BIL Getting Leg Amputated--Looking for Information

[QueenIsabella]

As the title says, my BIL will be getting his right leg amputated at the end of the month. He had a botched knee replacement some years back, now there's a persistent infection that can't be fought off, and he needs heart surgery. Hence, the decision to take his leg, let that heal, then go on to have the heart work done.

I know this whole thing will involve a long, painful, difficult recovery. My sister seems to be in somewhat denial--she's talking about getting a service dog (for what? why now?), and seems to think it'll be a simple matter to convert his truck to left-sided gas/brake pedal (again, this seems to put the cart before the horse. Not to mention, switching the pedals may be easy, but he'll have to re-learn decades of right-footed driving).

I would love to hear from people who have been through this, either themselves or with a family member. What is the recovery time? I presume he'll be fitted with a prosthesis and need a lot of physical therapy. There house already has a wheelchair ramp, but no bathroom on the first floor--Sis is looking into a stairmaster to get him up to the bathroom. What were the issues, big and small, that you encountered? Especially things that you didn't realize ahead of time.

I'm afraid I have precious few details, on both the amputation and the heart issues. I'm 800 miles away, so not able to offer much beyond emotional support.

Thanks in advance for any thoughts, ideas, suggestions.

 

[Mackenzie Click-Mickelson]

A service dog could be incredibly important and extremely helpful not only physically but mentally. You may call that part denial I call that her thinking about her husband and his quality of life.

Service dogs for amputees are common, the skills and tasks they help with obviously vary depending on what limb or limbs have been lost.

This may not be a cart before the horse and you may not have been privy to all things surrounding what seems to have been a long painful journey for him. As for the why now because going from an infected leg to no leg is still an incredible change again both physically and mentally.

I would trust her husband's doctor(s) on this matter if they believe a service dog could at least be in the conversation for steps for afterwards or things to keep in mind should something down the road in recovery.

The driving part will have to wait until it actually happens especially the PT part and how that goes but tech is ever improving on this part for driving for those with disabilities so that's good.

I sincerely hope for a good outcome for both surgeries and recovery over time

 

[Breezy_Carol]

HI.

I am a retired physical therapist. Things may have changed but I can give you my thoughts.

I assume he will be having an above knee amputation. (AK) He will not be fitted with a prosthesis until the surgical wound is healed. I assume he will get around with a walker for short distances and a wheelchair the rest of the time. Another thing I am assuming is that he is older and not in the best of health.

He will probably begin PT soon after surgery, or possibly before, to strengthen his arms and remaining leg as well as the muscles in his residual limb needed to use a prosthesis. PTs love to get the patients before surgery as it is easier to teach then.

One of my first patients I had out of PT school was a new amputee. She was so upset because no one had explained the process for recovery. I spent the first session just talking to her. It might be good for him to get the surgeon, or someone in that office, to explain what will happen post-op.

Good luck to all.

 

[clh2]

I personally would have a very difficult time driving with a left footed accelerator & brake. Been driving for 45 years, which is why that would be hard for me. I think I would have an easier time with adaptive hand controls.

i’m only making my comment in case these were not considered.

Sending healing thoughts to your BIL for his upcoming surgeries and recoveries.

 

[TwoMisfits]

About the only thing I'd recommend, since this seems not to be an emergency and since this is always encouraged before treatment for my cancer, is to get a 2nd opinion if they haven't. Make sure the infection truly can't be dealt with without amputation b/c amputation is a huge, irreversible step.

His doctors should not mind the extra peace of mind he'd get with that 2nd opinion. And then he won't ever regret the act and "wonder." Instead, he'll be all in on the new lifestyle.

 

[jdb in AZ]

So many aspects to this. We have a local support group where other amputees mentor a newbie through the journey.

One biggie I didn't expect was the stoopid comments from well-meaning friends. DH had a long fight trying to keep his right foot, and a guy who didn't know how close we were to the surgery at the time phoned and asked, "Do you still have a foot?" then burst out laughing at his joke. Another friend asked me, "Did you approve of your husband's decision to have the surgery? First, it's none of her business, and 2nd, if she had any idea of all we'd been through trying to avoid the surgery (including 2nd and 3rd opinions) til we basically had no other options left, she wouldn't have asked such a nosy, insensitive question. Also, at that point, he'd already had the surgery so what did she expect me to say -- "no, let's reconnect the foot?"

Different patients have different recovery times. Supposedly the longer the patient hasn't been able to walk, the longer it will take to get accustomed to a prosthetic. DH had a very long recovery, including revision surgeries due to infection, plus his diabetes slowed the recovery process as well.

Best wishes to your BIL, and give your sis a hug too -- she's going through a lot of trauma herself.

 

[HopperFan]

I know this whole thing will involve a long, painful, difficult recovery. My sister seems to be in somewhat denial--she's talking about getting a service dog (for what? why now?), and seems to think it'll be a simple matter to convert his truck to left-sided gas/brake pedal (again, this seems to put the cart before the horse. Not to mention, switching the pedals may be easy, but he'll have to re-learn decades of right-footed driving).

One of my first patients I had out of PT school was a new amputee. She was so upset because no one had explained the process for recovery. I spent the first session just talking to her. It might be good for him to get the surgeon, or someone in that office, to explain what will happen post-op.

So many aspects to this. We have a local support group where other amputees mentor a newbie through the journey.

Your sister seems concerned with getting him his independence back immediately and I think perhaps she is not in understanding the magnitude of what he'll have to go through, the amount of support and the time it will take to get to the kind of independence she seems to be thinking of. SHE will become a caregiver for awhile, she will become the driver for awhile, she needs to be a cheerleader when he's down. I mean even if she adapts his pedals the odds that he'll have the strength to get himself into a truck (especially if he has heart issues) any time soon is unrealistic. I agree with handle adapts because if he is not young, his instinct will be his right foot and at what point is it too late and perhaps have an accident.

I'm thinking she doesn't understand the process and really needs to sit down with someone, and a support group now is not a bad idea. I am a caregiver going on year 39. I had weekly support group time the first 4 years, and I'm not a support person AT ALL. Some meets were casual, some had professionals come in to "teach" us different aspects and most were just other parents talking who were farther in the process. I heard things that worked, things that didn't work, got some ideas that would be good for us. AND if I had a question it was a comfortable place to ask, no judgement.

Perhaps (and only you know your relationship) you could encourage her to join groups, talk to people, ask for a mentor, ask who the PT referral would be to talk to them before hand. Ask her what prep they need to do ... maybe just asking her lots of questions will plant the seed that she needs to be asking them.

Best of luck to them!

 

[prairie_girl]

I’ve gone through this!

My husband had to have a below the knee amputation at the end of 2019. He got out of the hospital just as covid was starting to be a thing.

Like a pp mentioned, he will not be fitted for a prosthetic until the wound has completely healed. I don’t remember exactly how long it took, but I know it was months, not weeks. He only needed three sessions to be completely mobile on it. It was rather surprising (in a good way) how he adapted to it. He is currently being fitted for a new one, because the stump is changing shape, as is normal, and it’s starting to hurt when he has his leg on.

We did end up having to move because our house did not have a bedroom on the first floor. He can go up and down stairs with it, but wouldn’t have been able to in our old place, because he was still waiting to be fitted, and he was spending all his time in a wheelchair. He still does spend most days in his chair. His leg is mostly for when we go out.

Off the top of my head, I can’t think of anything that surprised us. It did take quite a while for him to accept what was happening, but I think that’s normal for anyone.

Please, please feel free to ask any questions, either here or in dm, and I will be happy to answer them all.

Note, we’re in Canada, so processes may be different, but emotions don’t worry about borders.

 

[QueenIsabella]

Some additional information...

BIL is 57. He's had arthritis all his life (juvenile arthritis?), and actually had to wait until he was old enough to have the knee replacement surgery (which was botched). He's not in the best of health, and frankly, does the absolute minimum as far as maintaining his health.

Brief aside for a BIL story--he would never wear a seatbelt. One day he gets T-boned, fell out of his truck, and his own truck rolled over him. He survived, obviously, but had months of recovery. After he's better? Still won't wear a seatbelt! I mean, if God smacks you upside the head, maybe it's time to listen? But, this gives an insight into his approach to life.

I believe second opinions have been procured, he's been fighting the infection for a couple years now. It's really come to the fore, due to the necessary heart surgeries.

As far as the dog, I should have mentioned that my sister, God bless her, is a cat-hoarder. She's had dogs, too, but none right now. In her defense, (a) she's extremely kind-hearted, (b) she most likely would have an autism diagnosis, if that were more of a "thing" back 45 or so years ago (most likely Asperger's, even she admits it), and (c) she lives in an area where cats are, unfortunately, dumped with some frequency. She's had as many as 45+ cats at a time (she demurs on giving an exact figure). She WAS down to 8, now she has a few more strays hanging around in her yard. Her house is disgusting-filthy and smelly, I can't bear to be inside for any length of time. And I would be the first to admit, I'm not the world's best housekeeper (but, there aren't whisker prints in the butter here, and if there's a cat mess on the floor, we, well, clean it up!)

I will definitely suggest support groups for both of them. My sister is extremely introverted, but I think she would be motivated to help her hubby--she's very devoted to him. And she loves to read, so any book recommendations would be greatly appreciated.

I suggested, years ago, that they move to a ranch style house. Their current house only has value as land. While we didn't anticipate this, specific scenario, it's been clear for some time that BIL would need medical support, sooner than most.

 

[Mackenzie Click-Mickelson]

As far as the dog, I should have mentioned that my sister, God bless her, is a cat-hoarder. She's had dogs, too, but none right now. In her defense, (a) she's extremely kind-hearted, (b) she most likely would have an autism diagnosis, if that were more of a "thing" back 45 or so years ago (most likely Asperger's, even she admits it), and (c) she lives in an area where cats are, unfortunately, dumped with some frequency. She's had as many as 45+ cats at a time (she demurs on giving an exact figure). She WAS down to 8, now she has a few more strays hanging around in her yard. Her house is disgusting-filthy and smelly, I can't bear to be inside for any length of time. And I would be the first to admit, I'm not the world's best housekeeper (but, there aren't whisker prints in the butter here, and if there's a cat mess on the floor, we, well, clean it up!)

This is irrelevant to her husband's care with respects to your opinion on why and why now for a service dog. You seem to have your issues with your sister that much is very obviously clear. But that should never be something to pass on judgement about the topic of a service dog for your brother-in-law should one be recommended. Let his team of doctors discuss these concerns and if a service dog is even recommended with them, it's none of your business with all due respect.

 

[QueenIsabella]

This is irrelevant to her husband's care with respects to your opinion on why and why now for a service dog. You seem to have your issues with your sister that much is very obviously clear. But that should never be something to pass on judgement about the topic of a service dog for your brother-in-law should one be recommended. Let his team of doctors discuss these concerns and if a service dog is even recommended with them, it's none of your business with all due respect.

I have no idea if the doctors recommended a service dog. I only know that my sister mentioned wanting one. I'm really not interested in focusing on the dog, per se--I'm more interested in advice as to how people have handled an ATK amputation, recovery times, information you wish you'd had (books? websites?) issues you hadn't expected, and so forth..

Clearly, you don't have anything to add to that discussion.

 

[QueenIsabella]

Sis says they've had several opinions--doctors have been warning that this was a likely outcome for a while now. They did mention it to us a few months ago, but she only recently said it was a done deal, gave a surgery date, and so forth. She's hoping that the after-care people can help her with support groups.

 

[Mackenzie Click-Mickelson]

I have no idea if the doctors recommended a service dog. I only know that my sister mentioned wanting one. I'm really not interested in focusing on the dog, per se--I'm more interested in advice as to how people have handled an ATK amputation, recovery times, information you wish you'd had (books? websites?) issues you hadn't expected, and so forth..

Clearly, you don't have anything to add to that discussion.

You added in that detail, and then doubled-down on your issues on your sister which appear to be more than anything the bigger issue. You started with you thought your sister was in denial simply because of asking about getting a service animal.

Any poster can have an opinion on what you write and you asked about thoughts, ideas, and suggestions. Did you not expect someone to comment on that either way? FTR I understand why you have those concerns, if only you knew how many dogs and cats my mother-in-law has and the carpet smells and the clean up. I mean they don't even let their new dog outside to go to the bathroom so it just poops and pees on puppy pads, it's gross. BUT I would never use this information for why or why not my mother-in-law or step-father-in-law could conceivably have a service dog should they need one. It is up to their doctors on that part and their advice on those things and I couldn't conscionably argue that someone who has a disability shouldn't have that as an option if they've discussed with their team of doctors on it thus I shared my thoughts and suggestions on that Hopefully things go well!

 

[TwoMisfits]

Sis says they've had several opinions--doctors have been warning that this was a likely outcome for a while now. They did mention it to us a few months ago, but she only recently said it was a done deal, gave a surgery date, and so forth. She's hoping that the after-care people can help her with support groups.

That's a relief.

Then, my biggest suggestion would be to have them immediately join internet boards related to amputees and his underlying condition. People on those boards are a godsend of information, empathy, and good ole' experience that helps a lot.

Since my cancer diagnosis, I've been on one (based in Britain, but it's worldwide) that has been spectacular - if it wasn't solely cancer related, I'd send it along, but I know a lot of these exist and are active. And they aren't just on Facebook. The most helpful and active ones seem to be offshoots from medical science support websites.

 

[kimmar067]

....my brother [RIP ] was also an amputee:

This was the first time in over a year he enjoyed a dip in the Atlantic. His amputation was below the knee and, while he was at a rehab center, 2 weeks later, suffered a very bad fall, severely damaging his stump and had to undergo another emergency surgery. He is forever my hero, with what he endured for the last 2 years of his life. Good luck to your BiL, OP.

One thing I can pass on, OP, is that, the day before the surgery, he had a consultation with the surgeon, a member of the clergy, and a psychologist. Also, the surgeon mentioned him having a stump shrinker, which would help "shape" and "size" his eventual stump so that he could be fitted for a prosthetic.

 

[QueenIsabella]

....my brother [RIP ] was also an amputee:

This was the first time in over a year he enjoyed a dip in the Atlantic. His amputation was below the knee and, while he was at a rehab center, 2 weeks later, suffered a very bad fall, severely damaging his stump and had to undergo another emergency surgery. He is forever my hero, with what he endured for the last 2 years of his life. Good luck to your BiL, OP.

One thing I can pass on, OP, is that, the day before the surgery, he had a consultation with the surgeon, a member of the clergy, and a psychologist. Also, the surgeon mentioned him having a stump shrinker, which would help "shape" and "size" his eventual stump so that he could be fitted for a prosthetic.

I so appreciate your comments and photo! It's nice to see that people can get through this type of thing and go on with life.

There's so much to digest--I wonder, too, if my sister is just venting to me and trying to look forward as much as she can. Realistically, BIL won't be driving a truck any time soon after the amputation. But maybe the thought that he might one day is pulling her through.

P.S. I like the idea of the hand controls--hopefully, Sis will find a mobility conversion specialist who can walk them through the options (and makes sure BIL gets some experience/training on the new/modified vehicle).

 

[Pea-n-Me]

Some additional information...

BIL is 57. He's had arthritis all his life (juvenile arthritis?), and actually had to wait until he was old enough to have the knee replacement surgery (which was botched). He's not in the best of health, and frankly, does the absolute minimum as far as maintaining his health.

Brief aside for a BIL story--he would never wear a seatbelt. One day he gets T-boned, fell out of his truck, and his own truck rolled over him. He survived, obviously, but had months of recovery. After he's better? Still won't wear a seatbelt! I mean, if God smacks you upside the head, maybe it's time to listen? But, this gives an insight into his approach to life.

I believe second opinions have been procured, he's been fighting the infection for a couple years now. It's really come to the fore, due to the necessary heart surgeries.

As far as the dog, I should have mentioned that my sister, God bless her, is a cat-hoarder. She's had dogs, too, but none right now. In her defense, (a) she's extremely kind-hearted, (b) she most likely would have an autism diagnosis, if that were more of a "thing" back 45 or so years ago (most likely Asperger's, even she admits it), and (c) she lives in an area where cats are, unfortunately, dumped with some frequency. She's had as many as 45+ cats at a time (she demurs on giving an exact figure). She WAS down to 8, now she has a few more strays hanging around in her yard. Her house is disgusting-filthy and smelly, I can't bear to be inside for any length of time. And I would be the first to admit, I'm not the world's best housekeeper (but, there aren't whisker prints in the butter here, and if there's a cat mess on the floor, we, well, clean it up!)

I will definitely suggest support groups for both of them. My sister is extremely introverted, but I think she would be motivated to help her hubby--she's very devoted to him. And she loves to read, so any book recommendations would be greatly appreciated.

I suggested, years ago, that they move to a ranch style house. Their current house only has value as land. While we didn't anticipate this, specific scenario, it's been clear for some time that BIL would need medical support, sooner than most.

Honestly my highest priority would be figuring out how he’s going to get to the bathroom multiple times a day that’s on the second floor of the house. Is it possible to add a bathroom on the first floor? Maybe that’s something friends and family can help out with? (? Gofundme.) A stair lift may work if he’s able to maneuver it safely without help, as someone may not always be there.

I would not add a dog to the stress of this situation unless and until things stabilize out. And as others have said, that could take a while. Sometimes there are infections that set in or other health problems arise that requre re-hospitalization, etc. They already know he still needs heart surgery so that’s going to be another big issue down the road sooner than later. Caring for a new dog on top of all that is too much (especially with a house full of cats!). This is not an easy thing to go through. (My daughter cares for these patients post op.) I would also strongly recommend that, if he’s diabetic, he tries really hard to keep his blood sugars within good range as that will foster healing. If he smokes, he should try to give that up as well as it impedes the circulation. Oftentimes patients requiring amputations have multiple comorbities, so it helps to try to get as much in better shape as possible for both immediate and long term health.

 

[Southernmiss]

Would moving to a handicapped accessible home or apartment be an option?

It will be a lot on both of them, especially in a messy place and upstairs bathroom.

I'm an otherwise healthy 54 year old recovering from knee surgery 11 weeks ago. It's been a long slog and I'm progressing exceptionally well. And am walking on my leg without any aids. But there's still pain daily, I'm very aware of what's on the ground or floor and mastered going up a small set of steps just last week. I still have quad muscle atrophy and limits and will for some time ahead.

We were taking down Christmas decorations today and I reminded dh several times to keep a path completely clear for me so that I wasn't stepping over boxes, cords, etc. He got a little exasperated with me because even 11 weeks out he doesn't completely understand my limitations.

I couldn't imagine having other living challenges to add to the mix.

 

[QueenIsabella]

They had talked about converting the kitchen pantry to a small bathroom with a shower. I don't know that they did that. That would certainly be a help to him.

While he's not a diabetic, thankfully, he does have high blood pressure. They're both trying to lose weight, pre-surgery. On the good side, they rarely eat out, and my sister's a master at cooking, especially low-calorie stuff (last I knew, she was looking for a lower calorie chocolate chip cookie recipe).

I do think a dog might help, down the line when BIL is mobile and past the surgeries--it would give him a reason to walk every day. In the past, they've had a greyhound rescue, but you don't walk greyhounds, nor are they typical service animals. I think they'd have to think long and hard about the specific type of dog (something BIL could handle on his own).

If they moved, it would have to be to a house, due to the many cats. I don't think their current home has value beyond the land--it needed serious updating when they bought it years ago, that never got done, and it's not gotten better with time.

 

[TLSnell1981]

I can certainly understand your anxiety. Realistic expectations regarding BIL can't be determined without a thorough evaluation by his multidisciplinary team. Amputees are typically able to live a full life but there are variables. It would be beneficial to contact the Amputee Coalition of America for further guidance. I believe they can provide answers to many of your questions. It would also be helpful for BIL to meet with a prosthetist in his area prior to his procedure. Family support is always important and thankfully your sister has you.

Best wishes for a good outcome.

*edited to add*

A bedside commode might be the answer to his immediate post op needs. They are not expensive and may be considered a covered expense since there isn't a toilet downstairs.