Dialysis Peas - would you share with me?

This I can address. Normally he will go to a dialysis center 3 times a week(can be 3-5 hours each time depending what is necessary, it is a fixed time frame), they will assist you with a dialysis center at the locale where you will be staying to continue treatments.  You don't just go, it must be arranged because they have their regular patients.

I would find out which clinics your nephrologist works out of and schedule a tour and a visit with the social worker as earlier suggested. If your nephrologist is talking fistula insertion, then peritoneal dialysis is more than likely not an option for your husband but definitely ask. I strongly recommend getting that fistula put in asap as you really do not want to deal with the catheter for dialysis. More than likely you can expect to have three treatments a week....Mon/Wed/Fri or some clinics also offer a Tues/Thurs/ Sat option. Some patients can have only two visits a week but that will be up to your nephrologist. Typical treatments run between 2-5 hours or they did in our clinics. Again this will also depend on how well he maintains his diet, his fluid intake and how he handles treatment and what his nephrologist decides. Following the renal diet and the fluid restrictions are key in how his treatments go. I swear after the weekends you could hear people slosh when they walked. Their thought was dialysis will fix this. It doesn't. not if you continually ignore the parameters given.

You can expect dialysis days to be exhausting, but this also depends on how compliant the patient is when they aren't at dialysis. Again this refers to the diet and fluid restrictions as well as medications. Depending on how the clinic runs they may or may not always be on time. usually the first round of patients are so if he gets in on that shift it will be okay, however, things change quickly in a dialysis clinic. Lots of things can screw up the schedule. Trust me they work hard to keep the clinics running on time but I can tell you stories on how that goes some days. You have to be flexible for days like that. You will be set up with the open spot in the clinic unless they can get already scheduled patients to give up their time slot. When traveling, as much notice as you can give would be best. They have to figure out how to get a patient in with their already full schedules. Some Times you may be "on call" in that they will call you when a chair opens up. Again it all depends on the clinic, their patient load and the hours they are open. That said we were almost always able to accommodate visiting dialysis patients.

The clinic I worked in had an at home option where they trained the family (not the patient) to be able to connect the machines, set them up right, make sure the chemical balance was correct etc. Someone has to be home to monitor the patient while they are on dialysis as well. There was a specific protocol and you had to qualify for the at home program. I would find out if your husband qualifies. This will also require a generator etc.


as for the treatments themselves, we allowed family members to sit with patients after they had been put on the machines. Family had to wear the same things the staff did, gloves, gown etc. 2-4 hours can feel like an eternity so make sure there is plenty to do. Bring blankets, many patients would get cold. The clinic may or may not have a TV available to watch, or they can bring in books, laptops etc. Sometimes patients just slept during treatment. We had one patient who completed her Masters Degree while on Dialysis waiting for a transplant. When you sit for 2-5 hours, you can get a lot of homework done

one of the many issues I see with dialysis is transportation. Many times the spouse or family member had work so at some point the patient had to rely on transportation elsewhere. Some did drive, but many were to tired afterwards. It would depend on how far away the clinic is from where you live.

It may sound negative but these are the realities. Dialysis is not easy. The best thing you can do is follow what the nephrologist and the staff tell you to do. And just like anything else, it eventually becomes a routine. It just feels very overwhelming and scary at first. Ask questions of everyone. Get to know the staff, you will be spending a lot of time there.

My brother has been on dialysis for several years now, due to an autoimmune disorder that destroyed most of his kidney function.

He started out with peritoneal dialysis, doing it overnight at home. It can be a good option for the right people, but it turned out that his tissues reacted by kind of scarring and toughening up and the dialysis was becoming less and less effective. After less than a year, he had to start the process to switch to hemodialysis.

There is a lot involved with doing it at home - you need to adhere to strict sterile protocols (e.g., pets in the house and especially in the room where it is done can be an issue), you will have lots of boxes of supplies delivered that need to be stored (you use fresh tubing and bags of solution each time) and there is lots of waste to get rid of, you need to be capable of handling the machine and understanding what to do (Scott had a nurse he could call if there were problems) and it's best if you have another person in the house who can learn it all too. My brother did his overnight, but because of the length of time it takes, he had to be careful about getting started in time. He was still working full time when he was on this, and had to be at work early in the morning. It takes time to set up and follow the protocols and then to disconnect.

For the hemodialysis, if that's the choice, you need to get the fistula preparation done well in advance because there is a healing period before it can be used. He goes three times a week, and it takes 4-5 hours for him (he's tall and big built). Early on he had some issues with low hemoglobin that caused him to be too weak to drive, and a few times my husband and I had to go get him so one of us could drive his vehicle home. The doctors seem to have that under control so it hasn't been a problem for a while, but there have been times when his blood pressure has dropped enough that he has to sit and wait for it to come back up enough for him to be safe to drive.

There is a special Medicare program for dialysis patients, so that was a huge help with medical costs. My brother has gone on disability, but was working for the first couple of years of dialysis. It gets complicated because it takes huge chunks of time, and the center may or may not be able to accommodate a work schedule or your preferred time for dialysis. There is also a level of fatigue after dialysis, and that can be affected by your other general health issues. My brother started out in a bigger center and then switched to a smaller satellite center of theirs and he goes M, W, F, starting in the middle of the day. When he was working he went late afternoon so he could work a full day, but not all centers offer that time option.

A huge factor in how well someone does on dialysis is whether they are compliant with the diet and fluid intake rules. And if you aren't, peritoneal dialysis at home may not be a good choice, because you have to be a rule follower for that. My brother does pretty well because he really does watch his intake and knows and understands how what he eats and drinks will affect his body. He knows his lab numbers, and where they should be, and he takes the meds prescribed - as they should be used. One advantage he has is that he is NOT diabetic; most of the dialysis patients are.

Find out which clinics the nephrologist is associated with, get their names and then call Kaiser and find out which of the clinics are available. You will want to go to a clinic that your nephrologist is associated with and has privileges in