July 1 through July 23, 2012 - Gearing up for peritoneal dialysis training

July 1, 2012  --  As I mentioned in the previous post, today Mom, Ed and I went to the home of a married couple (GM and CM) who attend the amyloidosis support group meetings. GM is on peritoneal dialysis (PD), and I know he and CM have taken multiple cruises since he's been on PD. We learned that GM has AL amyloidosis which affected his kidneys. He started with hemodialysis but switched to PD a couple of years ago. He said when he was doing hemodialysis he would be exhausted the rest of the day after a dialysis treatment and sometimes into the next day. He feels much better now that he's on PD.

GM does his dialysis overnight while connected to a machine that automatically fills and drains the dialysis fluid while he's sleeping. (I think he has to do it five nights per week, but that depends on the patient's dialysis needs.) He showed us his home setup and walked us through the steps of what he does to get the process started in the evenings. He can disconnect from the machine temporarily if he needs to, so it's not like he's tied to the machine for eight hours.

He only did PD manually during his training, then he started doing it overnight with the machine as soon as his training was complete. The machine itself isn't tiny. I'd say the footprint is about twice as large as the average printer you might have at home, but it's not quite as tall. It does have its own case for traveling and I think it weighs between 25 and 30 pounds, so it's like traveling with an extra suitcase.

We discussed the logistics of ordering the monthly supplies, what it's like to travel while on PD, what it actually feels like when the dialysis fluid is inside, etc. We also discussed dietary restrictions while on PD and how they deal with that at home and while traveling. GM and CM also told us of their experiences with the local PD clinics, so we have something to think about there. All in all it was a great discussion and we learned quite a bit about what would be in store for Mom once she starts PD.

July 9, 2012 (Monday) --  Mom went to the PD clinic today to have her catheter flushed. I don't recall just where we heard this from, but supposedly a PD catheter that isn't being used needs to be flushed out weekly to make sure it doesn't get clogged up. She certainly wasn't told that when the catheter was inserted. Seems like that might be an important part of the post-op instructions. Anyway, while she was at the PD clinic they said they'd like to start the training sooner rather than later, but they need to make a home visit first to see where she’ll be putting the equipment, running the hoses, etc. She scheduled the home visit for Tuesday of next week (July 17), but she’s got a fair amount of work to do before then, mainly getting her bedroom closet cleaned out to make room for supplies.

July 10, 2012 -- Today I went with Mom to several appointments at the pre-transplant office of Dallas Nephrology Associates, to begin the full evaluation for a kidney transplant. In addition to some medical stuff like drawing blood and a basic physical exam, there was also one meeting that went over the basics of kidney transplantation, and another where we met with a nutritionist. There were no major revelations, and they said her case may go to the transplant committee in August if all the pieces come together. Given their unfamiliarity with fibrinogen amyloidosis, the nephrologist asked if we could get a letter from Mom's doctor stating that a kidney transplant was appropriate for her. Since she doesn't really have any local doctors who are all that familiar with treating fibrinogen amyloidosis, I suggested we get a letter from one of the doctors at Boston where she was diagnosed. I took the action item to get that letter sent, and I also volunteered to send the nephrologist a couple of journal articles about the use of transplants in treating fibrinogen amyloidosis. (Articles? Yes, I have articles.)

July 11, 2012 -- The PD clinic left messages for Mom yesterday and she called them back today. Apparently there was some miscommunication somewhere along the line and they said they want to do the home visit this Friday (instead of Tuesday of next week like originally scheduled), then start PD training on Monday. Mom told them there was no way she’d be ready for a home visit on Friday, and she has a funeral to go to anyway. Plus, she can’t start training on Monday because she has two doctor appointments that day, one of which is the follow-up visit with the surgeon who inserted the catheter. The lady at the PD clinic wasn’t happy about it, but that’s life. It seems like the communication regarding the catheter and the PD training has been nothing but awful. Thank goodness it’s not an urgent situation.

July 16, 2012 (Monday) -- As part of the pre-transplant evaluation, Mom had a chest x-ray and went to an informational session today regarding transplant costs. She’s been feeling nauseous since we did some work at her house on Saturday to get ready for the home visit tomorrow.

July 17, 2012  --   Mom’s feeling a little better today, but she did call the PD clinic this morning about her nausea. They suggested she call the surgeon who inserted the catheter. They don’t think it’s anything serious since there is no fever (not over 100) and the surgery site looks fine. (Infection associated with a PD catheter can become serious very quickly if it leads to peritonitis.)

The home visit from the PD clinic was scheduled for this afternoon, but the person Mom talked to about her symptoms this morning decided, without telling Mom, to cancel the home visit. Geez, can the communication get any worse? The home visit has now been rescheduled for tomorrow.

July 18, 2012  --  Mom’s home visit from the PD clinic went well. They noticed her ceiling fan blades needed to be cleaned, and they also said she needs to close the vents in her room when she’s making connections. It seems like they really want to minimize the chances of stuff blowing around while making the PD connections. I wonder how easy that’s going to be when she’s doing this away from home?

We went out to dinner with her to celebrate her birthday a day early. She’s slowly recovering from her nausea or whatever it was earlier in the week, but she's nowhere near 100%.

July 19, 2012 -- Mom has bronchitis. Happy birthday!

July 23, 2012 (Monday) -- Mom saw the surgeon who inserted her PD catheter today, and he gave her the OK to start PD training. She’ll start tomorrow.