For whom the bell tolls.

[jjneyjr]

The writing is on the wall! My numbers are bad enough that lasting another month would be next to impossible!

Bun is over 100 and creatinine is 11. I am tired all the time.

I must tell the nephrologist what I have decided tomorrow as she wants to install a permcath and start me on dialysis.

I am thinking that there is no way I can go through hemo. I hate the idea of needing a crash cart next to my dialysis machine in case they take off to much water. She tells me to try the hemo through the permcath until they can install a PD cath. They will put me on a transplant list. To me hemo dialysis is at best a midevil torture device. I don't want to be a kill joy but I have read a lot of posts about problems with the hemo. It seems to me that PD does not last very long. So maybe you guys can help me make this decision.

How long has everyone been doing PD. IE 1 year then the cath clogs or I got an infection or blah blah blah.

Being a nihilist does not help much as it is telling me the medicine may be worse than death. Thoughts?

I am with grips on my own mortality and I understand that we live and than we die so that is not a big hurdle that I have to deal with.
 
Is the nephrologist correct that I am too young or t that just her training?

Thanks,
Jay

[amanda100wilson]

PD is a good first off for diakysis.  It gives you the most flexibility and is relatively easy to use.  The main drawback is infection risk.  Mortality  rates are considered  to be no higher than for in-unit, three times a week hemo.  Long term, and this is even after  dialysis has ceased there is the rare, but real risk of developing EPS (encapsulating peritoneal sclerosis).   this disease can be debilitating, painful and in many cases, fatal.  I am telling you about the latter because many doctors don't.   Another alternative is home hemo.  survival rates can be up there with a cadaveric transplant.  even if you opt for PD, this is always an option later on.

[MaryD]

If you can hold out a little longer and get a PD catheter installed very soon, maybe you could avoid haemo.  They need four weeks?? to settle in, I think.

I have been doing PD for 18 months.  There are some people here who have been doing so for 10 years plus.

[MaryD]

Long term, and this is even after  dialysis has ceased there is the rare, but real risk of developing EPS (encapsulating peritoneal sclerosis).   this disease can be debilitating, painful and in many cases, fatal. 

I think this is why I am starting on physioneal instead of dianeal next week.  I comes as a double bag and is less acidic than the dianeal.  I did post asking if anyone else was using physioneal but no one answered, so I assume it is not used in the US.  It's cost is about twice as much as dianeal.

[MooseMom]

I think this is why I am starting on physioneal instead of dianeal next week.  I comes as a double bag and is less acidic than the dianeal.  I did post asking if anyone else was using physioneal but no one answered, so I assume it is not used in the US.  It's cost is about twice as much as dianeal.

I remember seeing your question.  I've never heard of "physioneal" or "dianeal".  Can you explain what this is?

Jay, I can only imagine how you must be feeling.  It makes me queasy.  I have read so many posts from so many members who are just about to start dialysis, and so many feel like you do.

Is there any reason why you have not already been evaluated for the transplant list?  Your neph should have referred you as soon as your egfr hit below 20.

There just isn't a treatment for esrd that doesn't come with quite substantial risks.

I am hoping that many IHDers will give you lots of reassurance.

Let us know what you tell your neph tomorrow.  Do you feel she is giving you enough information?  Is she pretty supportive?

[Riki]

Let's see...

From February 1991 to October 1992.. no issues, no even a skin infection.. got a transplant
From April 2001 to May 2001.. no issue.. got a fluke transplant in only a month
From May 2004 to December 2008.. peritonitis caused by flighty nurse who didn't follow procedure.. caused extensive scarring and can no longer do PD.  Have been on hemo ever since.

If you are diligent about cleanliness, you'll have no problems with PD, infection wise.  I never had any infections at all until I started allowing the home care nurses to do my dressings, instead of me or my mom doing them.  After that, everything went to pot.

btw, your neph saying you are "too young" is a big load of bull.  Nobody is too young for dialysis.  I was 12 years old when I first started, and I know lots who were younger

And another thing, dialysis, like everything else, is different for everybody.  I remember the horror stories when I began, about cramping if they take too much fluid off and all that.  it's never happened.  In 4 years, I cramped once, and that was because the nurse who hooked me up made a mistake and took off a litre more fluid that she was supposed to and nobody noticed.  In the beginning, I did pass out a few times while they were figuring out my dry weight, but once that was done, I never had another problem with it.  There was never a need for a crash cart.

[Henry P Snicklesnorter]

.

[Cowdog]

Jay, hang in there brother, I'm a few years ahead of you on this kidney failure trail. I was 51 (4 1/2 years ago) when things got so bad I wound up in the ER with creatinine of 14. Cath placed in ER and direct to dialysis then to ICU. I had put it off and denied I was that sick for almost too long. It was scary as hell and rough starting out but I hung with it. I can honestly say I'm in better health now than I was for the 5 years just prior to starting D. I don't know what other health issues you may be contending with. hopefully none.  I'm lucky I only have kidney failure. yeah I said ONLY and I mean it, lots of folks dealing with worse stuff than me. I'm in center TTS. I work at the job I've been at for 28 years, FMLA on T & T afternoons for D. I'm lucky and I know, clap my hands.
Learn all you can and as you learn more take more control of your health management, trust your neph but if you don't find another. You're at the spot now that you have to cowboy up. If I can help or answer any questions I'm here

Billy

[Riki]

That's true.  A lot of us only post when we've got a problem, when for the most part, problems are few and far between.  I remember once, my friend, Kelly, asked me how dialysis went that day.  My answer was "uneventful."  I forget which program we were using, but she gave me a thumbs up icon.  Those uneventful days are the norm, and the best.

[Sydnee]

btw, your neph saying you are "too young" is a big load of bull.  Nobody is too young for dialysis.  I was 12 years old when I first started, and I know lots who were younger

That makes sense I thought his doc was trying to say Jay should try dialysis he was "too young to DIE"

I was complaining on my facebook page that I will be starting soon. I feel like I will not last long and my aunt posted that aunt Travis (actually my great aunt) was on home hemo for 20 + years. so it can be done.

[Riki]

I have a friend who's 33 or 34 (I can never remember how many years younger tham me he is) and he has been on dialysis for more than 30 years, which means almost his entire life, so yeah, it can be done.

[jjneyjr]

Too young to die is what the neph meant!

Sorry,
J

[Angiepkd]

My personal motto with the whole dialysis thing is "it beats the alternative"!  I have been doing home hemo for a little over a month. I have had some ups and downs, but overall it has been fine.  Don't let the needles scare you. Mine only hurt when the nurse put them in. Once I started self-cannulating, the pain went away.  I mean it - there is no pain when I put in my needles.  The worst thing I deal with is picking the scabs off my button holes. Everyone is different, but if you keep a positive attitude, you won't find anything you can't get through.  I have my down days like anyone, but I feel so much better on dialysis, it's hard not to feel like it's worth it.  Hang in there and don't let the unknowns or the stories you've heard keep you from finding out how it will work for you.  I spent so much time and energy worrying, researching, and freaking out!  Hope this helps!  Good luck with whatever you decide. There is lots of support out there if you need it!

[amanda100wilson]

Moosmom, I have heard of physioneal  but not sure if it is available in US.  Dianeal, however, is.  it is used once per day as a long-dwell PD fluid, usef either by diabetics  since it does not contain ?dextrose  to avoid the risk of raising blood sugar levels because of absorption of this sugar, or by those whose peritoneum is a fast transporter resulting in equilibrium across the memrane being reached quickly, leading to re-absorption of fluid, and ultimately reduced ultra-filtration.

[jeannea]

I woke up from a coma on hemo. The doctors kept pestering me: do you want to do hemo or PD? I was so confused and sick. I did hemo for 6 months with a permacath while I got stronger and actually learned about my options. Then I did PD for 2 1/2 yrs til my transplant. No infections. I think it really helped me to have that time to think things over and adjust mentally to having to be on dialysis. I think you should get some dialysis and not put it off for at least 4 more weeks. By then you may be too sick.

[MaryD]

I use extraneal for my long dwell and in Australia it is the one used for long dwells.  Physioneal comes as a double-banger set of bags. The liquid can't be heat treated (sterilised) together.  The frangible between the bags is broken just before use so the liquids can mix.  Bi-Carb soda is in there somewhere.  The whole lot is less acidic and therefore I'm hoping that it might be a longer PD product.  I will still need to do three fills of physioneal each day plus my extraneal.

At present I'm using dianeal (1.5%) three times a day, so this will be replaced with the physioneal.

[Riki]

Moosmom, I have heard of physioneal  but not sure if it is available in US.  Dianeal, however, is.  it is used once per day as a long-dwell PD fluid, usef either by diabetics  since it does not contain ?dextrose  to avoid the risk of raising blood sugar levels because of absorption of this sugar, or by those whose peritoneum is a fast transporter resulting in equilibrium across the memrane being reached quickly, leading to re-absorption of fluid, and ultimately reduced ultra-filtration.

I think you are thinking of icodextran or extraneal..

[Desert Dancer]

To me hemo dialysis is at best a midevil torture device. I don't want to be a kill joy but I have read a lot of posts about problems with the hemo.

Piffle. You only hear about problems with hemo because those of us doing fabulous on it aren't here, we're out there living life as it was intended. Medieval torture device may apply in-center but I can assure you it is a bit of a stretch when you take it home and do it yourself. Because as everyone knows, if you want something done right you have to do it yourself. Take charge. Learn to cannulate yourself. Learn everything you can. Listen to your own body. Compare the home modalities (nocturnal, short daily, etc.) and don't stop until you have what you want.

If you do this I can guarantee you are not going to have a typical dialysis experience. After a while it will become routine and then you'll wonder why you put so much energy into worrying about things that really ARE within your control.

[Riki]

To me hemo dialysis is at best a midevil torture device. I don't want to be a kill joy but I have read a lot of posts about problems with the hemo.

Piffle. You only hear about problems with hemo because those of us doing fabulous on it aren't here, we're out there living life as it was intended.

Hellloooooooo... *waves*  I'm here, and I do great on in-centre hemo.  I just don't have a life outside of the house and dialysis.. *LMAO*