November 16, 2012 (Friday): I don't have any notes on Mom's dialysis from Monday and Wednesday of this week, so things must have been going smoothly. You know what that means, don't you? Something is about to happen. Sure enough, at today's dialysis appointment Mom's nephrologist (Dr. N) told her that based on her recent lab work he thinks she is allergic to heparin, which is typically used as an anticoagulant in dialysis machines. He suggested changing over to Coumadin, but thankfully Mom knew that she shouldn't be on Coumadin either because of how thin her blood is and how easily she bruises. Dr. N said she needs to see a hematologist, so she has an appointment with her oncologist/hematologist Dr. C for Tuesday, November 20. (He is the same Dr. C that she saw back in early 2010 right after she was first diagnosed with amyloidosis.)
November 19, 2012: Mom had a slight fever (99) at the beginning of today’s dialysis. After about an hour she realized she was freezing cold and shuddering, so she got the attention of a tech. He brought her a blue glove filled with warm water, which helped a little but not enough. Then she mentioned she had a slight fever at the start, so they took her temperature again and it was 101.6. They believed she had an infection so they gave her some antibiotics. They kept her there for awhile after dialysis because they knew she wasn’t doing well.
November 20, 2012: I went with Mom to her appointment with Dr. C today, regarding her allergic reaction to heparin. Here are the highlights:
- If you’re on dialysis you must be on some sort of blood thinner, otherwise the fistula can start clotting up and restricting blood flow.
- Although Mom's bruising would be a concern if she were put on Coumadin, the main concern would be the increased risk of cerebral hemorrhage.
- She may have something called a factor X deficiency, which has to do with blood clotting. (That's a Roman numeral 10, not the letter "X.") Whether or not she has that will give us some direction on how to proceed.
- If she has to go on Coumadin, she would need to be hospitalized for some time period to prep her body for it. Once on Coumadin, she may be put on a small dose instead of a standard dose, since her blood is already thin.
- She had blood drawn after today’s appointment so they can determine the level of various factors in her blood. We’ll proceed from there.
So now there is a potential complication with hemodialysis, and there may not be an easy answer as to how it should be addressed. As Dr. C put it, Mom may have ticks and fleas (two rare conditions that have to be dealt with). I felt comfortable that Dr. C knows what he's doing and is not going to rush into anything. He said that once he determines what is really going on with Mom's blood, there may need to be a group discussion between us, Dr. C and Dr. N (nephrologist) to weigh the pros and cons of the possible alternatives.
Since this was the first time we had seen Dr. C since before Mom's diagnosis from Boston, I did make a point to thank him for not prematurely treating Mom for AL amyloidosis back in 2010. I told him familial amyloidosis is frequently mistaken for AL amyloidosis, and when those patients are given chemotherapy it causes polyneuropathy.
November 21, 2012: In kidney transplant news, TUD (The Unknown Donor) is compatible. However, TUD's blood pressure is borderline so they are going to send a blood pressure measuring device to measure the blood pressure for a time period. The device logs the measurements internally and the pre-transplant group downloads the data for analysis after they receive the device back. Mom still does not know there is a potential living kidney donor being evaluated.
Mom drove to Austin to spend Thanksgiving weekend with Ed and his family, which meant she had to schedule her first out of town dialysis sessions for Friday and Monday, November 23 and 26. (There is a person at the dialysis clinic who does this scheduling for patients when they travel.) Unfortunately the closest clinic they could get her in was about 20 miles away and the times weren't very convenient. I suppose you have to take what you can get when traveling on dialysis. But both dialysis sessions went fine and there were no issues. So it's good that she has traveled away from home for a few days and we know it's possible.
Next up: Of course something else can go wrong. Why do you ask?