Peritoneal Dialysis

My husband had a transplant about six years ago which failed last summer. He is now on peritoneal dialysis. He's retired but I still work (I'm 64) But luckily I work from home. PD is quite a bit of work to set up the machine each day, stay on top of supplies and there's a lot of plastic waste. He just doesn't feel well a lot of days so I handle most of the PD stuff. Now that I've been doing it a while, I can set up the machine each day in about an hour. Overall, though, it's still much better than having to go into a center 3 times per week.

Sorry your husband's catheter isn't working yet. I'm sure the surgeon will be able to resolve that. Has he had abdominal surgery in the past that could have scar tissue?

He had diverticulatis surgery back in 2007. Not sure if that could be one of the issues. He’s about 3 weeks behind in the treatment.
I’m sorry your husband’s transplant didn’t work out. Did they tell you the reason for it?
Yes, PD is lots of work I can imagine. Makes it difficult when we are still working. My husband is 67 and I’m 60. I hope things go well with you and your husband. Is he considering another transplant in the future?

@alicat60 Welcome to Mayo Clinic Connect ! I’m glad you found the site! It’s great, isn’t it? I know what you mean by how difficult PD can be when you’re just learning. Oh, wait ! Your husband hasn’t started yet. Sorry for the confusion. Now, I’ll try again. :-(. PD can be difficult as you are learning, but, in the long run, it’s very easy!
Be sure to let us know how you are both doing once he starts.

They waited until my husband was down to 6% kidney function to put his catheter in. He lost a lot of weight during that time because low function causes loss of appetite. Now, they're saying they want him to gain a lot of weight back before being considered for another transplant. What is your husband's kidney function? You may have to insist they put in a chest port for hemo dialysis in the meantime if it's very low. I've learned we have to be very pushy and noisy sometimes to be sure our loved ones get the care they need.

Good luck!
Trying2BHappy

@alicat60 Let me add my welcome to Mayo Clinic Connect. I have been on peritoneal dialysis since Sept 2022.

When you say his catheter is not working, is he not able to take in fluids to dwell, or not drain fluids out? The catheter might be wrongly placed, and butting up against his abdominal tissues. That would create an issue, and also possible cramping. As was mentioned, if his kidney function is really going down, he might need to get a port and do hemodialysis until the problems with peritoneal dialysis are resolved. When a surgeon does the catheter placement, usually there has been an ultrasound ahead of time to see if the patient has the "right" set-up for the catheter. That can mean little to no scar tissue [from previous abdominal surgeries] or omentum [fatty tissue in the cavity].

How is your husband feeling? Will you let us know what the doctor says next week, please?
Ginger

Ginger, thank you for your response. I got really busy between my job and my husband care.
He’s having surgery again to fix the catheter since the surgeon doesn’t know exactly what the problem is. When he’s using the automatic cycler and starts draining, it stops draining about half way into it. They have ruled out other things like constipation. But the Dialysis Clinic found a way to do the manual PD at home. And that one is working much better. And he’ll continue to do it this way until his surgery on 3/26. So far, the manual is helping quite a bit. I was really concerned. We go back to Mayo for other evaluations the first week of April. I’m hoping he’ll be a candidate for a kidney transplant. Are you considering a transplant for yourself? Thank you for reaching out.

Hi there. Yes, I’m so glad I found this site. Has been so helpful to connect to other brave people that are going through similar challenges.
There’s something wrong with the catheter. He’s going back on the 3/26 for surgery to see what’s actually wrong since it’s not draining with the automated cycler. He’s using the manual PD now every day and that’s is actually working better. I’ll let you know what they find out on the 3/26. Thank you for your response.

His function is 10. He’s doing manual PD now till he goes back into surgery on 3/26 to see what’s wrong with the catheter not working with the cycler. The manual seems to be working now thank goodness! Thank you for your support.

@alicat60 I am glad to hear the manual method is working for him. I do the manual versus cycler, and have been for almost 3 years now. Doesn't it make you wonder if there is an issue with the cycler itself, since it stops draining halfway through? Has that been looked into, especially noting the manual method is working? I'd hate to see him go through unneeded surgery!

Unfortunately I cannot be considered for kidney transplant. I am also a blood cancer patient, under treatment for that. I need to get a stem cell transplant for my multiple myeloma, and show no evidence of disease, before even starting the process of evaluation for kidney transplant. We [my medical team, including me] have determined that I am not a good candidate for stem cell transplant, that I would very likely not recover from it. So, that takes kidney transplant out of the picture.

Keeping my fingers crossed for you and your husband!
Ginger

Hi Ginger. He had some x rays of his tummy and according to one of the nurses she said the catheter is in a different location causing the draining problem. Yet, the surgeon said he doesn’t know what’s causing it. They haven’t mentioned the cycler yet. The manual one works better even thought not a 100% better. I will mentioned it to them though. I’m sorry to hear about your other health issue. And yet, here you are helping others and I appreciate it. Let us know about your journey. Praying that angels will help us all. Hugs, Alexandra