October 2, 2012 (Tuesday): Mom resumed training for peritoneal dialysis today. (Previous training in July had to be stopped due to the dialysis fluid getting past her diaphragm and into her chest cavity.) She had some minor discomfort during the second exchange, but she shifted around in the chair and was able to get in a comfortable position.
October 3: During Mom's PD training today they realized they were not draining out as much fluid as they were putting in. Each bag of dialysis fluid is 2000 milliliters (about half a gallon), but they were only getting out about 1700 milliliters. They should actually drain out slightly more than 2000 milliliters due to the impurities that get absorbed into the fluid through the peritoneum. So they sent her to have another chest x-ray.
Mom received her first delivery of peritoneal dialysis supplies today. Since Mom was at the PD clinic, my wife Cathy met the delivery driver at Mom’s house. The drivers who deliver these supplies put them wherever you ask them to in your house, which is really good because each box of PD fluid contains five bags of fluid and weighs a total of 33 pounds. (That’s 15 kilograms for our readers outside of the US.) There is now a stack of at least 30 of these boxes about five feet tall (~1.5 meters) in her closet. In addition to the PD fluid she also received a heating pad, a scale, a blood pressure monitor, a thermometer, an IV pole and things like face masks, gloves, and syringes. Given the current issues with her PD training, however, I was wondering if she would ever get a chance to use all this stuff.
October 4: Mom met the nephrologist, Dr. S, at the PD clinic to go over the results of yesterday's chest x-ray. He is willing to keep trying to get her on PD if she's willing to keep fighting for it. She's going back to the PD clinic tomorrow (Friday) to try again and see what happens, and there are some more tests they'll do next week. In the meantime she's getting Procrit shots twice per week for her anemia. It's going to take awhile to get her hemoglobin back up. The lab work from Tuesday of this week showed the hemoglobin at 7.8, which is up a little from 7.0 last week.
I heard from two different people today that on Katie Couric's new talk show ("Katie"), there was a story today about a woman who found a living kidney donor through Facebook. Her daughter posted on Facebook that her mother needed a kidney, and they ended up matching her mom with a friend of a friend of a friend. Here is the link to a video of that segment of the show:
I have jokingly mentioned to Mom in the past that we could post something on Facebook about her needing a kidney, but I don’t think she took me too seriously since A) She’s not a big Facebook fan, and B) Marqueta had offered to donate. Unfortunately we heard today that Marqueta had to go back on her original medication, so she is officially ruled out as a donor at this point. Laura and I both talked to Mom about posting something on Facebook about it, and she’s all for it now. So Laura, Amy and I will probably post something in the next day or two.
October 5: Mom went to the PD clinic this morning to continue PD training. They did two exchanges but were only able to drain out 1800 ml each time, after putting in 2000 ml. They told her to go home and do nothing all weekend, then come back Monday morning. Given this ongoing issue of not draining out all the fluid, and the fact that her chest x-ray from this week showed fluid on the right side again, my sisters and I are convinced at this point that peritoneal dialysis isn't going to work. I told them that I would go over to Mom's house this weekend to talk to her about it and hopefully convince her that we have enough data and we need to get her started on hemodialysis.
This afternoon I posted the following on Facebook:
Even though my mother has an iPhone and is actually checking email and doing a little web surfing with it, she still hates Facebook. Doesn't want to have anything to do with it. It's just a waste of time. Nothing but trouble. But she may change her mind soon, and you (yes, you!) can help. Wanna know how?
Donate a kidney.
Her kidneys aren't doing too well, and you would probably be just fine with only one. To learn more about kidney donation and how you or someone you know can convince my mom to be one of Facebook's second billion users, click this link:
And don't worry about being a good match for my mom. You can be a good match for someone else and still help my mom get a kidney as a result. Read about Paired Donation at the link to learn more.
October 6 (Saturday): I went over to Mom's house and we had a good discussion about the prospects of going on hemodialysis, given the most recent chest x-ray and the fact that they still aren't draining as much fluid as they are putting in. Since her nephrologist is only there one day per week (Thursday), and since she's gone this far with PD, she'd like to do these last tests they want her to do before deciding to go with hemodialysis. I can understand that she doesn't want to have any regrets about giving up on PD. We agreed that I would go with her to see the nephrologist on Thursday to review the latest test results and make a decision.
I took her to run a few errands, and although she still gets exhausted with just a short amount of walking, she did fine while we were out as long as we took it easy. Since she is so tired now (presumably due to the anemia) we arranged for Amy to take her to the PD clinic on Monday, and for Laura to pick her up.
Next up: Decision time.
[July 14, 2013: Minor edit]