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| Don't burn the day away |
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. | |||
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| Don't burn the day away |
RR- I received it and Thank you. Guys like you are what makes this place so special. | |||
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| Don't burn the day away |
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. | |||
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| Don't burn the day away |
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. | |||
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| Don't burn the day away |
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. | |||
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| Member |
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. | |||
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| Don't burn the day away |
Very helpful! He has 2 blood tests this week to type the Ameyloids and rule out Myeloma. Thank you | |||
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| Don't burn the day away |
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, | |||
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goodheart |
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!" | |||
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| Don't burn the day away |
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 | |||
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Seeker of Clarity |
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.  | |||
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| Don't burn the day away |
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. | |||
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Member |
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.... | |||
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| Don't burn the day away |
Little update, Dad spent 6 days in the hospital and came home Tuesday this week. His right leg had massive swelling and he was extremely short of breath with pneumonia. His kidney function was also very bad. He was discharged Tuesday. Wednesday afternoon after spending 2 hours on the toilet he passed out and fell into the shower and smashed up his face and left hand pretty badly. I met him at the Er and he was admitted again. I stayed with Mom who just finished her Chemo for the eye cancer, she has Covid and The Type A flu. She’s down for the count. Dad was released at 4 yesterday and he has the same flu.He slept with O2 and I’m waiting go for the VNA to visit today. He told he’s working on the grant for the Amyloid drug, his heart failure cardiologist is concerned without it he’s a “short timer”. They both agreed it’s time to sell the house and go to an assisted living place near me. I’m pretty stressed but encouraged by their agreement to move. RR- Dad was touched by the package you sent me, he got very emotional and I can’t thank you enough. MikeThis message has been edited. Last edited by: liner, | |||
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| Just because you can, doesn't mean you should |
Have you spoken with anyone in a Hospice type organization? They can make the end weeks or years much better and make things much better for everyone. They can do this at home or in other facilities if that ends up being the case. I went through this with both parents. ___________________________ Avoid buying ChiCom/CCP products whenever possible. | |||
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| Don't burn the day away |
Not yet, VNA just left and she did an assessment, he’s completely deconditioned. He’s 100% on O2 and admitted to me he wanted to home for the SB. The hospital didn’t have the channel for the game. He’s watched every SB and this one is his last. He said he’ll go back in this week. I need to leave today for a work trip and my sister is on her way from CT but this isn’t going to work. I asked him to consider a live in aid but he says he can’t trust them. He has a deep low cough which is from the blood backing up into his lungs per his cardiologist. Thank you for the advice 220-9er. | |||
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Member |
Liner, Glad to hear your dad enjoyed the gifts! Sorry to hear he’s going through so much and your mom as well. They are lucky to have you and your sister looking after them. I did crack up a bit when you mentioned your dad being concerned about the SB. I hope he’s enjoying it! | |||
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