lot of family effort (mostly by my brother, my wife and I), we have been able to keep him in his home so far.

Hang in there.




 
Posts: 11499 | Registered: August 02, 2004Reply With QuoteReport This Post
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Originally posted by r0gue:
I have no real advice, just wanted you to know you're not alone. You just do the best you can. My dad will be 94 this month. He has CHF, dementia, and a list of other malidies and histories that leave a med list as long as your arm. He is getting a Thoracentesis this week to drain fluid so he can get his lungs to expand enough to breathe. It's a mess.

But with a lot of family effort (mostly by my brother, my wife and I), we have been able to keep him in his home so far.

Hang in there.


Thank you, he wants to pass on in his house. My sister is deadset on getting them out of the house into an apt which he has asked me not to do.
 
Posts: 2133 | Location: Worcester County, MA  | Registered: December 05, 2004Reply With QuoteReport This Post
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They mostly all want to stay in their home,between my fnlaw,my dad who passed from dementia issues,my mother who is turning 90 who with my half paralyzed mother n law and a 90 year old friend we are helping were placed in memory care or assisted living. Comes a point that a normal home is not suited for the elderly,whether it's bathrooms,bedrooms whatever it's safer for them to be watched over. It sucks to do that to them. But in the end their last moments can be done via hospice service back in their own home if it hasn't been sold to pay for memory care or ASL....
 
Posts: 2372 | Location: Florida | Registered: March 01, 2012Reply With QuoteReport This Post
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