Are you about to start dialysis? Ask any questions come here and get the truth.

[lunadatura]

New website is really great for education on dialysis options www.renalresources.org - started by a long time dialysis patient

[okarol]

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.

[Zach]

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.

[okarol]

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.

Yeah, I saw it was his - just bugs me that you cannot shop before you buy. 

[Stoday]

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. 

[Matt58044]

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.

[Rerun]

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.     

[Stoday]

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.

[YLGuy]

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. 

[RichardMEL]

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  ) usually I think about girls to make sure my blood is flowing properly  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!

[Matt58044]

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.)

[helenterrianne]

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

[RichardMEL]

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! 

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!

[Quickfeet]

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.

[Des]

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.

[RichardMEL]

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.

[Riki]

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

[kitkatz]

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!

[Mandyjane]

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. 

[Zach]

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.

[ccasnet]

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!! 

[RichardMEL]

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!  ). 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!

[ccasnet]

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!!!

[RichardMEL]

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

[ccasnet]

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.