My partner was diagnosed with kidney failure in June. He began hemodialysis right away and continues to do it three times per week. In October, he had the abdominal catheter added for home peritoneal dialysis and is currently being trained on how to do it. He will likely begin treatment at home next week.
I am trying to prepare for the logistical changes necessary (i.e. making space for supplies and machine), but I am feeling unprepared for how it may change our lifestyle/relationship. I would love to hear from people doing home PD and/or their partners about their experience. Some questions on my mind include:
For PD patients - When do you set up your supplies for the night? How long does it take? Do you walk around attached to the machine? How is your energy & mobility impacted?
For both patient and partner - How is sleeping through the PD cycler noise? How much space do you need for supplies? Did you need things that are not supplied for you (i.e. catheter belt, cart for machine)? Has home PD impacted your intimacy?
For partner of home PD patient: Are there ways to help your partner be more comfortable? How do you emotionally support your partner? How do you take care of yourself (to avoid caretaker burnout)?
Thank you in advance for your insights and advice!
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somervillesis
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Hi my name is Dave was on PD for 3 years. Then in hemo for 4 years had transplant 5 months ago🙏You should be involved in the PD training the supplies take up a good part of a wall should be close to the bed if he will hook up at bed time as for appetite it’s hard to eat when you sick,peanut butter got me through a lot of rough times I would eat p-nut butter on toast every night before bed, also I drank one of those meal replacements everyday after supper or if I didn’t have supper, Cannabis improved my app it ate ! As for sleep I was woken up all the time because the machines alarm would go off because I’d roll over onto the line and it would kink then you will have to reset machine,number 1 rule WASH AND SANATIZE handsoften!!! I wish you luck and good health if there’s any more questions don’t hesitate to ask🙏🙏🙏
Thanks for checking in. We seemed to adjust to the routine of the PD fine and made space for supplies. He felt better at first, but the various prescriptions they've tried for his exchanges are not pulling enough liquid or phosphorus. They added a day time dwell also. He struggles to sleep between restless leg syndrome, phosphorus itching, and vomiting in the night. And he's worried he'll have to go back to hemo. So things are a bit stressful.
I did home PD three times a week and was initially overwhelmed. But, my dialysis nurse was available to me at nighttime when I did the treatment. She had suggested to keep the extra supplies in a storage area, so that normalcy will be maintained. I kept a box in the bedroom for my sterile supplies and notebook with vitals/ important phone numbers. I had one box of each PD part on the other side of room and covered with blanket when not in use. You will need a table close to your headboard of bed to put dialysis machine on. The PD machine comes with long tube if you want to go to bathroom at nighttime. He could use urinal and place discards in a trash can and dispose of it in the morning. Setup is easy, once you get a system of setting up supplies on the bed in the order that you need them. WASH YOUR HANDS CONSTANTLY.
Remember, PD is only three times a week, so your nights will be interrupted on these days but the other days are nights for cuddling and whatever. But, remember patients on dialysis tend to get depressed and their energy level is low. You may need to ask about IRON/PROCRIT and Nutritional shakes or antidepressants.
You can have a PD belt made or purchased, which can make his appearance better.
Take care of yourself by getting away from your environment with support of family and friends. Do not share this alone. Many supports groups available. Talk to your doctor about the changes going on in your life. Keep up the faith for a transplant to come his way...
Thank you for your insights and advice. Preparing for the unknown is difficult and I really appreciate hearing how other people have done it. I will look into support groups for us.
My best advice is Wash and sanitize you hands often, I got an infection in my lime almost killed me I became too comfortable with the whole procedure and a bit lazy so wash wash wash your hands🙏🙏😛
Not all people are only 3 times a week! I was on PD for 3 years every night,I would hook up before sleep and unhook in the morning that would give me the whole day to do what I needed to do🙏
I did PD for 5 years because they simply couldn’t get a hemo access to work. That fact that you are there to help is such an amazing thing! It all depends on the prescription. I had to use 3 bags a night, every night with a manual exchange during the day. The supplies take up a lot of room because they come in 2 weeks supply, at least mine did. The cycles isn’t loud or noisy, unless it beeps. You can probably walk around the room while connected, but no further. I felt better on PD than I ever did on hemo but that could have been my body acting a nut. You can set up the machine as soon as you finish the next morning, depends on your electric company if it’s worth it or not. I usually set mine up at dinner so the heating bag would be ready by bedtime.
Good luck! There’s no right way to do this, you just find what works best for you
Hello, My name is Elizabeth. Your partner should do very well on home PD if careful. I can't say enough about it. I have been dealing with renal disorders for approximately 40+ years and home dialysis (PD) has really improved my situation. It is true, storage and being confined to the bedroom can be bothersome; however, the health benefit is outstanding. If your partner is careful with the processes, it will be worth it. I am presently working on a book about renal disease and am collaborating with multiple medical specialties on the project. I have written a chapter on PD, if you would like I could send you the section on storage. Good Luck...
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