Ask the guy on dialysis

Well here it is, one year after my first experience with dialysis and to celebrate, I’m creating a new “Ask the” thread.

A few years ago, I was told my kidneys weren’t functioning properly, I was given pills to help with the water overload. About a year ago, they stopped working and I started to swell. I went to the doctor who send me to the hospital where they started me on hemodialysis. That’s when they have tubes that are connected to your blood vessels and they pump your blood through a machine to clense it. This is what you usually see on TV or movies.

Last September, i started peritonealdialysis. This involves a tube in my abdomen. I fill my peritoneal cavity with a fluid that abosorbs water and poisons and I replace this on a regular basis.

I’ve about a dozen patients on HD right now. Do you find PD less taxing than HD?

Does it ever leak? What if you went upside down? Can you squirt someone with it (because if it were me, I’d try)? How do you get the fluid back out, or does it get absorbed or get peed out on it’s own? Will you have the tube for life? Ever use it to screw around with the guys at Jiffy Lube (because I would)? What is this magical fluid containing?

Are you eligible for a kidney transplant? What happens next?

Actually, I never found HD taxing as far as exhausting. I know some people do. PD gives me more freedom. While I was on HD I was never able to arrange a work schedule to fit around my appointments while PD gives me much more flexability.

No, it doesn’t leak, If it did, I’d have to go into the hospital right away. No, I can’t squirt anyone. It drains out to slowly.

The bags of fluid come in two parts, the fill bag and the drain bag with are connected with tubes. When i do an exchange, I lay the drain bag on the floor and allow the fluid in me to drain out. When It’s done, I drain the fill bag into my body.

I’ll have this tube or one just like it until I get a kidney transplant. The current wait is about 3 years.

Never tried showing it to the Jiffy Lube guys.

The fluid is basically sugar water. Different percentages of sugar depending on how much liquid I need to drain out of me. There are few other things in there designed to absorb the other poisons.

I just wanted to say hi Odinoneeye and thank you for starting this thread. It has been my experience that most people know very little about Peritoneal Dialysis. I’ve been on CAPD for almost two years after a long battle, and I do mean battle, with Nephrotic Syndrome associated with FSGS. I have had no problems with it so far and never once considered Haemodialysis as an option.

I’m currently exchanging four 1500ml 1.5% bags throughout the day. I was exchanging just one litre for over a year and found that worked well and was far more comfortable for me, but have now switched back to the larger volume. I recently had a very welcome two week break from dialysis to test my unassisted kidney function but unfortunately am now back to the old routine.

What does it feel like, while you’re changing the fluids?

How often do you have to change the fluid? How long does it take to do a complete change?

My husband’s former employer manufactures the drug which induces HD patients to create more red blood cells, which in turn helps the patient to battle exhaustion. Do you take this as part of your regime? I knew it as Epogen, although it may bear a different name at the consumer level.

I need to understand the PD more. I get the purpose of HD. It cleans the impurities out of your blood. Why the PD? Do you retain fluid in your pereotonal cavity? Why just there? Is it directly related to the kidney thing or is this in addition to the kidney ailment? Sorry…I’m slow today.

Is the “used” fluid a different color/smell when it comes out? Also, what do you do with the fluid after it’s drained? Do they test it for various toxins/minerals as part of your care?

Phouka - I havn’t finished all my testing for the transplant, but when I do, they will check a few family members to see if they’re compatable. If not, then I go on a list. They say it takes about 3 years to get a good match once on the list.

Jastu - Wow, I do 3 2800ml changes with 2.5 over night, a final fill of 2500ml 2.5 and a 2500 ml 4.25 during the day.

Sattua - When I drain, I don’t feel anything. Sometimes when I fill, it makes me feel like I have to go to the bathroom. If i don’t warm the fluid enough, it can give me cramps and if I don’t get all the air out of the tube before I start, I get a sharp pain in my shoulder.

Mama Zappa - I have a maching that does most of my exchanges overnight. During the day I have a change that takes about 1/2 hour.

Teela Brown - Yes, I take Epogen. I administer it to myself via shot. I take two a week.

Kalhoun - I’m not really sure how well I can answer your question. The peritoneal cavity is sperated from the rest of the body by the peritoneal membrane. I think the reason they use this is that the fluid stays there instead of going all over your body and can be brought out again easily. The fluid absorbs the waste products through the membrane.

Wonka The Sane - The fluid after it comes out is essentially urine (only with more sugar) . It basically has the same color and smell. I dispose of it in the toilet.

Thanks for starting this thread - I’d heard about this method of dialysis but knew virtually nothing about it.

How do you know how much fluid you need to draw out (i.e. what concentration you need to put in)? Do you look for swelling in your hands or something to use as a gauge? Does it vary from day to day if, say, you’ve been outdoors sweating a lot?

Do you feel as well on PD as you did on HD? (actually, did you even feel well on HD?).

How do the two compare for long-term health? Does PD work as well at removing toxins as HD does?

Do you have to watch your diet, like amount of protein or salt you consume? Do you have to eat or drink more or less of any particular thing than someone with functioning kidneys?

I mostly go by my doctor’s recommendation for what strength I use. However, I keep a supply of stronger and weaker solutions just in case. I weigh myself on a daily basis, take my blood pressure and check for swelling in my legs. If I spend a lot of time sweating, i do usually switch to a weaker fluid. Sweat is my friend.

I generally feel better of PD. PD is more constant. If I do it right (and I admit, sometimes I don’t) I’m pretty much fluid free all the time. However, with HD, I am more cylical.

From everything I’ve been told HD and PD work just as well long term. The only thing is that your chance of infection is much greater with PD because it’s up to you to make sure the conditions are as sterile as possible. I had an infection a few months ago and had to inject antibiodics into my bag. It cleared up quickly.

As for my diet. First of all, I’m diabetic, which is what led to the kidney problems, so my diet was already restricted. For purely kidney reasons, mostly, I need to be careful about my phosphorus intake. I take pills with every meal to help with that. I actually am supposed to eat more protein because protein is absorbed into the dialysis fluid so if I don’t get enough, I could suffer. Potassium is also an issue, but this is also absorbed so that’s kind of a balance game. The real problem is that cramping is a sign of too much or too little so if I start to cramp, I have to figure out which way to go.

I guess I’m lucky then but a lot of that would have to do with your size and muscle mass.

How do you find being hooked up to a cycler overnight? I have that option but I prefer to do the manual exchanges throughout the day. Also did you have any abdominal pain or vomiting during exchanges when you first started on the PD?

Odinoneeye, glad to hear you’re feeling OK on PD, hang in there. WinkieHubby only had to wait about 8 months on the transplant list before he got a kidney. He did hemodialysis (while continuing to work full-time, no less) and it really wore him out.

It has it’s advantages and disadvantages. I usually have to wait until the first cycle completes before going to sleep since it does cause a sensation. But if I’m asleep, it doesnt bother me. About once a week or so, I get woken up by the machine because a hose is kinked. I’ve had a few cramps while doing PD, but that was only when I didn’t heat the bag up enough. I’ve had some vomiting, but that’s more due to the kidney failure. For about a month or so before starting HD, I was vomiting a couple times a week.

I would have done that, but I could never get a dialysis appointment that wasn’t in the middle of the day. I have heard of people who would be tired after HD but it never happened to me. In fact, usually I felt better because I didn’t have as much water on me.

So what did your husband do while he was on the machine. I bought myself a portable DVD player and got caught up on my movie watching. :smiley:

Once my ex-girlfriend drained out fluid that was red. After confirming that it was nothing serious, we would joke about how she was drinking too much cherry Koolaid.

What’s the name of the company that delivers your supplies? And how cool is it that they’ll deliver to any place you want to go, anywhere in the world?

We have several dialysis center in Indianapolis that have a late (4pm start) shift, so he was lucky.

He watched TV (they had 'em hanging from the ceiling, although he had to share), played solitaire on his PDA, talked on the phone to his out-of-town friends, chatted with the techs and nurses and the other patients, did some work he brought with him … and was cranky 'cuz he couldn’t sleep. He did get really good at adjusting his own machine :slight_smile:

Wow I didn’t know there was this second kind of dialysis.

I have FSGS like jastu but still have my own kidneys and they are still working at “normal” capacity.

I’m very interested in this thread :slight_smile: Amazing what we can do through medicine these days.

3 years to wait for a transplant. wow. Transplants make me nervous. My body didn’t want the kidneys I was born with - thus the FSGS - so I can just imagine the battle of getting it to accept a new one.

Wonder when they will have internal bionic kidneys?