This Sucks


I really like this site, and I am just here to vent. I started pd about three weeks ago. I had the cathider placed on march 14 and it went well, but when I went in for traing the cathider was not draing. So I had to go to surgery again and pay agian, then we started the dialysis three days after surgery which was not a good idea because then the I was retaing the solution. Finally everything seems to be working, but it is hard. I am 25yrs old and I never thought this day would come. I am on the national transplant list and I have a couple of living donors but I am on dialysis now and I feel like it does limit my life. I have to make sure and do an exchange every 4 hrs which is hard cuz I still want to be young and do stuff. Oh well thanx for letting me vent. PS Dialysis sucks for all of you who don’t already know. I guess it’s better than having to go to the hospital every other day.

I’ve been a social worker working with people on dialysis and with transplants for many years. It’s very common for someone starting dialysis to be depressed, to feel hopeless, and to feel overwhelmed by all the changes. I was always surprised if I didn’t hear what you’re expressing from a new patient. This is why dialysis clinics have clinical social workers on staff. Your social worker can help you look at what you did before and what you’d like to do so the treatment team can help you achieve your goals. You might want to read the module on Kidney School on coping with kidney disease.

I hope someone has told you that people on dialysis, especially those on PD, can live full lives – working, raising families, visiting with friends, traveling, etc. I’ve known people that have lived 40 years or longer with dialysis and transplants. I’m sure you chose PD because you believed it would fit best with your lifestyle. It still can. Some people find that CAPD (manual exchanges) interrupt their day too much. That is why so many people do CCPD (automated PD using the cycler). Have you talked with your home training nurse about whether you would be a good candidate for the cycler? If so, you could do this overnight while you sleep leaving your days free for other activities, including work or school. You can read about CCPD from the home page of this site under the types of home dialysis.

I’m sorry you had the problems with your catheter that you did. Hopefully those problems are behind you now. If you have more catheter problems, you might ask if you could talk with a different surgeon. Some surgeons are more skilled than others in catheter placement and resolving problems.

You say you had to pay twice for catheters. I hope the dialysis clinic staff (usually the social worker) talked with you about Medicare. You’re young and may think you’re not eligible. Social Security could tell you if you are based on your work record or the work record of a spouse if you have one. People on in-center dialysis have a 3-month waiting period for Medicare, but for people that start home training before the end of that waiting period, Medicare can start the first day of the month dialysis started. This way Medicare can help pay for inpatient and outpatient charges. If you have insurance through your job, hospitals, dialysis clinics, and other providers could bill Medicare second after that insurance for the first 30 months and then bill Medicare primary after that. You can read these two booklets to learn more about Medicare and about options for living a full life:

So far as a transplant is concerned, it’s good that you’re on the list. I hope your living donors are being evaluated now. Having a living donor is definitely the fastest way to get a kidney transplant. Today more transplants come from living donors than from deceased ones. You might want to read this FAQ about living donation, including reading about paired donation in case your donors don’t match you.

Finally, I used to tell my patients that it takes months to adjust to being on dialysis. I’d tell them it was like grieving after someone dies. You wouldn’t expect to be over a death in a few weeks. So expect to be sad, but I suspect you have people that love you. Reach out to them and let them help you keep your spirits up. Stay active and do fun things. Whatever you do, do not sit in your house with the curtains drawn and feel sorry for yourself for more than a short time. I’m sure you have a lot to live for so as Nike says, “just do it.”

Hi M- Sorry to hear you are having such a difficult time of it. But, it does get better. Have you considered NOCTURNAL PD? I use a cycler & connect to my machine at night for 8 hours while I sleep, I then do not do any exchanges during the day…although, some people do have to do an exchange during the day.

I understand what your saying about ESRD sucking - in it’s way, it litterally does…but you can still walk, talk, feed, clothe, bathe yourself…no one has to help you. You are NOT confined to a wheel chair, waiting on someone to pick you up and take you to the bathroom or change your clothes or brush your hair…YOU can do that for yourself. It is hard, especially at first…but you are ALIVE, so start educating yourself and your family. There is a whole world out there & ESRD should not stop you from participating in it.!!

Brother you don’t know the half of it! I was on CAPD for about 2 years waiting for a kidney, then due to a hernia had to switch over to Hemo-Dialysis. What a difference. Hemo was twice as bad (maybe even 3 times). You don’t realize how lucky you are to be on PD. PD gives you so much more freedom to travel and generally have a social life. You also have many more choices for diet as compared to Hemo.

Luckily I received a transplant after being on Hemo only about a year and a half. Unfortunately, the Kidney gave out after about 8 years. But what a wonderful 8 years they were! Now I am back on Hemo and getting real depressed here as of late. I am considering checking about home hemo dialysis using the new NEXXUS dialysis. My wife would be willing to help out and would probably stick me.

So, consider yourself lucky to be on PD!

I am considering checking about home hemo dialysis using the new NEXXUS dialysis.

Hi Jeff. I’m so sorry to hear that your transplant failed. The system you’re talking about is called “NxStage”–and it’s best if you can learn to put in your own needles (your wife doing it is a good second choice, though).

You can read about daily home hemo at If you search for “NxStage” on our HD patient message boards, you’ll find lots of threads that talk about using that machine. We also have stories ( of folks doing daily home hemo with the NxStage System One or the Aksys PHD.

In our Find a Center database, you can look for centers in your area that offer daily home hemo If you don’t find one there, check our coverage maps (–a home center does not have to be right around the corner because once you’re done with training, you only have to go there once a month for clinic visits. So, if you live close to a border, the nearest center may be in the next state.

My mom passed away a few years ago and I really am finding myself at my wits end. She was on dialysis and she had a cathader in and somehow she got an infection when they pulled the shunt out the infection was sooo bad that it ooosed out like mayonaise. I cant even imagine the pain that she was in we took her in on Wednesday night to the hospital and they released her with a 103 tempature saying that she had the flu. Well It only took till Thursday when we had to take her back to the hospital because she could not even sit up and she was drenched with sweat and she was not making any sense at all she was lathargic. I cant get any answers from anyone the dialysis center sealed all her records because she did not have a living will. I was supposed to donate my kidney to her. I went through all the testing and we were a match. On Oct 4th my birthday we got the good news that we were to go and do the transplant. She died on Oct 14. I am very bitter and want ansers to questions that I cant even ask.

I’m so sorry to hear about your mom, Unregistered. It must have been a terrible blow to lose her when you were so close to being able to do something tangible to help her–and without answers, you don’t have closure.

I can’t tell from your post what kind of dialysis she was on–was it PD? (This is the PD board.) Or, was she doing hemo in a center? Both types of dialysis have catheters that can unfortunately get infected, so it’s impossible for me to tell.

I’ve never heard that a Living Will would be needed for a next of kin to get medical records from a patient who passed away. Maybe Beth can look into that and weigh in. It may take getting an attorney to write a letter for you, but it may be that you can at least get those records, and that may help you to close this very sad chapter and let go of some of the anger and helplessness you seem to feel.

The dialysis clinic is not providing her medical records due to the privacy provisions under HIPAA (Health Insurance Portability and Accountability Act). This even protects records after a death. If your mother had designated you as someone that the clinic could talk with in her records, they could provide the records to you. Did she? If you were named as her healthcare proxy or durable power of attorney for healthcare decisions, I believe they would have been able to provide the records to you. Since the clinic has archived her records (they have to keep them for several years, the length of time depending on the laws of your state), you may need to talk with an attorney to get a copy of them and you’ll probably have to pay a fee for them to be copied.

are u on the night cycler? I am on the night cycler for about 1 year now , I am 43, still young too and yes dialysis sucks, but the alternative is death. so we must adjust. I find the night cycler great cuz it is when i am sleeping. Just the annoying tube during the day.

Hi! I am sorry that you are on dialysis but I have a 10 year old on dialysis and awaiting transplant so on your worst days when it seems unbearable, please think of what a 10 year old is feeling. She cant go to sleepovers, the machine wakes her up at night, and she has to get up and go to school, and she maintains honor roll (had to throw that in there as a proud parent). I wish you the best!

Have you thought about (CCPD) continuous cycling peritoneal dialysis? I’m on CCPD and just love it compared to manual dialysis. I do one mid day exchange, between 3 & 5 and of course about 9 hours at night, while I sleep. Its much more freeing.