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

[Epoman]

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

[quietscream]

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.

[Epoman]

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.

[quietscream]

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.

[Epoman]

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.

[Andy]

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.

[Epoman]

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.

[quietscream]

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. 

[Epoman]

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. 

Is it Capasin or contain Capasin in it? I glad you fiqured it out.

[LifeOnHold]

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.

[Epoman]

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.

[Bajanne]

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).

[LifeOnHold]

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! 

[Epoman]

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.

[dwcrawford]

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. 

[paris]

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.   

[dwcrawford]

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.

[paul.karen]

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?

[Tinah1968]

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...

[dwcrawford]

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???

[Tinah1968]

DW,

I just got your message and I responded...  the Rodeo was fun the weather was bad

[dwcrawford]

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

[pelagia]

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

I find Marvin's positive outlook on life to be inspiring. 

[JasonEb]

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.

[JasonEb]

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".