Monday, January 21, 2013

October 29 - November 9, 2012 - Getting stressed

This post will cover the weeks of October 29 and November 5, 2012. Hopefully less blood will be involved than last week.

Speaking of cats, those of us with fibrinogen amyloidosis apparently have something in common with some of our feline cousins in the animal kingdom. I recently came across an article with the title "Familial Renal Amyloidosis in Abyssinian Cats."

October 29, 2012 (Monday): Mom had a previously scheduled appointment with Dr. K today so he could evaluate her fistula. He was the surgeon who inserted her original permacath as well. He had already been notified about the permacath replacement that was done on Friday, but he didn't have any details so Mom got to tell him all about that. (I don't think I mentioned it in the last post, but nobody really knows exactly what happened to cause that massive bleeding incident.) Dr. K said the fistula looked good so she might get to start using it earlier than originally planned. Mom then went to dialysis, which went well although she got really cold during the last hour.

October 31: Dialysis went well today, and Mom felt well enough to go over to my sister's house for Halloween, which is always a lot of fun. Here's a picture of me with my son and one of my nephews. I'm the tall one in the middle.

Halloween 2012
Halloween 2012

November 5, 2012 (Monday): Laura called me this afternoon and said she was going to pick up Mom from dialysis. She had called Mom to check on her and Mom sounded really bad and said they were bringing her some chicken broth. Laura asked Mom if she wanted to be picked up, and she said yes. Laura picked her up and found out her blood pressure had gotten low. Laura took her home and she went to bed and had a hard time staying warm.

November 6: TUD (The Unknown Donor) had blood drawn today. TUD is being told it’s about a 60 day process to be evaluated.

November 7Mom said today’s dialysis session was interesting. They laid her down for dialysis instead of sitting her up. Everything went fine until there was less than 30 minutes left and the machine started beeping. It seems as though it was clogged, and the nurse was concerned because that’s kind of like the blood clotting. But they got it taken care of and she felt fine when she got up, in spite of lying down for so long.

November 8: Mom had a stress test this morning, and I went with her to her cardiologist appointment this afternoon to review the results. The stress test was scheduled because her nephrologist recommended it back when she had some tightness in the chest during the October 19 dialysis session. That was when they slowed the flow rate down from 400 to 350 mil/min (milliliters per minute). She has not had any more chest tightness since then, and she always tells the tech to set it to 350.

(Side note: At some point in the past her cardiologist (Dr. R) determined that she could not do a physical stress test, but would instead have to do a chemical stress test. That’s where medication instead of exercise is used to increase the load on the heart.)

Besides being interested in the results of the stress test, I also wanted to make sure Dr. R was aware that although it is rare, fibrinogen amyloidosis can affect the heart. (See this article: Mourad, 2008)  Before today's appointment I had written to Dr. Berk in Boston asking him some questions about the proactive use of echocardiograms on patients with fibrinogen amyloidosis, both with and without renal involvement. He wrote me back and I printed out a copy of that email exchange to show Dr. R. Dr. Berk basically said periodic echocardiograms or cardiac biomarker measurements should suffice for monitoring cardiac function (about every two years unless otherwise warranted), and he also recommended having echo images reviewed by a cardiologist well versed in amyloid.

Dr. R said the stress test looked fine and there was no sign of blocked arteries. I explained that patients with fibrinogen amyloidosis can, on rare occasions, have heart involvement. He read the email from Dr. Berk and I gave him a copy of Mom’s 2010 Boston evaluation, which included an echocardiogram. We talked a little about detecting amyloids in the heart, via echocardiogram and biopsy. He was aware that the ejection fraction could be fine in a heart affected by amyloids, so I was comfortable he knew what he was talking about and I didn’t need to educate him any further or ask him to consult with the doctors in Boston. He said he didn’t think there was any need to do an echocardiogram at this point since the stress test and everything else indicated there weren’t any heart problems.

So there was some good news today. Since Mom is still being dialyzed through the catheter in her chest, we’re hoping things will improve once she switches over to being dialyzed in her arm.

November 9: Mom had a good day at dialysis today, but her hemoglobin is down to 7.9, and she doesn’t really know if they have been giving her Epogen at the dialysis clinic. That's something she'll have to stay on top of and possibly become a bit of a pest about at the dialysis clinic.

Next up - Support group meeting 

[July 12, 2013: Minor edit to remove Dr. R's name]

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