I’m fifty two years old and have had kidney disease for about twenty five years.
I just had my PD Catheter inserted three weeks ago.
I had to do this because I’m having an cardiac catheterization this Monday and the doctor thinks after it, my kidney function will be a lot less and will need to be put on dyilisis right after the procedure.
I really am very afaird of all this.
Any advise to help me get though this would really be apprecaited.
I’m 52 also. I started dialysis at 49, but I also had my kidney disease for 25 years before that.
I don’t know what I can tell you at this point, except that there is life on dialysis. I’ve only been on hemodialysis, never PD, so, I’ll let others speak about that.
I’m on PD and it’s not so bad. If the reason they expect your kidneys to fail is the dye they use, then ask about the meds they have to protect your kidneys from it. I think they also have a dye that dosen’t affect the kidneys.
There aren’t too many pitfalls if things work out Ok. All you can do at this point, really, is to be optimistic about it. I’ve never been on PD, but I’ve seen it done many times. Once you start the PD, as long as you do the dialysis in accordance with your training and your prescription, and you follow the dietary requirements, you should be fine. It can happen occasionally that PD doesn’t work out, but, I mean, that’s a bridge you should only worry about crossing if and when you get there. The worse than can happen in that case is that you would have to switch to hemodialysis. The most common complication with PD is infection, but you can minimize the chances of that by strict adherence to the procedures.
Bill-
I’ve been on PD for 5 months now. I can honestly say I haven’t had any problems with the PD. It is so much easier on you than hemodialysis is. Then only thing you really need to be careful of is keeping you exit sight (where the PD tube comes out of you clean) and keeping your work area, when setting up your supplies clean. Other than that it is a piece of cake. You should have your nephrologist talk with your cardiologist PRIOR to having the angioplasty, as there are medicines that can reduce the effects of the dye. I am speaking of experience here, and it is worth taking the extra precaution. Godspeed!
Had my cardiac catheterization done this past Monday.
All that was found was some very small blockage that can be treated with meds. Had blood test today to see if any damage was done from the dye.
One question for other PD users.
I haven’t started PD yet, but I have had my PD catheter flushed twice and I’ve only been able to have a small amount (300 units) of solution inserted before I feel a horrible pressure on my bladder. I can’t image being able to function with a full bag of Dialysate in me.
Has anyone else had this problem and what was done to correct it?
Hi Bill-
When I started PD, after about 1500 ml I would have a lot of discomfort. Therefore my PD nurse agreed we should increase gradually - so over a period of two weeks we gradually increased my holding capacity, until I could be fairly comfortable with the 2500 ml. Although, at times I still feel like a pregnant walrus trying to stand or land! Fortunately for me, I am dry during the day, as my body tends to absorb the dialysite fluid if left in over 2 1/2 - 3 hours.
I am a 49 year old woman who has had kidney problems for about 20 years. I went into renal failure and started PD about 6 months ago, in April. I know what you mean asbout being scared, Bill. I was petrified. I am pleased to tell you that it is not as bad as I thought it would be. It’s like everything in life - once you get used to it and do it over and over every day you become more comfortable with it and it ceases being hard. I don’t mean to say it’s nothing. And I also wouldn’t say it is a piece of cake. BUT I get up every day and go to work and I feel pretty good most of the time. People at work are not even aware of it unless I tell them.
The pitfalls I can mention that happened to me are: Number 1 - FATIGUE. The first two weeks after I started PD I was so weak I would get tired washing my hair and have to put my arms down in the shower to rest for a few seconds. And my arm would get so tired while I brushed my teeth that I would have to sit on the edge of my bed and hold my right arm up with my left to brush my teeth. I am not kidding - I was that tired all the time. I thought this was never going to work. Then after a couple weeks the fatigue started going away and I was pretty much back to normal. (Whew!)
Also, when I first started I would get violently ill when I would do my mid day manual exchange. (I am on the cycler 9 hours every night, then do a manual exchange mid day. I don’t know if this is what most people do or not). Anyway, the nausea was pretty bad the first few weeks. But then it too went away. My doctor said it was just a matter of my body getting used to having all that fluid in there. Now there is no nausea at all.
Don’t be afraid Bill - it’s not that bad, even at the beginning.
My husband started pd 2 months ago and is now doing the ccpd (on the machine at night). What a difference! He loves the ccpd, he has more energy now, is getting his appetite back and doesn’t have the back pain that he had with capd. We are new to this too but life is getting better now that he started pd. Why anyone would want to do hemo is beyond me. I know there are some that have to do it but it’s so hard on the body. I just thank God for this machine. Hang in there Bill, it will get better for you too.
I started my PD last week. My clinic made me wait until my catheter was healed. My surgeon flushed it out while I was still on the operating room. That way he knew that it worked. Anyway, I want to warn everyone about an tiny little air bubble. It is really painful. I am 50 years old and have had kidney probelms only for three years. I have two living donors and are now getting all of that set up. I uderstand the fear, I cried and had a little pity party last weekend. Thanks for listening to me. Vicki
My husband has been on hemodialysis for a few weeks now & we are thinking about PD. From what I see here it sounds much better & maybe easier. He is at a very low point in his life & I would like to do something about it.
I have questions & they are: If he learns to do PD can he do this by himself or is my help needed.
How do you go about starting & are there any different surgical procedures needed to change his catheter or would you use the same one. He has one in his shoulder & an incision in his arm for another catheter, I think. What is this second one for. They don’t seem to be in the right for PD.
What kind of fluid do you use & is it difficullt to do & why do most posters think it’s easier/better.
He is tired all the time on hemodialysis, will this improve with PD.
Yes, your husband can learn to do PD by himself–as long as his fingers on both hands work properly, it should be fine. Even folks who are completely blind have learned to do PD successfully. It’s very easy to do PD and only takes a week or two to learn.
His hemo catheter will NOT work for PD. That catheter is placed in a blood vessel. For PD, the catheter has to reach the lining of the inside of the abdomen, called the peritoneum. Your husband’s blood will not go outside his body for PD.
Duh, I should have known that it would in a different place.
I am going to look into PD ASAP. I will also take notes from all the different experiences posted. This is more information than any doctor would give you.
Although Rob was in kidney failure the sad thing is that his complete & acute, which we were told is very unusual, kidney failure might not have happened with just a little patient teaching as to what signs & symptoms to look out for.
He was sick for 6 days before we had any idea he should be in a hospital.
If we had just known even a few of the the signs of acute KD we would have been there on day one. He spent a week in ICU with metabolic acidosis. He was never even given a special diet to follow all the while he was being treated. His doctor was very negligent.
The people in this area that handle dialysis is DaVita. Seems like some are not big on patient teaching. For instance I know about potassium salt & phosphorus restrictions & he was given a chart that tells you how much is in what, but no one filled in his daily rations. I can work this out I’m sure.
I know I will have to go to classes to learn PD. Anyone have any idea how long it takes to learn before you are on your own. How often do you see a doctor while on PD. Is it hard to do?
I have so many questions & no longer feel so alone now that I found HDC message board, how greatfull I am. Talking to & reading stories from people living this is the best help anyone could ask for.
Even though I am not a kidney patient I will be the one looking & asking for information. My husband does not even know how to turn on a computer!
Every dialysis clinic has a dietitian and social worker in addition to the nurses and technicians. Doctors make rounds at the dialysis clinic. Some have physician assistants who also make rounds. The doctor may want your husband to come to his/her office. If your husband is a home dialysis patient, most clinics set up a monthly clinic visit where you and your husband could see all healthcare team members at the same time --doctor, nurse, social worker and dietitian. No matter whether your husband does dialysis in a clinic or at home, there are adjustments that need to be made. The healthcare team should try to help him do as many of the things he was doing before he became ill as possible.
It sounds like you’re a great Internet researcher. As a long-time social worker I advise you to encourage your husband to start taking part in some of your research whether he reads the materials you get off the Internet or learns how to do his own search. It’s never too late to learn how to use a computer. I talked with an 80 year old woman whose son gave her a computer and she was taking classes. You could teach him in small bits and he may start to get interested. We’ve found through research that patients who participate actively in their care do better. It helps to know something about kidney disease and treatment and to ask questions to become an active particpant.
I’m sure right now he’s very depressed and not motivated to do it and is more than willing to let you do it. If he is depressed, be sure the clinic social worker and the doctor know he’s depressed. Counseling and medications can help. Ask the clinic soclal worker if there’s another patient and/or spouse that could serve as a mentor for you. Talking with someone else who’s gone through what you’re going through can be tremendously helpful. Check out our message boards and you might want to join the Dialysis_Support mail list. This active list has over 1,000 members – patients, family members, and professionals. http://health.groups.yahoo.com/group/dialysis_support/
MCjane 302, My husband and I took Pd classes for 4 days to learn how to do aapd and that was it. He was doing great on it. Any like your husband mine can’t turn on the computer either. If we can do it you and your husband can do it. My husband is on the cycler now and he likes it better than doing it manually. Life is so much better now. He doesn’t have the back pain he was getting from carrying all of that fluid around in his abdomen. He has more energy and isn’t tied down to having to do 4 exchanges a day. He can work now (full time) and do his dialysis at night while sleeping. Go for it! Your husband will love it and will be healthier.
Hi Tammy,
Thanks for the reply which is just what I needed to hear, how fast you both learned PD.
Rob does not have his catheter in, but is seeing a doctor tomorrow to talk about surgery.
He is anxious to get started.
The cycler is the way he wants to go & from your husband’s experience I agree.
He comes home from HD feeling lousy. It’s at a bad time, 4:00 to 8:00 pm, leaves here at three & gets home at nine, not much of a life & he goes right to bed. His appetite is way down & his protien is too low. He is also very weak. I am so certain that things will turn around once he is on PD.
This message board is a lifesaver, heard about PD, but had no idea what it was until I came here. It was never explained to us & the difference is night & day. I hate to think what Rob’s life would have been without finding HD Central. You feel so alone, but your not. The support & willingness share is wonderful. I’m here reading everyday & I feel better because of it.
And what would we ever do without Dori & Beth. I can’t thank them enough.
First off…thanks for the compliment. Both Dori and I are happy to provide any suggestions we can think of from our experience of working with people with kidney disease and kidney failure.
If your husband’s protein intake is low and if he’s not been as physically active because he doesn’t feel well, this can contribute to his feeling weak along with anemia. Hopefully he’s getting EPO (Epogen or Aranesp) shots and his hemoglobin/hematocrit is checked regularly.
It’s very important that he talk with the dietitian about the PD diet. You say he’s not eating very well and not eating much protein. His appetite could be off if he’s not getting enough dialysis. Once he starts on PD, he will need to eat more protein because PD removes more protein than HD. Try to have some protein at every meal. If he can’t take in enough protein in his normal diet, ask the dietitian about how to supplement protein. In addition to the typical kidney labs, hopefully the clinic is telling him how his albumin is doing. How much protein he eats will be reflected in this number. If his albumin is low (under 3.5), research has shown that this makes him at higher risk of infection and hospitalization (and even death). Check out http://www.kidneyschool.org for the nutrition module.
I just suddenly and unexpectedly lost the useo f my kidneys a couple of months ago and I’m on hemodialysis with a temporary chest catheter. I’m considering CCPD and one of my concerns is if you feel full all day and have a huge stomach due to the fluid left in you tummy?
I have a couple of additional questions you might be able to answer for me. I’m aware of some pros and cons that I’ve listed below, but I was hoping you could share your pros and more importantly your cons.
One of the cons, I’ve learned that there’s weight gain due to the sugarary fluid, is this your case, or other patients you know, or know of the averge weight gain for patients in general?
One of the pros, because it’s a more gentle and stable dialysis every night instead of three hours every other day, it’s gentler on your body and therefore you feel better much more of the time than when on Hemodialysis.
CJ, thank you very much for your input and comments. They will be greatly appreciated!
Your husband will love it and will be healthier.