I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Pre-Dialysis => Topic started by: Epoman on August 05, 2005, 06:56:12 PM
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Have you been told you need dialysis? or will soon? well ask questions here and get a straight answer from a fellow patient. I'll tell you the truth and not sugar coat it. I'm not trying to scare you just give you a straight answer
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hi i am about to start dialyisiis in a few months , i just had the fistula put in two weeks ago . doctor wanted it to mature before i started. i also have congestive heart failure inoperable and i am in hospice . but not commited to it LOL. i would like to know what to expect , how do i choose a dialyisis center , or does doctor do it. i will probably have a lot more questions but thats it for now. so glad you put this site up.
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hi i am about to start dialyisiis in a few months , i just had the fistula put in two weeks ago . doctor wanted it to mature before i started. i also have congestive heart failure inoperable and i am in hospice . but not commited to it LOL. i would like to know what to expect , how do i choose a dialyisis center , or does doctor do it. i will probably have a lot more questions but thats it for now. so glad you put this site up.
Well this is where to come for straight answers. Welcome aboard and sorry for your medical problems. Dialysis sucks when you first start doing it but it gets better as time goes on. You will have less and less pain with the needles as your skin deadens in that area. As for a center you are free to choose to go where ever you want. And yes you definately want to let the site mature or you WILL have infiltrations. You need to get a exercise ball and squeeze it 24/7 the bigger your vein the better. My fistula is about 1 inch round, it's BIG. I have had it for over 11 years and have never had a problem. You were lucky to be able to get a fistula since the chances of it clotting are almost none. We'll talk more, welcome aboard.
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i am having a terrible time with itching around the incision . if i start scratching i feel like i am a madman. i have tried putting benydrl on it but only stops it for a while. the skin is getting raw around it from scratching. i try not too but just have to sometimes. doctor told me hand might become numb and true to form it is . any ideas what to put on it or what to do. this is driving me beserk . sort of lol.
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i am having a terrible time with itching around the incision . if i start scratching i feel like i am a madman. i have tried putting benydrl on it but only stops it for a while. the skin is getting raw around it from scratching. i try not too but just have to sometimes. doctor told me hand might become numb and true to form it is . any ideas what to put on it or what to do. this is driving me beserk . sort of lol.
hmmm, not sure what could calm the itching hopefully we'll get a new member who had a similar problem and found a relief. As for the hand becoming numb, well that could happen I believe it's called "steel syndrome" OR your hand can become numb while on dialysis like mine does.
I did a quick google and I read some people use Capsaicin cream (Zostrix®, Capzasin-P®, Icy Hot®) It's not intended for itching HOWEVER many people say it relieves itching. You can try that. Here is a qoute I found concerning Capsaicin cream (Zostrix®, Capzasin-P®, Icy Hot®):
"Generally used as a pain reliever, capsaicin cream is said to relieve itching by deadening nerve impulses"
It may be worth a try pick up some Icy Hot® at your local drug store.
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Do not use the Capasin if you have any open wounds from your scratching. I did and it burned the hell out of me. It is made of hot peppers, and it is like getting it in your eyes if you have been cooking. I had to put ice all over me because of that Capasin cream.
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Do not use the Capasin if you have any open wounds from your scratching. I did and it burned the hell out of me. It is made of hot peppers, and it is like getting it in your eyes if you have been cooking. I had to put ice all over me because of that Capasin cream.
Yeah your right, I forgot to add that. Hell even if the wound is not open or raw it still burns a little. But it will burn ALOT if you have open wounds.
Glad you came aboard, welcome.
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well i found out the problem was i am allergic to the sutures so have to put this stuff on that burns to high heaven but stops the itching. ;D
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well i found out the problem was i am allergic to the sutures so have to put this stuff on that burns to high heaven but stops the itching. ;D
Is it Capasin or contain Capasin in it? I glad you fiqured it out.
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Whenever I get 'dialysis itch' (whole body), I take a nice, long, HOT shower. While in the shower, I scrape off all the dead skin-- in my case, that's what causes the itchiness, NOT 'high phosphorus' as the nurses at dialysis insisted it was... my phosphorus leves are within normal range.
Since we have fluid restrictions, our skin is usually dry-- and dry skin builds up and can make you very itchy. Sometimes moisturizers work, sometimes they just make you itchier. I've found that a good 'debriding' in the shower eliminates most of the problem.
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Whenever I get 'dialysis itch' (whole body), I take a nice, long, HOT shower. While in the shower, I scrape off all the dead skin-- in my case, that's what causes the itchiness, NOT 'high phosphorus' as the nurses at dialysis insisted it was... my phosphorus leves are within normal range.
Since we have fluid restrictions, our skin is usually dry-- and dry skin builds up and can make you very itchy. Sometimes moisturizers work, sometimes they just make you itchier. I've found that a good 'debriding' in the shower eliminates most of the problem.
I usually don't have problems with itching EXCEPT my back, But your right being on dialysis or having kidney failure makes your skin very dry.
My arms are always very dry. My phosphorus can be in the 10+ range and I will not itchy that bad.
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I want to know this. I am most likely going to have dialysis on Mon Wed Fri, from lunch time. On Mons and Weds I give a couple private French lessons. The session is usually from 5.30 to 7.00 p.m. Do you think that I will be able to continue, or should I give it up once I am on dialysis? I only just got my fistual operation, so I have some time before I go on dialysis (if uremic symptoms don't start).
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I think you should try to continue teaching as long as possible-- it's important to keep up your outside interests so that dialysis doesn't become your life.
For the first few months you may be too tired after dialysis to do very much-- would it be possible to move the lessons up by 30 or 60 minutes, to give you longer to recover from dialysis? It's important to have a meal containing protein when you get home from dialysis, since the procedure takes a lot of protein out of your blood... and you'll probably need a rest after your treatment, too, before you teach your class.
Good luck! :)
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I think you should try to continue teaching as long as possible-- it's important to keep up your outside interests so that dialysis doesn't become your life.
For the first few months you may be too tired after dialysis to do very much-- would it be possible to move the lessons up by 30 or 60 minutes, to give you longer to recover from dialysis? It's important to have a meal containing protein when you get home from dialysis, since the procedure takes a lot of protein out of your blood... and you'll probably need a rest after your treatment, too, before you teach your class.
Good luck! :)
GREAT advice. I would add, to eat WHILE on dialysis. to help get that protein back faster. See how it goes keep your appointments and if you feel bad I'm sure your students will understand. Believe me it's very easy for dialysis to become your life. You need outside interests to keep you sane.
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I take it that most people say the fistala is the way to go. That is what my doctor is planning for me. Realistically how much does it limit your activities -- after it heals and you start to use it I mean. I'm talking lifting, bathing, fist fights. My most important hobby is the piano. Will I have to stop? Will vanity insist you wear a long sleeve shirt all the time?
I don't expect all of these answer but I just want to know generally what the limitations will be.
Also I'd like to know about people experience driving after the sessions. Are you too week (large city with lots of traffic). I've call all kinds of services for transportion and they are quite expensive.
Finally, I wish someone would simply say "I would" or "I would not" do dialysis if I lived alone and I am only a year or so shy of 70? I know the phrase that "no one can tell you what to do". I wish someone would try and put themselves in this position and not tell me what to do but surmise what they might do.
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dw, I am not too far behind you in age and am predialysis. If I didn't have family around me, I think I would still do dialysis. I have so many interests and favorite things to do, that I am not ready to give it up yet. When my quality of life is gone and I am a burdon to society, then I would think different. My hope is that you have found good friends here know we are here to help walk beside you as you go on this kidney journey. :cuddle;
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Paris...thanks for your response. That's exactly the kind of response I needed. It doesn't make my decision but goes a long way toward helping.
OK, the doctor said I could go on for a couple more years without dialysis. He didn't indicate the quality of life during that time but at this time I feel as if nothing is wrong... here's the rub: I hear if you start dialysis and then quit you have just a few weeks. That adds a wrinkle in my decision doesn't it? I have so many interests and favorite things to do, that I am not ready to give it up yet.
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If you have a couple years to go i wouldn't stress over it so much. Stress is a major killer.
And if your truly worried and vain about how your arm may end up looking do PD.
PD for many is a better way to go. Less food and diet restrictions and some say better quality of life. Due to dialysis being done nightly.
I wouldn't trust everything a doctor says. Research is key thus this site is so good to have as are the many people on it.
P&K
Ps who do you plan on fighting? :boxing; :boxing;
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DW,
I am also Pre dialysis and had my fistula placed August 2007.. It has not been a burden for me at all. I still do my normal things like work, cook, shower, plant my garden veggies... right after surgery though I could not shower. because you should not get the incision wet. (You do not want to get an infection) Then you have to use a squeeze ball and exercise it to get let it mature. the fistula surgery was not a problem for me and I still go about my daily life once it healed. I am not ready to start Dialysis either but, I am ready when the time comes.. And with this diesase it is better to be prepared. I was afraid of what my are looked like but you know when people see the scar and ask what it is I just say... "it's my lifeline".. Because I know that one day that will be the one thing that keeps me alive... It is all in how you view it...
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Paul: I agree about this site. Actually l've learned more on here than from the doctor and the dialysis class combined. Two problems: I stay on much to much and there is so much to consider. Thanks.
Tinah: Aside: I tried to send a message to your earlier. Did it worked? My first message... all I wanted was to know if you went to the rodeo???
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DW,
I just got your message and I responded... the Rodeo was fun the weather was bad
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Paul: I'm embarassed that you thought it was vanity. Actually I'm pushing 69 years old here and little left to be vain about. It is, however, a very real phobia.
I did start reading about the PD...but I doubt it...
If you have a couple years to go i wouldn't stress over it so much. Stress is a major killer.
And if your truly worried and vain about how your arm may end up looking do PD.
P&K
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Paul: I'm embarassed that you thought it was vanity. Actually I'm pushing 69 years old here and little left to be vain about. It is, however, a very real phobia.
I did start reading about the PD...but I doubt it...
If you have a couple years to go i wouldn't stress over it so much. Stress is a major killer.
And if your truly worried and vain about how your arm may end up looking do PD.
P&K
I will never forget this post, which captures the true beauty of a "magic" fistula:
http://ihatedialysis.com/forum/index.php?topic=11774.msg200693#msg200693 (http://ihatedialysis.com/forum/index.php?topic=11774.msg200693#msg200693)
I find Marvin's positive outlook on life to be inspiring.
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I take it that most people say the fistala is the way to go. That is what my doctor is planning for me. Realistically how much does it limit your activities -- after it heals and you start to use it I mean. I'm talking lifting, bathing, fist fights. My most important hobby is the piano. Will I have to stop? Will vanity insist you wear a long sleeve shirt all the time?
About the only limitation I've come across in the 8 1/2 years I've had my fistula is being careful not to bang it on things. Trust me...for a klutz like me, that's no easy feat.
Also I'd like to know about people experience driving after the sessions. Are you too week (large city with lots of traffic). I've call all kinds of services for transportion and they are quite expensive.
Keep in mind I'm 35 so of course your results might vary. I'm usually wiped out after dialysis, but still drive myself home (I live about 2 miles from my center). I pretty much just 'suck it up' until I get home and collapse. Luckily, I've trained my dog to drag my unconscious body from my front stoop to my bed. Okay, not really...(darn lazy dog will only drag me so far as the couch...)
Finally, I wish someone would simply say "I would" or "I would not" do dialysis if I lived alone and I am only a year or so shy of 70? I know the phrase that "no one can tell you what to do". I wish someone would try and put themselves in this position and not tell me what to do but surmise what they might do.
When it comes to myself and dialysis, I've boiled it down to a simple formula...if hassle of dialysis < quality of my life = I keep going. Maybe not quite the answer you're looking for, so I suppose I'll say at least try it for a little while. Then decide whether it's worth it to continue.
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Oh, forgot to add about wearing long sleeve shirts...
I'm a t-shirt kind of guy, always have been. I've been on dialysis for 8 years so I've got quite the line of needle tracks on my arm. I don't mind when people ask about it. I try to explain it as well as possible and even try to get them to feel the thrill of the fistula (thril=that buzzing/pulsing feeling, in case you didn't know).
The only thing that gets to me is when I can see people glance at it, then turn to whomever they're with, and begin whispering. Oh, keep in mind I have long hair (I grow it out for Locks of Love) so I know what the assumption they are making about me is.
I'm determined to someday make a line of t-shirts...one will say "It's okay to ask", and the other side will say, "No, I'm not an IV drug user".
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Thanks Jason... those are some of the questions answered that I have. Though I am 68, I tend to forget abuot it. I suppose that guy was right about it being vanity. We hate the truth sometimes. How funny, now that I think about it.
Feeling the buzzing wouldn't be my thing. There was a man in the class I took who had one just a few weeks old. All the other people gather around him to look. I looked away. I am a true Wuzzz when it comes to things like that. I won't even look if somebody has a hangnail. And when the draw blood--I usually just murmur "bad words" and look away till then are done.
My center is 9 miles away (at least the one the doctor wants me to go to) and the traffic is hell. There is one just 2 miles away. That would be so much better. I'm going to talk to him about it next time but he said I'd have to get another neph (and I really like him
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For the record dw you said vanity i just repeated your words.
And as far as most people saying the fistula is the way to go. Well this is debatable. Many of the OLDER nephs are just use to people dialyising in center and may not be up to date on PD. Or have special interests to send people in center. Many people here and on other sites never even heard of PD, i know i didnt until i came to this site.
But if you read the articles Okarol posts many docs and patients are pushing for in home dialyis be it hemo or PD.
I am NO EXPERT other then what i read on these sites.
If you ask people which is better at home, hemo or PD many of the answers seem split 50/50.
From the little information i have gatherd PD hopefully will be good for me. I need to continue to work. And from what i gather you dont have the ups and downs on PD that some people feel while on hemo. Again i just have this information from reading on sites like this one.
But either will save your life.
my :twocents;
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The thrill is a great "party trick" which either delights people or freaks them out. I think I related the other day a story about when they brought a gorgeous medical student around to me to explain Dialysis, needles blah blah all that boring stuff... so the nurse invites her to feel my fistula. Of course I couldn't resist telling her I was THRILLED to see her.... oh come on it was true (my blood pressure went up to prove it!! :rofl;).
I'm a tshirt or polo kind of guy myself and I really DO NOT CARE about walking around with my fistula showing - since it's at my wrist and the needle holes go up my left arm it's hard to hide. People can think what they like. I reckon if someone asked me if I was a drug user I'd quip "only the legal ones. I'd almost wish I was on the other stuff!" or something. meh. The people that matter to me understand what the deal is. My co-workers understand.. if people want to judge (which they will anyway) well let them. I've got enough to deal with without worrying about what some loser thinks.
Actually I was in a fast food place the other day (shhh don't tell the dietician !!) and a guy actually had the balls to look at my arm and ASK "what happened to your arm?" - not rude or anything more curious. I explained and he was cool. Just what you want when you're ordering your burger and fries!! LOL. Once or twice when I've gone out after dialysis and had the bandages on my arm people at 7-11 or supermarket (like cashiers) have asked if I'm ok which is nice really! :)
I don't drive but yes I do get quite tired after dialysis and tend to get hom (over the road!!!) and have a cat nap (and yes, the cat usually joins me) :)
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DW, I am so impressed with how far you have come in such a short time! You are gaining knowledge everyday and you are asking great questions. I think anytime a change is made to our body, we wonder how it will effect us. My daughter has a 7 inch scar on her throat and it has taken a couple of years for her to be comfortable with it. You wouldn't believe the things people have said to her! I think the same is true with a fistula. Everything takes time to adjust. Keep asking questions. :2thumbsup;
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I do read most everything that is posted here and I’m trying to read all of the old post. Some of it, however, doesn’t mean a lot as I’m not up on the terminology. I just found the list of dialysis acronyms that someone posted at one time. I should print it off.
PD (they gave me not information on that). Basically, at the class, they did mention of forms of dialysis but came back with lots more info on hemo. The nurses presenting the class said they thought in center hemo would be my best bet.
I like the idea of home treatment but it doesn’t seem practical for me since I have no partner. I visited lots of other ideas and am still trying to come up with some creative solutions but that all remains to be seen. I even suggested that maybe I could find someone else in the neighborhood who had no partner and I could set up a mini center here. Then we could do each other. They laughed at me.
And I don’t really care what other people think or say. Those vanity questions were for me only and wouldn’t change any decision I’d make for sure. I just had surgery on the bottom of my foot for a diabetic ulcer removal. The orthopedic guy makes me wear this heavy ugly black boot all velcroed up. I wanted to get one for my right foot too simply for the fashion statement. (lol) I mean your shoes should match.
RichardMel, you are sometimes hilarious. I’m sure you get away with those comments to the nurses because of your Aussie accent. If I tried that stuff with my ole Texas accent somebody would surly slap me. (lol)
Like the driving issue: It is something I’d need to plan for in advance. Shuttle to the Medical Center is $40 per round trip (times 3 per week) ugh…I’m over insured but that is the one thing not included. I’ve been looking into other and cheaper options but would much rather drive myself if possible.
It is just that I’m trying to look at every option since it is “poor old me” all alone. I’m also worried about taking baths…. I use my left arm to push out of the tub. I’m considering do I need to install a new “thing m’gig” or switch entirely to showers. See, it is so many petty things.
Anyway, I am really thankful that I found this site. I feel like I know some of you guys already and I truly appreciate your talking to me. I really need to stay away from that chat though. It is cutting into my beauty sleep.
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I really need to stay away from that chat though. It is cutting into my beauty sleep.
And some in the chat room are drinking a bit too much Jack Daniels. ::)
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Dan, I think you are worrying a little too much about the fistula arm - it doesn't become like a useless limb!! Heck I am typing with mine now, and I use it normally. Stuff like pushing yourself out of the bath with it should not be an issue at all IMHO. You just need to be aware not to life heavy weights with that arm (but I am fine if I hold stuff with both arms) and not to wear tight restrictive clothing over the fistula - those are just general rules. You will find what works for you and what doesn't, but don't let the talk make you think that the arm just becomes an essentially useless part of your body - far from it. They just make these suggestions/rules to protect the access as much as possible (so no watches and blood taking or BP cuffs on that arm etc). It's all about protecting the fistula because it is such an important thing. However you don't wrap your arm in cotton wool either - you can still use it! :) So please, don't worry about stuff like the bath in my opinion.
As for hemo v. PD. In my situation everything was discussed but by mutual agreement it was decided in center hemo was the only realistic option for me. Like Dan I live alone (well with my 4 legged mistress) so home hemo isn't an option (though the nurses and I do get a kick out of the mental image of my cat holding a needle... :rofl;) and because of my eyesight and co-ordination issues I decided against PD because I do not feel comfortable with connecting up that stuff to do the transfers specially with the risk of infection if I got it wrong. Before I started dialysis I attended a very long seminar the team put on where they showed everything - hemo machines, needles, the PD setup etc so we would all be familiar with the different options and could make an informed choice. That was eye opening but also very VERY good because I feel like i wasn't just told "you will do hemo" but made a decision knowing some facts.
I am not sure I always get away with my comments but I find humour is ESSENTIAL in this thing. I managed to make one of the nurses totally crack up last night though she was trying oh so hard to keep a straight face (the sweetest woman from Hong Kong) and it was hilarious and just what I needed since I had been suffering a *@)#@*@)@ foot cramp and was in a bad way. Sometimes you just need that. (in case anyone's wondering - they used a portable ultrasound on me yesterday checking my fistula and watching the blood flow etc.. they were remarking on his big my access was and how good the flow was, but they couldn't see the needle (!)... anyway I quipped "Well you know what they say about men with big throbbing accesses with good flows..." and this nurse just couldn't contain herself after trying so hard. It was brilliant!). We all had a good laugh.
That's one of the things I love about the renal folks in general. Because Dialysis is such a long term treatment (usually) and you see the same folks day in day out they become less nurses, or us and them, and more community and in some cases almost family. I think that's how we can get away with stuff like that. It's such a special caring environment and some of those guys are so so very special I know if I got a transplant tomorrow I'd still want to visit the staff because they're so dear to me.
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I dont know when d is going to happen but i got my tests back today gfr is 15 it was 19 before that is was14. I feel sick all that time I know what you guys ment when you day you are sick. Im to that point .WHAT do I do . I got an appt In one week. I am sick off and on all day. meat makes me nausea when I even think about it. I cant hardly believe that because I love meat . cant hardly type this just thinking about It. help me understand the process of dialysis. and the size of the needles. In my mind it is huge. How do you get used to it.
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Well I agree with RichardMel. Who cares what people think. Live life, don't stress about what someone may or may not think about you. Let them look, just shows what kind of person they are. All that matters are the people who are close to you, and they should love you enough not to even knotice. So yes I say SCREW THEM WITH A BIG STICK!
Okay now for a question of my own. How long should one have fistula before you can use it? My father has had his in for soemthing like 3 weeks. And I am so worried about him getting an infection in the line in his chest. I had one and got the worst infection. I really don't want that to happen to him. So yes when should he be able to use it?
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Manda - I've always understood they wait 4-5 weeks for a fistula to mature enough to use but in some cases they have tried earlier. So I'd say your father's fistula would be VERY borderline.
BRANDY - This is quite simple - you NEED to start dialysis. I know that is scary and all but if you feel sick all day, nausea etc.. this is the time. Forget the GFR reading, etc.. it's as much about how you feel as it is about those numbers. You tell the neph how you're feeling day in and day out and you'll be in.
Look the needles are as big as you want to make them in your mind I guess. I just don't look at them when they do it. I look away and think about happy things (ok, usually girls :rofl;) or I distract myself chatting to the nurses or pulling faces or whatever. It works for me. If you get a local shot before they do it - at least the first couple of times - you won't feel the needles. When they're taped in you won't see them so much inside and worry about it. I am confident after a few sessions you won't care about the needle size. They do the job and that's what matters.
Please Brandy do not put this one off. I know you want to but you are only going to (likely) suffer more. Nobody wants that. Dialysis hopefully would stabalise you and allow you to LIVE rather than exist feeling like crap. Hang in there!!
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Richard thank you for putting it to me that way I will talk seriously to neph If he thinks I need to I will as soon as possible. I cant go much longer I do not think. Im foggy headed at times and sharp pains in head at times . Dizzy light headed neasea at times most of day. I bump into things I walk drunk, But the strange thing is some of it comes and goes.For three days straight I have felt awful. I do think I have to do something if it is dialysis then let it be.
I dont have a clue to what to eat now much less a dialysis diet I am going to do a little research on this tho. Talk at you later. :thx; I already feel much better. :cuddle; :thx;
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Brandy don't worry to much about the diet part. To me it is fairly easy. As time goes by you will learn that the stuff you shouldn't eat makes you feel worse then the stuff you should. And you tend to stay away from things. But pretty basic diet is low protien, low potassium, low sodium. And you should be alright. I mean there are other things to stay away from based on your labs. But keep an eye out for recpies on here that people post. And you start to get ideas and stuff.
Richard is a sweet guy, and yeah he is right. Don't put it off. My dad was having a lot of the same problems right before he started and he said that right away he could tell a diffrence from the being dizzy and feeling like he was drunk.
But I do hope that if they don't start you on dialysis soon that they find something else that helps. Keep us updated. Take care.
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OMG! OMG! OMG!!! A girl said I was sweet!! OMG OMG OMG!! :bandance;
phew, now that I got that out of my system hehe...
I totally forgot the diet thing!! Yep, Manda's a sweet girl too, and she's right about the diet. For me this is not so big a challenge as it seems when the dietician stomps in and gives you "the lecture" on what you can and can't have. Based on my labs and a desire to live a little I've figured out it's really an exercise in moderation and willpower/self control (hmm and a girl thought I was sweet??? >:D) - what I mean by that is that over the course of a day it's OK to have some "worse" stuff as long as you mix it with "better" - soo let's say you have something with a higher potassium rating in it, like a slice of tomato in a sandwich or roll for lunch... well, you just remember that and don't have anything high potassium for the rest of the day. And if you do have stuff in the "worse" group (by that I mean high potassium, phos, etc) then don't have lots of it. A single slice of tomato is fine; a whole tomato or more.. not so good. Oh and don't go tempting fate (so no bananas!! :( ). As MandaMe says, you will work out what works for you and what you can handle and not. I think most dieticians come at you the wrong way and give you the fear of God about a list of high potassium or phos or calcium or whatever foods and make it out that you simply can't have that ever again. That's simply not true.. you just need to monitor what you take in and be smart about it.. and damnit I'm going to enjoy as much as I can while still being safe by my body(ie: labs) rather than scared into submission. So yeah, I did have a burger today!! SUE ME!!!
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Lol, yes Richard you are a sweet guy. :rofl; With a tad big of a wild side. But gotta love. Haha.
And yeah about the whole diet thing you will learn with time what works for you Brandy. And like Richard said, it is alright to have some of the bad things just have to limit yourself. And you have to choose what it is you like more and what you are willing to give up. Like you can't have lots of Mango and Patatos all day. You can have a patato or a mango. And who knows your labs might tell you, you need more of something. Like me my potassium tends to run low a lot, so I have to eat a little more potassium. But one thing I am gonna say though is when your dietician comes in and gives you the "speach" keep in mind that it isn't as bad as they make it sound. Its a pain in the butt, but not the worst part of all this. Promise.
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Listen to Manda - she's much better looking than me!!! :rofl;
Brandy I know this is so much for you to take in - specially when you feel like rubbish most of the time.. I think the important thing to focus on at this point is that starting Dialysis almost certainly WILL help you feel better. Yes, you will have to make changes - putting up with the needles, sitting on your ass for hours, diet & fluid restrictions etc but frankly all of that is worth it compared to the alternative - that's how I view it anyway. You'll also find you can get used to it too and some things - like the diet stuff - get easier over time - and like MandaMe says in your particular situation your restrictions may not be as severe as for some others - it all depends on your own situation. I think you shouldn't stress too much about that stuff at this point. it sure sounds to me like Dialysis will help and that's the most important thing.
You will be cool mate!
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I do not understand how I can be pretty much myself today after 3days of being so sick . I am still a little nausea. I still will get with neph . Oh thank you Manda and Richard for your input I understand what you are saying. It is always talked about in the forum about how hard it is to eat and I have just been scared I couldnt do it right.The diet is going to be a chalenge but I cn do it if you can :2thumbsup; I am feeling alot better since you two have said all this . YOu do know you have helped alot others by saying alll this to me. Others are wondering the same thing I would assume. This forum is great. :thx; :cuddle; :beer1; to both of you Im smiling at you two
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Any time, and your right I love this place!
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Aww Manda I thought you just loved me!!! :rofl; :rofl; :rofl; :rofl;
Brandy I think the fear of the unknown is the big fear. Once you're there you'll probably wonder what all the fuss was about. I can confidently say it DOES get easier after the initial time.. specially as you stabalise on dialysis, feel generally better and get into the swing with meds, diet etc. Just look at Ol Man Zach.. he's been going for 27 years and he ain't slowing down for ANYONE!!! :)
(btw that's "Ol Man" in terms of Dialysis experience!) :)
Glad you feel a bit better today but you do need to be clear with the neph about how you have feeling generally over the past weeks.
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Richard I am still trying to figure out . Is my kidneys taking te toxins out the reason Im feeling better? If so it is giving me a false since of feeling beter. I still pee probably 5or6 xs a day.I do drink alot of coffee. Im not swelling lately . I woke up pretty early 5 oclock and here I am on forum. Great place to be :2thumbsup; I feel pretty good this am still not right th a little fog hanging there. But other than that ok. I ate spaghetti last nite just to se if it would make me sick but it didnt. Iv got 4 days till I see neph Im counting down. Thanks alot Richard for your mighty knowlege. Im not giving you the big head am I :cuddle; Hope you feel good today cause it is a beautiful one here .. Although it is cold. :thx; Enough of my rattling, see ya later
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Aww Richard you know there is enough Manda Love to go around. And there will be even more once I get working on the MandaClone. So no worries! :flower;
Brandy I am so happy to hear your feeling better! yey! As time goes by you will find that bad days come and go. You can never really tell when they will be around. But heres to many more good days :beer1;
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BRANDY -I am glad you are again feeling well but it's very unlikely your kidneys have done a 180 and are on the improve (unless you're somehow related to Lucinda!! :rofl;). Even after nearly 3 years on dialysis I have good days and not so good days myself, but in general the variation is less in that I feel much more stable. Not fantastic, but not horrible and I can work full time (when not on D anyway) and do everything else I need to do and that's the point of Dialysis (along with keeping us alive, of course). As I've said before the fact that you've had days of nausea and fog suggest that the toxins are getting the upper hand. As for not retaining fluid - that's great - but I didn't have that issue either before I started dialysis. If you continue to feel good that's great but I would be more concerned with the times you've felt bad - going on what you've written those days have been pretty much written off for you. That to me more than anything says a serious evaluation needs to be made about you starting dialysis.
Now if you don't mind I'm off to sit by the front door waiting for that MandaClone to come give me some lovin!! :rofl;
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Richard I am still trying to figure out . Is my kidneys taking te toxins out the reason Im feeling better? If so it is giving me a false since of feeling beter. I still pee probably 5or6 xs a day.I do drink alot of coffee. Im not swelling lately . I woke up pretty early 5 oclock and here I am on forum. Great place to be :2thumbsup; I feel pretty good this am still not right th a little fog hanging there. But other than that ok. I ate spaghetti last nite just to se if it would make me sick but it didnt. Iv got 4 days till I see neph Im counting down. Thanks alot Richard for your mighty knowlege. Im not giving you the big head am I :cuddle; Hope you feel good today cause it is a beautiful one here .. Although it is cold. :thx; Enough of my rattling, see ya later
Maybe get some blood work done to check things like potassium level. If it's high, be very very careful about experimenting with any high potassium foods...like tomato sauce. Glad you feel better.
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I seen my neph. and he took me off calcitrol and calcium bc my calcium was high. He said that might be why I was dizzy ,walking drunk and had the foggy feeling. I am to get a blood test in 1 week. my phosphorus was a little high, BUN 59 and gfr of 15 creatinine of 3.33. My fistula is looking good. He didnt say how long it is till it is matured.I also have been having low blood presure , He just told me not to take lisinopril if it is 99 or less on top.So :bandance; I am not taking near the med. I was great.He said it looked as if I am eating right just keep it up . thats my update :flower;
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Yeah Brandy! :yahoo; :yahoo; :2thumbsup; :2thumbsup; Good news! I am happy for you. Thanks for keeping us updated :cuddle;
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My fistula is looking good. He didnt say how long it is till it is matured.
Are you exercising it?
8)
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Yes but I tend to not do it alll the time. Zach you would be a good one to ask I think what is my fistula to look like and how long and how hard . ??????
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Yes but I tend to not do it alll the time. Zach you would be a good one to ask I think what is my fistula to look like and how long and how hard . ??????
Not sure what you mean (how long and how hard)?
8)
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(how long and how hard?) :rofl;
sorry guess i have a bit if a dirty mind
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I thought the fistala went into your arm!
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:rofl;
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:rofl; :rofl;
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I am cracking up :rofl; Wait until RichardMel reads this one! Someone please answer the question seriously---maybe not MandaMa---we know where her mind is! :rofl; :rofl;
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And what was the question? Oh, please don't joke about the fistala tonight. I have to decide by Tuesday if that's what I'm going to do.
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You can do this DW! You have learned so much in the past few weeks. Fistula is a good idea. You have lots of support here. :grouphug;
Brandy, how is the fistula doing? Keep exercising it! :thumbup;
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Dan seriously, my thoughts are with you. This is a really big step for you. But I am gonna add my :twocents; in. I like talking to you in the chat, I would like to see you there for a long time... But here is a :grouphug; for you.
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I was joking about not joking... go for it.
Look at the little say under my ass... I'm getting there fast.
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wont you look at me I joke on a serious question and I am serious on a joke... :clap;
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Alright Manday I first had wrote totally wrong as to it really sounded dirty SOooooo I inserted fistula so it woulnt sound quiet so bad ....... But seriously now I had my fistula surgery Feb 12 now my vein is getting bigger it is puffy and sounds strong and have a nice thrill. How big and hard does it get My Vein I guess is what I am talking about . Now get your mind out of gutter please.I really want to know . I would have ask neph but I didnt think to ask.
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Adam to Eve..."Stand back, I don't know how big this thing gets!" But seriously Brandy, all fistulas are different. The most important thing is to exercise it in the early days. As long as its pumping and the thrill is good, your in good shape.
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I want to know about the thrill??? Is it loud? Can you feel and/or hear it all the time? Will people hear it and know you are coming?
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Adam to Eve..."Stand back, I don't know how big this thing gets!" But seriously Brandy, all fistulas are different.
:rofl; :rofl; :rofl; :rofl; :rofl;
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Okay my mind is out of the gutter... :2thumbsup;
But no it sounds like it is doing what you want it to do. I don't have one but if everyone around here says so then it must be ture.
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Thanks I guess I cant ask anything else about it I got the thrill and pulse going on so I guess Im in good shape . I was around some people today and they were looking at my arm and was really freaked out at what it looks like ??? I thought it looked pretty goood. :bandance; Of course to them I look deformed. I thought My pulsating fistula looked awful goood. They didnt know what it is supposed to look like . Thanks for your time
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Hi DWC...No, people will not hear you coming....unless you've been eating beans! Mine buzzes, but I can only hear it if I put it near my head when it's on the pillow. I can only feel it if I touch it with my other hand, then WOW.
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yes well.. interesting reading here.. and I best not comment on Manda's dirty mind... I'll just send her some PM's on that subject :rofl;
As others have said fistulas are different.. and indeed mine sometimes gets better and smaller (hmm must be based on if I see a pretty girl or not!!! :rofl;) and everyone's are different. They're not all the same at all.
As for hearing it. no... it doesn't sound like you've got a vibrator in your pocket or something!! :) You can only "hear it" when you feel it through a pillow or something like circ says. I mean it is just blood rushing through there that creates it. I remember when someone asked me if I had batteries stuck in there that made the buzz... :rofl;
Just remember.. if the thrill stops.. get to an ER ASAP!
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Me a dirty mind? Never!
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acspears happy to have you, welcome to IHD. This is a wonderful site to help with lots of questions. If you wouldn't mind going to the Introduce your self and let everyone know who you are and whats going on I am sure tons of people will have answers for you.
I understand being scared, its scary stuff. But it is going to be oaky. You will find out all the good and bad about dialysis. The vomiting, dizzyness, blurry vision is pretty normal. Once he starts dialysis he will start feeling better.
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My husband was supposed to start dialysis today. Unfortunately they infiltrated him. His fistula was done on April 14, he has also had two prior angioplasty (one on 08-28 and one on 09-11) to try and get it to mature. They say his fistula is ready (although the Dr that did the angioplasty said it was not ready) so they want to try again on Friday. I am really concerned because I am afraid they are going to damage his fistula so it can not be used. I basically rely on this site and the people here to give us advice being that we know nothing about this whole dialysis thing. Can anyone give me suggestion, should we try again or suggest they give his fistula more time? His Kidney function is down to 12% and he has been feeling really bad lately. :thx;
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His fistula was done on April 14, he has also had two prior angioplasty (one on 08-28 and one on 09-11) to try and get it to mature.
Has he been exercising it?
8)
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Yes, he squeezes his kidney that they gave him daily. The one doctor says there is a vein that is taking some of the blood flow away from the fistula he suggested that his vascular surgeon do another surgery and block off that vein, but his neph felt this was not necessary.
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My advice: Listen to the vascular surgeon. HE is the one who knows about fistulas.
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You guys are a hoot.
My husband (MM) is starting hemo dialysis Monday.
Here are my questions:
1. To whomever has trained through Davita on home hemo: Does it really take 4 whole weeks of 6 hours days to train?
2. I had 2 other questions but forgot them during the registration process! :O) I'll post when I remember them.
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I remembered! ......laugh......
2. Those of you on short daily home hemo: when you first trained how long did they do your training hemo? How did you feel after the first time?
3. Those on short daily home hemo: Many have said they are wiped out after the 4 hr in center hemo.....is the short daily home better for you? Do you feel better? Are you wiped out after a treatment like the 4 hr people say they are?
4. Eating while on the machine: the training nurse said I can bring a 'snack only' for MM to eat while on the machine (there at the center during training), we will be there through lunch. There is a reason people call us power grazers....we are not plump but we do like to eat and eat a full meal. Why would the nurse say he can only have a snack at the lunch hour?
Thank you
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1. To whomever has trained through Davita on home hemo: Does it really take 4 whole weeks of 6 hours days to train?
Training times vary from center to center. I did 2 weeks of training to take home a NxStage, but I was thru a private center, and they sent me home when I was ready. Other patients there have trained longer, just because they weren't comfortable alone after 2 weeks.
2. Those of you on short daily home hemo: when you first trained how long did they do your training hemo? How did you feel after the first time?
3. Those on short daily home hemo: Many have said they are wiped out after the 4 hr in center hemo.....is the short daily home better for you? Do you feel better? Are you wiped out after a treatment like the 4 hr people say they are?
4. Eating while on the machine: the training nurse said I can bring a 'snack only' for MM to eat while on the machine (there at the center during training), we will be there through lunch. There is a reason people call us power grazers....we are not plump but we do like to eat and eat a full meal. Why would the nurse say he can only have a snack at the lunch hour?
Thank you
The Nxstage time varies depending on how much fluid you are pulling off. The prescription isn't written for time, but rather for amounts of fluid to be processed. I don't know what the time would be for a standard hemo machine.
I felt better from the first run, and never got the washed out feeling at all on home hemo.
They worry about choking and nausea if you over eat while hooked to the machine. I'd just bring lots of little snacky things that will add up to a lunch, instead of a big heavy meal.
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Thanks so much for the info. We will be on the Nxstage machine. Okie Dokie about the little snackie things, will do. I guess I'll hovel in the other room eating my full meal. ;D
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Paul: I agree about this site. Actually l've learned more on here than from the doctor and the dialysis class combined.
I completely agree. Its as quick as they can get me out the door. I know the docs are busy, but until I found this forum, i felt really in the dark, things are starting to make more sense now!
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my brother is in the process of seeing the surgeon for his fistula..he is having terrible night sweats right now and has been on dialysis since he went into the hospital for walking pneumonia on January 15th..it shut down his kidneys, he had congestive heart failure and also blood poisoning from the buildup of toxins..he was in critical care for weeks. The doctors didn't say much and we have no idea what to expect. he was told he would feel better in a few weeks but after he got home from rehab, which was about a 5 week point for dialysis, he still isn't feeling the promised million bucks. Big surprise. Any help, especially from another person in his situation(wheelchair) would be great..he has had a few complications from a paralysis standpoint. I get so mad since the doctors who don't specialize in this field are very insensitive to his needs. Thanks for any input..it's MUCH appreciated!!!
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Sorry to hear about your brother's troubles.My mom was in a similar situation when she started dialysis.She uses a wheelchair ( can walk with limited mobility ).She suffered through night sweats,no appetite, and was constantly tired.( At the time she was in a nursing home for rehab) she was the only patient that we knew of that was running their air conditioner in Oct. and Nov.
It may take a while before he starts to feel good ( I don't know about the million bucks part ).Sometimes it depends on the patients clearance rate on dialysis and what their labs show.It takes a lot of patience on our parts when our family members are suffering.I hope things start looking up for you and your family soon.Take care
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Hello,
My mum who is 90 has recently been told that she has a reading of 14% kidney function. This was due to a possible overdose of Candasartan (16mg per day) which was prescribed for high blood pressure, a problem she has had for years. She was well up until December 2009 when she was taken to hospital for tests following a blood test that showed function had dropped to 15%. She was told then that dialysis was a probability. We are to attend a session with a specialist to talk about her condition and treatment on April 29th. She is also due to have an MRI scan shortly.
I have a few questions which I hope someone can help me with?
She has been given a choice of PD at home or HD at Ilkeston hospital, Derbys, near where she lives. I have read some articles and literature on this and it all seems quite scary, especially given her age.
It has all been quite a shock to her as she had not realised that this would be a lifetime thing and she has up until now had fairly good health. She lives on her own and her initial reaction was to opt for PD at home, but I wonder how practical this may be? Is nursing care available throughout the day on the NHS or would she be expected to do all the procedure herself?
My opinion on this is that to start with at least it may be better to elect for HD at hospital, but I have heard that nocturnal sessions are better if possible. Does anyone have any knowledge regarding this at Ilkeston. I know that there are restrictions on diet, but I have not been able to find anywhere that discusses in detail what the limitations are or what happens if they are not followed?
I have also read that her life expectancy could be as little as a few months up to probably at most a couple of years? Can anyone confirm this? Do I tell her?
Finally, what is the prognosis if she elected not to have any dialysis in terms of life expectancy and what would her quality of life be compared with dialysis which I understand can leave people 'washed out', especially given her age.
She continues to have treatment for stubborn high blood pressure and is being monitored. In addition she is prone to a persistent UTI and is given low dose antibiotics for this, however I have also read that certain antibiotics can also adversely affect renal function?
Sorry for so many questions but this is all very new to me.
Regards
Graham
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graham, Sorry to hear about your mum, I live in Bulwell so not to far from you. What can I say, if your mother goes on to do dialysis she will have two choices CAPD or Hemo, she will have to have a catheter inserted in to her peritoneal (tummy )or a line or fistula in her arm for Hemo. If she does PD she will have to do it 4 times a day 7 days a week. This is a gentler way of dialysis but can be time consuming especially if you are old and you would need to have room for all the fluids and paraphernalia that comes with it. Do you think she would be able to cope with this, I would not think so. Hemo is done normally 3 times a week and I believe you have a good dialysis unit where you are. You are picked up by hospital transport and taken to the unit and back.This is also time consuming, waiting a round for transport etc. but the onus is taken away from you doing any thing. You are mostly tired when you come off Hemo. Diet is a main consideration, you have to watch what you eat and drink but the dietitian gives you good guidance about what to eat and drink. All in all it is a big thing for your mother but there is also a social side to it when my husband was on hemo at the city hospital there were lots of elderly people there. I notice you say her blood pressure is up it is probably because of the toxins in her body, dialysis will bring this down when it starts to clean them out. Hope this has been helpful.
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Graham - everyone is different and everyone's experiences will vary based on their root condition, anything else they suffer, and any other number of things. We have a lady in our unit right now - I am not certain of her age, but I reckon it is 85+ (you just don't ask a lady her age!! :rofl;) and she is absolutely feisty! Already planning to visit her son in Moscow next year and do dialysis there. She had a bit of a rough start, but is settling down well and as I said is not going to let D slow her down! Some of it can even come down to attitude.
Given your mother's age I am sure the best would probably be to do hemo in center at least at first while she stabalises and they can monitor her etc. The choice between home PD, home hemo, in centre etc is really going to come down to what the docs think she can handle, and what she wants also.
As for how you feel - again it varies... washed out I guess yes is very common. Tired.. but other times quite a bit of energy(at least for me). More dialysis (eg: nocturnal) is better in general for everyone, but it may not be for your mother.
re diet - I guess there's not a lot of specifics because dietry restrictions can vary by person based on their specific situation. eg: some may be low in potassium and need more, while others may be high, so need less... and some may have a strict fluid restriction, and others not based on their output - it's definitely NOT a one size fits all situation. Generally though you need to watch foods high in potassium, phosphates and sometimes calcium. These are long lists so a dietician will go through that with your mother based on her labs and where she is at. It is reviewed on a regular basis (I just had mine this week :) ).
As for a choice to not do dialysis? Absolutely reasonable given your mother's age. She could last anywhere between 2 weeks and a few months - it's really hard to say because there are so many variables. Doing dialysis will keep her going of course. I guess it's her choice about HER quality of life at that point - not something we can really help decide.
I would say it's time for you, your mother, other family members to sit down with the neph and renal team and discuss all these issues.
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A big thank you to everyone for your help and support!
I think I know a lot of the medical stuff already after doing some research, but it always helps to talk it over with people who have been, or are there, so to speak.
It is more about how I break it to my mum really about what could happen. I don't want to give her false hope about it and at the same time I don't want to sound like a harbinger of doom. She thought at first that dialysis was a temporary thing and she would get better, so that is shock no.1. But as everyone's case and situation is different the statistics can be meaningless and therefore that is the way forward and to give her as best an outcome as is reasonable. She is in relatively good health and has a positive attitude, which I am sure can help. But, just a warning that time could be short. She is a sensible and practical soul who is very strong and would want to know the truth in order that she can put her things in order for peace of mind. I see her tomorrow and I was worried what I would say to her as everything seemed so negative, but now the path is clearer.
Thank you again for helping me with this. I am sure I will be in contact again.
Graham x
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I spoke to my mum today and she was quite accepting (though sad and disappointed and wary) of the situation after hearing her options, but had some questions I could not answer:
A couple of questions:
I understand that before hemodialysis an operation is needed to facilitate dialysis, usually involving the wrist and this happens 4-6 weeks before the start of dialysis?
Is there an equivalent operation, on the stomach, 4-6 weeks prior, for PD?
Lastly, my mum wants to know if she can bathe safely and comfortably with either of these options without danger of infection?
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I've never done PD but someone will chime in on that I'm sure. You could also do a site search for showering and peritoneal.
For hemo they create a fistula in the arm (as long as the veins are suitable...but if they aren't another possibility is a graft which is made of a synthetic material into which the needles are inserted). Once it heals, showers are no problem. If dialysis is required before the fistula has matured and is ready to use, they will put a catheter into the upper chest/neck area. That is usually a temporary measure and showers are NOT recommended as the catheter goes right into the heart and infection could be serious indeed. One potential issue for your Mum, because of her age, is the size and state of her veins and so a good vascular surgeon is important, as is vein mapping to see whether a fistula is a viable option.
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my question is why do you people all hate dialysis? ive been on it since i was 15. I'm 18 now. I did hemo three years and just recently started PD. things are frustrating yes, but you could have it a lot worse. I went to the marysville davita in California for hemo and the greatest people worked there. they made it so easy. I wouldn't ever complain about it. I now am in PD and the nurses made the transition so easy. And even when i had unrelated trouble at home they made it easy as well. Dialysis keeps me, and all of you, alive. So why complain. It's saving your life. Good luck to you all, may you all get kidneys. But really there is NO reason to "hate" dialysis.
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Teniya, Please go introduce yourself and tell us your story (like the directions say).
Let's see.... you have not had to lose your job, make decisions about your young kids, get divorced due to your spouse not being able to handle the situation, lose you home because you can no longer PAY the mortgage and ride the bus because you can't drive anymore.
So, yeah, If I lived at home with mommy and daddy and had everything paid for I may not hate dialysis either.
Now go read the rules of this site and introduce yourself. Then we may listen to you. :cuddle;
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I hate going to the dentist. Some people don't mind it as much as I do. Does that make me a negative person? I am grateful that they save my teeth, but I will never LOVE dental work. Dialysis is not the same for every person and we need to be open to each other experiences. Even if you don't understand, perhaps you can accept that people respond to things in different ways.
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You wouldn't think it's so bad if you look at photos of patients on dialysis issued by companies. Grinning like idiots enjoying erotic stimulation...
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You wouln't have been a model for these photos, would you, Stoday?
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Welcome Teniya, I'm glad D has gone well for you. This site wasn't created to hate on D. It was created to give people like us a place where we can say what we need to say and not be censored. Epoman, the one we all owe thanks for creating this site, explains it this way, "I started this site so dialysis patients can come and say what they really feel. "I hate dialysis, yeah it keeps me alive but I still despise it". I want people to be able to come here to vent and share their experiences. If you or someone you know are about to begin dialysis feel free to ask any questions. However be prepared, you will get the truth and sometimes the truth is hard."
See this thread - "Why I started this site, and what this site is all about. READ HERE FIRST."
I get my PD catheter tommorrow, and I hope my experience will be as good as yours.
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Teniya, take a few minutes and read through some threads. You will find this is a very positive and supportive site. I think we would all trade in our bodies for healthy ones with no problems. I hate kidney disease. I hate that some people have cancer. Doesn't make me negative. I also hate that you have had to deal with all of this at such an early age. Please go to the introduction section and tell us a little about yourself. I look forward to more of your posts.
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Hey Teniya and welcome to IHD.
I never see the "hate" part of this site's name to be at all negative - even though it sounds that way. I'm so glad your experiences, so far, have been very positive - that's fantastic. Also perhaps you are one of the lucky ones and do not face many restrictions from dialsyis - eg: dietry, fluid etc which definitely is a pain in the arm to deal with. Maybe you even enjoyed some respite from school while having to do hemo (I imagine maybe I would have!!). As others have said this site is very supportive, yet honest about it. Some of us face different situations where it isn't plain sailing, or the disruptions to our lives, work, relationships because of this disease are very difficult to deal with at times. Yes, we are VERY lucky to have dialysis in its various forms as an option - unlike some others with organ failure, but that doesn't mean we need to think life is dandy with it. Yep, keeps us alive, but you need quality of life as well as quantity. Most of the time I feel the quality, but there are times when it's lacking. Each to their own. I still hope you will be part of our community and contribute!
RichardMEL, Moderator
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well the fact that a person replied saying i had to live with mommy and daddy and had everything paid for. seems to me like this is a negative place. i wasnt insulting ANYONE. i simply asked and stated my opinion.
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well the fact that a person replied saying i had to live with mommy and daddy and had everything paid for. seems to me like this is a negative place. i wasnt insulting ANYONE. i simply asked and stated my opinion.
I am negative so don't let that offend you. Go to "introduction" (like everyone else) and tell us about yourself and then I won't jump to conclusions.
:cuddle;
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It's not all wine and roses around here. IHD can be a minefield if you let it because there are so many different sorts of people here who have many different kinds of experiences tainted by the spectre of illness and fear. A lot of us are older and have lost so much because of kidney disease and/or dialysis, and many of us don't always feel grateful. We don't judge people's emotions or reactions. They are what they are, and we accept them on that basis. Many people have good reasons to hate dialysis, and honestly, it is not your place to tell them that they are wrong.
This is not a negative place. Far from it. There are negative posts from people who are going through tough patches; this much is certainly true. Lordy, I complain with the best of 'em! The rest of us come along and offer support, understanding and information. I don't know what could be more positive than that.
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first off the person that insulted me apologized and thats settled. secondly. i never told anyone they shouldnt be upset. i said god wouldnt put us through was we couldnt handle. that just means look to god for help,. i simply asked a question and offered god as a resolution to everyones fears and doubts about life on dialysis. now if you want to pick a fight id suggest doing it with someone else I love life and god. you shouldnt judge people so harshly.
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Teniya, I dare you...post a quote from someone here who has judged you harshly. I dare you. I've read all of the posts to you, and the word "Welcome" stands out the most often.
Not once have you mentioned "God" in any post. You have not offered "God" as any sort of resolution to anything, so that is an untruth. If it were true that God doesn't give us more than we can handle, then no one would ever commit suicide nor sink into depression or drink themselves to death, so that is another untruth. Besides, it is not up to you to offer God. God offers Himself.
And I am beginning to suspect that you are not a "sick little girl" because you have yet to speak one single word of truth.
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read what i wrote in the introduce yourself section. then youll see that all i believe is that god is the answer. and you were RUDE and judging me. if you cant find better things to do maybe you should go to church and thatll take your time up.
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and also God relies on us to spread his blessing and his word to everyone who is disbelieving. so it is up to ME and everyone else in his presents to let people know he's there for them. So I do offer God and I do praise him. So there for you are wrong ma'am.
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Teniya you can say my name "old bat" aka "Rerun". It is fine with me.
Honey, you would be surprised who is on your side. Now, calm down and start reading this site.
You came in here, not introducing yourself and started "judging" us, so you get what you get. If you had read the rules: http://ihatedialysis.com/forum/index.php?topic=540.0 we would not be having words.
Let's start clean.
Old Bat, Moderator
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i wasnt calling you an old bat. i wasnt judging i was asking. theres a difference. then i stated my opinion on my experience. I didnt say. you are all stupid for hating dialysis suck it up and be a big girl. No i said my dialysis life was easy and i feel everyone should love life and appreciate what we have. not in those exact words but thats exactly what i meant. then i wished you all luck. i hardly think that deserves a a brutal tongue(type) lashing.
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This subject of this thread is about starting dialysis.
"Have you been told you need dialysis? or will soon? Well ask questions here and get a straight answer from a fellow patient."
Please stick to the topic and take the discussion elsewhere.
okarol/admin
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OK, OK, let's start over.
You are very welcome here, but one of the rules here is we get to say what we want without censorship. No cussing or calling names.... So, you may state your opinion, but so does everyone else. Some people cannot handle that and leave. Too bad too sad, but that is why this site was developed.
Rerun, Moderator
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This site is called I HATE DIALYSIS, NOT I LOVE DIALYSIS and I'm sorry but God has nothing to do with me being on dialysis, a doctor who was an idiot does.
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We hate dialysis but we love life, which is why we are on dialysis in the first place.
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I agree dialysis is a necessary evil in order to live life, but I really don't think God has much to do with it, but I am more spiritual than religious
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God has everything to do with your existence so obviously he has to do with you being put on dialysis. You can be spiritual and religious at the same time. It's one thing to insult my ignorance and judgment, but if you would be so kind to keep my faith and religious beliefs out of it i'd highly appreciate it. It's not fair for you to insult my God.
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I am on dialysis because of a negligent doctor, not because of God, and I'm not the one shoving my beliefs in others faces.. and I am a positive person btw, just because I am not always happy about my situation and vent, which by the way is what this site is for- does not make me or anyone who does the same a negative person. I apologize if I have offended you but this site is made for us to come and vent and to support one another, it's not Church.
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:police:
Let's take this discussion elsewhere. This topic is for new people who have questions about dialysis.
I'm guilty too...... but let's stop this conversation here. :police: (he needs a whistle)
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I agree, lets just squash it and keep the topic to dialysis related issues!
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Teniya, I'm sorry about today, I was just angry about some other things and I think I took it out on you, and thats not right so I apologize to you, and am sorry if I offended you or anyone else for that matter, but I'm human and make mistakes.
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karen547, :cuddle; Some days are just harder than others.
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Hi Guys,
My mum, who is 90, has now had her GFR drop to 14, it was 15 in December when first detected. She is due a meeting with her consultant following an MRI scan and then a chat from a Nephrologist later next week about kidney disease and options for treatment to which family and friends are invited. Sounds like a group meeting sort of thing with other families I guess?
My questions are:
Although she has been advised generally about diet restrictions; eggs, dairy stuff and salt etc. Should she be looking at a properly regulated and restricted diet now, rather than general advice?
At what GFR does dialysis have to start? I know that operations to fit fistulas etc, need 4-6 weeks beforehand, so is this something that may get recommended to do now in preparation ?
Sorry there is so many questions. I have tried to find answers elsewhere in the forum first and in doing so have come across many moving stories from you good people out there. Thank you for your honesty and support.
Regards
Graham
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"When to start dialysis" is the $64,000 question. I know my neph starts really advising to start at GFR 10, but if you're feeling really crappy, he would start you earlier. That's a decision that your mum and her doc need to make. Many patients will tell you that you will WANT dialysis when you're ready!
My gfr suddenly dropped to 18 after many years hovering in the 20's. At my next appt, it had dropped to 15, and that's when my neph wanted me to have the fistula done. It has gone back up to 17, but as hard as it was to finally allow that fistula to be created, I know that it is now maturing and should be ready well before I need D, and that gives me peace of mind.
Re diet, her labs will tell you whether or not she needs specific dietary restrictions. It's potassium and phosphorus she needs to be concerned with. It would be a good idea for her to see a renal dietician who can give her more than just "general advice". There's also plenty of info online, but a renal dietician will be able to give better advice for HER. For instance, my neph wants me to have MORE sodium for reasons that are complicated, and this is not usually the "general advice".
Ask as many questions as you want! It's not always easy or quick to do searches for specific answers, so just come here and ask!
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OK here goes: I DO NOT want to bitch too much. But every time I go to my doctors, they look at me and tell me I only have 1-2 months to live...if I do not start d the D word. Can someone please explain (no sugar coating) what happens next?? I am really pissed off, scared and confused...I guess the needle things scare the hell out of me. I also am still confused what happens next. These ###%^$ doctors just are horrible with dread news and bad futures. I play guitar i hpe I can keep this up. JUst like I have stated before though: I am so glad to have found this site.
Any info would be very much appreciated..................... :bow;
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OK here goes: I DO NOT want to bitch too much. But every time I go to my doctors, they look at me and tell me I only have 1-2 months to live...if I do not start d the D word. Can someone please explain (no sugar coating) what happens next?? I am really pissed off, scared and confused...I guess the needle things scare the hell out of me. I also am still confused what happens next. These ###%^$ doctors just are horrible with dread news and bad futures. I play guitar i hpe I can keep this up. JUst like I have stated before though: I am so glad to have found this site.
Any info would be very much appreciated..................... :bow;
Hi guitarmaker and welcome to the neighborhood.
You don really give much information so I will guess. I am guessing that they are looking at blood test results and see that you are reaching the point where your kidney function has declined so far that you are very close to needing an artificial means of cleaning your blood to keep you alive - dialysis. Okay. One of three things happens at this point:
A. You decide not to start ever and the toxin buildup and fluid overload (if you are retaining fluid) will kill you eventually
B. You decide to (or just happen to) wait until you are really sick and you will end up in the emergency room, later admitted, having a temporary catheter inserted in your neck or chest to start you on dialysis and a permanent access - fistula or graft being placed in your arm. You will be stabilized in-patient and then assigned to an outpatient facility for a lifetime of dialysis treatments (there are treatment alternatives).
C. You very proactively tell the doctor that you would like to have a graft or fistula placed so that it will be ready for use when you have to start dialysis. I believe grafts average 3 weeks to be ready whereas a fistula averages many months. If you are already being told that you only have a month or two to live, it may be too late for either. Just get the catheter placed and make the arrangements to start on a nonemergency basis.
C is (in my opinion) the best choice because it gives you some control in that you are not in an emergency situation. I hope this helps and it is the kind of info you were looking for. If not, ask away. You will find a wealth of information on this site. I hope your doctor is doing more than just scaring you.
Regarding your guitar, if you can play now, this close to dialysis, you should be feeling better and be better able to play after you start. I am not a musician, but please mention the guitar to the vascular surgeon who will create your access so that it can be positioned with your guitar in mind.
Alene
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guitarmaker,
It would be helpful if you got a copy of you lab slip and looked at the numbers for creatinine, GFR, BUN and HBC. But if they're telling you it's serious, I would take one of aharris suggestions here.
Or, if you're concerned about your arms, you can explore the option of peritoneal dialysis where theres a tube in your abdomen and you do daily fills in your abdominal cavity so the toxins are removed by osmosis. No needles. Many people find this to be a comfortable way to go, but everyone is different.
My suggestion. Try one of the options. See if you feel better. See if your labs improve.
We are here for you - keep asking questions. Take care!
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I can only tell you that I dont reccomend you do what i did and wait until you are puking your guts out because your kidney function has gone off the deep end and you end up in the ER /hospital with an emergency cathter placement in your chest and emergency dialysis - NOT FUN. Better to go NOW and get your fistula and/or PD catheter placed and get started outpatient on dialysis.
A good vascular surgeon should be able to place a fisutula in your arm in a place that wont affect your guitar playing.
the good news is that you will feel better once you start D.
ROCK ON!!
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Thanks again: You have told me way more than the darn docs did. I guess I am going to look at option C. By the way this is the first time I have heard about PD? NO needles???? whoa boy it may be the way for me I am just a big chicken I guess. LOL And yeah this was told to me after blood work my cretin levels are way high. Any info on this procedure...PD would now be helpful.. Thanks again :2thumbsup;
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PD is a good option for a lot of people, but can involve a lot more manual work (bag exchanges and all that, or using the machine overnight). The thing to remember is that with the PD catheter in infection is a big risk, and you have to be careful in that regard. You also can't easily swim and have to be careful when washing that area.....
I don't do PD so others can tell you more about that, but here's wiki about it: http://en.wikipedia.org/wiki/Peritoneal_dialysis
With a fistula, doing hemodialysis, which you can do at home, or in a unit, where they do all the needles and all that stuff(so you don't have to worry). I do HD and it works well for me. Yes, you should have no problem playing while being on dialysis. The only thing you need to be careful about is to avoid lifting heavy items with your fistula arm, but that's not an issue with a guitar.
Sounds like you need to change docs to a neph you can relate to and feel comfortable with to explain to you everything you need to know.
I had my first neph was like yours. He told me "You have two months" when I first saw him. No preamble, no explaining.. BANG! Well that was 13 years before I started dialysis, and now 17 years ago... I didn't go back to him but got another neph who was much better and have been with him ever since. While being told you have 1 to 2 months to live if you don't start dialysis is pretty extreme it could be accurate, since those who quite dialysis usually only last between a few weeks and a few months, so you must be pretty close to needing dialysis.
This is pretty scary for you I can appreciate but don't think this is the end of the world or anything. Hopefully whatever type of dialysis you decide to do hopefully it will make you feel better and more able to do the things you WANT to do!!
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New website is really great for education on dialysis options www.renalresources.org - started by a long time dialysis patient
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New website is really great for education on dialysis options www.renalresources.org - started by a long time dialysis patient
I don't like websites where you have to join in order to read - seems presumptuous to me - I prefer to lurk for a while before deciding, but that's just me.
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New website is really great for education on dialysis options www.renalresources.org - started by a long time dialysis patient
I don't like websites where you have to join in order to read - seems presumptuous to me - I prefer to lurk for a while before deciding, but that's just me.
It's a Shad Ireland web site.
Maybe it's a way to build a list for fundraising.
8)
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New website is really great for education on dialysis options www.renalresources.org - started by a long time dialysis patient
I don't like websites where you have to join in order to read - seems presumptuous to me - I prefer to lurk for a while before deciding, but that's just me.
It's a Shad Ireland web site.
Maybe it's a way to build a list for fundraising.
8)
Yeah, I saw it was his - just bugs me that you cannot shop before you buy. :twocents;
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I don't like websites where you have to join in order to read - seems presumptuous to me
Me neither. But you don't have to use your real name and email. I just use the most recent spammer — works most of the time. ;D
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Ok guys,
I recently signed up for this site and put an intro in the intro section, and now I have some 'starting dialysis' questions. I have a couple, so please bare with me. I don't mean to be greedy but this place is a gold mine of knowledge and experience. I guess I'll just list them:
1. The obvious - the needles. How are they compared to, say, needles when you get your blood drawn? Do most people use the numbing cream?
2. Dialysis is supposed to help with sickness, but will it help with fatigue? I battle anemia and have been too tired to have a job and do many things for the past 6 months. I'm hoping dialysis will make me a functioning human again. I never got that sick so dialysis never became 100% necessary, and I still live at home so financially I could just take some time away from working/school. I'd like to be a fully involved person again, though.
3. The diet - how big of an adjustment is it? I pretty much eat/drink what I want now, while trying to keep a conscience about salt and dark pop. I'm not even 100% sure they'll make me diet; no one has said anything yet. I'll be starting dialysis within the next few weeks.
I may have more that are escaping me right now. Thanks in advance.
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You will get different answers, but here is mine:
1. Needles: Needles were my biggest issue. I hate them and they are huge. I use the lidocaine shots and bite my free finger like a bullet. 99.9% of the time the big needle doesn't hurt but I want to be ready. The lidocaine needles sting like a bee and who the hell likes that, but it is over in a few seconds. Having said that, I am the biggest wimp there is. And the needles don't hurt once they are in most of the time. There are the times that they get too close to a nerve or something. If I can do this you can too.
2. Your fatigue will get better, but you will forget what "normal" is until you get your transplant and you will notice right away what "normal" feels like again. You just learn to live with the way dialysis makes you feel but when you see your friends doing "normal" things that you don't feel like doing you realize again you are not up to par. You will feel more tired and washed out on dialysis days. The other days are good. So, you have to learn to plan your time wisely.
3. Diet: It depends on how much kidney function you have left. If you have to have your kidneys removed then you will have a huge change, but if your kidneys are slowly failing you will adjust slowly. Avoid salt and the high potassium foods and take your binders, watch your fluid intake and you will be fine. I eat what I want only no salt and bad food in small amounts. I'll have 1 piece of pizza and not everyday.
Hope this helps. :waving;
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I haven't started dialysis yet, so I can only answer the question about needles.That's because I and 7 other potential dialysis patents had a familiarization morning in the hospital's renal unit.
They passed the needles round so we could examine them closely. One old guy fainted! They were a bit big. Fat that is. Another guy fainted later, so only six of the eight finished the session.
My ambition is to stick myself when the time comes, so now I watch the phlebotomist stick her needle in. I find it stings less if you watch. One of the phlebotomists told me that very few patients watch, no more than on in a hundred. Try it when you next have a blood test & start getting used to watching.
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I haven't started dialysis yet, so I can only answer the question about needles.That's because I and 7 other potential dialysis patents had a familiarization morning in the hospital's renal unit.
They passed the needles round so we could examine them closely. One old guy fainted! They were a bit big. Fat that is. Another guy fainted later, so only six of the eight finished the session.
My ambition is to stick myself when the time comes, so now I watch the phlebotomist stick her needle in. I find it stings less if you watch. One of the phlebotomists told me that very few patients watch, no more than on in a hundred. Try it when you next have a blood test & start getting used to watching.
You have to watch VERY closely when they start accessing your fistula. You are looking at the angle off the arm as well as any angle left or right. One of my buttonholes is deep and straight on and the other is shallow but to the right. I am the only patient in my center that self cannulates. I believe that it does not hurt as much if I do it. Also, if the same person is accessing every time I believe that it is better for the longevity of the fistula.
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No problem with the questions - that's what we're here for!
1. With the needles - I just don't look :) I think about something else, or joke with the nurses(not a smart move to make them laugh when they're holding a needle I know >:D) usually I think about girls to make sure my blood is flowing properly :rofl; Seriously though I am a big wuss when it comes to the needles, so I don't touch them or look at them - it's easier that way. I don't use a local or cream though. 70-80% of the time it doesn't hurt going in - my fistula has hardened up enough so I just feel the pressure of it going in more than pain - so that's good.
2,. Yes, the tiredness... hopefully you'd go on epo or aranesp or similar to help with the anaemia battle. Hopefully that would help you feel better.
3. Diet/restrictions - more likely than not you will be asked to follow a renal diet of some sort AND follow fluid restrictions (this is most important). If you're required to take phosphate binders(likely) be very careful to follow those and have them with your food(otherwise there's no point). The more you follow the restrictions, as horrid as they may be, the better for you long term.
good luck!
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Thanks Rich,
I'm a wierdo when it comes to needles; I actually HAVE to look so I know when it is coming. I should be alright after the first few times and I get rid of the nerves about it.
I'm already on aranesp and it doesn't always work to keep my blood counts up. But anyways, I'm just hoping the dialysis alone will help with the energy.
I'm already on phosphate binders but no fluid restriction and only the most basic of diets (watch your salt.)
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Have you been told you need dialysis? or will soon? well ask questions here and get a straight answer from a fellow patient. I'll tell you the truth and not sugar coat it. I'm not trying to scare you just give you a straight answer
hello my name is helen , i started pd dialysis in july last year and only manged 7 months and 3 re positioning ops, decided to get a fistula fitted in march 10 this year, im terrified of needles and held off dialyisis untill this monday where i was rushed into hospital being very sick, i have no fluid restrictions but just want to know how can i calm my self down enough fo rthe needles and doe sit get any easier, im 36 and generally well just a scardy cat with needles xxx i have only done 2 days and already i feel very angry and down about the fact this is now my new life
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Hi Helen. As I wrote above I am not a fan of needles, and I never look.. but I have to say that for me, after 4 years of it, it is easier. I guess though I was never scared of the needles so much - just didn't like them and didn't really want to feel the pain. That has mostly gone away now and it's no real issue to get needled.. indeed these days it's kind of good to be needled because that means I'm about to start and then the countdown to finishing (5 hours ugh) is about on! :rofl;
I think what helped me a lot initially was the faith that the nurses doing the needling were all very competent and would do a good job. So far only one fistula blow in 4 years is pretty good I think. Given the confidence I have in the staff doing it, it makes me feel a lot more confident about how the session will go. Luckily I have great nurses!
I firmly do believe it does get easier. It has become more like a routine for me. And, as I wrote earlier, I like to distract myself when the needles happen - not really the pain even - just the thought of those needles sliding in.. I just don't want to look. Really though it's not something I even really think about these days.
Good luck with your needling!
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Needles
Try changing how you see the whole needle sticking process. If you think about how fascinating it is instead of all the scary stuff, it wont be as bad.
Focus your mind on something else and don't think about the needles at all. Try remembering something with as much detail as possible. Like your last fun holiday. Think about what you ate at the party, try to remember how each food tasted. try to remember every one that was there. If you keep your mind busy an happy things it will have less time to freak out about the needles.
meditation. Try focusing all your thought on your breathing. control the speed of your breathing. control the volume of air you take in. feel the air flow through your nasal passages through your throat and into your lungs. If you put all your focus on your breathing it will naturally relax you and keep your mind busy.
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Does your general health really deteriorate over time on dialysis? I'v heard that the longer you are on, the chances are that you will be too weak to receive a transplant increases. That is my biggest fear!
You "oldtimers" please let me know if this is true.
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Des, I think KitKatz or Zach might be the best to answer this one, but my opinion is that a lot probably has to do with both your attitude and how you look after yourself, by that I mean trying to keep the fluids in check and the labs stable, and doing stuff like exercise etc will keep you in decent shape. I feel about the same 4 years in as I did when I started, though I am sure my body is a bit worse for wear in terms of mild bone disease and other stuff, but I don't know that dialysis is soely responsible for "wearing you down" over time, though others might disagree with that assessment.
Of course my situation as a younger, relatively OK apart from kidney problems etc, patient compared to someone older, dealing with other complications that may not make it easy to exercise and do stuff like that, so they may well find it hard to maintain a generally healthy body while on dialysis.
I can understand your fear though. All I can say is what I say to myself - I'm doing my best to keep myself in reasonable shape so when that call comes I'm in the best position I can be in to accept a transplant.
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I agree with Richard. As long as you do some form of exercise (I walk, and I'm going to start a regular swimming routine), watch your fluid intake, and your blood levels, keeping them as close to normal as possible. load yourself up with info, food to limit or avoid. Go by your labs, as some people, like me, have a more liberal diet because of their labs.
some days you'll feel like your body is betraying you and falling apart, but other days you'll feel like you could run a marathon. I've been on dialysis now for a little more than 6 years, the longest I've been cuz I've had 2 tranplants, and I feel almost as good now as I did when I had a kidney. How you feel totally depends on how good dialysis you're getting
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Eleven years on hemodialysis and counting here. It gets a little easier and you do get used to the process. It takes time to get to feeling better. Check into all of the modalities of dialysis and choose the best one for you!
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My grandma has only been getting hemodialysis for about 3 months, so I know that it is probably way too soon to expect her to feel a lot better (she does seem to feel a little better). What I was wondering is will she ever stop feeling nauseous all the time? She doesn't actually vomit, but she gags a lot, especially in the morning or in the hour after a treatment. Also, her neph said the dialysis would bring her blood pressure down, but it's still really high all the time, especially on days she dialyzes because they don't want her to take BP meds before treatment. Do you think they might not be removing enough fluids? She only weighs 110lbs, so I think they might be afraid to take more off. All her labs come back good except protein, because she's not eating enough, and her phosphorous was actually too low from not eating. I don't know what to do to get her to start eating again.
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My grandma has only been getting hemodialysis for about 3 months, so I know that it is probably way too soon to expect her to feel a lot better (she does seem to feel a little better). What I was wondering is will she ever stop feeling nauseous all the time? She doesn't actually vomit, but she gags a lot, especially in the morning or in the hour after a treatment. Also, her neph said the dialysis would bring her blood pressure down, but it's still really high all the time, especially on days she dialyzes because they don't want her to take BP meds before treatment. Do you think they might not be removing enough fluids? She only weighs 110lbs, so I think they might be afraid to take more off. All her labs come back good except protein, because she's not eating enough, and her phosphorous was actually too low from not eating. I don't know what to do to get her to start eating again.
Ask the dietitian about protein supplements for renal patients.
They come in both powder and liquids.
One liquid is Novasource Renal by Nestles Nutrition.
8)
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My dad is getting ready to start dialysis next Tuesday...Is there anything that he should expect on the first day? Also, I live in Florida and he is in Philadelphia and lives with my mother and brother. Both of them will be working and he will be going alone...is it okay to go alone?
I read on the other posts that one should continue their daily routines as much as they can when on dialysis, and I will definitely pass this along to him. He has been feeling very weak and this past week was rushed to the hospital with stomach and back pains...also, the week prior he suffered from a nonstop nose bleed...I'm not sure if any of these symptoms are related to kidney failure. So, when he went to see his nephrologist, he recommended that he start dialysis now, and he made an appointment to start next week, 3x's a week.
So that is where I am with him right now...Any pointers would be great!!
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Should he go alone? I went alone. My brother/sister offered to go with me but I decided I was a big boy and went alone (I think I just didn't want them to see me cry when the needles went in... and I didn't even cry! :rofl;). He may feel weird (like I did) about having close family with him when he will probably feel quite vunerable. On the other hand he may also feel like he needs their support. I guess the important thing is that he gets the support he needs. Is he intending to drive himself? That may be the sticking point. I don't think it's wise to plan to drive out of D - specially after a first run - and moreso if he's already weak. So maybe if he doesn't want anyone with him, at least arrange for someone to drop him off and pick him up at the end might be wise.
As for what to expect the first time? I can only speak for my experience and what I have seen happen to countless "newbies" coming through my unit, but I expect his experiece should be mostly the same.
Expect a short run. Here it's 2 hours, and no fluid is taken off, and it is at a low pump speed - so basically very gentle dialysis. See how you go and if there are any major problems with the access and so on. In the US it may well be different, but hopefully they'd also start off slowly specially if this isn't an acute case (ie: it's planned).
They should run him through the usual procedure - ie: come in, weigh, wash the access (if applicable), set up the machine etc. Hopefully they will also explain what the heck is going on and hopefully put him at ease.
i think the most important thing is to not be afraid. yes, it's new, it's different, but it's something tens of thousands of people do every day without incident.
I am not sure about the nose bleed or back pains - could be anything. He should definitely run through that stuff with them when he shows up (in case they do not have that info in their notes) just so they know what he has been dealing with.
As for sticking to routines - yes, but given that he's weak and in pain he shouldn't be trying to do too much. Starting D is a big enough change. Let him get used to that before worrying about routines I think.
Good luck!
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RichardMel, Thank you for the response...I think he is going to go alone and try it out. He does have a good attitude about the whole situation which I think is great!! I hope that after his first week he will start to feel a better...I will keep you updated.
Well wishes goes out to you too!!! :thx;
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A week is a little soon to really start seeing a more stable and improved feeling. Not to say that he won't, but the general consesnsus seems to be at least 2-3 months before you really notice the good effects of dialysis. Just be warned to not expect too much too soon. If he does - that's a bonus :)
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Hello... My dad is into his 2nd week of dialysis and this week has been good..no problems, except for his arm that they put the line in. It is all bruised...very black and blue and he says it is very, very sore :(
Just curious if this is common when beginning dialysis? The nurses tell him to ice his arm throughout the day when at home.
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I start dialysis on tuesday and the only question I really have is that I planned on driving myself (10 minute drive)....would this be advisable or should I expect to be pretty tired afterwards?
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I reckon you'll be OK, bigmike. But it might improve your confidence, if you are chauffered this first time. Anyhoo, Good Luck and give us a full report.
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They take it easy with beginners. First time will probably only last 2 hours and they won't take any water off. So npo problems driving.
I drove for the first month or so, but now I get a taxi. Most of the time I'm OK after a session, but sometimes I'm not. Quite unpredictable, so I just take a taxi every time.
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At our unit in the UK, they start you slowly, 2hrs twice a week for first month, then three hrs three times a week for 3 months, then it is altered according to your blood figures, some people get away with staying on 3 hrs, but most are increased to 3.5 or 4hrs and even 5hrs (dont know how they put up with that).
As for driving to and from D, I do because I have to, well not really have to, there is hospital transport but that is hit and miss, only the second time I used it, it was over 2 hours late, so I prefer my own car.
There is one bloke of about 50 who rides a motorbike to and from dialysis, so anything is possible.
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I ended up getting a friend to take me in for day 1 which was good for the company but I would have been totally fine driving. Actually I felt pretty good afterwards
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New here, and I have a few questions I haven't seen answered.
1. Being a type 2 diabetic on insulin, with a history of abdominal surgery, is PD pretty much ruled out?
2. Is it realistic to expect to be able to travel while an HD patient? (Have a vacation home not too far from a dialysis center, but I won't be there much over a week at a time during summer months and irregularly the rest of the year).
3. Are aquatic activities out once the fistula is in? (I'm not talking about water skiing, whitewater rafting or scuba diving, but simply being able to take a dip in the lake).
4. Does the recovery from dialysis get better/shorter over time? I've read about "washout" but nothing about how long it lasts.
5. Will my medications (insulin, coumadin, various beta blockers, norvasc, lipitor,) have to be "recalibrated" once dialysis starts? If so, does nephro. take command of this?
Nephro # 1 is one of those Indian doctors we all run across -- Dr. Puton A. Happyface -- who believes that it is still possible I may stabilize enough to avoid dialysis. Nephro #2 (second opinion at suggestion of #1) thinks I'll be a dialysis patient sooner or later, and probably sooner due to downhill path of GFR and heavy protein loss at initial presentation, etc.). So I get conflicting information and little in the way of specifics from them.
Thanks for input.
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Hello! I'm relatively new here as well (starting fourth month on HD) but I can give you my experience with a couple of your questions:
Travel while on HD: I am going to take my first trip in July. All I had to do was contact my social worker with the name and address of the center that I wanted to go to while I am gone. She got the ball rolling and will facilitate the transfer of records to the center where I will be a guest. From what I have heard, you don't get a lot of say on when you'll get your treatment at the center, but at least they can fit you in.
Recovery time from treatment: For me, this has definitely gotten better. For my first few weeks, all I wanted to do after treatment was go home and lie on the couch. Now, I'm up and about after treatment and after about a half-hour, I've already forgotten that I had a treatment that day. I think a lot has to do with the amount of fluid that is taken off. I really try to stay within my fluid guidelines as I find that for me, I do best if they take off 3L or less each treatment. Anything over 3L can be dicey in terms of low BP at the end of the treatment.
Medication changes: Yes, you may have to change medications. For myself, I had to double one of my BP meds and add on a third. I was completely taken off my cholesterol med as soon it was discovered I was in ESRD as it was contraindicated. The neph who prowls my center has taken care of all of the medication changes.
Hope some of this helps.
New here, and I have a few questions I haven't seen answered.
1. Being a type 2 diabetic on insulin, with a history of abdominal surgery, is PD pretty much ruled out?
2. Is it realistic to expect to be able to travel while an HD patient? (Have a vacation home not too far from a dialysis center, but I won't be there much over a week at a time during summer months and irregularly the rest of the year).
3. Are aquatic activities out once the fistula is in? (I'm not talking about water skiing, whitewater rafting or scuba diving, but simply being able to take a dip in the lake).
4. Does the recovery from dialysis get better/shorter over time? I've read about "washout" but nothing about how long it lasts.
5. Will my medications (insulin, coumadin, various beta blockers, norvasc, lipitor,) have to be "recalibrated" once dialysis starts? If so, does nephro. take command of this?
Nephro # 1 is one of those Indian doctors we all run across -- Dr. Puton A. Happyface -- who believes that it is still possible I may stabilize enough to avoid dialysis. Nephro #2 (second opinion at suggestion of #1) thinks I'll be a dialysis patient sooner or later, and probably sooner due to downhill path of GFR and heavy protein loss at initial presentation, etc.). So I get conflicting information and little in the way of specifics from them.
Thanks for input.
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1. Being a type 2 diabetic on insulin, with a history of abdominal surgery, is PD pretty much ruled out?
Not always, but have they explained to you what PD does to diabetics? There's sugar in the solution that sits in your abdomen all day. Not only will it screw up your blood glucose, but you will gain weight. Not a couple of pounds, either. Someone I knew gained 50 within the first 6 months.
The surgery may or may not be a problem - depends on the severity of the scar tissue, I believe.
2. Is it realistic to expect to be able to travel while an HD patient? (Have a vacation home not too far from a dialysis center, but I won't be there much over a week at a time during summer months and irregularly the rest of the year).
Plenty of hemo patients travel. (Check out Bill Peckham's posts - he's gone around the world.) You have to keep your xrays and EKGs updated, and you have to schedule pretty far ahead, though, to make sure the other center has space. You can't really do it spontaneously.
If you want the kind of flexibility that lets you pick up and go when you feel like it, check into a NxStage. People even take them camping and hook up at their campgrounds.
3. Are aquatic activities out once the fistula is in? (I'm not talking about water skiing, whitewater rafting or scuba diving, but simply being able to take a dip in the lake).
If you are getting a fistula, once the stitches/staples heal from the initial surgery, you can do whatever water activities you want. It's the PD cath that would keep you out of the water, as would a hemo cath in your neck or chest.
4. Does the recovery from dialysis get better/shorter over time? I've read about "washout" but nothing about how long it lasts.
I was on standard hemo for the first year. The first month was miserable, but it got better. I eventually got to the point where I could do more than just drive home and crawl into bed, but I was never running on full speed on D days. NxStage stopped the washout for me completely. Doing it more frequently helped immensely.
It also depends on how well you can follow the fluid restrictions. If you are always fluid overloaded, the odds are good your sessions are going to leave you wiped out every time. It's just not possible to shift 4 or 5 L of fluid off a body and not make you tired and queasy.
5. Will my medications (insulin, coumadin, various beta blockers, norvasc, lipitor,) have to be "recalibrated" once dialysis starts? If so, does nephro. take command of this?
Your blood pressure pills will likely have to be adjusted down in dose. The coumadin will also probably get shifted around, since it's going to mess with getting the bleeding to stop after your needles are pulled at the end of the session. My neph took care of it for me, tracking the bp and how well it was staying at a normal level. Eventually, I was off bp meds entirely. (Too high of a dose causes you to crash on the machine, and being on D generally has the effect of lowering your bp overall.)
Hopefully, your docs will do this for you as well. Unfortunately, there's no universal standard on that. If they aren't doing it automatically, ask them how you should be adjusting it, and keep in touch with your regular doc to make sure he knows what they are doing. (I was on aspirin for my retinopathy. They kept trying to take it away so I'd stop bleeding faster. My regular doc insisted I stay on it. Eyesight was more important than the nurses being able to get me out the door quickly at the end of their shift!)
I'd suggest taking notes when talking to one doc, and then pointedly asking the other, "Doc X says this. You say that. Which one is right? I need to know."
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Thanks for that information. I like this site as its "real" and not just "be happy" information.
I'll be checking out the NxStage threads here.
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I asked my doc , should i use a ball the squeeze for my arm . she told me that relay need to . reading here about you people using now i don't know what to do. has my fistula done last month (boy this all new) ???
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I asked my doc , should i use a ball the squeeze for my arm . she told me that relay need to . reading here about you people using now i don't know what to do. has my fistula done last month (boy this all new) ???
Yes. When I had my fistula put in, the hospital sent me home with a care sheet. They said not to do much to it for 6 weeks. After that, start exercising the arm. What you want to do is increase the blood flow in the fistula, helping it mature faster. With increased blood flow, your fistula will naturally get bigger, plumper. The care sheet said to squeeze a ball (ie. tennis ball, however, i found that too stiff so i used a foam ball that worked out well), bicep curls with a can of soup (the 500 mL ish can size, not the small 200 mL ish can size) - keep the reps high though, since you're using a light weight, or knitting.
I instead did intense weight training on my biceps to mature the fistula. I found that was more effective than curling a can of soup.
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LOL, I'm going to confuse you by telling you the exact opposite of what mcclane just posted.
I read everything available online about fistulas before I had mine created because I'm obsessive that way. ::) So after my initial mapping appt with the vascular surgeon, I was already asking him about squeezy balls and such; I specifically asked him what I needed to do to help my fistula mature. You know what he said? I quote, "Ignore it." I was really surprised. He said to of course be careful post op, but that as soon as I was healed, I should just continue on my merry way.
I was skeptical, so I asked my neph the same question, and he gave me the same answer! "Ignore it."
So, I did. And I have a marvellous fistula that is a year old and that I haven't had to use yet. I get it checked regularly and everyone says it is just wonderful.
So I would say a couple of things. One, perhaps it depends on where the fistula is. Mine is in my upper arm, and maybe that part of the arm gets more of a daily workout than your wrist, so maybe that's why I didn't need to "exercise" it. I do gardening and cooking with heavy iron pans, and I lift heavy loads of laundry etc...you know, the typical household drudgery...so maybe if I had a job where I sat behind a desk all day, I would have had to exercise it more.
Two, maybe if your neph thinks you will need dialysis sooner rather than later, he might want your fistula to mature faster, so maybe he would want you to squeeze balls and stuff.
I really suggest you ask your neph or your surgeon and ask them what their reasoning is behind whichever advise they give you.
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MM I was told the same..... doing exercise didnt do a thing for the fistula....might tone up your arm.... but really it does help the muscle surrounding the vein....fistula.... I think increased blood flow will come when you start using the fistula..... and the faster the speeds will increase the fistula size over time.... thats why I wanted to do slower to keep the fistula from getting really big..... as far a maturity..... that comes with healing.... it take time to heal up the area where the artery and vein was hook up..... like all surgeries.... no matter what when you first use your fistula the vein wall will be soft.... and you might / probably infiltrate a few times.... seems like everyone does until that area where they are sticking you get callused.... I was stuck maybe 6 or 9 times before they started doing buttonholes... they I used the same buttonholes for the last two years.... when I was in the hospital before transplant they wanted to dialysis me one last time.... I was self cannulating..but I did bring my glasses...so I let them stick me fresh..... well guess what they went into new area, a soft part that has never been stuck and yes they infiltrated me ..... not once but 4 times..... I then told them to go directly below my existing buttonholes and we were good to go.... I was so black and blue.... that its been three weeks and I am still black and blue from them....
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I'm back with a GFR of 16 and diabetes, so its coming. Went to first dialysis class the other day. The nurse there mentioned PD more than once. Reading up on it, it would be my preference. My question is one some of you may have faced already. If it works, great, but is there anything lost if it doesn't other than a scar on my belly? As far a s simplicity and apparent lack of disruption of general life activities, it seems easier. When I learned the NxStage machine was 70 pounds not counting the water purifer needed, the idea of protability seems less likely to me on home hemodialysis. If PD fails for me, then I'll do home dialysis if I can.
Does this plan seem reasonable?
I know the best alternative is automated night time PD, but as I understand it, you don't go there until you've passed the test of manual PD.
Any comments, suggestions, thoghts, experiences are welcome.
Thanks to all
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If you have a partner, either home modality could work for you (pd or hemo). Your doctor might be able to convince your center that you are capable of doing it alone though. Good Luck.
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Malaka, I've only been doing PD since August, so I'm no expert. But I can share what I know. The lack of interruption of my life's schedule is one of the reasons I chose PD. It was a bit tedious during the first month while I was doing manuals, but since I've been on CCPD I'm much more pleased. I still have to do a manual fill in the afternoon, but that's only about 20 minutes from hook to un-hook. As far as whether there is anything lost if you choose PD and then have to change over to Hemo; I would guess only time. Some of the other members that have made the switch will chime in, I'm sure.
JMHO-YMMV
Best of luck with your journey.
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Not sure why you mention the water purifier in the context of portability. When you travel, you have bags of dialysis fluid delivered to your destination just as you would with PD. international travel is a bit more problematic as NxStage don't have the infrastructure in place for arrangibg this like Baxter do. I would still recommend that you do Pdfirst and save your venous access for later. Don't let the medical staff talk you into having a fistula until the time comes that you need it if you choose PD. some do, and i would not recommend this because they can clot off and then you've wasted an access for othing, and have the scar to boot.
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Not to offend anyone but the idea of a fistula OR a hole in my abdomen really creeps me out...
Given that I live 10 minutes from a hospital, what are my best dialysis options?
Also - what is it really like? I'm sure that's been covered on this forum somewhere...
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Unfortunately the choices are limited. HD is through the blood and requires either a fistula/shunt or a catheter. PD is through the abdominal cavity and requires a catheter. I do not think there are any other choices. If there are, then I just made a boo boo.
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Yeah I know I'm going to have to suck it up and pick my poison like the rest of you brave souls...
Another question: what do you do to pass the time on the kidney machines?
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Ed is on a PD cycler at night. He has hooked up and cooked dinner, made coffee, watched TV, taken a shower, and of course slept. The machine has a 30' connection to Ed so as long as he stays within that he can do about anything in the house.
When he was on in-center hemo the dialysis center provided TV and internet. So he could use the computer, watch TV (which he did gloat since we don't have cable). He couldn't eat in-center but I assume people do at home though he couldn't move the one arm.
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Once I hook up to my PD cycler, I watch TV until bed time. I have a 20' line, so can move around a fair amount.
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Have you been told you need dialysis? or will soon? well ask questions here and get a straight answer from a fellow patient. I'll tell you the truth and not sugar coat it. I'm not trying to scare you just give you a straight answer
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Hi just got back from my Dr.apt and now am at about 20% function both kidneys Dr. wants me to have a stent put in to start the dialysis prossess but isnt sure when I will have to start he said could be 3 months maybe 2 years Is this a normal thing to do if not 100% sure if and when ill need dialisis treatment Sorry new to this stuff and would appreciate any comments Thanks
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Hi just got back from my Dr.apt and now am at about 20% function both kidneys Dr. wants me to have a stent put in to start the dialysis prossess but isnt sure when I will have to start he said could be 3 months maybe 2 years Is this a normal thing to do if not 100% sure if and when ill need dialisis treatment Sorry new to this stuff and would appreciate any comments Thanks
How are you feeling? Some people feel bad at 20%, others are relatively symptom free until they get to 8%. Our daughter had been at 17% for 3 years and is now at 13%. She has started Peritoneal Dialysis which is so much better for her compared to the in-center hemodialysis she did before her transplant 7 years ago. She still has no symptoms except her blood pressure is now controlled with medication. My point is, it can be different for each person, so keep asking questions and learn all you can so you can make an informed decision.
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I AM NEW HERE I HOPE I AM DOING THIS RIGHT......BUT ANYWAY I WILL BE GOING TO VEIN MAPPING THIS WEEK AND THEN FOLLOW UP WITH THE VASCULAR SURGEON ....I WANTED TO KNOW BUT FORGET TO ASK HIM AM I AT END STAGE OR STILL AT STAGE 4 ? CAN ANYONE ANSWER THIS FOR ME ? :oops;
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It all comes down to your lab numbers such as GFR and creatinine and BUN.etc. It really doesnt matter much as you are probably headed that way anyway as you are at the vein mapping stage now. That usually indicates your nephrologist sees dialysis comin fairly soon which is ESRD. So whether you are at 4 or 5 stage matters very litttle. I wish you well on your upcoming fistula surgery when it occurs as that will be your lifeline /.
If there is anything else we can do , just ask.
Just as a general referance, Stage 4 is above GFR 15 and stage 5 is below GFR 15. That is the cutout off.
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ok, my aunt has creatinine 7 ..and urea 87 ..so is that a perfect time to start dialysis ?? advise me please
also Dr told her to don't drink much water... and she has hypertension and HBP
and i would like to know one thing more.... after dialysis will be the creatinine level stable ?? will she can able to spend rest of her life like normal people ???
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The decision to start dialysis is different depending on symptoms, such as severe fatigue, swelling, nausea, etc, but not everyone has the same symptoms.
Labs give only part of the story, it really depends on how she's feeling. If she's feeling bad, she will feel better on dialysis.
My daughter started dialysis with a creatinine level of 4.3. She does peritoneal dialysis and still has a tiny bit of kidney function.
Once she starts dialysis she will need to continue, unless the reason for her kidney failure is acute rather than chronic. Do you know what caused it?
Dialysis helps do what the kidneys no longer can do, it's called replacement therapy. A kidney transplant works better for many people, but she should discuss that with her doctors.
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after dialysis will be the creatinine level stable ?? will she can able to spend rest of her life like normal people ???
Possibly, but at a much higher level. Dialysis is not intended to bring creatinine down to normal, nor is creatinine level used as the primary measurement of effectiveness.
Like normal people? Not a chance. She'll always be tied to the clinic schedule, or the different set of issues that come with home dialysis (my preference). That being said, it is quite possible to have a great life while on dialysis. In my case, it's something I do, but I still work 30 hours/week; my dog still sleeps next to me; and I do pretty much everything I used to do - just have a bit less time to squeeze it all in.
The more active role you take in your treatment, the better you are likely to do.
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I AM NEW HERE I HOPE I AM DOING THIS RIGHT......BUT ANYWAY I WILL BE GOING TO VEIN MAPPING THIS WEEK AND THEN FOLLOW UP WITH THE VASCULAR SURGEON ....I WANTED TO KNOW BUT FORGET TO ASK HIM AM I AT END STAGE OR STILL AT STAGE 4 ? CAN ANYONE ANSWER THIS FOR ME ? :oops;
Hello hwalker and hello ritamghosh,
... There are no precise rules when it is best to start dialysis, because it relies mainly on the symptoms of the patient
and how the patient is doing despite their ESRF... and how the rest of their body and other organs deal with the situation...
For example, I am now in my 9th year of being told that I am in end stage kidney failure with 6 months to go until dialysis...
... but I still remain being pre-dialysis and luckily I don't have any serious symptoms ... yet...
Mind you, I do a lot to keep myself pre-dialysis for as long as possible : I go for regular walks (I do believe that is very important)
and I only eat a very healthy vegetarian diet and only drink water or (kidney friendly) teas...
I am doing as much as I can to avoid dialysis for as long as possible and fortunately it worked well so far in my case
of chron. proliferative glomerulonephritis with end stage kidney failure...
... I don't know though, how this would work for anyome else with any other kidney complaint... because,
perhaps I was only just lucky and I am very hopeful that my transplant "comes along" whilst I am still pre-dialysis...
I have no idea how my kidneys, my body or how I am doing tomorrow, but for today I am still ok.
Best wishes and good luck from Kristina.
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Kristina..after 9 years of your vegetarian diet, and being successful in keeping your health what WOULD you go by to accept it is time to begin dialysis?
I am trying to figure out if not just low numbers, but if you must have 5 of 7 indicators. to go by....as in fatigue, AND throwing up, and swelling?
My numbers are good for now, I am controlling what I can with a low protein vegetarian diet, and amino acids, and feel great.
But I wonder if some people have severe fatigue..but no throwing up?
if ONE or 2 things alone are what makes the decision. I know we all want to resist as long as possible.
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Hello MuddyGurl,
To be honest, I am quite sure you will know when the time has come to start with your dialysis-treatment ...
... There came a point when I realized that "my two little fighters" were not continuing with their compromised function much longer
and I also began to become a little too slim because my food was no longer tasty ...
These were "my" signs to realize, that I had a "good run" over the years despite my kidney disease (chronic proliferative glomerulonephritis)
and a resulting compromised kidney-function for over 43 years and, in order to avoid any harm to my other organs,
I had to start dialysis-treatment as soon as possible ... Of course it was a very sad day when I recognized my situation,
but I am pleased to say that my first treatment was not as bad as I had imagined
and hopefully my treatments continue without any medical troubles...
Good luck wishes from Kristina. :grouphug;
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It looks like my luck has run out. Most of last year I plateaued at GFR 26 but in December I abruptly dropped to GFR 15. I've been re-educated on my options and had another session with the dietitian. I was paying attention to my diet (with a lapse around Thanksgiving) but I am now being much more strict. When I see my labs tomorrow I'll know if that helps any. In the meantime I see the neph on Wednesday. I feel fine. Sometimes tired but being retired I can handle that. A little itching once in a while on my legs. A random muscle spasm.
I'm guessing it's time for a fistula to be placed. Not excited about that. Anyway thanks for letting me share. I guess I need to be spending more time here reading on this site.
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Good luck for Wednesday, and really start thinking about your choices. And read as much as you can on the site so you can ask the 'right' questions.
Love and luck, Cas
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Good luck for Wednesday, and really start thinking about your choices. And read as much as you can on the site so you can ask the 'right' questions.
Love and luck, Cas
Thanks. We've decided on in-house hemadialysis three days a week. My husband and I went to an education session together. I had gone to one by myself last year. In the meantime I am sitting here writing down questions for the neph visit on Wednesday. There's so much helpful advice on this site. Thanks! :cheer: :cheer:
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Making the decision is the hard part. I think you will be happy with your choice.
Best of luck.
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Thanks. We've decided on in-house hemadialysis three days a week. My husband and I went to an education session together. I had gone to one by myself last year. In the meantime I am sitting here writing down questions for the neph visit on Wednesday. There's so much helpful advice on this site. Thanks! :cheer: :cheer:
By "in-house" I assume you mean home.
If they are offering a 3x weekly protcol, am I correct in assuming (yes, I know ass-U-me) you will be using the 2008k/Baby K? If so, I suggest you talk to your MD about the possible benefits of a QOD (every other day) schedule, which avoids the problematic "long gap" once a week.
When I started D, I would do anything to minimize the number of days with needle sticks. Now, that doesn't really bother me. (I an on 5x/week)
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Thanks. We've decided on in-house hemadialysis three days a week. My husband and I went to an education session together. I had gone to one by myself last year. In the meantime I am sitting here writing down questions for the neph visit on Wednesday. There's so much helpful advice on this site. Thanks! :cheer: :cheer:
By "in-house" I assume you mean home.
If they are offering a 3x weekly protcol, am I correct in assuming (yes, I know ass-U-me) you will be using the 2008k/Baby K? If so, I suggest you talk to your MD about the possible benefits of a QOD (every other day) schedule, which avoids the problematic "long gap" once a week.
When I started D, I would do anything to minimize the number of days with needle sticks. Now, that doesn't really bother me. (I an on 5x/week)
I misspoke. I meant in-center. Sorry. I'm still pretty new to this.
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We're heading to Gulf Shores, Alabama on Sunday and my neph thinks I should look into getting my fistula placed while I am there. (Even with my careful dieting I have dropped to GFR 13 in just a couple of weeks.) Does anyone know a great vascular surgeon in the area (Pensacola's not far from where we'll be.)
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Hi all,
My Mum found out 5 weeks a go that she has stage 5 renal failure. The doctor's said she may only have 6 months to a year to live. Another doctor said 3 months to a year max. Her kidney function has declined rapidly since 2015, it was only operating at 11% 5 weeks ago, but after a blood test yesterday this has now dropped to 9%. She has other serious health conditions such as COPD, type 2 diabetes (insulin dependent), hypertension, high cholesterol, CHF and two years ago she suffered from deep vein thrombosis and almost lost her life. She is a fighter that is for sure, but this latest news has come as a complete shock for her and for my family. From meeting with the doctors the feel seems to be for her to consider conservative treatment. She is only 64 years, and has fought so long, and wants to see her grand children grow up...they have told us the many complications that she may go through with dialysis and said it is dangerous if she has the operation for the cathether (peritoneal dialysis), and dangerous if she doesn't...
I asked at the dialysis education session if there were any support groups or people we could talk to that have been in a similar situation and are either on dialysis or on the conservative treatment. They gave me a card with a facebook group. My Mum is not on facebook and neither am I. She wouldn't know how to use facebook...we have seen the surgeon and he said they can operate, although we are due to see the anethetist on thursday, so it is all up to him whether he is willing to risk putting her under general anaesthetic. We just don't know what to do. I don't want her to suffer, especially with her COPD, she already has difficulty breathing as it is. But we don't want her to give up either. At the end of the day it is her decision as she is the one who is going through this, although knowing my family we want her to LIVE.
Any advice would be greatly appreciated..she has had an iron infusion which helped a bit, but now has a chest infection that has lasted for 2 weeks, which the doctors say may have caused her kidney function to decline even further.
We just don't know what to do :(
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She's got lots of health issues but not sure why they gave you a time limit. Are they suggesting hospice?
You could visit a local dialysis until and see what the PD training is like, and ask questions.
It's up to her, but it seems like it might be worth trying, for her, to see how it goes.
:cuddle; :cuddle; :cuddle;
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Thanku okaro
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I take it that most people say the fistala is the way to go. That is what my doctor is planning for me. Realistically how much does it limit your activities -- after it heals and you start to use it I mean. I'm talking lifting, bathing, fist fights. My most important hobby is the piano. Will I have to stop? Will vanity insist you wear a long sleeve shirt all the time?
I don't expect all of these answer but I just want to know generally what the limitations will be.
Also I'd like to know about people experience driving after the sessions. Are you too week (large city with lots of traffic). I've call all kinds of services for transportion and they are quite expensive.
Finally, I wish someone would simply say "I would" or "I would not" do dialysis if I lived alone and I am only a year or so shy of 70? I know the phrase that "no one can tell you what to do". I wish someone would try and put themselves in this position and not tell me what to do but surmise what they might do.
I'm not sure why more people don't opt for PD as it is much easier on your body and you generally have a faster "rebound" time once you start. Also it's easier on your heart and you have fewer dietary restrictions and much more freedom to do the things you want to continue doing.
That said, I have recently read an article (I'll have to search the link again) on a study done on people over 70 who start dialysis and later regret it. It seems that for many elders, dialysis is so hard on the body that they feel much worse after starting it than they did when they were experiencing the fatigue and other symptoms of uremia before dialysis. Many people in that age group discontinue dialysis after a short period of time so they can regain their quality of life and enjoy their last few weeks, months or years without feeling terrible because of dialysis. I have worked with many seniors on hemodialysis and can say with absolute clarity that it is very tough on the aging body. They tend to lose a lot of weight, suffer from appetite loss due to fluid and dietary restrictions, and are absolutely exhausted especially on dialysis days, then spend non-dialysis days trying to recover. Hemo is hard on a young body, but it can be devastating on an elder, especially one who is already frail and has other health issues.
I'm not trying to scare you, but you expressed a desire for someone to be completely honest with you, and these are my real-life observations from working in nursing homes and retirement communities with seniors over 70 on hemodialysis. I've never met a senior who opted for PD, but I suspect they would fare much better than those on HD. I'll look for that article again and try to link it here for you later.
Best of luck with your decision. Remember, no decision is the wrong one as long as you are at peace with it.
ETA: Here's the link I was looking for:
http://www.protectpatientsblog.com/2015/05/dialysis_maybe_not_the_best_ch.html
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Could not have said it better than beckums70. PD does have its draw backs but it is easier on the body because you do not have a pump sucking out the body fluids filtering out the garbage then pumping the fluid back in...... It sounds like people are being auto steered towards in treatment hemo than looking at the options available....... Now hemo could even be done at hone....... Hate to see what the electric bill is for running that equipment though...... The water purification system is a good size.....
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I can only enlighten you on the costs of Nxstage. 2 days on, 1 day off (mostly) Pureflow 60 liter Saks every 3 days costs £40,- in electrics a month