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

[bigmike]

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?

[galvo]

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.

[Stoday]

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.

[EnglishBelle]

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.

[bigmike]

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

[malaka]

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. 

[cattlekid]

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.

[jbeany]

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."

[malaka]

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. 

[redrider]

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)

[mcclane]

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.

[MooseMom]

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.

[tyefly]

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....

[malaka]

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

[ToddB0130]

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.

[Joe]

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.

[amanda100wilson]

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.

[goofball]

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...

[Shaks24]

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.

[goofball]

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?

[Sydnee]

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. 

[Joe]

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.

[stusainte]

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

[stusainte]

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

[okarol]

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.