Thursday, January 3, 2013

October 8, 2012 - Strike three?

The last update covered the first week of October 2012, when Mom resumed her training for peritoneal dialysis (PD) but it wasn't going well. We pick up our story on Monday morning, October 8. Amy is taking Mom to her 10:00 AM appointment at the PD clinic, where they will either try another PD exchange or run some tests that her nephrologist recommended last week. I knew fairly early in the day that this was going one of those days, so I took notes throughout the day with the help of the timestamps of all the phone calls and text messages on my cell phone. Below is a detailed account of my day, which included 15 text messages plus almost three hours worth of phone calls. And right in the middle of all that, a new twist came up. There is a summary at the end if you want to skip all the drama.

Monday, October 8, 2012

10:14 AM: Received a text message from Amy. "Mom looks awful today and could barely hold a conversation with me in the car. It's kind of scaring me." [I found this to be odd because Mom seemed ok when I was at her house on Saturday and took her to run a few errands.]

10:19 AM: Sent a text message to Amy. “I hope they see that at the clinic and take note. I think I’ll see if she can call me from there.”  [We've been wondering if the people at the clinic have really been paying attention to Mom's condition when she's been there this past month for PD training or to have blood drawn. Her tolerance for pain is pretty high, so they may not have been getting an accurate reading of how she was really feeling.]

10:26 AM: Short phone call from Amy. (1 minute) She was telling me that Mom was having some pain during the first exchange, and then the nurse came back in the room.

10:31 AM: Phone call from Amy. The nurse said Dr. S’s notes from last week say Mom’s not a good candidate for PD. (4 minutes)

10:37 AM: Phone call from Amy. The nurse can have Dr. S talk to someone. They gave me his cell phone number. (1 minute) [I had never met Dr. S, so I wanted to get his opinion about whether Mom's current condition was due to the anemia, the need for dialysis, or a combination of the two. I also wanted to know what the process would be once we decided to give up on peritoneal dialysis. If she's in dire need of dialysis right now I didn't want another long delay before she could get hemodialysis.]

10:38 AM: I called Dr. S and first asked him whether her current symptoms were due to anemia or the need for dialysis. He thought it was primarily the anemia. He explained the peritoneal equilibrium test and said they’d like to run it today, then they can rush the results and make a decision Wednesday morning. I asked him about the process if PD is ruled out. He said it would be hospital admission, inserting a temporary catheter in neck, then starting dialysis in the hospital. (10 minutes)

10:49 AM: Call to Amy to relay what Dr. S told me. (10 minutes)

11:00 AM: Sent a text to Laura, since she was planning on picking up Mom today. “Mom won’t be done until 3:30 today.

11:01 AM: Phone call from Laura. (14 minutes)

11:21 AM: Phone call from Amy. She said they couldn’t complete the test because Mom was in so much pain. They told her to take a laxative and try again tomorrow. (2 minutes) [I guess most issues with peritoneal dialysis are caused by constipation, since "take a laxative" seems to be the first thing they try.]

11:23 AM: Left Laura a voicemail.

11:24 AM: Phone call from Laura. (8 minutes)

11:34 AM: Text to Amy. “Laura is planning on being at Mom’s house around 12:30 to clean up some glass. Did Mom tell you about the glass lid she broke?” [Laura had just told me about Mom accidentally breaking a glass lid over the weekend, and Laura knew Mom didn't feel like getting down on the floor and doing a thorough job of cleaning up all the glass.]

11:36 AM: I received a phone call about a potential kidney donor. We'll refer to this potential donor as TUD ("The Unknown Donor") for now. (3 minutes)

11:37 AM: Text message from TUD, requesting some info.

11:39 AM: Text message back to TUD.

12:44 PM: Text to Amy: “How does Mom feel about going to the hospital today or tomorrow?

12:46 PM: Phone call from Mom. She was home at this point. She sounded ok, but still tired. She said she wanted to get some food, get warm, and go to bed. (16 minutes) [I mainly wanted to get her side of what happened today and see what her thoughts were at the moment about continuing with peritoneal dialysis. I didn't push too hard to get her to decide to go with hemodialysis at that point since I knew she was really tired and just needed to rest.]

1:50 PM: Text from Amy: “Call me when u can.

1:51 PM: Phone call to Amy. Discussed futility of continuing with PD training. (17 minutes) [At this point Laura, Amy and I are in complete agreement that it's time to throw in the towel on the PD training. Now it's a matter of convincing Mom, and we're each working on that in our own way.]

2:34 PM: Phone calls from Laura. (9 minutes) She's been talking to Mom about moving forward with hemodialysis.

3:01 PM: Text to Amy: “Laura made some progress with Mom, but she’d rather not go to the hospital constipated.” [As if she wasn't miserable enough . . .]

3:01 PM: Phone call to TUD about kidney donation. TUD does not want Mom to know about this until it gets further along. (18 minutes)

3:12 - 3:30 PM: Four text messages back and forth with Amy discussing how to potentially get Mom to the hospital tomorrow.

3:42 PM: Text from TUD.

3:47 PM: Text to TUD.

4:09 PM: Phone call from Laura. She had been at Mom’s house. (16 minutes)

7:52 PM: Phone call from Laura. (18 minutes)


In summary, today was a total failure in terms of progress with peritoneal dialysis. I know it was painful for Amy to be there and witness what was going on, but thank goodness she was. Mom's condition is declining and we don't know what damage is being done while we wait for some type of dialysis to begin. She wants to sleep on it and make a decision tomorrow morning since she's gone this far trying PD. And today a potential kidney donor stepped forward, but I can't tell Mom yet so that information has to be held very tightly.

Stay tuned to find out what happens tomorrow . . .

1 comment:

  1. The exact same thing is happening to a family member of mine right now