CAPD & Work

[Dora86]

I have only been on CAPD for nearly two weeks, fortunately/unfortunately I have been shielding so haven’t had to work. How do you fit CAPD into a working day,I do four exchanges a day. My work has been very understanding but as I work in a petrol station/convenience store I will be coming into contact with a lot of people and there won’t be a safe area for me to do it. I Want to go back to work but I don’t how. Has anyone got any experience with this?

[Kbristow]

Hi Dora86,

I used to do my exchanges in the car. If that wasn't an option, I would find a quiet room wherever I was. Sounds like that might not be an option or you. I would suggest having your doctor write a note to let your supervisor know that you have this medical need, and to hep you find a quiet corner, perhaps in the back of a stock room to do the exchanges. It's not ideal but that may be your options.

Also, after my first month of manual PD, I received training to do PD with the cycler, which does my exchanges automatically at night while I slept at home. Is that something your nephrologist or dialysis center is offering as an option for you? That would free up some or all of your day time exchanges if night time exchanges is enough therapy for you. Only your dialysis center will be able to assess that.

Best wishes.

[Jayhawker in reply to Kbristow]

I was told during my nephrologist’s appointment this afternoon that it’s time for me to set an appointment with a surgeon to get the PD catheter placed. Ive been in renal failure since the first week of January 2017.

So, like most, I find myself grappling with mixed emotions tonight. On one level I am sincerely hoping I’ll finally feel quite a lot better than I’ve been feeling for several months. I’m also glad to be able to get the surgery done before a second round of COVID 19 hits.

But I’m also somewhat sad. I’m not stressed or afraid, just sad. I’ll wrap my brain around this and do my best... I’m so very fortunate to work full time as a university professor teaching in an online only graduate program from my home. With COVID none of the faculty or staff will be pulled to campus for meetings at least through fall semester. So I’ve got great health insurance coverage and can easily do manual exchanges several times daily. I do plan to convert to cycler use at night when possible.

djoew67, would you be comfortable sharing your experiences using a cycler overnight? How well does it work? How often do alarms go off throughout the night? How was it adjusting to the sleeping while connected? Anything you know now that you wish you’d known before you started dialysis?

Thanks,

Jayhawker

[QueenGee in reply to Jayhawker]

Hi. I use the Home Choice Pro cycled at night. I only get the occasional alarm to check my patient line while sleeping. In three months of using the cycled I've had maybe three alarms.

The biggest adjustment for me has been sleeping thru the noise the machine makes. I'm very happy with my free time. Manual exchanges sucked for me.

Good luck. Hope all goes well.

[Kbristow in reply to Jayhawker]

The overnight cycler was so much nicer than doing manual exchanges during the day. It's just more convenient, and a welcome change to have your daytime schedule freed up again.

When I first started PD (I used the Fresenius machine), the first night or two were a painful so I just stopped the machine and did manual the next day. My nurse said it was probably draining fluid too hard /fast and so she adjusted my program, and the cycler was much more comfortable after that. Occasionally I would feel some cramping while the cycler was putting fluid into my peritoneum/abdominal area, and I would have to move into different positions to get more comfortable. Usually curling up face down was most comfortable for me until the cramping went away. The cramping was sometimes also due to the catheter end inside resting up against skin/ peritoneal wall when the cycler was tiring to drain the dialysis fluid inside of you. When that happens, I would simply pause the drain, adjust my position so the catheter end would reposition itself, then start up the cycler again to continue. It's a like a gentle vacuum except instead of just one opening at the end, there are several holes throughout the last inch or two of the catheter tube so there's no danger of ever getting truly stuck. I hope that made sense.

Overall, I mostly would sleep through the night. Occasionally the humming and buzzing of the machine every 2-3 hours would wake me but I would get used to it and learn to sleep through it.

Like you, I didn't feel too stressed or afraid, just mostly sad during those times I'd wake up in the middle of the night. If I didn't fall back asleep I'd lie awake thinking about my situation. The treatment didn't bother me; it was mainly the uncertainty of my future that made me sad. But during the day, staying active and engaged in my activities (which included researching and advocating for my own care) was empowering for me and kept my spirits up.

[Jayhawker in reply to Kbristow]

Thank you so much for sharing this with me. I know I’ll adjust. I’ll also maintain hope that a deceased donor kidney will arrive while I’m still strong enough to get through the surgery and recovery. I’m 67 this summer so it will be close time wise. But I can only do my best to take care of myself as I wait and know that all of this is definitely in God’s hands. It feels a bit like I’m in training for a marathon of some sort with 2-3 years of hard training to participate in one major race...

I’ve come to the conclusion that a good deal of what has bothered me relates to the problems with my nephrologist’s practice itself. There is definitely a lack of support as I face this transition. This is a time when patients need more support. Unfortunately that’s not happening for me with this practice.

The lead nurse from the practice did call me last Wednesday morning. In short, they did get me scheduled for an appointment with Dr Lustig, my nephrologist whom I’ve only seen once in nearly 14 months. I’ve got more labs on July 10th. I’m definitely feeling better physically but still tired and very low energy. My last hemoglobin was 11.8 so this low energy and exhaustion isn’t anemia related. However, it is listed as a side effect of vitamin D toxicity. I can only guess that that’s what I’m experiencing right now.

At this point I honestly have no idea if it’s really time for dialysis or not. On various websites like drugs.com I have read that it can take up to 30 days for the toxicity to resolve without specific treatment. My toxicity data was higher than could be recorded by the lab test. So we would have no way of knowing how much over the upper limits of the test my toxicity is.

My thinking is to wait out the next labs and see how I’m feeling the longer I’m off Rayaldee, the medication that caused the toxicity. I feel a bit like I’ve been run over by a semi truck or two.

Meanwhile I’m looking at other nephrologist’s in my area. I’m also going to meet with my PCP to request a referral to a different nephrologist. That’s on my to do list for early next week. I’m also going to advocate for a minimum of 4 appointments with my nephrologist and assignment to one nurse practitioner for all other appointments, if I stay with my current nephrologist’s office.

I do realize that it may be to my advantage to get catheter placement done now while hospitals can do this nonessential surgery. I also realize that it would be better to get through PD training before COVID rises more—we seem to be heading for a COVID crisis in this country at this point as we’re seeing so many states experiencing massive increases in their COVID new case data...

However, I also know that it’s better to get to the transplant without dialysis, if I am strong enough to keep exercising until then and my data is staying stable etc. The transplant is supposed to be about 2 years away at this point: of course, that’s an educated guess since I’m waiting for a deceased donor kidney.

I just need some solid medical advice that I can trust to help me make decisions about my care. Unfortunately I find I am unable to trust the professionals in my current practice.

Very sad but very true.

Jayhawker

[CrystalMcD in reply to Jayhawker]

You sound like you are heading in the right direction. I have been on PD for two years. I have a great nephrologist and I am seen in the clinic twice a month (once for labs with the nurse, and once with a panel of nephrologist, nurse, dietician and social worker. I also feel free to call my nurses at any time, and there is an on call nurse available 24/7.

There was more abdominal discomfort in the beginning as my body adjusted to the internal fillings and drainings, but, as has been said, repositioning helps. I get very few alarms. My biggest thing to get used to was the fact that I usually have limited sleep positions that the machine likes. If I turn over on my stomach or on my right side (where the catheter is) the machine thinks the link is kinked and alarms. Then you have to turn over. I mostly have given up and have learned to sleep on my back.

I have not had to try CAPD. I started with nightly PD. I can't imagine having to stop all day and do the exchanges. The machine at night is very tolerable. (I use a Baxter machine.)

Good luck in the future.

[Jayhawker in reply to CrystalMcD]

Thanks so much for sharing this with me. I know I can handle dialysis. I also know I want to try to get to the transplant without dialysis if possible as that is supposed to be much better for the transplant.

With each day that passes after discontinuing the Rayaldee I’m less exhausted and tired. The foggy brain experience is gone now. All the other symptoms have resolved as well.

I discontinued the medication two weeks ago tomorrow. So I’m becoming more and more convinced that my problems have been the toxicity. I’ll finally start easing back into exercising again today. It will probably take 3-4 weeks to get back to what I could do before the toxicity elevated to that peak. (I had been feeling progressively worse for several months.)

Your nephrologist’s and practice sound like the nephrologist and practice I was with until I moved 2 years ago. I, too, experienced excellent care from him and the nurses in the practice. I really do miss him and his staff.

But I’m here now. I’ve got to make this work. Clearly I have to remain with my current situation until I’m accepted by a new nephrologist and practice. So I’ll wait for labs on July 10th. I’ll meet with Dr Lustig to go over labs, treatment for my hyperparathyroid condition without Rsyaldee, and to discuss the dialysis situation on July 17th.

I’m just disappointed in this practice. But I’ll move on and deal with it as effectively as I can. CKD is hard enough without running into these challenges with our care providers.

Jayhawker

[bytemynose]

What is CAPD? I am on dialysis and trying to learn my options.