HF and amputee - anyone else here?

[Decepticon]

Hi I am caring for my husband, he is amazing and survived so much. Diagnosed with HF in November with EF of 15, on Entresto and now up to 45! Just had leg amputated 2 weeks ago and now home. I am struggling with the day to day stuff and wondered if anyone in this group is in a similar position and would like to share ideas and support. He also had a heart attack in December and is Schizophrenic but that is asking too much for people to be in same situation lol. I am more thinking hospital beds etc

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Sorry - can't help but wanted to express support. That is a hell of a lot you are both going through. Good luck.

[MichaelJH Heart Star]

Hello and welcome to the forum!

I am uncertain but I may be the only amputee with heart issues on the forum. In 2018 I had a quadruple bypass (very much heredity as my father, his brother and their father had all died prematurely from CVD related heart attacks) and last year I had a BKA (below knee amputation) to the left.

First off I am very happy to read your partner has you to support him. Whilst I had that type of support post bypass it was purely "family and friends"!

May I ask the cause of the amputation? The most common are diabetes and smoking although infection is sometimes a cause (I met someone who got an infection resulting in the loss of his lower leg).

As regards hospital beds and other aids has your partner had a proper OT (occupational therapist) assessment? They should be able to arrange the loan of a hospital bed which I think is useful for the initial months. Also essential are extremely secure grab rails for the toilet. With a riser seat in a frame I had the frame move resulting in a fall and a number of cracked ribs! Initially I used a "banana" board for transfers but now generally rely on arm strength and my remaining leg.

Much depends how strong his upper body, core and remaining leg are. I was extremely weak as I has a massive infection pre/post infection and subsequently told I was 48 hours from sepsis at the time of amputation. During that period I lost 15kg in addition to the leg.

I don't know what physio he has been offered as it has become more erratic (in my area) since the beginning of the November lockdown. As much as possible the perscribed exercises should be followed.

One issue worthy of mention is phantom pain in the missing liimb. I seem to be suffering from this particularly badly. The main medication for this is Gabapentin. I wasn't overly keen but it is better than suffering (at times quite severe pain) in silence.

That's it for now but if you want any further advice or information please ask here or PM me.

[Decepticon in reply to MichaelJH]

Great to hear from you and thanks for the reply.Husband had an above knee amputation, and it was smoking related as he has peripheral artery disease. When the heart failure developed his legs swelled up and suddenly erupted in blisters. Nothing could heal on the right leg as circulation so bad, then found femoral artery was completely blocked at the groin. Amputation done as an emergency.

The OT came to our home and explained her job was just to get him home, we need to wait for social services to assess for long term solutions

We live in a mobile home with narrow doorways and steps from outside, this means he is "room" bound in a 10' x 10' space with a hospital bed, a commode and a wheelchair, a bookcase and a computer desk.

He is a bit short on muscle, but he can move between bed/chair/commode unaided, but gosh it takes a lot of time and is painful.

I asked about solutions for washing and was sent a link for an incontinence fitted sheet. Not very useful as the mattress is one of the air filled ones that can't take a fitted sheet. I just feel like I have been dumped on with no training.

He has been told he can join a hospital gym at some time in the future The OT said she doubts he will be able to use a prosthetic leg as he is quite frail, but they won't stop him trying.

I guess I am just trying to see a positive future when we have ramps and wider doors and he can use his mobility scooter again.

[MichaelJH Heart Star in reply to Decepticon]

Hello again. My amputation was also due to PAD. The main narrowing were in the lower leg but angioplasty failed totally. My main weight loss was muscle and although I have regained the weight muscle is still slightly lacking. It's early days yet but he will need to work on building muscle as it is really needed for easier transfer. I used to struggle using a "banana" board but now push up on my remaining leg, move hands to my target, twist and sit down. Easier to do than describe. Obviously I don't know your partner's specific issues but hopefully there is nothing to prevent him building muscle. One of the people attending my small amputee group physio sessions before CovID closed it was building up the additional muscle needed and he is nearly 80.

I initially found the hospital OT good but then realised they are restricted from above. Fortunately my Limb Fitting Centre has an excellent one. The lack of continuity between hospitals and the community is totally unacceptable. They are dealing with people's lives. I really feel for your partner stuck in a 10' square room. On two occasions I have been confined to a 12' x 9' room and it does make you "stir crazy".

I hope things starting improving for you both soon as it all comes together - a healthy body means a healthy mind and vice versa. Currently with an issue with my stump and lack of physio really gets me down and I am a pretty positive person.

All the best, Michael