Saturday, August 24, 2013

The heartbreak of psoriasis

Today's post will just have a few updates on Mom. (No, it has nothing to do with Tegrin). You may recall she originally had a heart catheterization scheduled for July 5, but that was cancelled because she had to have emergency surgery on July 3 due to an infection at the site of her June 11 surgery, which was to take care of infection due to a piece of surgical felt that was purposely left in after her October 12, 2012 surgery to remove the peritoneal dialysis catheter that was inserted on June 28, 2012. (Yes, that was a long sentence.)

Anyway, she rescheduled the heart catheterization for Friday, August 16. The cardiologist (Dr. R) said no abnormalities were found, so that's good news. Mom's ticker should keep on ticking for awhile. They did note that her potassium level was very low, so they gave her a dose of potassium before the procedure and then another one after, while she was in recovery. Her recovery took a little longer than expected because her blood pressure was high. Her systolic blood pressure (top number) was fluctuating between 150 and 188 in recovery, but they gave her some medication (Clonidine) to get it down and it eventually stayed below 160 long enough for them to release her.

On August 21 she had a follow-up appointment with the surgeon (Dr. K) to look at the wound from the July 3 surgery. The wound itself has not totally closed up, but it is definitely smaller than it initially was and not nearly as deep. I suppose a wound of that size will simply take time to heal and will probably leave a large scar. But Mom's main concern is some bumps that have started appearing around the wound. They are like pimples in terms of their size and how they feel, only they do not have a head on them like a pimple that is ready to pop. But she can squeeze them and get some pus out of them. She showed them to Dr. K and told him she had never seen anything like it. He looked at them for awhile and then told her he has never seen anything like it either. Once again, Mom is very special. Dr. K is going to put her on some antibiotics for awhile and see how it responds.

On August 23 she had an appointment with her rheumatologist, Dr. C. Mom gives herself Humira shots in the abdomen, but she now has those pimple-like bumps on her abdomen so she asked Dr. C about that. He said to just hold off on the Humira shots until the bumps go away. He also said it looks like the bumps are a type of psoriasis that will sometimes appear near a wound or infection. I did a little Googling on that and it sounds like it is something called the Koebner phenomenon. You learn all sorts of medical terminology by following this blog, don't you?

I know I will regret this next statement, but it has been about a month since Mom had a significant issue at dialysis (the infiltration on July 22). There used to be about one issue per week, so hopefully this trend will continue. They did start the buttonhole technique last month and it seems to be going well with one access point but not the other. We will just have to wait and see how that works out. Even if it works in just one location that will still reduce the pain by half, which would be very good.

That's it for now. It's only two months until the familial amyloidosis meeting in Chicago, with over 200 patients and caregivers plus a long list of doctors and other special guests. This biennial meeting (not "biannual," like I thought until I looked it up) is an amazing chance to rub elbows with these doctors and find out the latest information regarding familial amyloidosis. You know I'll be blogging about in detail.

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