My husband will start his PD training next week and we were wondering what to expect. He will have hemo on Monday and do the PD Tuesday. Will he be there all day so he can do an exchange or do they just show you how?
Also, did your spouse attend the training? I want to attend so that I will know what to expect. When I told the PD nurse that I wanted to learn how, she stated that I was not needed and that if he was not able to do it himself then he needed to be in the hospital. I can understand that but I want to know how it is done. He has some usage problems with his right hand due to diabeties, numbness, stiff fingers, etc. and I am afraid that may cause him some trouble. Should I push the issue or am I out of line?
I can’t believe the nurse!!! My dialysis clinic INSISTED someone else learned along with me, just in case I was to sick sometime to set my machine up myself. And like Stephen said - if you go to the hospital, most of the nurses have no idea what PD is like or how to actually get it started. I had that experience very recently - fortunately for me, I wasn’t so ill that I couldn’t stop the nurse & do it myself!!
As far as the training goes - the first day or two you can probably expect at least 7-8 hours a day. A lot will depend on the clinic you are working with. Some will have you come in for a couple of days, then will finish up in your home - and actually help set up everything in the room you intend to do dialysis in; although other clinics do everything from the clinic. I was fortunate as my nurse came out to see that everything was set up like it should be, and made some suggestions that would actually make things easier for me.
I can’t imagine a home training nurse refusing to allow a family member to attend training. Even if you’re just there to observe, it’s important for you to know exactly how to do the PD procedure in case your spouse is ill and unable to do it. I worked in dialysis for many years and we were always thrilled to family members attend training. Not only did we then know that more than one person heard the instructions, but the patient had his/her loved one(s) there to offer support and encouragement when he/she was coping with new people, a new treatment, and worries about his/her ability to do it. Patients should train as the person responsible for the treatment but having a family member train provides a ready back-up if the person is incapable temporarily (or even long-term) of doing his/her treatment alone.
Here are some possible explanations:
– The nurse believes that to be considered “self-care” or home dialysis, no one but the patient can do dialysis. I’ve heard nurses say this before and it is 100% untrue. Self-care means that the patient and/or a helper does the dialysis where the person lives.
– The nurse believes that if you’re there, the patient will defer to you and let you do the treatment for him. Tell her you won’t allow this to happen.
– The nurse doesn’t realize how harshly she came across. Let her know that you are your husband’s life partner and dialysis partner. Explain that you can help her help your husband, but you need to know as much as he does to be as effective as possible.
If the nurse continues to stonewall you, tell your husband’s doctor that you want to learn PD so you can be your husband’s backup if he’s ill and needs help. I’d explain that the home training nurse refused to allow you to come to training, insinuating that if you were there your husband wouldn’t take responsibility for PD without knowing either one of you. I’d probably tell the doctor that if you’re a backup, it is more likely that PD will be successful long-term, but if no one but your husband is trained and he has a health problem that makes it impossible for him to do his treatment, he’d either have to be hospitalized, to miss a treatment, or to go to hemodialysis which he’d prefer not to have to do. If the doctor support you and your husband, I’d find another dialysis clinic that is more amenable to a team approach that includes not only the patient, but the spouse.
Thanks so much for the replies. I am so greatful for the encouragement I have gotten from this board. Going on dialysis is hard for the patient but is also hard on the spouse in very different ways.
I am so heartened to hear that you agree that I need to attend the training sessions so I can learn the procedure. And I can understand if the PD nurse thinks I will take control of the home procedures but I have no desire to do so. I just want to be informed so I can be there for him if he needs me.
I plan to attend the training sessions, at least the first one or two. As far as moving to another dialysis clinic, that is not an easy option. We live in a rural area and this is the only one within 60 miles of our home. Also, his nephro doctor is part owner of this clinic and the other 2 that are farther away. Not an ideal situation but one we have to deal with.
I have butted heads with his nephro doctor over the years and I will certainly not back down from the PD nurse. I want the best treatment I can find for my husband and if I have to step on toes to get it, so be it!
Tuesday is “D” day, I will let you know how it turns out.
I just ended my pd training this wednesday. My wonderful nurse also insisted someone learn along with me so that if I was too sick to hook myself up I would have help and also as was stated earlier, most er nurses dont know as much about pd as we do after our training. It makes me wonder how competent your husbands training nurse is.
Any way, on a lighter note I feel much better since starting pd and its not that hard.
good luck and stick by your guns. You are absolutly right.
GOOD FOR YOU. mAKE ALL THE TRAINING SESSIONS IF YOU CAN. if THE NURSE DOES NOT LIKE IT, THEN REPORT THEM TO THE STATE. IT IS BS FOR HER TO TELL YOU SOMETHING LIKE THIS. A GOOD NURSE ALWAYS WANTS SOMEONE ELSE IN THE HOUSEHOLD TO LEARN. THE MORE YOU BOTH KNOW THE BETTER YOU WILL BE. KNOWLEDGE IS POWER. GOOD LUCK!
Everyone has said what needs to be said in the post. I agree. ANYONE on Dialysis PD or Hemo. needs SUPPORT. I was always told PD is a team effort. My best wishes to you and your husband.