|
Post by happyem on Jan 9, 2013 15:19:20 GMT -7
Introduction it is then! I'm Emily and I've been a right BKA for 4 years now and as of 31st January will be bilateral. Injured both feet/ankles pretty badly 19 years ago and they were never quite the same again. The right was always the worst and the amputation 4 years ago really gave me a new lease of life. Only problem was that the more active I got, the more pain I was in from the left foot/ankle. I made the decision to go for a second amputation rather than opt for more fusion after a lot of soul searching. I have a partner, 3 children aged 16, 3 & 1 and a very busy full time job. I've been down the 'fuse everything in sight' route before with my right foot and have already had some fusion of my left and I'm not willing to spend my little ones' childhood in pain and feeling low and snappy all the time. I'm really hoping that this surgery will be as straightforward as the last. I've been very fortunate in that the only problem I've really had with stumpy (as the children call it) is a neuroma that they're planning to remove at the same time as the amputation. So, I'll be pretty much out of action for a while,but I'm really looking forward to being back in that place where things are getting a little bit better every day, rather than that little bit worse.
So, if anyone has any useful thoughts, ideas or experiences that could help me along the way, I'd be really glad to read them..
|
|
|
Post by stonecutter on Jan 9, 2013 19:36:17 GMT -7
Hi Emily,
Welcome to the forum! Always good to meet new people, even under less than the happiest circumstances.
Thanks for sharing your story, and please do keep us posted on your progress.
Again, welcome aboard!
|
|
|
Post by barclay on Jan 10, 2013 0:27:15 GMT -7
Hi - My son's childhood (he was 9-12 during the trying to fix it time) also played a major role in my decision for the amputation and it was the right choice. Formative years only happen once. I hope the surgery goes well for you and them ! best, cynthia
|
|
|
Post by ann- on Jan 10, 2013 2:03:16 GMT -7
Hi Emily, Do recognize your name and think we might have spoken on UK amps. I too am in the UK and have been a bilateral b/k for many years, I also have brought up three children as an amputee, but I was already in that position before I had the children, who are now all grown up and I think reasonably well-adjusted, so although it can be hard work, it is all do-able and my children, I think have grown up taking it pretty much for granted.
Little story here that might make you smile is, recently we were all talking together and one of my grown up children had slipped on the stairs, the conversation continued and we got talking about carrying babies downstairs, and I mentioned how when I had my eldest, I remembered the health visitor getting a bit twitchy about me carrying this new baby down the stairs ... so one of my grown up children , looked up and said 'that most parents carry children up and down stairs, so didn't see why the HV would be concerned', lol, so I reminded them that it was probably because I was walking on two prosthetic legs, we laughed, he hadn't even given it a thought when he said it. So think it goes to show how much it becomes ordinary to them.
I think when the children are toddling is probably the most physically tiring time as an amputee mum, as they very quickly get to out-run you, or that is what I found, you had to almost be one step ahead of them mentally and think about what they were probably going to do next. Probably the same for all parents, but as an amputee you can't always dash after them, though you do get good at doing that ... so until I was reasonably sure they weren't going to run off when we were out, mine were a bit restricted in that they were on reins to keep them close, and if I was on my own with them would take them to enclosed play parks, they used to get a lot more freedom when out with my husband and friends would often take them off to things too.
What you might, or might not find is that initially, the rehab side of walking as a bilateral is really tiring, so best tip would be not to turn down help with anything regards housework, children etc. etc., I have gone thro rehab a couple of times, again a few years ago after a revision, imagine am slightly older than you, but found for some weeks didn't have energy for much other than the physio and wheeling myself around, in the evenings I would, just sleep, but it was just temporary and you do build up your strength bit by bit. Though I imagine if you are working with three children already, you are probably already super organized, and imagine that will be what really helps when you become a bilateral. Good luck with it when you have the surgery, and as others have said, keep us posted.
Ann
|
|
|
Post by dawnbbka on Jan 13, 2013 1:27:12 GMT -7
Hi Emily, Welcome to the board. Going from one amp to two was not easy for me. Just take it slow and be gentle until it all heals. I wanted to get up and go and did more damage than it was worth. I think Ann said it best about being one step ahead with the kids. My granddaughter lived with us her first year and it was actually easier than I thought. I completely understand about being in pain and snapping at the ones closest to you. Once I was out of that pain, a whole new beautiful world opened up.
|
|
|
Post by happyem on Jan 13, 2013 16:34:22 GMT -7
Thank you all for the welcome and the advice, Ann I had to laugh at your suggestion that I might be super organized. Sadly that couldn't be further from the truth (as I'm sure my staff, friends and family would confirm I'm suddenly getting a little bit panicky, not so much about the surgery itself because I feel like I know what to expect there, but about the recovery period. To cut a long story short we live in a fairly inaccessible house so I'll be pretty much confined to the dining room (where we'll be sleeping) and the living room, apart from trips into the back porch where we're setting up a camping toilet. The rest of the house has steps/stairs and there are 6 fairly steep steps up to the front door. I'm worried that I'll be getting cabin fever after a few days, at least the family are used to me being stroppy and irritable already Ann I know what you mean about not being able to chase children fast enough, some days I dream of having a sheepdog who could round them up for me. Dawn it's really good to hear from someone who's gone from single amp to bilateral. Can I ask how far apart were your amputations? How different is it to have two prosthetic legs? Anything that you could do when it was one that you've found more difficult/impossible with two?
|
|
|
Post by dawnbbka on Jan 14, 2013 12:37:52 GMT -7
Hi Emily, My amputations were 7 years apart. I did pretty well after the first amp. The wound healed and I jumped back to normal pretty quick. I did not do well after the second amp. The wound opened and got infected and took over a year to heal. Thats why I suggested to take it real easy til it all heals up. After I got the second prosthesis, it was different and difficult. A lot had to do with me being in the wheelchair for a year. Today I am much better. I can walk without a cane but still use the wheelchair for long extended walks. When I am home, I do not use the prosthetics. I find it much easier to do things on my hands and knees. That is how I managed with my granddaughter. I find I can catch her faster that way and she loves it. This is just me. It may be different for someone else. Stairs and ramps and uneven surfaces are hard for me. The only thing I don't do now that I did before is bowling and swimming and I am going to go swimming soon. It is an adjustment. I suggest let the wound heal completely then get on the legs asap. What is the barriers keeping you confined to a small space in your house? I hope this helped.
|
|
|
Post by happyem on Jan 15, 2013 15:08:13 GMT -7
Thanks for the insights Dawn, I tend to 'bum shuffle' when I'm not wearing my prosthesis but haven't done hands and knees much because I find it uncomfortable on my fairly bony right knee. Did you find you got used to it? We don't have carpets so I'm thinking I might invest in some knee pads. The issue with the house is that there are steps and stairs everywhere. 6 steps up to the front door, another step inside the front door, a step into the kitchen, upstairs there's the bathroom and my eldest son's bedroom up the first flight of stairs and then another short flight up to our bedroom. The only bit of the house that's on one level is the dining room and living room, so that's where I'm going to have to be based, at least for the 1st bit of recovery time. We've tried to get rehoused but have had no luck. We're in private rent, so the local authority are reluctant to spend money on adaptions to this house (not that it's very adaptable anyway) and we can't afford to. It's hugely frustrating, I'm aiming for 2 nights in hospital after the surgery and home as soon as possible (mainly because the children are so young and so reliant on me) but I know that it's going to be hard work managing here. Still it will be good to be on that road to recovery again, knowing that I'm making progress, however slow and however small.
|
|
|
Post by dawnbbka on Jan 15, 2013 19:21:26 GMT -7
Emily, That is horrible the housing authority won't make exceptions for you. My husband and I had a bi level house. We sold it when the economy was good and was able to make a profit to buy a ranch home. My brothers built a ramp to get into the house from the garage. I do have knee pads that I use on fishing trips to get on the dock and into the boat. Cement and wood is hard on the knees. The local tile/carpet store donated huge thick carpet fragments that we put in the rooms that had no carpet. Prior to that I had little pillows or would use a towel for each knee and slide myself on the floors. I know exactly what you meant with the butt shuffle. You do what you have to do to get it done. You will be okay. Somehow it all works out.
|
|
|
Post by ann- on Jan 16, 2013 0:43:34 GMT -7
Echo what Dawn is saying here, do allow time for yourself to heal up completely, it does pay off further down the line, I had to wait to get to rehab and found it 'so' frustrating as thought I should be further on, but when I got there found that I didn't get problems with the wound when I started on the leg, so in the long term I think it did me a favour. Likewise, take care not to fall on the stump esp in the early days, keep reminding yourself that the foot has gone, its really easy to go to get up without thinking ... even with the revision after nearly 40 years I had to keep reminding myself in the initial weeks, because the 'foot' felt more 'there' than it had ever done before. Have seen so many people who have fallen, some had to have it re-stitched etc. etc., which has held them up.
Hope you've got lots of help with the children Emily, I don't think just two days in after my op I could have managed very well, I was in for 8 days and when I came home didn't have much strength and bit dopey, which might have been due to the pain meds, but you're probably going to need those for a while too.
Do watch your knees girls, when I was younger i too used to use my knees all the time, at night when I used to get up to the children etc. etc. that was the way I did it, but Dawn is right about hard floors, they do hurt, padding helps, and I also find some wooden floors a bit slippy to walk on. But it does take its toll on your knees as the years go on (which if you are bilat b/k you want to preserve), I was actually advised to stop doing this and to take more care of my knees, and my reason for getting a wheelchair some years back, because it was beginning to take its toll.
Years ago, I used to walk and wear the legs 24/7, these days not so much, though like Dawn again, always try and use them outside, just because its easier, we live fairly rurally so getting the wheelchair in and out the car and room with parking, without legs on, is a work out in itself. Indoors though I use the chair here and there, mainly because of resting the skingraft ... and because of late, problems with the prosthetics. I find some I have days where I can walk further than others, energy I find a big thing too, and a lot will depend on what else I've been doing, though years ago this wasn't so much a problem, but it all really rests on how well the prosthetics are fitting me.
Getting housing adaptations done, I have also found, is not as easy as one imagines it would be these days, so understand the difficulties. You can though borrow ramps and other equipment from the Red Cross, temporarily. You might also find that they are able to help out with other things Emily, like shopping etc. etc.
|
|
|
Post by dawnbbka on Jan 16, 2013 9:51:06 GMT -7
Ann has shared some really good suggestions. There are people out there that will volunteer. You have to look around and call. High schools have childcare classes and the students need so many hands on hours to pass. Boy/girlscouts? May want to look and set up prior to the surgery. I didn't think about the knees until ann mentioned it but I do have arthritis in them. It may get worse later down the road but I find it much easier than moving my wheelchair through the house. I broke a finger going down the hallway. I should have known it was a tight sqeeze. :)The only changes made to the house was the ramp in the garage. I use a shower chair. I use a grabber for getting things in the upper cabinets but keep everything I use frequently in the lower ones. I drive a regular car without hand controls. I did look up at the drivers licensing place and should notify them of the prosthetics. It hasn't caused my any problems driving with them. I was thinking back when my granddaughter was living here and how I adapted to her needs. I had the diapers laid out and bottles made out for the day. Other than that I did what needed to be done. I have two granddaughters now and babysit frequently. They both love having me on my knees chasing them around. My one granddaughter sat next to me when she was about a year and a half and I could tell she knew something was different with me. She pulled up her leg pants and tried to hide her lower legs under her thighs. It was the cutest thing. Funny how it isn't a big deal to them when they grow up with it. Emily, you will do great. You have been through so much. It is a huge relief getting out of that pain.
|
|
|
Post by ann- on Jan 17, 2013 2:52:47 GMT -7
Like Dawn says, young children just seem to accept how you are and the way you do things, though I think I did some things differently with each of them, depending on what worked at the time, but you'll find your own way of getting round things Emily. I would take advantage of every labour saving device you can get your hands on though, it certainly makes life easier and less tiring. Regards Driving in the UK though, the DVLA has to know and they will probably stipulate you drive on hand controls .... actually I find this has advantages, in that you can drive without your legs, which is useful on long drives if their not comfy. Dawn, I smiled when you mentioned the 'grabber' I don't actually have an official one, but I use some BBQ tongs which work a treat, though freak my hubby out, when I use them to get things off high shelves! I don't have any adaptations indoors either, except a small rail by the loo, we have a shower over the bath, but I tend to use the bath, shower chairs with wheels are good, but I don't find the ones with small seats fixed to the wall or whatever, very good. At the moment though am in the process of getting my front doorway made more accessible for the wheelchair, but thats because I've been having probs with the prosthetics the last year. Wheelchair-wise, with the NHS, you might struggle with getting one that you can use indoors, I found it easier to access the voucher scheme and get my own, with very small wheels at the front which gives you much more turning in small spaces. Disadvantage is its not so good outdoors, but I use it mainly inside.
|
|
|
Post by happyem on Jan 18, 2013 16:36:01 GMT -7
Thanks again for the support and advice. It's so good to hear from other people who 'get it'. My family are incredibly supportive. My partner is a stay at home dad so will be around to help with the children and my mum is coming to stay for a while. It's strange, the surgery date is less than 2 weeks away now and I'm feeling more apprehensive, but also reflecting on how life will be without this constant pain and feeling quite calm. I've spent today playing in the snow with the children, which was difficult and left me in a lot of pain, but it felt important to do that, to make some happy memories before we go into the next stage. I know that for a while I'm not going to be able to be the hands on, active person I want to be, for them and for me. As far as driving goes, that's one thing I'm not worried about. I've driven on hand controls since the original accident, when I was 19. I guess it might be 'interesting' though, trying to transfer with no legs. I've got a wheelchair review next week because I don't think my current one is going to work out with the set up I've got - far too tippy with no weight at the front and I'll need stump boards both sides because of the neuroma op on te existing stump. I've also got the OT coming to visit so we'll see if she's got any suggestions on managing at home. Thanks again for being there :-)
|
|
|
Post by dawnbbka on Jan 18, 2013 17:11:27 GMT -7
I forgot about the different healthcare in the UK. My husband has awesome insurance through his work so I have been very lucky. I heard the Medicaid here only puts out $1,000/year in durable medical equiptment. Also, I have renewed my DL twice since the amp. This last one I was able to do on line. The doctors aren't mandated to inform of disabilities and they don't seem concerned unless something happens. Ann- so sorry to hear about your legs. It took me two years to get good fitting ones. Paperwork was the reason they gave me. Emily-you are in my thoughts and prayers. I know what your feeling-my second was a scheduled one. I know that apprehension and the mind thinking all different thoughts. After the wound finally healed-I wasn't at the doctors every month or two, the pain was reduced tremendously, and lfe went on. Now I am going to go swimming for the first time in many many years and looking forward to that. We will be here for you Emily and support you any way we can.
|
|
|
Post by happyem on Jan 30, 2013 12:26:03 GMT -7
All set then. Going in at 7am tomorrow morning, lets hope I'm fairly early on the list, I find it hard hanging around but I guess that's the same for most people and somebody has to be last. OT has been round so I'm all set up with stump boards, commode and various other bits and pieces to make life more manageable. The children are, I hope, as well prepared as possible but the littlest is 18 months so doesn't really understand any of it. I'm sure they'll manage. Still a mixture of fear and excitement going on. I really don't want to be in loads of pain any more and since I've been overdoing it a bit these last couple of weeks I've had a good reminder of exactly why I'm doing this. GP has been really good and given me lots of morphine, so I'll be going into surgery as pain free as possible with the pre-op epidural as well. See you on the other side...
|
|
|
Post by stonecutter on Jan 30, 2013 12:52:17 GMT -7
Good luck! Let us know how hit went. We'll be waiting...
|
|
|
Post by ann- on Jan 31, 2013 0:25:44 GMT -7
All set then. Going in at 7am tomorrow morning, lets hope I'm fairly early on the list, I find it hard hanging around but I guess that's the same for most people and somebody has to be last. OT has been round so I'm all set up with stump boards, commode and various other bits and pieces to make life more manageable. The children are, I hope, as well prepared as possible but the littlest is 18 months so doesn't really understand any of it. I'm sure they'll manage. Still a mixture of fear and excitement going on. I really don't want to be in loads of pain any more and since I've been overdoing it a bit these last couple of weeks I've had a good reminder of exactly why I'm doing this. GP has been really good and given me lots of morphine, so I'll be going into surgery as pain free as possible with the pre-op epidural as well. See you on the other side... You'll be on your way in now, Emily, but good luck, am thinking of you.
|
|
|
Post by happyem on Jan 31, 2013 16:42:38 GMT -7
All done. It's been a fairly horrendous day but at least it's over with. Will post more when I'm up to it. I now have a matching pair ;-)
|
|
|
Post by stonecutter on Jan 31, 2013 20:02:35 GMT -7
Feel better...
|
|
|
Post by happyem on Feb 2, 2013 9:40:38 GMT -7
Just wanted to send an update; amputation and neuroma surgery went really smoothly, hospital stay has been kind of mixed, some really good staff and others who make me wonder why they entered the 'caring' professions. It's day 3 and I'm all ready to go home except it looks as though the neuroma wound might be infected, so now I have to wait again to see the Dr. They've just changed the dressing on my new stump and I have to say it looks and feels like a real bodge job. The dressing they took off was put on in theatre, lots of padding and felt perfect in terms of tightness. The bandaging that I've just had done feels too tight, no padding and I think she managed to put the adhesive part of the dressing on the edge of the wound and on one of the stitches, so that's going to be a joy when the time comes to take it off again. Anyway, enough moaning. I'm really glad to have the surgery out of the way so I can focus on getting better and getting walking again. Thanks again for all the support :-)
|
|
cate6
Female Member
Posts: 75
|
Post by cate6 on Feb 2, 2013 10:37:14 GMT -7
Hi Emily. I don't know how I missed this thread until now! I hope all is well and you are recovering well. I have a few questions, did they not remove the neuromas? Are you in the UK? If so which hospital? Good luck for a speedy recovery
|
|
|
Post by ann- on Feb 2, 2013 10:56:28 GMT -7
Hi Emily, glad its all done you're on your way home again and welcome to our elite group of female bilaterals, there's not many of us around.
|
|
|
Post by barclay on Feb 3, 2013 0:11:35 GMT -7
Oh Dear, I am sorry to hear that you don't feel confidence in the caregivers! That's an additional burden one really doesn't need. My experience is that the more empathy I show the nursing staff, the better the care is they give me. I don't know if that's useful to you or not, but it's all of can think of. I hope that it was just one bad day for them (and you).
|
|
|
Post by allenuk on Feb 3, 2013 3:15:44 GMT -7
I remember the theatre dressing I got at Stanmore, Em. I'd had plaster casts on my duff leg for ages (over a year), so was used to the top-quality ones you get in a proper plaster room, but this thing they slapped on in theatre. Well, I could have done better myself! The edges weren't finished properly, there were bits of plaster hanging off. Awful thing. Although I suppose it did the job. They cut it off after a couple of days, and redressed the wound. The first time I saw the cut I had me doubts, too - I somehow thought 'stapling' was a highly technical medical procedure, but I think they might have used an office stapler. Great big bits of metal, not particularly straight.
But after the 4 or 5 weeks, out they came (fairly easily) and the subsequent wound had healed, until after a few months it looked like me rather than something alien.
Moan away, it'll take your mind off worse things, and (as you already know) things will get better.
Best wishes,
Allen.
|
|
|
Post by dawnbbka on Feb 3, 2013 17:20:48 GMT -7
Thinking of you and sending good thoughts your way. There aren't too many healthcare professionals who can do the appropriate dressings and figure 8 wrap on the stumps. The ortho floor I was on couldn't even do it correctly. If you are not satisfied, ask them for more padding. Are you getting antibiotics? I hope you are on your way home today. Remember, TAKE IT EASY. Let everyone else worry about everything else.
|
|