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jacqui

In need of some courage!!

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Hi everyone,

My name is Jacqui, just joined and would like to introduce myself. In 1987 I had a horrible motorbike accident which left me with skin grafts on my right leg from just above the knee, I lost all the skin and tissue so I have grafts directly onto the muscle. I also completely messed up my right ankle and after 20 years it has now become fused and I can only walk in high heels ( I cannot get my heel to the floor) I walk so badly that I have constant back ache, I am always tired and in constant pain.

6 years ago doctors asked me to consider amputation, at the time my children were very small and I thought I could soldier on! I have now decided to take the plunge and am having my lower right leg amputated on March 15th (not long!!!).

There seem to be so many practical and brave people on here but I have to say Im petrified!! They are planning to take what remains of the good skin on my foot to cover the base of the stump but there is a chance I may loose the knee because the grafts will break down.

Im putting on a brave face at home, my family are fantastic, but Im not doing well. I really do need to start thinking positively.

It would be great to hear from you guys,

Jacqui x

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Welcome to the forum Jacqui. I'm Higgy, and a left below knee amputee (also known as a LBK) since 2002.

I'm sorry to hear that you have had such a hard time with no one to share it with. That's what we're here for.

I know the impending surgery isn't giving you much time to get used to the idea of what is going to take place and to get informed about being an amputee.. Have they mentioned setting up an appointment anywhere with a local prosthetic facility?

You could use part of this time to visit one and get familiar with the prosthetics that will be part of the rest of your life. That would remove one of the "unknowns" that might be terrifying you.. We have all been in your place at one time. Not knowing what the future will hold, how it will work, etc. But, we can and do survive...

Many people have mentioned that starting a journal now is a very helpful thing. It gives you a chance to look back and see how far you have come. Maybe putting words to paper will help you sort out your feelings. I didn't have the opportunity to have that advice in the beginning. I lost my leg due to an accident and spent months in the hospital afterward. It must have been close to 7 months before I found this forum.

You mentioned that you were putting on a brave face for your family. Is there one family member,such as a spouse or parent or even a sibling that you can confide in? Just to be able to admit your fear to someone close might be a huge help to you. I can see you putting on a brave face for a child, but it probably isn't doing much to help you..But then again, that's what we are here for.

If you have questions ask, we'll try to do the best we can to help you get them answered..

Hang in there.. Life is bearable after amputation.. You can manage..it won't be overnight, but you can do it. Just take it one day at a time, one step (pardon the pun) at a time..

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Hi, Jacqui.

Glad you've found the forum, sorry for the circumstances that have lead you to. It sounds to me like you've got ALOT of courage already. Hopefully we can help unleash some more of what's already there! :wink:

To add to Higgy's post, it also seems to me that you're in a position to benefit greatly from amputation. You've already fought long and hard, not only to keep the leg, but to make it work while sparing your family as much grief as possible. Day in, day out. Now that's courage.

Courage is also looking, seeing, knowing, and then acting. One of the greatest things i was ever "told" concerning amputation was something like this..."Always remember that amputation isn't the problem. Amputation was the solution."

Imagine walking balanced and straight again. Imagine being able to walk in something other than heals. Imagine being active again. Imagine being able to focus a little more on your close ones instead of being distracted by the pain and struggle you're experiencing now. It's all in the chapter coming up!

I'm not saying amputation will be the cure all. Not saying it'll be pain free. Not saying it'll not be a struggle. But you've been dealing with all these so long already, i'm thinking you're about to get rid of an albatross. You can't see til you get to them, but there are still ALOT of smiles in the coming chapters. And that's what it's all about. :biggrin:

Good luck! And please keep us posted.

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Hi Jacqui

I have sent a message to you as think we may have communicated before on another forum.

Just wanted to say, I think it is very normal to be petrified .... even though I was very used to being a amputee, I was petrified when I went for a revision amp just over a year ago.

I also have skin grafting, and though it can be problematic, it is all do-able. I have been walking on a leg with skin grafting for forty years now and it is still holding out ... plus the liners that we are able to use these days do an amazing job of protecting the graft.

I know how we all tend to put a brave face on at home, I did that too, but inside was really scared, so understand how you must be feeling when you say you are not doing well. You are probably doing better than you think. Your family are probably worried too, and also trying to put on brave faces - think we all do it.

Just take care of yourself over the next few weeks, and, immediately after the op., make the most of the rest as you will have some hard work ahead of you when you start your rehab .. but remember, one day at a time, it will all be worth it when you are walking again.

Ann

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Hi Jacqui - I am a right below knee, as you will be. Amp life has it's challenges but nothing that can't be overcome. I knew for a little over a week that my leg was coming off and the feelings leading up to it are indescribable. But Shane is right, amputation was the solution. I hope it will be for you too. Remember that we are here for whatever you need. Please keep us updated.

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Hi Jacqui,

Welcome to the forum!

I think Shane had the right idea in that you have to focus on the wonderful things ahead after your amputation.

I dragged around my shriveled, diseased leg around on crutches for 15 years. The doctors had been advising me to have it amputated for years but I just couldn’t do it. I was terrified! It took years of pain, infection and numerous surgeries to finally come to the point when I was ready to let my leg go. Obviously, something inside you came to that same place as well.

What pulled me through the year that I took to prepare for my amputation was just focusing on what I would be able to do after my leg was gone that it had kept me from doing. I got so excited just thinking about them. Just picture them in your mind. I kept thinking about the new life that was ahead of me. It was going to be my rebirth!

It has been a year since my amputation and slowly, those things that I dreamed of doing are beginning to happen. Letting my leg go was like releasing a weight I had carried on my back for far too long. I am now walking without crutches for the first time in over 15 years. Two weeks ago, I went skiing for the first time, something I had never been able to do because of my fragile leg. I ask myself now why didn’t I do this sooner! Oh yes, and don’t forget the shoes! While I am still dreaming getting back in my high-heels with my new leg (and I will!), just think of all the cute flats that you will be able to wear this summer!

It won’t be easy. It will take time, hard work and much patience, but it sounds like you are ready for this new chapter in your life. It is not an end, but a beginning! This is one place where you don’t have to put on a brave face. We have all been through what you are about to face and know what that fear and uncertainty feels like. Stay strong!

-Chrissy

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Hi and welcome, Jacqui -

You've already gotten much good advice here, so I won't repeat everything. I'll just say that I'm a left below-knee amp and very happy to be one...it was a major turning point in my health and activity level. Yep...I'm one of those who wished she'd amputated sooner.

I don't have grafting issues, but a number of our members do and I'm sure they'll be willing to share their experiences with you. Just remember through all of this that your emotions are normal and amputation is do-able. Ask any and all questions (there is no such thing as a stupid question here) and feel free to "vent" when necessary.

It will be OK in the long run..... :smile:

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Hi Guys.

Thanks so much for your messages. triggered lots of overdue tears, feeling abit more positive already! I find it hard to cry in front of my family about my leg, if Im honest Ive always just tried to hide just how much impact my accident had on me,its been 20 years of hard work to try and prove I could deal with it, as Shane said I am longing for a new, painfree chapter. I guess my biggest fear is what if it all goes wrong but I guess if you think like that you'd never take any chances. There are so many things I havnt done for years, run, gone swimming, worn a skirt!! Sounds silly but I really want to buy a decent pair of wellies to walk my dog (something else I havnt been able to do for a long time}

I havn't had much explained to me about the first few months post op. I will be at the roehampton for rehab which I have been told is fantastic but am a bit worried about my house, I can temporarily put my bedroom down stairs but have an upstairs toilet and bathroom. Is it hard to use cruthches with only one leg? Other than chronic muscle tension all over Im pretty fit and strong although my weight has crept up over the last two years because I cant get about so well. Before my accident in 1987 I was very fit and was in my counties athletic team! I used to ride too, does anyone know if its possible to ride with a prosthetic leg??

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Bicycles, motorcycles, or horses? :unsure:

Oh, well. Doesn't matter...cause the answer is a definite YES. :smile:

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Jacqui, there's very little you can't do one-legged. It sometimes takes a bit of "adaptation," but if something is important to you, you'll figure out a way to do it. Riding just about "anything" can be highly do-able...Shane's a good example of that one! Last summer, I went to see him ride motocross in the X-Games.

For me, I wanted to be able to keep on doing home-and-garden tours, hanging out at concerts, visiting museums, swimming, and shopping. All eminently do-able.

You may want to adapt your home for a while, but if you're good on crutches two-legged, the odds are that you'll be fine one-legged. (I have to offer a disclaimer here, as I've never been good on crutches with ANY number of legs, but I still managed to get about one-legged by hopping on a walking-frame.) I know a couple of our members who are absolute poetry on crutches!

With a good rehab team, you'll be prepared to function at home...promise!

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This was sent to us this weekend from a friend who was competing in Wellington, FL and got to watch this gentleman ride. He was competing very well in the I1 class (dressage). For those not familiar, the I1 class is a higher level and the riders are very proficient at what they do. We believe he his performing a "canter pirouette" here. I don't have a name for him- yet. Anyway...

WOW! :biggrin:

4401746129_18aaf91107_m.jpg

Cheryl, you might would have trouble recognizing me now. I haven't had a hair cut since X Games and well, not sure when the next one will be... :smile:

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Jacqui,

As for the crutches part, it is simply a matter of adaption, then there is nothing that should stand in your way! I wasn't able to walk on my diseased leg for 15 years before my amputation, and I was on crutches 24/7 for that entire 15 years. It got to the point where there wasn't much I couldn't do on them. I could carry a tray of food up or down a flight of stairs on them! In time, your skill level just naturally increases. When my leg was finally amputated, there was little change between walking on crutches with two legs, and with one. I just had to get used to balance without that weight on my left side, but that came very quickly. I was even able to forgo rehab time after my amputation surgery hospitalization because I already so skilled on crutches, they just let me go home. Now when I am not in my prosthetic leg, I am on my crutches and have been very fortunate that I have never had to use a wheelchair.

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Hi Jacqui, I'm ann (eag) and I am a LBK...just read what everyone has told you again ...you will be fine!! We all are here to comfort & give little quirks to make your life after amputation easier. As I said above YOU WILL BE FINE. :smile:

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Hi Guys,

Been for my pre op today at St Georges, passed the health check ( feel pretty healthy but you never know) !!! Ill be in theatre for quite a while and ITC for first night but it was all very positive, the nurses were brilliant and gave me lots of reassurance.

Thank you so much for all your posts, Ive read and re read them and am feeling so much more positive. Ive taken Higgys advice and have arranged to see a prosthetics guy next tuesday, the chat on the phone was very positive, they have alot of patients with grafts. The links you have sent have been really helpful and shane is just an inspiration!!! Ann, thanks for the info on the roehampton, the nurses at St georges confirmed what you said about how good they are!!

I know I have a challenge ahead but with such a fantastic family and support from people like you I find Im starting to look forward to better days, tonight I cant walk at all my foot is so bad, onto better things!!

Im hoping I can take my laptop into hospital so will be able to keep you all updated, they say Ill be in for about 8 weeks.

Just poured a big glass of red wine and intend to have a good weekend! Hope you all have the same!!

Thanks again

Jacqui xx

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Jacqui,

Just know that we will still be here when you get out, if you don't have access to your laptop...

I'm glad that you did call a prosthetist.. I think that you will find your visit very educational.. and one other thing....Please remember, if there is something that you don't quite understand, ask, ask and ask, until you do understand. It's your body, and you have the right to ask them to explain until you do understand. Never feel silly or that you are imposing on them.. that is why they are there..

Good luck and stay in touch until you go.. I'm sure that after Tuesday, you will have many questions.. we'll do the best we can to help.....

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This was sent to us this weekend from a friend who was competing in Wellington, FL and got to watch this gentleman ride. He was competing very well in the I1 class (dressage). For those not familiar, the I1 class is a higher level and the riders are very proficient at what they do. We believe he his performing a "canter pirouette" here. I don't have a name for him- yet. Anyway...

WOW! :biggrin:

4401746129_18aaf91107_m.jpg

Cheryl, you might would have trouble recognizing me now. I haven't had a hair cut since X Games and well, not sure when the next one will be... :smile:

Still no name, but he got 2nd out of 11(all able bodied)riders! WOW!!!!

Folks, don't draw lines. In reality, lines don't exist. :wink:

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Hi and welcome, Jacqui,

There isn’t much that I can add to what has already be written, but at the risk of getting shouted at by the more experienced members,

I would like to ask you why you need your bed down stairs?

Is it hard using crutches? no you will receive some training with them at hospital but if it was me I would go an get a pair now and start practising before hand , you will surprise yourself how easy it is to get around using them , including going up and down stairs .

The way I look at things is losing a leg is bad enough, but setting yourself self-imposed limits (like having a bed downstairs) is just adding to it.

For example if you sleep downstairs what happen if you need the toilet during the night?

(Don’t you dare use a bed pan?)

You will have to go upstairs to get washed and bathed, (you are planning to bath aren’t you?) so why have the bed downstairs?

Some people will tell you to move rugs (tripping hazards) and rearrange the furniture and make the home more Amputee friendly, personally I wouldn’t bother , your life is going to be spent learning how to adapted to different conditions , so the sooner you start the better . And as surprising as this might seem you will do fine, and in a couple of months you will be wondering what all the fuss is about.

Now on the down side having an arty foot makes it extremely hard to get wellies on, get yourself a good pair of hiking boots instead, the dog wont mind. And you will be able to walk much better and cover greater distances in them.

Take care and try not to worry too much (easy for me to say) you will be fine …………………………………Mick

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Hi and welcome, Jacqui,

There isn't much that I can add to what has already be written, but at the risk of getting shouted at by the more experienced members,

I would like to ask you why you need your bed down stairs?

Is it hard using crutches? no you will receive some training with them at hospital but if it was me I would go an get a pair now and start practising before hand , you will surprise yourself how easy it is to get around using them , including going up and down stairs .

The way I look at things is losing a leg is bad enough, but setting yourself self-imposed limits (like having a bed downstairs) is just adding to it.

For example if you sleep downstairs what happen if you need the toilet during the night?

(Don't you dare use a bed pan?)

You will have to go upstairs to get washed and bathed, (you are planning to bath aren't you?) so why have the bed downstairs?

Some people will tell you to move rugs (tripping hazards) and rearrange the furniture and make the home more Amputee friendly, personally I wouldn't bother , your life is going to be spent learning how to adapted to different conditions , so the sooner you start the better . And as surprising as this might seem you will do fine, and in a couple of months you will be wondering what all the fuss is about.

Now on the down side having an arty foot makes it extremely hard to get wellies on, get yourself a good pair of hiking boots instead, the dog wont mind. And you will be able to walk much better and cover greater distances in them.

Take care and try not to worry too much (easy for me to say) you will be fine …………………………………Mick

Hi Mick and thanks for your post. Thats an interesting point about my bed, I was moving it temporarily as the physiotherapists at the hospital said if my house was wheelchair friendly I could come home at weekends, apparently they dont like you to use crutches to early as you caan damage the stump while its healing. Your post has promted me to call the OT department to check though, I have to say it will be quite an upheaval to bring it downstairs!! Thanks for bringing it up. Ill let you know on Monday.

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Was also wondering if anyone can give me advice about driving, Ive had lots of mixed messages about cars etc. Id like to get back to it as soon as I can. Ive been told I might be fine to drive with a right leg prosthetic but I have to inform the DVLA, they might ask me to go for a driving assesment??? Also, does it affect your insurance??

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Hi Jacqui,

Speaking as an left above knee and driving,

No real problems with the insurance, had to inform them (still do every time I renew) no price hikes.

I drive an automatic……. again no problems

However the DVLA WHERE I RIGHT PAIN IN THE BACKSIDE took lots of phone calls, letters then finally I sent my old licence to them and eventually got the new modified licence back (can only drive autos).

I think the only reason the dvla where such a pain was because they where having computer problems at the time (or so they told me).

Have heard about driving assessments but have never met anyone who has done one:-sorry.

Hope this helps …………………..Mick

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Some people are able to drive with their prosthetic. I'm RBK and use a left foot adaptor. Got used to it almost immediately. For me, I feel it's safer. Now I can't imagine driving with any other foot.

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Hi Jacqui

some great advise and experiences on here, like youself I was riding a motorbike when I had the accident that resulted in my right BK amputation, decided very early after some pretty blunt advice to seriously consider an amputation or spend many hours in hospital in the next few years to come with no guarentees of any improvement, 3 weeks later, plunge was taken.

I used crutches almost immeadiatly against the occupational theprypists advice, to begin with very tiring, but you soon get used to it.

I drove my automatic left footed days after coming outta hospital, told dvla about my amp, had my licence restricted to adapted cars, decided to try manuals on private land, got on well, contacted dvla who told me it was self regulating and got my manual licence back with very little effort, now drive a manual with no adaption in the normal manner just push from the knee instead of the ankle. I also am back to riding my Honda Pan European, big bike for two legged ppl LOL bike did take 3 months to get back on mainly due to confidence to hold bike up on it. It is illegal to load your insurance due to disability.

Was also wondering if anyone can give me advice about driving, Ive had lots of mixed messages about cars etc. Id like to get back to it as soon as I can. Ive been told I might be fine to drive with a right leg prosthetic but I have to inform the DVLA, they might ask me to go for a driving assesment??? Also, does it affect your insurance??

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