Wednesday, January 30, 2013

November 28 through December 7, 2012 - A rash of new issues

This post covers a little over a week, and we'll deal with one old issue while some new ones come up.

November 28, 2012 (Wednesday): At dialysis today they told Mom that her catheter may have an infection and may need to be replaced. She has an appointment next week (December 3) with Dr. K to see if her fistula is ready to use. It would be soooo nice to get rid of that catheter for good.

November 29: I went with Mom to her appointment with Dr. C to review her recent bloodwork and discuss a plan of action regarding her allergic reaction to heparin. Here are the highlights:

  • Mom's factor X is normal, but her blood is already thin. Dr. C reiterated that an anticoagulant is needed to keep the fistula open.
  • The risk of using Coumadin with someone like Mom who already has thin blood is cerebral hemorrhage. The increased risk of cerebral hemorrhage when a "normal" person is put on Coumadin is 1% to 2%, but there is no way to know what Mom’s increased risk would be.
  • The risk of not using Coumadin is the fistula closing up due to clotting.
  • Dr. C asked Mom to have her nephrologist call him from the clinic tomorrow (Friday). He said it really needs to be a group discussion on how to proceed.

At the end of this appointment Mom asked Dr. C  to look at a rash that recently developed on her torso. She first noticed it Sunday while she was in Austin. Dr. C took a quick look and said it looks like a drug reaction. They had given Mom an antiobotic at dialysis to combat infection on November 19, and supposedly they have continued giving that to her. So that's probably it. Dr. C suggested she show them the rash at dialysis tomorrow.

November 30: Mom’s rash has gotten worse and it really itches. She’s going to see a dermatologist at 2:00 PM today. Dialysis has been rescheduled to 5:45 AM tomorrow (Saturday) because she's too miserable to be still for three and a half hours of dialysis. But she did go to the dialysis clinic to talk to the nephrologist, Dr. N. He is taking her off the antibiotic (vancomycin) and putting her on an oral antibiotic. He said they gave her a larger dose of vancomycin on Wednesday of this week, so that might explain why the rash got so much worse Thursday evening.

Dr. N had already talked to Dr. C about the Coumadin situation, and they agreed not to put her on Coumadin. I guess that means she won’t be on any anti-coagulant, and they’ll hope for the best on the fistula staying open.

The dermatologist gave Mom a prescription for some pills and a cream. The bottle of 48 pills would cost $5000 without insurance. Mom paid $25. The pharmacist said he was prescribed the same pills once and his insurance company didn’t want to pay, but they changed their mind when he told them they could pay for his hospitalization to be given the drugs intravenously if he didn’t take the pills.

December 1 (Saturday): Mom had dialysis early this morning but still was unable to make it to a school band concert because she didn’t get done until 10 AM and her skin rash was really bad. She’s miserable due to this rash all over her torso.

December 3: Mom’s rash is still bad. Her Monday dialysis appointment was moved to Tuesday. She had an appointment this morning with Dr. K about the fistula. He said he needed to put in a stent to expand one part. This procedure has to be done in the hospital on an outpatient basis, and it will be scheduled this week or next.

December 4 (Tuesday): At dialysis today, Mom’s nephrologist said she needs to have the permacath replaced because he thinks it might be infected, and he wants the new one inserted on her left side instead of her right side. That will be done on an outpatient basis at Baylor Heart Hospital this Thursday. The stent procedure for the AV fistula has been scheduled for Tuesday of next week.

Mom’s rash isn’t getting any better. Dr. N said it takes about five dialysis treatments to rid the body of the antibiotic that she apparently had the allergic reaction to. Her last dose of that antibiotic was Wednesday, November 28. Today’s dialysis is only the second one since then. The nurse at Mom’s dermatologist also said it will take awhile for the rash to go away, and she’s not surprised it isn’t any better yet. Wonderful. Have I mentioned how miserable she is?

December 6: Mom’s permacath was replaced today, but the new one was not inserted in the other side. The surgeon said there wasn’t any need to do that. I hope Dr. N is ok with that. At some point Mom overheard the nurses talking about giving her Heparin, and she told them she was allergic to it. I wonder what would have happened if Mom had not heard that discussion?

December 7: Mom mentioned yesterday’s Heparin incident to Dr. N, and he said that info was in her chart. He suggested they get her a bracelet to wear that indicates she’s allergic to it, since she may not be able to communicate that in an emergency situation.

In summary:
  • Mom can't take an anticoagulant because she is allergic to one (heparin) and it's too risky to put her on the other one (Coumadin). Hopefully her blood will be thin enough such that her fistula does stay open if they ever start using it.
  • Her permacath has been replaced again, this time due to an infection.
  • The first antibiotic they gave her for the infection caused a really bad skin rash, and it's taking a long time to get rid of that.
  • Next week she'll have a procedure done to help one part of her fistula stay open.

Will we ever start using the fistula? Stay tuned . . .

[Edited 6-18-13 to replace doctor's names with initials.]

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