Is anyone on here an amputee or know of someone who is and how do they deal with it?
Long story made short. My son who lives up in Biggenden will be having his left leg amputated in the next year or so. Probably around the knee area.
Specialists told me when he was little he would be lucky to make it to 21 without losing it, he will be 40 next year. He has accepted it has to happen and explains to me how much better he will be without, will have a better quality of life and be able to do things he's never been able to do and that others have been able to do that he couldn't.
Because he was born with this condition, a congenital vascular deformity, I've always felt it must be something I did, not that I know what that was and as its very rare nobody else knows either.
I know I am going to have problems dealing with it as the time comes nearer even though son says it's no big deal.
milo said
09:54 PM Nov 15, 2011
struth Marj, thats rough going.. I had a fall about 3 years ago , and lost 90 % of my mobility i went to a specialist after a total misdiagnosis from my gp any way they gave me a few months before id be in a wheel chair for life and said i needed to have a very delicate spinal cord op.. which i did have.. thankfully it all worked out.. it was a very dicey and scary thing to go thru.. im sure he is scared and ok with it all at the same time as i was.. good luck..
pauline said
10:03 PM Nov 15, 2011
Marj, when I read this post I feel so bad for having a whinge over the last couple of days, really have nothing to worry about at all, hope it all works out for the best........
goinsoon said
10:05 PM Nov 15, 2011
I agree Pauline, I was going on about my polymyalgia and I will recover from that, my heart goes out to you and your son
Happywanderer said
10:22 PM Nov 15, 2011
Thanks milo, pauline and goinsoon. Its something we have known would happen since he was a little boy but I always hoped it wouldn't. Always hoped they would come up with a miracle cure. But you can only cope so long with a loss of normal veins, blood clots, a life of warfarin, bandages, ulcers and numerous operations.
-- Edited by Happywanderer on Wednesday 16th of November 2011 07:25:04 PM
goinsoon said
10:25 PM Nov 15, 2011
Happywanderer wrote:
Thanks milo, pauline and goinsoon. Its something we have known would happen since he was a little boy but I always hoped it wouldn't. Always hoped they would come up with a miracle cure. But you can only cope so long with a loss of normal veins, blood clots, a life of wolferen, bandages, ulcers and numerous operations.
I know what you mean Marj, we only want the best for our kids don't we and they always are the kids, no matter how old they are. I would gladly die for mine
animalcarer said
10:46 PM Nov 15, 2011
Gee thats real tough hon, my thoughts and prayers are with you and your son at this time, lets hope he gets the result it wants, the rehab people are marvellous .
Gerty Dancer said
09:16 AM Nov 16, 2011
Cry on our shoulders as much as you like Marj, its just awful to see your kids having unthinkable things happen to them. And I'm sure you'll be strong for your son, as he seems to be very positive about his op, and might need his positivity re-inforcing sometimes. You might be surprised to see he really is much better without it.
As far as you doing "something" in your pregnancy to cause this, have you considered all the chemicals our generation and our parents were exposed to? DDT for one, is now known to cause genetic defects in animals, I have a theory that it cant be good for human babies either. My 2 sons have "something wrong", and I'm quite certain it was because their father got sprayed with Agent Orange in Vietnam.
One of my uncles lost a leg in the war at the age of 20. He lived a full life, raised his kids, had hobbies etc, didnt appear to be limited, certainly not in his outlook. He preferred crutches to artificial limbs but the modern prosthesies are much better.
Hang in there Marj
ozi2 said
11:10 AM Nov 16, 2011
Happywanderer wrote:
Is anyone on here an amputee or know of someone who is and how do they deal with it?
Long story made short. My son who lives up in Biggenden will be having his left leg amputated in the next year or so. Probably around the knee area.
Specialists told me when he was little he would be lucky to make it to 21 without losing it, he will be 40 next year. He has accepted it has to happen and explains to me how much better he will be without, will have a better quality of life and be able to do things he's never been able to do and that others have been able to do that he couldn't.
Because he was born with this condition, a congenital vascular deformity, I've always felt it must be something I did, not that I know what that was and as its very rare nobody else knows either.
I know I am going to have problems dealing with it as the time comes nearer even though son says it's no big deal.
Hi Happy Wanderer, what a courageous achiever your son is, he has dealt with the issue's for 40 years, long past the original estimate and he has such a positive outlook on the outcome of pending surgery.
I have no doubt that with such a positive frame of mind that he will do well and continue to live his life on his terms. I understand your concern and all our best wishes go to you and your son.
cheers,
ozi2
Happywanderer said
11:23 AM Nov 16, 2011
Thanks animalcarer, gerty dancer and ozi2. I'm sure he will deal with it better than I will. But I will make sure I am up there supporting him, sitting by his side and just about sleep at the hosp when he is going through it. If I can spend every day at the Alfred and ABI unit for 10 and half weeks after his truck accident, I'm sure I can deal with this. Once I get over that it's really going to happen.
Geez Happy, a gorgeous grandson and son to be proud of....what more could anyone want hey?
cheers,
ozi2
Cruising Granny said
05:55 PM Nov 16, 2011
Well Marj, for you it's sad news, to have to watch your son go through this surgery and recuperation. I have a feeling it's about quality of life - your son's. He's already told you he's come to terms with it, and is sort of, looking forward to it. I doubt you did anything during your pregnancy, but we mothers are inclined to blame ourselves for everything that goes wrong with our kids. Can you change it now? Can you undo it? Yes, your son has to have his defect leg amputated, but with replacement limbs these days, he'll probably be better off, if the leg has been giving him pain and trouble. Medical science has made wonderful progress, and these days there are so many options which will improve HIS quality of life. Losing the troublesome part of the leg is a blessing for your son. I blame myself for the troubles my youngest gets herself into. I'm sure she has some personality disorder, but she can't be harnessed long enough to be assessed to be treated. According to her enveryone else is wrong, guilty or whatever, not her. She's violent and it has cost her several terms in gaol. I love her but will not tolerate her behaviour. We haven't talked for more than 8 years. She's contacted me on Face Book, but it's just to suck up because she's in trouble again. You've know your son's leg is unhealthy all his life. This surgery is inevitable to improve his overall health and quality of life. He's still the same man. You're lucky you are part of his life.
Happywanderer said
06:31 PM Nov 16, 2011
Absoluterly CG. Understand all that you are saying. It is so good to get everyones point of view on here, just makes it all feel better. Yes, he has been in pain 24/7 since he was a little boy, Has always had to wear an elastic stocking and has never been able to wear normal shoes or boots as the foot is so swollen and burning hot all the time. Has been on and off warfarin most of his life, the last few years permanently. He also made it into the NZ Medical Journal many years ago as a rare medical phenomenom. (spelling) A few months ago he took the kids swimming in the town pool at Biggenden, His leg bled and filled the pool with blood. They had to close it down for cleaning and rush him to hosp to stem the bleeding. We all had a laugh about that one. We do laugh a lot about it, you have to really. Oh, and when he sits or lies down he has to elevate his leg to take the pressure off.
-- Edited by Happywanderer on Wednesday 16th of November 2011 07:26:38 PM
Travel Bug said
06:33 PM Nov 16, 2011
Marj, I really feel for you. No matter how old they are, when our children are hurting...we are hurting.
I can't offer any up to date, first hand knowledge, but perhaps if you could talk with someone who really knows what is involved, it may help.
I was intending to insert a link to somewhere helpful....but when I went to Google there were so many sites that it might be worthwhile having a look.
I just typed in "support group for families of amputees" and several came up.
Good luck...and take care. Pam.
-- Edited by Travel Bug on Wednesday 16th of November 2011 06:34:30 PM
Elle on Wheels said
09:55 AM Nov 17, 2011
So sorry to hear about your son and I hope the operation goes well. As others have said there are excellent rehab sevices and prosthetics and I'm sure the relief from continual pain will be welcome for him. He's lucky to have a great mum to support and be there for him.
Esmeralda said
09:55 PM Nov 17, 2011
Hey Marj - I hope all goes well for Stephen when the time comes. You know that we will support you both as much as we can.
Cheers, Helen
jules47 said
06:15 AM Nov 18, 2011
Marj - you know we are all thinking of you and your son - I hope it will all go well for him - and as someone else said, modern technology with prosthetics is amazing - and so much depends on attitudes - both his and the people around him. We have two guys here in town, both in wheelchairs for life, from car acccidents - their attitudes to the same thing is totally opposite to each other. One is positive, always up for a laugh, socialises, flirts, just an amazing man. The other sees the negative side of life - oh, this supermarket is the only one in town, and I can't get in because there isn't enough room for a wheelchair - which is not true, the first guy is in there often - usually hanging round the meat cabinet taking advantage of some cool air!
Anyway - good luck for it all, take care.
Happywanderer said
10:02 AM Nov 18, 2011
Was talking to him last night. he has already had a phone call from the hospital acknowledging they had received the referral letter and checking his previous address. He's got a positive attitude about the reason why it has to happen. Now they have got the ball rolling so to speak he's getting a bit nervy, but it will be a long road, vascualr surgeons checking it out with dye running through the veins, ultra sounds etc. Lots of visits to different people so could take some time which gives us all plenty of time to adjust. Some people are so funny, not. I emailed my sister about the news. Hadn't heard from her for a while, so rang her the other night. She hadn't rung lately as was so spooked out by the whole thing, didn't know what to say to me.
HeadnHome said
07:40 PM Nov 18, 2011
Hope all goes well for your son Marg, and having your support and being there with him will help him heaps, regarding how other people react its hard to take, after the death of my husband, some people I thought would definately be there for me weren't while others I hadn't heard from for years were suddenly back in my life and were the ones that helped me keep going, some people just can't handle certain situations, don't take it personally I'm sure they are thinking of you both.
animalcarer said
10:01 PM Nov 18, 2011
yep agree Headnhome, some people just cant hack it. They cruise along thru life and nothing disasterous happens, so they have no experience with coping with stuff. Its hard not to take it personally. but just concentrate on yourself and your boy at the moment. Hes in good hands with a mum like you Marj. Have a great weekend.
Vic said
02:33 AM Nov 19, 2011
Sorry to hear the news Marj, some of us don't appreciate just how lucky we are, and some of us do.
We will all be thinking of you and your son and his family in this difficult time, hope that gives you some comfort in the time ahead.
milo said
12:36 AM Dec 5, 2011
never take your health forgranted.. hope he's ok marj,
Happywanderer said
02:35 PM Dec 5, 2011
He's upbeat about it at the moment milo. Might be a different story when the time gets near.
Sue & K said
04:11 PM Dec 8, 2011
I don't normally read these much but did notice this one. Like the others Marj I do feel for you and your son. My hubby had a arm amputated many years ago and manages very well. I know it may be harder losing a leg but it's surpriseing how the body compensates for any missing limb.
Hubby does all the gardening and most of the driving when we are on the road.
Is anyone on here an amputee or know of someone who is and how do they deal with it?
Long story made short. My son who lives up in Biggenden will be having his left leg amputated in the next year or so. Probably around the knee area.
Specialists told me when he was little he would be lucky to make it to 21 without losing it, he will be 40 next year. He has accepted it has to happen and explains to me how much better he will be without, will have a better quality of life and be able to do things he's never been able to do and that others have been able to do that he couldn't.
Because he was born with this condition, a congenital vascular deformity, I've always felt it must be something I did, not that I know what that was and as its very rare nobody else knows either.
I know I am going to have problems dealing with it as the time comes nearer even though son says it's no big deal.
I had a fall about 3 years ago , and lost 90 % of my mobility
i went to a specialist after a total misdiagnosis from my gp
any way they gave me a few months before id be in a wheel chair for life
and said i needed to have a very delicate spinal cord op.. which i did have..
thankfully it all worked out.. it was a very dicey and scary thing to go thru..
im sure he is scared and ok with it all at the same time as i was..
good luck..
I agree Pauline, I was going on about my polymyalgia and I will recover from that, my heart goes out to you and your son
Thanks milo, pauline and goinsoon.
Its something we have known would happen since he was a little boy but I always hoped it wouldn't.
Always hoped they would come up with a miracle cure. But you can only cope so long with a loss of normal veins, blood clots, a life of warfarin, bandages, ulcers and numerous operations.
-- Edited by Happywanderer on Wednesday 16th of November 2011 07:25:04 PM
I know what you mean Marj, we only want the best for our kids don't we and they always are the kids, no matter how old they are. I would gladly die for mine
Gee thats real tough hon, my thoughts and prayers are with you and your son at this time, lets hope he gets the result it wants, the rehab people are marvellous .
As far as you doing "something" in your pregnancy to cause this, have you considered all the chemicals our generation and our parents were exposed to? DDT for one, is now known to cause genetic defects in animals, I have a theory that it cant be good for human babies either. My 2 sons have "something wrong", and I'm quite certain it was because their father got sprayed with Agent Orange in Vietnam.
One of my uncles lost a leg in the war at the age of 20. He lived a full life, raised his kids, had hobbies etc, didnt appear to be limited, certainly not in his outlook. He preferred crutches to artificial limbs but the modern prosthesies are much better.
Hang in there Marj
Hi Happy Wanderer, what a courageous achiever your son is, he has dealt with the issue's for 40 years, long past the original estimate and he has such a positive outlook on the outcome of pending surgery.
I have no doubt that with such a positive frame of mind that he will do well and continue to live his life on his terms. I understand your concern and all our best wishes go to you and your son.
cheers,
ozi2
I'm sure he will deal with it better than I will. But I will make sure I am up there supporting him, sitting by his side and just about sleep at the hosp when he is going through it.
If I can spend every day at the Alfred and ABI unit for 10 and half weeks after his truck accident, I'm sure I can deal with this. Once I get over that it's really going to happen.
This is my son Stephen with his little boy Connah
Geez Happy, a gorgeous grandson and son to be proud of....what more could anyone want hey?
cheers,
ozi2
I have a feeling it's about quality of life - your son's. He's already told you he's come to terms with it, and is sort of, looking forward to it.
I doubt you did anything during your pregnancy, but we mothers are inclined to blame ourselves for everything that goes wrong with our kids. Can you change it now? Can you undo it?
Yes, your son has to have his defect leg amputated, but with replacement limbs these days, he'll probably be better off, if the leg has been giving him pain and trouble.
Medical science has made wonderful progress, and these days there are so many options which will improve HIS quality of life.
Losing the troublesome part of the leg is a blessing for your son.
I blame myself for the troubles my youngest gets herself into. I'm sure she has some personality disorder, but she can't be harnessed long enough to be assessed to be treated. According to her enveryone else is wrong, guilty or whatever, not her.
She's violent and it has cost her several terms in gaol. I love her but will not tolerate her behaviour. We haven't talked for more than 8 years. She's contacted me on Face Book, but it's just to suck up because she's in trouble again.
You've know your son's leg is unhealthy all his life. This surgery is inevitable to improve his overall health and quality of life. He's still the same man. You're lucky you are part of his life.
Absoluterly CG. Understand all that you are saying. It is so good to get everyones point of view on here, just makes it all feel better.
Yes, he has been in pain 24/7 since he was a little boy, Has always had to wear an elastic stocking and has never been able to wear normal shoes or boots as the foot is so swollen and burning hot all the time. Has been on and off warfarin most of his life, the last few years permanently.
He also made it into the NZ Medical Journal many years ago as a rare medical phenomenom. (spelling)
A few months ago he took the kids swimming in the town pool at Biggenden, His leg bled and filled the pool with blood. They had to close it down for cleaning and rush him to hosp to stem the bleeding. We all had a laugh about that one. We do laugh a lot about it, you have to really.
Oh, and when he sits or lies down he has to elevate his leg to take the pressure off.
-- Edited by Happywanderer on Wednesday 16th of November 2011 07:26:38 PM
Marj, I really feel for you. No matter how old they are, when our children are hurting...we are hurting.
I can't offer any up to date, first hand knowledge, but perhaps if you could talk with someone who really knows what is involved, it may help.
I was intending to insert a link to somewhere helpful....but when I went to Google there were so many sites that it might be worthwhile having a look.
I just typed in "support group for families of amputees" and several came up.
Good luck...and take care. Pam.
-- Edited by Travel Bug on Wednesday 16th of November 2011 06:34:30 PM
Hey Marj - I hope all goes well for Stephen when the time comes. You know that we will support you both as much as we can.
Cheers, Helen
We have two guys here in town, both in wheelchairs for life, from car acccidents - their attitudes to the same thing is totally opposite to each other. One is positive, always up for a laugh, socialises, flirts, just an amazing man. The other sees the negative side of life - oh, this supermarket is the only one in town, and I can't get in because there isn't enough room for a wheelchair - which is not true, the first guy is in there often - usually hanging round the meat cabinet taking advantage of some cool air!
Anyway - good luck for it all, take care.
He's got a positive attitude about the reason why it has to happen. Now they have got the ball rolling so to speak he's getting a bit nervy, but it will be a long road, vascualr surgeons checking it out with dye running through the veins, ultra sounds etc. Lots of visits to different people so could take some time which gives us all plenty of time to adjust.
Some people are so funny, not. I emailed my sister about the news. Hadn't heard from her for a while, so rang her the other night. She hadn't rung lately as was so spooked out by the whole thing, didn't know what to say to me.
We will all be thinking of you and your son and his family in this difficult time, hope that gives you some comfort in the time ahead.
I don't normally read these much but did notice this one. Like the others Marj I do feel for you and your son. My hubby had a arm amputated many years ago and manages very well. I know it may be harder losing a leg but it's surpriseing how the body compensates for any missing limb.
Hubby does all the gardening and most of the driving when we are on the road.
My very best withes to you both, Sue