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katiebeth69

New to amputation and new to here.

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Hi all, I am a left below knee amputee after falling into a coma (reason unknown!!) and developing Compartment Syndrome and a whole lot of other problems from CS on the 21st of June 2012.

I also had Fasciotomies on either side of my remaining calf, and on the outside of both thighs.

There doesn't seem to be many amputees where I live, so I don't have anyone to ask questions, which is why I joined this site.

One thing I have noticed since my amputation is that I will very quickly switch from boiling hot to freezing cold- in a matter of seconds- and was wondering if this is something to do with being an amputee? (It's not infection, I've been checked for that, and have a District Nurse visit me twice a week to change the dressings on my Fasciotomies).

Thanks guys!

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Hi, katiebeth, and welcome to our happy little group! :smile: Sorry to hear about your situation, but this is a good place to get in contact with other amputees and ask your questions. About the sudden temperature changes: I don't know if it's actually a result of amputation, or if it's related to healing after going through that much damage, but flipping rapidly between feeling hot and cold is pretty common, especially at first. I know that I still, after nearly eight years at this, do tend to notice temperature changes more than I used to, possibly because I'm just not likely to be moving as rapidly as I did pre-amp...and cold weather can be pretty nasty on my stump.

As long as you're being watched carefully for signs of recurring infection, it's probably not a serious matter...more just an "annoyance" than anything else.......

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Hi Katiebeth and welcome - I am also a LBK. I don't change temperature rapidly but I do notice extremes of temperature far more and find them difficult to deal with.

This is a very friendly forum so feel free to ask anything - someone always seems to know the answer.

Sue

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Welcome Katie. Sorry you had to join our club. It's a very expensive club, it'll cost you an arm or a leg. HaHa. Well it's too early for jokes. I hope you heal quickly and get on that leg a ride.

I am much more hot natured now than I was before the amputation. I seldom get really cold. Like Sue, I feel the temp extremes much worse now.

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Hi Katie. Welcome to the forum. Like Neal, I am also hotter than I was pre-amp (and we were pretty hot before haha!). And I sweat like crazy, which I never did before, especially in my head. I read somewhere that you have more sweat glands in your feet than anywhere else so I'm guessing if your foot is gone the sweat has to find alternate route.

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Hi all, I am a left below knee amputee after falling into a coma (reason unknown!!) and developing Compartment Syndrome and a whole lot of other problems from CS on the 21st of June 2012.

I also had Fasciotomies on either side of my remaining calf, and on the outside of both thighs.

There doesn't seem to be many amputees where I live, so I don't have anyone to ask questions, which is why I joined this site.

One thing I have noticed since my amputation is that I will very quickly switch from boiling hot to freezing cold- in a matter of seconds- and was wondering if this is something to do with being an amputee? (It's not infection, I've been checked for that, and have a District Nurse visit me twice a week to change the dressings on my Fasciotomies).

Thanks guys!

Hi Katie, welcome to the forum. I have been a bilateral b/k for quite a lot of years, since I was young, and like Marie says do find that I am usually always warm, quite often hot and when I am walking do sweat a lot, although like Marie says, have been told it is to do with less sweat glands, I do find that I didn't used to get quite so hot years ago when the prostheses were made differently, though of course was younger then and don't notice it so much also when not wearing the legs, but find them that the legs do get very cold quite quickly.

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Hi! Have been following all the posts with interest and just wanted to give my 10 cents worth : sweating is also a side effect of some painkillers (Tramadol esp). I also feel the temp. changes more post amp (RBK).

this is a wonderful, friendly site - welcome!

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I don't take pain killers and am post menopausal. Maybe it is all the gear??

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Hi Katie. Welcome to the forum. Like Neal, I am also hotter than I was pre-amp (and we were pretty hot before haha!). And I sweat like crazy, which I never did before, especially in my head. I read somewhere that you have more sweat glands in your feet than anywhere else so I'm guessing if your foot is gone the sweat has to find alternate route.

Hi Katie, and welcome to the forum.......

Marcia, that explains a lot to me........ I know that I sweat more than I used to,especially my scalp sometimes.............

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Until I began menopause, hardly ever did I sweat, and then only minimally. I probably could have gone without deoderant. But I got thru that and then came the amputation. I have a precious friend who is about 16 yrs younger than I. Beautiful, olive skin with gorgeous blue eyes and she has always sweated like a pig! We would crack up about it. Now, I'm right with her. Not in looks, but in sweat! One day my sister was here and saw me putting on my leg. She said, no wonder you're so hot. That's when I thought, maybe it's the gear. The sweating in my head drives me nuts. I have naturally curly hair, which I straighten as much as possible, but when my head's sweaty, here come the curls! Just wait til the cruise. I look like a crazy woman. :blink:

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yep Marcia I think it is to do with all the gear, perhaps also less blood going around the system, less sweat glands etc., I've had my amps for over four decades and always felt the heat ... meno heat is different ....just an added bonus for us lady amps! lol

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The older we get the hotter we are! :tongue:

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Hey guys, thanks for all the replies, sorry it's taken so long to get back to you all.

I've really not been coping well with the amputation, so I've been stuck in a psychiatric hospital for 6 weeks and 4 days now :(

They've decided that they will be keeping me in for a while longer, to help me get through some of the rehibilitation stuff. I also got the crappy news that if I don't get the feeling back in my remaining foot within a year, they want to amputate my other leg.... but I think I will be fighting that tooth and nail, because I don't see the point in going through the pain and stress of getting a leg removed due to lack of feeling, only to get it replaced with a prosthetic you can't feel! I get that I am more likely to get wounds and infections because of the lack of feeling, but I am willing to take that risk, I'll just have to learn to be more aware of things!!

I've been thinking a lot about the overheating issue (obviously not much else to do on this ward, lol!) and the more I thought about it, the more reasons I came up with to explain the excess heat- mostly the stuff you all have suggested, although I didn't consider it being a side effect of medication- must look into that!!

I have an appointment with the Limb Center next Friday, I think my prosthesis might be ready (although it's been 6 weeks since they last saw me, and I think I've lost weight, but hopefully not enough to need the prosthesis altered!!) They have warned me that it's going to be a LONG road to recovery because of the state my remaining leg is in (currently getting serial casting to stretch the foot back into position) and because it's been so long since I have weight beared. I'm not looking forward to this! I wish I could press a fast forward button and just skip straight to the walking like a pro stage!

I guess maybe it is a good idea to be in here during this stage. At least it will save me a LOT in travel costs, seeing as the Orthapaedic ward is in the same building, and the Limb Center is across the road!

If anyone has any advice for getting through the initial learning to walk phase, feel free to post or PM me, think I'll need all the help and advice I can get!

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Katiebeth...a few words of advice for a newbie waiting to take her firswt steps:

1. A prosthesis that fits well does NOT hurt. If they try to tell you that you'll "get used to the pain" they are lying. Tell your leg team just exactly what's going on and what you ar feeling...they should make you a leg that leaves you pain-free. You might feel some pressure and even slight discomfort as you're adjusting, but pain is a no-no!

2. Make sure you're totally open and honest with your leg folks about any odd sensations in the way things feel and how well you're able to walk. The first time I walked, it was painful, wobbly, and highly unbalanced...and I just thought, "well, if this is as good as it gets, I guess I have to learn to live with it." Fortunately, my leg guy read my expression and said "tell me what's going on...it can be adjusted to make it better." You will have to be an active partner in the process of completing a comfortable, useful leg...but it will be well worth it.

3. Be proud--VERY proud--of each and every step you take on the road back to recovery. I have a recurring tendency toward depression myself...and when I was starting to adjust to walking with my prosthesis, I'd do some new task, feel momentarily proud of myself ("Hey! I walked the entire length of my sofa without assistance!"), and then plummet into depression at the "smallness" of that accomplishment. ("Big deal...84 inches...how pathetic...") Remember...you've never had to walk with a prosthetic leg before...each and every step you take with it is a VERY BIG DEAL. If you take three steps one day, that's three steps more than you've taqken before. You may do six steps, or nine, or twelve the next day! As long as you're making progress, you're heading back to a normal life. Celebrate it!

4. Normalcy will come. Try not to set deadlines for raching specific goals. If you tell yourswelf "by the end of six months I'll be able to walk one mile" and thern find that, at the end of six months, you can only walk a quarter-mile, you've set yourself to feel like a failure. Set yourself some general goals, and then set yourself some smaller goals along the way, and then enjoy reaching each of them whenever you happen to reach one. Time will go on, and one day you'll realize that your life feels normal again.

All the best to you on this journey...it's not easy, but it's rewarding and can teach you a lot about yourself and your ability to live to the fullest!

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Thank you for those tips Cheyrlm, I have made note of each of those.

Regarding number 3- being proud of each step, I managed to feel proud of myself this weekend- I went 4 wheel driving with my brother, and mid-track, in the middle of nowhere, I decided I just couldn't hold on any longer- I desperately needed to pee... but the ground around us was too rocky for me to wheel myself in my chair to a private area, so I managed to climb out of the car and stand on my only foot, leaning against the car, whilst my brother fireman lifted me and carried me to a private area. I then managed to manouver myself from the remains of a wall he had leaned me against, to the corner, squatted down (sorry for tmi!!!) held my balance, and then managed to get back up and over to the area he had left me, waiting for him to come back for me. I haven't managed to stand on my remaining foot in about 2 months because the foot drop caused my foot to warp into a position that I couldn't stand on, but now I have a cast on, I can do it! It was the first time in ages that I have managed to recognise an achievement and actually be proud of myself, so that was definately a huge step, both physically AND mentally!

I have a few goals, mostly big ones, i.e. learning to walk, and once my car is modified- learning to put my wheelchair in/on the car (depending on which technique I decide to use) and also learning to drive a hand controlled car. Then there are some smaller ones like sorting out a well fitting, comfortable prosthetic, becoming more confident and able in my wheelchair, and improving my balance. But, I don't have time frames for these goals, and I don't think I will make any time frames for them, I really can't afford any disappointments right now!

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That's a giant accomplishment, and a good-sounding plan! Congratulations!

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Hi all- just a quick post to update you...

Yesterday afternoon I was finally able to take my prosthesis (and a zimmer frame) away! It's not finished, and will need adjusting weekly after I get my cast replaced, but I can use it, and it's so much easier than I was expecting!

I don't think I've smiled this much in years- and I'm getting heaps of fantastic reactions from other patients and staff!

I've been wearing it for the past 6 hours, tomorrow my goal is to wear it all day (excluding during my nana naps) and also to walk down to the Hospital Cafe- takes about 5 minutes in the wheelchair, I'm pretty confident I can manage that, although it might take a while!

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hi katiebeth,

it sound like you are doing really well, keep up the good work, you will soon wearing the leg all day, then you will really start to get your life back!!i did, now 22 years later i hardly think about it, once the leg is on!!

cheers maggie

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Hi Katibeth,

Keep up the good work! Being able to get around on your feet - what ever they are made of - is very under appreciated by those who have always been able to do so. The little things in life..... Smile and keeping going!

Jane

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