I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Rerun on March 17, 2006, 05:51:39 PM
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Kevno's sister emailed me the following:
Hi Rerun, It's Kevno's Sister Noelene.
He did not know where he could post that he was going into hospital for about 2 months. He as calcified vessels not only in his foot, but also up to his knee. This does unfortunately show that he has disease in the arteries in his lower leg, is probably not treatable. So you know what that means. The scans also showed that Kev as narrowing in the arteries around the groin. So they are taking him down for an angiogram on Wednesday morning. This as happened so quick. We his family are still shocked, he as always been so outgoing now he is on so many pain killers. He wanted to explain why he said what he did on the I Hate Dialysis Board. I have not found what he said yet. I will have another look at the site, it does look very interesting. I will be checking his E-Mail from time to time. Could you please explain why he is not posting on the site, he as asked.
Noelene
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:-\ Tell him we're thinking of him. Keeping him in my thoughts and prayers.
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Kevno's sister emailed me the following:
Hi Rerun, It's Kevno's Sister Noelene.
He did not know where he could post that he was going into hospital for about 2 months. ...
Noelene
Please ask her to tell him he is missed and we're thinking of him.
Lorelle
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Will be thinking of you and wishing you all the best~ You always have a lot to add to the board! Thanks to his sis for keeping us updated.
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Sending prayers and thoughts to Kevno and his family.. Miss your posts.. hurry back.. :)
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Kevno,
Get well soon, I'll say a prayer for for you.
JayO
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Here is another one concerned and praying that all goes well. Kevno is such an important part of our board now. Hurry back!
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I have "tried" to forward this page to Kevno's sister. I asked her to print it out and take it to him.
I'll try to get the hospital's address and maybe we could all send him a card. He would love that! ;D
It sounds like he will be there for 2 months??
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It would be great to be able to send him a card Rerun. I hope you get his address.
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Sorry its Kev's Sister Noelene,
I lost where this post about Kev was. Kev went for a angiogram on Wednesday morning. We got the results on Thursday afternoon. It was great news for my Brother. Why do doctors always try to make as if there if no hope. The aniogram showed that the veins where not as badly damaged as the ultra scan showed. They showed that the blood was getting to the both lower legs. Plus his ankles. But not the the top of his foot or toes. He is still on a lot a pain killer. But feels a bit better after the news he as got from those doctors. So he is coming home for the weekend, he will have to go back on Monday then on Tuesday he is having an angioplasty to see if they can make the veins wider which could help him.
The Doctors will also make a decidtion what to do about his feet. I will try to get him to make a post this weekend. I and Kev and all his family appreciate all the prayers. It show that renal patients stick together. Kev is staying on a assessment Ward. Ward 9 which he will be on until they know what is going to happen to him. The Doctors have said he may be only be on the Ward for a couple of weeks. The best place I can think of sending Kev a card is to the Dialysis unit. Seeing how he will be changing wards
Kevin
Renal Dialysis Unit,
Manchester Royal Infirmary,
Oxford Rd.,
MANCHESTER.
M13 9WL
I am sure that will make feel better, he as been so down for the few weeks, he as lost that zest, happiness
do not know how to explain it. He as gone very quite, Which if you knew my Brother you would know he is not like that. He is the opposite!
Noelene
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Thank you so much for letting us know what is going on.. Glad he got some good news and hope the angio works out as well .. Hang in there Kevno.. we are thinking of you and miss your humour.. :)
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Rerun,
Kevin is on ward 9, which is an assessment Ward. So he will only be on that ward until the hospital finds out what is wrong with his veins. Great news the angiogram showed that the blood flow does go to both of his lower legs. He is coming home for the weekend.
So hopefully if he feels like it he can do a post on the site. He is a bit out of it with all the strong pain killer. But I see no difference in him. Still have not forgiven him with what he said about Blondes I have been looking around the site, I've took a week off work, so i have had some time to look around the site. Lost where you said to post a message about where he is. Me and Computers
Noelene
Is it ok for me to join the site. I do not like posting under my Brovs name.
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Thanks so much for posting his address. Dummy American question to follow... ???
I think I have to put the country in there somewhere, right?
Should it be like this?
Kevin
Renal Dialysis Unit
Manchester Royal Infirmary
Oxford Rd
MANCHESTER, ENGLAND
M13 9WL
Sorry, don't send much international mail.
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It looks good to me. I'm going to try it your way Sara. Thanks!
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Hello Kevno. Thinking about you. You are in my prayers. Missing you on the message board. Thank your sister for her input
Jasper
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Thank s to all of you for your prayers I do really take to heart.
Yes it's me Kevno ;)
The doctors/surgeons have let me out of hospital for a week or so, to make my mind up what to do? write down my thoughts about the operation. Plus any questions I may have about a amputation. They have decided that my foot can not be saved. I did think that me foot would have to be amputated. But no, they have to go to the good veins. Which are in between my knee Cap and foot.
I do not know if any one of you out there has had first hand experience of amputations. Can't get my head around it. I have wrote my thoughts which can not be changed, but the questions can be, I Will attach both papers which I have wrote. I hope that you read them and tell me what you think. If you can think of any questions to ask the surgeon, I am just not thinking straight just now. Not told everybody everything yet. So just now feel a bit alone. I do know my family will be 100% behind me, but I do not want them to have the worry.
Your always
Kevno
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Kevno.. so sorry about the bad news.. I read your questions and thoughts... You have some really good questions.. I wish I had the answers for you but hopefully someone will answer them and you make the right decision for you.. If it were me.. and I was in a lot of pain and my foot was going to rot then yes.. I think I would opt for amputation.. and get myself the motorscooter thing... I see a lot of amputees with prothesis but they can't really walk and have pain when trying so screw it and get the fastest machine you can get and give'r..... :D ;D
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Kevno, I read your thoughts and questions. I would ask to talk to someone who has had this done. See what they say and maybe what they are doing now. If it would get you out of pain, then I would do it.
I like your question about "what if I wait, what will happen."
You take care and I'll pray for guidance for you. :)
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I read your post, your questions and your thoughts. I can't offer anything first hand but my sister's husband has Buergers disease -- diagnosed in his forties. Despite a prolonged battle he finally had amputation of his lower left leg, about 4" below his knee. Only his foot was in bad shape but they had to go far enough up the leg to get blood supply for proper healing. Now with five years hindsight, he says that he wishes he had not waited so long and suffered so much pain trying to save it, but it took a few years for him to have that perspective. He adapted quickly to the crutches because he had not been able to really use that foot for months -- had been too painful. With time he was able to use a temporary prosthetic and eventually a permanent one. Getting used to the artificial leg/foot was not easy -- was on crutches for a few months, then a cane, but now walks w/ only a very slight limp. He said the Doc told him that the fact that he keeps his weight down has been a great benefit. When he got his temporary artificial leg/foot he said it was so good to look down at the bottom of his pants and see two shoes! He's now so comfortable that he wears shorts in the summer. Naturally a few people do stare but we believe most of them admire his courage.
Yes, he is concerned about his other foot but so far it appears to have adapted to the extra weight it had to carry for the many months between the amputation and getting used to the artificial limb. Now he probably at times puts more weight on the artificial limb. Due to the progressive nature of Buerger's he will probably also eventually lose the other foot and lower leg. If he lives long enough, he'll probably also lose both hands and lower arms. That has been hard for him to cope w/ since he has always been active, athletic and was a Merchant Seaman for over twenty years. Being disabled has been quite a change, but he still goes hunting and fishing, and has learned to enjoy his leisure time. When my sister retires in several years they plan to do some traveling, even after he is a quadruple amputee.
I just read over the above and feel I need to add that the first several weeks were very difficult for him -- physically and mentally, and the physical therapy learning to walk again was no picnic. Toughening up new skin to take the necessary weight is not easy -- but once beyond that initial period, he said it was much, much better than having a very painful and unusable foot.
Hang tough, and give'm hell if they don't take good care of you.
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Kevno, I really feel your pain, and I don't mean the physical one. I am totally behind Black's post, as well as the others. Go for it. We want you to be around and functioning.
I read your two documents, and really you have asked very pertinent and insightful questions.
I continue to have you in my thoughts and pray that all goes well for you. We had gotten so accustomed to you, that your absence was keenly felt. It is lovely seeing you online again, even if only for a short time.
Blessings!
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If the foot is going to kill you trying to save it then have it removed. A man with a artificial leg (from the knee down) goes to my clinic and he adapted very well. He will yank that thing off and beat you in the head if you stare to hard at him, when he has it on you cannot even tell that it isn't his own leg. Just like dialysis you learn to adapt and go on. If anyone gives you any crap tell them exactly how things are. Take your pain meds when things get rough. Take care brother.
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Hello Kev~
You have been dealt a lot to consider. I can only imagine how difficult these times are for you~ You are a person with many experiences that would not make uninformed decisions. So when all is said and done and you have the answers to your questions from the doctors I feel certain that you will make the right decisions for yourself, as no one else can make them. You have met many challenges and overcome. Time is a great healer, mentally and physically, and if this surgery gives you time, you'll have a lot to share with others. I was faced with a body-altering decision several years ago and had to come to terms with a no-win situation unless I had the surgery. I dealt with it the only way I knew how at the time and hid myself away~but time and caring support helped me see that I was not defined by my body image. I had not changed inside and I still wanted to continue the journey. I am happy I did! Glad you are in contact again, if only for a short while at this time. Take care! You are in our thoughts!
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Hi thanks to everyone!
Another iron as been thrown into the fire! Had a third Surgeon have a look at the results, 20% chance of saving the leg with removal of toes(the Surgeons say it so easily) But still in a few years maybe as soon as 2years they most likely with have to carry on with the leg amputation. At least this Surgeon was honest. He said "With his Surgeons hat on the Leg" But "His heart would try to Toes". A chance is there. :-\ :-\ :-\
Seeing a renal patient who as had the same of amputation that I my have. On Tuesday, so will hear what he as to say.
Kevno
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Kevno--I'm sending you a lot of prayers, love and good thoughts from New Jersey AKA The Armpit oF America. You'll be okay, I know it. Where I have dialysis we have two patients on my shift who have had lower limb amputations and they have a prosthesis.
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Hi-I am pretty new here-but I have read many of your posts,so I feel like I know you enough to wish you luck whatever you decide-you are very courageous.
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Well its now over a week since I should of had the operation. But a 4 day warning was a bit to quick to get my head around. Seeing Tony on Tuesday who is a long term renal patient like me, who as had the operation the Surgeons say I need. I will have to make a choice soon. I am on so many pain killers just now. I do not think that they can help me to keep focused. On the machine they have started me on pethidine which does make you seem like you are in a different world. The only time pain free.
I have not felt this low for a long long time. Time to shake this feeling off and make the DECISION!
Try to get back in a more positive mood. The site as helped me a lot. Remember the site is the idea of Epoman who as done a hell of a good job. For all the members of the site.
Must make the right decision for me. Only one of two ways it can go. I wonder, how long do you keep the battle going to stay alive. I know there are a lot of people who are a lot worse off than me.
Sorry for sounding so negative. I'm almost sure it is those dam pain killers talking.
Kevno
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Mentally sending you big hugs Kevno. Hope you have a Happy Easter!
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I am sorry to hear you are having such a tough time at the moment Kevno. I can't imagine what this sort of decision is possibly like to make but you know where we are if you just want to rant. I have been a patient a long time too and sometimes it feels like THE last straw when things are not great but please know we are all here to help and support you as much as we can.
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Sorry to read the bad news kevin. a friend has directed me to this site and i'm a brand new user
After everything else you have been through this must be just hell for you. I'm totally speechless i just cant think of anything to say at the moment
other than i hope things work out as best as possible
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Manchester Steve,
Welcome to the site. When you get a minute, please go to "Introduce Yourself" and tell us your story? Are you on Dialysis yourself, or do you care for someone on Dialysis. Either way, I'm sure you hate it! :D
Thanks~
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As I am very new here, I have just come accross this thread, and can't begin to tell you how much my heart goes out to you Kevno.
Could you tell me, is it because of diabetes you are going through this, or is it because of your kidney disease? It is probably a combination, but I am just curious, as we are so new to this.
Hugs, Ulrika
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Hi ulrika
No it's not Diabetes. Just a long term renal patient. My veins in the bottom of my leg as calcified. Started dialysis at the age of 10 in 1977. Had a transplant 81 went back on dialysis May 88, been on ever since.
There is just something so different with this operation. All the other operations I have had I know I will wake up with just a scar, maybe a tube and the pain. But to have something CUT OFF. The Surgeon told me I needed the operation on the 6th April, that he was going to do the operation on the 10th April. To quick for me 4 days notice, need time to get use to the idea. Not only that need to see other surgeons to see what they say. Never had to make a decision about an operation before. Seeing the Surgeon again this Tuesday, he said can he have an answer. Had made up my mind what I was going to do, but now not sure. Maybe I should have let the Surgeon do it, at least it would have been done now.
There is a couple of attachments that I put on this thread early on. It just says what I think. The pain is getting a bit much now. I was on a lot of pain killer, but have stopped most of them. Could not think straight.
Yours
Kevno
(Must keep :) :) )
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You are very brave. I think you are wise to wait awhile before surgery. You need time to adjust to losing a part of the body. You will go through a grieving process when it happens. You are Strong. Keep going.
Katherine
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I have had a lot of operations over the years, but this one, being sent to a Prof to talk about the operation, what I think about it. I had make my mind up about the operation sort of, but then :-\ The unit sent a patient to see me who had, had the operation, he seemed so negative, I do not believe they wanted me to see some one like that, he took his leg off a lot of the time, on the machine, in front of the TV and so on, he used his wheelchair for me, a bit to much.I know his vasc problems seemed a lot more advanced than mine. But you can not help thinking. Is this going to be me in a few years >:( Plus he only started with renal problems in the 1990's, yes I know all renal patients are different. If I had the operation the false leg would have to be part of me. From when I woke up in the morning to when I went the bed at night. Hopfully out of the wheelchair as fast as possible.
Now have to wait and see what is said on the 8th may. Maybe getting to like the pain killers too much ;D
Kevno
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I've been thinking of you Kevno. Try to keep your chin up, and I think you're right to make a careful and thought-out decision.