I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Cordelia on November 11, 2011, 06:26:47 AM
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I'm getting a fistula the end of this month, do any of you who have them, suffer from nerve damage in your hand from this procedure? Does your hand go numb and tingling ever?
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I haven't had any loss of feeling but they went in by my elbow. Sometimes when I get stuck though they will hit a nerve and it feels like I've grabbed hold of a live wire until they move the needle.
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Nope, no nerve damage from the procedure itself. Once in a while, though, I will hit a nerve through my arterial buttonhole if my arm is positioned just so. No mistaking that feeling! I pull back immediately. I hit it pretty bad once and had terrible pain all night, from my elbow to the middle of my hand. Hasn't happened since.
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The hand can go numb and tingly, especially if you're sleeping on the arm in such a way that the circulation gets cut off a bit...Your arm is now supplied with blood from only one artery and one vein now that the fistula has been created. Try to avoid laying on the arm. If you have persistent numbness and tingling it could be "steal" syndrome and you should ask the vascular surgeon about it.
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I get numbness and tingling during treatment, and if I sleep on it. I was told by the vascular surgeon that this can be normal. I do find it highly annoying.
KarenInWA
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I take it the "steal" syndrome is a bad thing?
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sorry to say I have had 5 fistula placements in last 1 1/2 and only one has worked, they r trying to put in a back up one because the good one is going out but they keep failing i recently developed a look clot in the new one so now they are sending me to a thrombosis Dr to see if I have a clottig disorder so fistulas are not my friends but to be honest the one that currently works I love I can shower and no infections where when I had the cath I had infections all the time so you will bw fine maybe some numbness abd tingling but it usually goes away in time. sorry long winded
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I take it the "steal" syndrome is a bad thing?
Not good but treatable. Here's how Wikipedia describes it..... "The complications are few, but if a fistula has a very high blood flow and the vasculature that supplies the rest of the limb is poor, a steal syndrome can occur, where blood entering the limb is drawn into the fistula and returned to the general circulation without entering the limb's capillaries. This results in cold extremities of that limb, cramping pains, and, if severe, tissue damage."
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I have fistulas in both arms and my hands are fine.
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I have an upper arm fistula. For the first few months I would have numbness in my hand especially when washing dishes. It did eventually go away.
Pam
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Thanks, everyone :grouphug;
Thanks, Monrein, for the explanation.......I'm glad to hear it's treatable. :thumbup;
How come you have fistulas in both arms, Rerun?
Any of you have any experiences of when you got a fistula it reduced your Dialysis time lower than 4 hours? My nurse said today "maybe" this might for me, they can increase my pump volume from 400 to 450 if all runs well and it MIGHT get me off the machine a few minutes sooner than 4 hours. It's a wait and see thing, depends on a lot of things.......just curious to know your experiences here...
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I'm at 3 1/2 hours. Was 4 with the catheter. As long as my clearance is good, they would like to try for 3 hours.
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I'm at 3 1/2 hours. Was 4 with the catheter. As long as my clearance is good, they would like to try for 3 hours.
Yeah, I'm 4 hrs with the cath too, I'm guessing that's pretty standard. I usually run at about 35-400 pump speed. But, my neph said he wanted me to always run @ 4 hrs. *groans
But, my nurse says with the fistula, it may change *might* was the word she used
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steel syndrome I got it!!!! YUCK!!!!
It was super, super bad when i would do treatmet (I am on PD now) While on treatment my surgeon gave me pain pills that I would take before and during and that helped, and SOME of the techs would put warm packs on my arm and seemed to help. The surgeon also spoke of a banding surgery, however I did not want to do anything to "hurt" my "lifeline" so I preferred to suffer through my painful treatments.
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That sounds awful :(
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My catheter has been good to me. A year and a half and no problems, and I still have good clearance at 3 hours. It's been long enough, though, and I'm tired of the nagging to get a fistula, and tired of not being able to take proper showers, so I'm working on getting a fistula.
Maybe if I'm lucky, the clearance with a fistula will be even better, and I'll feel better! :pray;
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My catheter has been good to me. A year and a half and no problems, and I still have good clearance at 3 hours. It's been long enough, though, and I'm tired of the nagging to get a fistula, and tired of not being able to take proper showers, so I'm working on getting a fistula.
Maybe if I'm lucky, the clearance with a fistula will be even better, and I'll feel better! :pray;
Restorer, I never thought of that--the feeling 'better' part like you said. I hope I will too :bow; because I'm still quite tired.
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Thanks, everyone :grouphug;
Thanks, Monrein, for the explanation.......I'm glad to hear it's treatable. :thumbup;
How come you have fistulas in both arms, Rerun?
Any of you have any experiences of when you got a fistula it reduced your Dialysis time lower than 4 hours? My nurse said today "maybe" this might for me, they can increase my pump volume from 400 to 450 if all runs well and it MIGHT get me off the machine a few minutes sooner than 4 hours. It's a wait and see thing, depends on a lot of things.......just curious to know your experiences here...
When I was doing in-center I was doing 3.5 hours and my labs were always so good and my clearance rates were always amazing my weight was low (that is what my neph base my time on) he wanted to put my time down to 3 hours, I told him NO!!! longer time, means a better treatment..... so just a thought :) I say if you can do PD........ Do it and get right away from hemo all together, but this is just my thought!!
in MY opionion there is no place like home when it comes to dialysis!!!!
plus PD is way more gentle on the body than hemo is!!!!!! but this is just my opinion!!!
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:cuddle; tbarreett
My clearances are great even with a catheter, but I'm still tired, maybe it's just the kidney disease itself, I'm guessing. My labs have been great for the last few months.
I have nothing against PD for those who can/want to......I think its great for those who can but I prefer to do in-center, I just live a 10 min walk (2 min drive) from my unit.... I just don't have the space or the room in my house for home hemo, nor the support. :(
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I have steal syndrome as well. The only thing we've ever really done is lower the pump speed. I generally run between 350 and 380, and never ever ever ever more than 400. My hand gets cold during treatment, and if the pump speed is too high, it goes to sleep.
Cordelia, if I remember right, clearances tend to be a little better, and you generally feel better with a fistula, because you have no recirculation like you do with a line. With recirculation, the same blood is getting cleaned over and over again, and dirty blood is staying in your system. This can make you feel a little crappy, even if it seems like you're getting good dialysis. With a fistula, if you have the needles far enough apart (and in my experience, they don't need to be that far apart) there won't be any recirculation, and your blood is getting cleaned better, which makes you feel better.
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Riki
try the heat!!!
this helped me alot.... mine would start with cold, then go numb then pain like you would not blve!!
I thank god and the creator of CAPD everyday!!!
I am hoping my membrane holds up until I can get a transplant!!!
because I do not EVER want to go back to Hemo!!!
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I would go back to PD in a heartbeat if I could. Unfortunately, peritonitis made that impossible.
One of my goals in life (it's on my bucket list for sure) is to shake the hand of a man named Dean Kamen. He is an inventor of many great things, one of them being the Baxter Home Choice dialysis machine. I used that machine for nearly 5 years. I was able to travel, which is something I could not do on PD as a kid. The machine then was just too big.
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I use to have a cold hand until they did a fistulagram and opened up a blockage which took care of it.
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So the pump speed can make all the difference then?
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I'd say try to get some info about the surgeons available to you. A careful and skilled surgeon will minimize the risk for nerve damage. That said, you are re-routing some major vessels, so the nerves which are attached will have to re-adjust. I had numbness for several weeks after my fistula surgery. It has pretty much disappeared, except a tiny bit different sensation on one area of skin on that hand.
Now if I can just get the nurses to quit f***ing up the vein! Sorry - SO FRUSTRATING to try to use the fistula twice, and be infiltrated twice. And this second one is quite painful indeed.... :-(
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I had a fistula put in on Thursday 11-17-11 and so far so good. I haven't started dialysis yet. The Dr wanted the fistula to get plenty of time to mature before it's needed. I hope don't ever have to use it but that's wishful thinking..
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I get my fistula tomorrow. I like my surgeon. She seems very capable. The anesthesia charge nurse is a good friend of my wife's, so I feel like I'm in good hands. It really helps to be related to someone at your hospital. They treat you like family instead of cattle.
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I get my fistula tomorrow. I like my surgeon. She seems very capable. The anesthesia charge nurse is a good friend of my wife's, so I feel like I'm in good hands. It really helps to be related to someone at your hospital. They treat you like family instead of cattle.
That can make all the difference, good luck!
I get my fistula next monday morning-bright and early--8 am.
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Sometimes i get a shooting pain in my left arm, where my fistula is. I don't know if it is directly related to the fistula or repeated pokes with the needle. I also notice my left arm (especially my hand) does get cold though.
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I go in on 7 Dec to get my new fistula. I'm happy to be abandoning my old one!
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What happened that you need a new one? Did it stop working?
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My current one didn't exactly stop working. It's just temperamental. Sometimes it works, sometimes not. It developed in a bad spot and they keep hitting a nerve. So sometimes even if it works, it is too painful to continue. When this one was put in, they didn't in in the wrist, Instead, the surgeon went in by the elbow. So I had two fistulas develop. I will be getting a catheter for about 3 weeks to allow the "new" fistula to develop a bit more and they plan on undoing the old one in my forearm and bringing my new one in my upper arm to the surface and (hopefully!) to a better position. Apparently it is pretty major surgery for out patient because they want a cardIologist to see me on Nov. 29. Wish me luck!
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My fistula operation was harder than I expected. They put my whole left arm and shoulder into a numb state. They told me it would address the pain, and that I wouldn't have to go under. I wound up going under anyways, waking up to pain, and having my left arm limp, dead, for 8 hours. The worst part is that an intern doctor got stuck with a needle with my Hep C blood in it. In a month I have go under again for an even bigger cut. I went into the hospital at 10:30AM and left at 7:30PM.
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OMG, Cebushan and Whamo, that's what I'm so afraid of-what if things don't go smoothly, etc, etc. I swear I"m the biggest baby and biggest worrier going! LOL I don't have good luck when it comes to surgeries so I'm so leery about mine this coming week on Monday. Good luck, Cebushan!
Everybody keeps telling me, like family and my nurses say, Oh, you'll be fine, don't worry about it and I just don't have a warm fuzzy about this, I'm so scared yet.....I KNOW I have to do it. I have no choice. *sigh
The "unknown" scares me so bad....everybody's story is different on how they reacted to the surgery and the fistula......I couldn't possibly be so lucky. I just never have luck. ::)
If I come out of it and breeze/sail through this, it'll be a !@#$ first! LOL!
Whamo, you mentioned your doctor got stuck with one of your needles, accidently? Does that mean he has hep C now?
As far as freezing is concerned, yup that would be me too, having that much freezing that it stays for a long time because when I had my 2 c-sections, for the one with my twins, they put TOO much freezing in me and I couldn't even lift my arms to wrap my arms around my babies when I first saw them while on the OR table. :'(
I couldn't even more my arms, I was so paralyzed with freezing! >:(
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I have had the same fistula since I was a kid and I am going to be 28 years old! I used it the first time after 10 or so years and at first it was hard to stick because I didn't know how the needles were suppose to feel in the fistula. After about 3 months I could feel when the needles weren't inserted correctly. My hand only goes numb if I sleep on my fistula arm and sometimes during treatment. Post transplant now and the fistula is still whirling away!
xo,
R
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I have had the same fistula since I was a kid and I am going to be 28 years old! I used it the first time after 10 or so years and at first it was hard to stick because I didn't know how the needles were suppose to feel in the fistula. After about 3 months I could feel when the needles weren't inserted correctly. My hand only goes numb if I sleep on my fistula arm and sometimes during treatment. Post transplant now and the fistula is still whirling away!
xo,
R
Do you ever want it reversed now that you've had a transplant ......or is it best to leave it in case a transplant fails and one has to go back on D? I've often wondered that.
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Sometimes I think it would be great to have it reversed but I would never dare, just in case the transplant will fail. (or should I say when the transplant fails) I wouldn't want to go under the knife again to have a new fistula put in if I can help it. Less surgery the better....this fistula has been working for 10+ years...I am hoping it stays with me until the end. :)
xo,
R
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Does the buzzing/thrill of it ever bother you, esp when you're trying to sleep? I'm concerned I won't be ever able to sleep on my left side ever again once I have mine put in my left arm next week.
I know of one person that told me the sound/sensation of the thrill kept them awake at night, and that concerns me. I need my sleep. I'm going to be pissed >:( and livid if my fistula interferes with my sleep!!!
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Nope the thrill never has bothered me, but I do avoid sleeping on my left side. My fistula is in my upper left arm. I posted a picture in one of Dom's posts awhile ago. I may lay on my left side for a few minutes, but never for an extended amount of time!
xo,
R
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That's what worries me .......I hope at some point , I can. I would severely miss laying on my left side since my right side is an issue with a bum shoulder!
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The thrill has never bothered me. You can feel it very strong. Maybe because I always describe it as a cat's purr & that is always comforting to me! :rofl;
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:rofl; cat purr
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Fistula in upper arm and I have numbness in forearm, Like I had a shot of novacane in my arm. Doctor said this sometimes happens when they make the connection and go diging around in your arm, but may go away with time but now 5 months latter it is still the same. Not bad just feels funny. Time will tell.
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Another question: Assuming that once it's healed and running well for D for a few treatments......how soon after the central catheter is removed, how long is it until I can go swimming?
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I don't know that anyone can tell you how long it will be before you can go swimming. Based on my experience, we really need to cultivate patience. There are unforeseen things that always seem to come up along the way. You are taking each needed step, and you really can't "hurry" these things - patience is a virtue, and I feel confident you will be swimming again soon, but how soon? Just as soon as possible!!! :)
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Good things come to people who are patient :thumbup; ;D
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My surgeon had wanted to just use a "shoulder block", but by the time I actually got to surgery, I was a real basket case. When the anesthesiologist said that the surgeon still wanted to use the block, I said that this was the worst day of my life and that I didn't want to remember a single thing about it, so knock me out totally! And they did. When I awoke, it was all done and dusted, and I was left with a completely numb arm and shoulder, but that sensation went away fairly quickly.
I am one of those people who do not find the fistula sounds to be comforting like a cat's purr. My scar is right below my left elbow, and the access will be just above, so my whole upper arm and shoulder is involved in this little venture. I also have a loud bruit/thrill in my neck which bugs the hell out of me. I can hear the bruit coming through the phone when I am holding it up to my left ear with my left hand. And yes, at night I can hear it if I lie on my left side, and it does bother me. So I got one of those white noise machines, and that helps. Maybe one day I'll come to love my noisy arm, but right now, 18 months out, it still irritates me. But I am still glad I have it because it always scared me that I might have to start D on an emergency basis and wouldn't be ready, but now I don't have to worry about that any more.
I will have to admit that for the first year, my fistula really worried me because I'd get all sorts of creepy, lightning type sensations down my arm, and sometimes my fistula would just ache. There were two times when I demanded to be seen by the surgeon so that he could take a look at it, and he ended up thinking I was just crazy. He keeps telling me that it is just wonderfully marvelous. This past April 1st, I went to the ER because it was hurting...just aching...like it was blocked or something, and the doc reassured me that it was OK. I had never had a fistula before, so I didn't know what was normal and what was not, but after 18 months now, no one has ever been concerned about it, so I am not going to be, either. ::)
Any surgery is risky, and I would never sit here and tell you that you will be just fine. But I have trouble with anesthesia and other whatnot, and if I did OK, I think there will be a good chance you will be, too. In the grand scheme of things, this is a common procedure for a competent vascular surgeon.
I'll be very eager to hear back from you once it's all over. :cuddle;
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The thrill has never bothered me. You can feel it very strong. Maybe because I always describe it as a cat's purr & that is always comforting to me! :rofl;
me too. when I don't hear/feel the purr, then I get worried. But having the purr is reassuring, at least i know that no surgery or no hospital visits are req'd as it is 'purring' like a cat :rofl; :rofl;
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My surgeon had wanted to just use a "shoulder block", but by the time I actually got to surgery, I was a real basket case. When the anesthesiologist said that the surgeon still wanted to use the block, I said that this was the worst day of my life and that I didn't want to remember a single thing about it, so knock me out totally! And they did. When I awoke, it was all done and dusted, and I was left with a completely numb arm and shoulder, but that sensation went away fairly quickly.
I am one of those people who do not find the fistula sounds to be comforting like a cat's purr. My scar is right below my left elbow, and the access will be just above, so my whole upper arm and shoulder is involved in this little venture. I also have a loud bruit/thrill in my neck which bugs the hell out of me. I can hear the bruit coming through the phone when I am holding it up to my left ear with my left hand. And yes, at night I can hear it if I lie on my left side, and it does bother me. So I got one of those white noise machines, and that helps. Maybe one day I'll come to love my noisy arm, but right now, 18 months out, it still irritates me. But I am still glad I have it because it always scared me that I might have to start D on an emergency basis and wouldn't be ready, but now I don't have to worry about that any more.
I will have to admit that for the first year, my fistula really worried me because I'd get all sorts of creepy, lightning type sensations down my arm, and sometimes my fistula would just ache. There were two times when I demanded to be seen by the surgeon so that he could take a look at it, and he ended up thinking I was just crazy. He keeps telling me that it is just wonderfully marvelous. This past April 1st, I went to the ER because it was hurting...just aching...like it was blocked or something, and the doc reassured me that it was OK. I had never had a fistula before, so I didn't know what was normal and what was not, but after 18 months now, no one has ever been concerned about it, so I am not going to be, either. ::)
Any surgery is risky, and I would never sit here and tell you that you will be just fine. But I have trouble with anesthesia and other whatnot, and if I did OK, I think there will be a good chance you will be, too. In the grand scheme of things, this is a common procedure for a competent vascular surgeon.
I'll be very eager to hear back from you once it's all over. :cuddle;
Oh God, MM, I'm so sorry you haven't had a good experience :cuddle; :cuddle;
To be 150 per cent honest here when I say here, I am worried that I don't have a good experience, is an honest thing to say. I worry about everything, will I sleep, undisturbed, will it cause me a lot of pain/annoyance/ problems in the long run, will it cause nerve damage......I think of every possible scenario, hoping to God, it doesn't happen to me. And lastly, is it only going to be a little 'section' of my arm involved.....i.e. my wrist, which is where he's planning to put it, or will it have to go up 'higher' and will it affect my shoulder too. I have neck issues as I've had whiplash back in '99 and I hope my neck doesn't get affected either!!!!!!!
That can be really frustrating when you think something is wrong and a surgeon/doctor can't find anything.
I pray :bow; and hope for you that feeling/sensation goes away for you!! :cuddle;
I'll let you all know how it went :grouphug;
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Cordelia --- Honestly, I had mine done nearly six weeks ago and it's made absolutely no difference in my life at all. Not in the way that I sleep, not any new pain, the thrill isn't all that bothersome (I really only feel it when I am 'checking' for the 'thrill' (or when I show it to other people to 'freak them out') ............Anywhooo, maybe that's just me. For now, there's no impact at all ............until I start having to use it !!!!
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Cordelia, I don't really think that my fistula surgery nor my experiences with it were/are anything out of the ordinary. It's just that people had kept yammering on about how it was my lifeline and that it was so important and it was critical to take care of it, yadda yadda yadda. And like you, I am convinced that I will be the one person out of a thousand for whom this damn thing won't work or some other stupid ass problem will crop up that no doctor has ever encountered before. :P I was about to say that you have no idea how many times I've had someone say to me, "Oh, I've never seen THAT before," but I think you might, in fact, have had people say the same thing to you. I think you get it.
I just had to have reassurance, that's all. It was a whole new thing for me, and remember...I haven't had to use it yet, so I had no way of knowing if what I was feeling was normal. I didn't know anyone with a fistula, so I had no one to ask. I had to resort to expensive surgeon's/ER visits to get the reassurance I needed. But now I feel more reassured, and since I've just gone through the pre-transplant testing again, and since I seem to be always seeing a doctor for something, my fistula is checked regularly, and no one has yelped, "OH MY GOD, I'VE NEVER SEEN THAT BEFORE!" :rofl;
The "thrill" didn't bother my at first because it was minimal, but as time went on, the thrill/bruit/purr became much more pronounced, but that's the whole point, right? Also, my surgeon went ahead and "lifted" the vein and attached it to the underside of my skin. This is good because it should make cannulation easier in that the vein should be easier to find, but it is also irritating because it makes the thrill easier to feel throughout my day to day life. I am always aware of it. Is that a good thing? I dunno. Some people say yes if they like the cat purry scenario, but I don't care for cats. ;)
I can't say that I've had a "bad" experience. I suspect that I've had a commonplace experience but with a hysterical, MooseMom-ish tint to it. I had been waiting for the inevitable decline for years..waiting with a lot of anxiety...and when the day finally came that I had to have a fistula created, that was like crossing a psychological Rubicon for me. It wasn't so much the fistula itself, rather, it was what it represented. It really was the worst day of my life, and the reason I've posted about it is not to scare you but, rather, to show other people who are in the same boat as I am that if I can make it through, believe me, anyone can.
But you are in a psychologically different place than I was. If I was that hysterical about having a fistula created, I think I would have had to have been permanently sedated if I'd had have to have a cath inserted.
I don't know for sure, but if you have a fistula created in your wrist, I just can't imagine a scenario whereby there would be problems with your shoulder. As I've said, mine is in the lower part of my upper arm, and while I can more clearly see the veins in my shoulder and neck, I don't detect any problems with the muscles. I do find, however, if I've been lifting heavy things throughout the day, my fistula will ache (and I think this is what happened when I went to the ER). So I'll take a couple of tylenol, and that seems to take care of it.
But it is amazing what you get used to. The feeling I have in my arm still persists (which is a good thing!), but it doesn't register with me like it used to. I do sleep on that arm (naughty MooseMom :P), but I tell myself that since I'm not using it yet, it doesn't count. :rofl; But I can hear the blood flow through my pillow, and if it annoys me, I have to turn over for some peace and quiet.
I hope this helps some. I understand your anxieties completely! :cuddle;
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Todd, :grouphug; :cuddle;
:grouphug; :cuddle; MM, I so very much get it. :cuddle; I know my fears and concerns are very real to me, I am so relieved that you and others understand me here.!!!! :grouphug;
My surgeon said it will go in the wrist but if it doesn't 'look' promising on Mon morning, he said he'd go farther up the arm. It scared me.
I like to hear people's experiences so I hear and can have a better understanding/knowledge of what can happen and what to expect.
Oh my goodness, that cath going in me, MM, was so traumatic. I wished I had been knocked out for that too, but they refused. Nothing......is ever, ever easy for me.....and I don't have much luck when it comes to major life-altering events like this. Going into a situation and I know to some this must sound crazy to some, but I always 'anticipate" or "expect" the worst-case scenario so that if I come out of it, sailing through, its easier for me to cope. If I go through procedures thinking the mentallity, oh, it can't happen OR WON"T happen to me" and something bad does happen, then I wind up devastated. I've always been that way. ..... a lot of times people think I'm thinking/talking negative when and it's perceived on my end so entirely differently when all I'm doing is trying to understand the situation better so I gain better knowledge myself. I know you and others here are so very understanding, it means so much to me that you all do. :grouphug;
I have a constant tingling, stabbing pain in my toes and feet . It dirves me nuts .....does it prevent me from getting to sleep? No. I don't "think" about it. I totally understand what you mean about 'getting used to it' It's similar with my feet.
You and everyone else here have helped so much sharing your insight and experiences :grouphug; Thanks so much for yours and everyone else's understanding also :cuddle;
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Are you my long-lost twin because I swear you sound like me..."Nothing is ever easy for me", and "I don't have much luck..." :rofl;
What you are describing is a perfectly valid coping mechanism, and I'll claim that, yes indeedy weedy, it IS perfectly valid because I do exactly the same thing. :P I call it "getting sandbagged", that concept of being so completely caught off guard by bad news that you can physically feel the Earth turning on its axis. To me, that is the most horrible feeling in the world, and I will gladly accept more hours of worry and anxiety if I feel it means not getting sandbagged. It's like they say..."Hope for the best but prepare for the worst." Well, imagining the worst case scenario is my way of preparing for the worst.
The counter argument to that is "Why worry about something that probably won't happen?" Well, "probably" is the key word there. Notice it's "probably", not "definitely". I wouldn't worry if I knew that I would DEFINITELY be OK and come out with the world's best fistula, but I don't know that.
I know that others interpret this as thinking negatively, but I don't really care much about how others judge my coping mechanisms. By preparing myself for the worst, I feel that I am actively protecting myself, protecting my sanity, and my sanity needs as much protection as possible in these life-altering situations.
I am always shocked if/when things go well. It's a nice surprise, and that's nothing to sneeze at.
I don't think you and I are all that weird. I'd bet that there are a lot of people out there who cope with things in the same way we do; they just don't go public with it. haha! But I have no shame and even less of an ego. :P
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:clap; I think there were triplets separated at birth! :rofl; I always think, "What's the worst that could happen?" It has worked for everything but my initial diagnosis. (Kidney failure was the furthest thing from my mind!) I also don't think of it as being negative, just prepared. LOL! What a group the three of us would make!
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Restorer, you've had a cath or a year and a half? I didn't know they could be used for that long. Good to know. My husband is having surgery Wednesday, Nov. 30 for access in his upper left arm. He was on dialysis for 3 years prior to receiving a kidney/panc transplant in 1999. The transplanted kindney recently failed after 12 years, so he is back on dialysis. He started with CAPD 15 years ago, but kept getting infections every 28 days, and had to switch to hemo. His arms are pretty scarred up from previous access sites. I hope his surgeon knows what he's doing. I'm a worry wort.
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I've had my fistula since Sept 29th, so thats about 2 months now. It's in my upper arm which feels okay, but my lower arm and fingers is always numb and at times tingly. They said it will go away, but still no relief yet :(
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:rofl; :rofl; MM and Cebushan, I think we WERE triplets separated at birth!
Its so comforting to me that others feel the same here!! :grouphug; :grouphug;
You both took the words right out of my mouth! ;D
Sometimes in the past I've wondered since I"ve started all my meds is if whether or not "paranoia" is a side effect of my drugs! :rofl;
Oh, I've been called worry wart, paranoid, freak, you name it, I've been called it when it comes to nicknames for worrying so much! :rofl;
It's good to have a sense of humor about all of it! :rofl;
Kevinswife, I'm not sure if you were asking me or not......I've had my cath for almost 16 months. I've never, ever had a problem with it, never an infection not once.
I'm only proceeding with the fistula because I'm not having a transplant like I thought I was supposed to, this winter so now I'm taking it to the next level for the longer term for D.
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I've had my fistula since Sept 29th, so thats about 2 months now. It's in my upper arm which feels okay, but my lower arm and fingers is always numb and at times tingly. They said it will go away, but still no relief yet :(
I've never had numbness or anything in my fingers, although if I lie in a certain position on my left side, my fingers do go numb. Once I switch positions, it goes away.
My lower arm felt tingly and generally bizarre for quite a while afterwards. I suspect that it has to do with exactly what the surgeon did and how he moved the nerves around. I experienced twingy bits for up to a year after surgery. At first it really scared me, but once all of the various doctors looked at it and listened to it and pronounced it fine, well, that's all I really cared about. Now 18 months later, those sensations have disappeared, and all I am left with is the thrill.
I would never ever call anyone who was facing a serious illness a freak or paranoid. I think that's rather cruel, actually. Let them shove a tube into their hearts, and THEN we call talk about namecalling. :boxing;
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I agree that every one has their coping mechanisms that work best for them. None of them is wrong, as long as you're satisfied with your end result. Being prepared for any outcome is a great thing and understanding the 'what ifs' of a situation can be very helpful. Coming here to see different people's experiences or their commonalities with your own experiences can provide great relief.
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Todd, MM, I so very much agree with you both! :2thumbsup; :2thumbsup;
MM, I've been called everything under the sun. I just wish I'd be numb to the comments. :urcrazy; What's more upsetting is that it's extended family, so that makes it esp hard. I've also said the same thing, let's see you do what I'm doing then ....we'll talk! ;D :sarcasm;
I'm a pretty patient person to listen to what they have to say about their problems, and most of all their pain, but it's not okay for me to vent about it I'm supposed to suck it up and get over it. It's soooo frustrating!!! :Kit n Stik; :boxing;
It's a freakin' double standard, really. >:(
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Restorer, you've had a cath or a year and a half? I didn't know they could be used for that long. Good to know. My husband is having surgery Wednesday, Nov. 30 for access in his upper left arm. He was on dialysis for 3 years prior to receiving a kidney/panc transplant in 1999. The transplanted kindney recently failed after 12 years, so he is back on dialysis. He started with CAPD 15 years ago, but kept getting infections every 28 days, and had to switch to hemo. His arms are pretty scarred up from previous access sites. I hope his surgeon knows what he's doing. I'm a worry wort.
Yeah, I've had my cath since May 2010. Everyone who asks about it is always surprised I've had it so long. I saw the vascular surgeon on Tuesday and he said I must be taking good care of it. :2thumbsup;
I have an appointment for the vein mapping on Nov 30. After the initial look-over, he said my fistula would probably go in my left wrist, but he'll see what the mapping says. I have the surgery scheduled for January 6th. I'm not looking forward to it, and I'm pretty scared that it'll be uncomfortable and inconvenient and bothersome and ugly, but I'm resigned to the fact that I need it.
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LOL that's what my surgeon said too! :rofl;
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don't know if I should start a new thread or not, but are there permanent lifting and/or activity restrictions after the fistula/graft is placed?
my job is moderately physical and does require lifting at times. I know initially I will probably be unable to lift, but after it is 'healed' can I resume activity as usual?
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I'll be getting a fistula tomorrow morning.....I think (from what I've been told-maybe someone else can help better than me) Was that you should not carry a purse/bags on that hand for the first while.....for how long, I don't know.
I know it likely shouldn't be bumped, either. I do however have a friend who is pre-dialysis though and she lifts with hers and its not an issue. Maybe it just depends on the surgeon.
I know better tomorrow after what to recommend ;D