Wednesday, April 24, 2013

The Scary, Bumpy Road

Before we start with the update on Mom I want to mention a newsletter I recently received from Baylor Heart Hospital. That was the hospital where Mom had the robot-assisted surgery on July 31, 2012 to perform talc pleurodesis and also try to seal her diaphragm. This newsletter had a short article about the robotic surgery system they use, and it quoted Mom's surgeon as saying they anticipated doing about 100 surgeries with it in the first three years, but they actually achieved 100 in less than one year. So once again, Mom is quite the trendsetter, having been one of the first 100 patients to undergo robotic surgery at Baylor Heart Hospital.

On the last Mom update (April 6) we learned about two items of concern. First, a bump in her abdomen turned out to be an irritation (not yet an infection) caused by a piece of surgical felt placed there during the June 2012 surgery to insert her peritoneal dialysis catheter. The surgical felt is supposed to remain there to help form a patch, but they do occasionally cause issues after surgery. As of April 6 we were just waiting to see how this bump progresses.

The other item of concern was a lump under a bruise on her left breast. As of April 6 she had not had a mammogram or an ultrasound on that, but a mammogram had been scheduled. So this post will have an update on both of those issues, and it just wouldn't be a Mom update without one or more issues related to dialysis.

It was Monday, April 1 when Mom saw the surgeon (Dr. K) about the bump in her abdomen. He wanted to review the CAT scan results and see how things progressed after a week. He called Mom on Monday morning, April 8 to ask how she was doing. She told him there were no signs of infection (no fever, swelling, redness or pus), and the bump only hurts when she pokes it so she has decided not to poke it any more. He doesn't see any need to do anything at this point, so that's good news.

At dialysis on April 8 Mom's arm got really sore and she ended up with some more bruising. It looks like they may have infiltrated the fistula, which means the needle entered the fistula like it's supposed to, but it went in too far and made another hole. Wonderful. Since her most recent permacath was removed just four days ago, let's hope they can still access the fistula at the next session.

Well, the April 10 dialysis session started out just fine, with no problems accessing the fistula. After the tech got Mom all hooked up and started the machine, she told another tech to be sure and flush Mom with a saline solution every 30 minutes to prevent clogging the machine. (Remember that unlike most dialysis patients, Mom can't take any anti-coagulants like Heparin or Coumadin to help prevent clogging the machine during dialysis.) Apparently this flushing every 30 minutes is something they have been doing with Mom to prevent the machine from clogging up. Unfortunately an hour passed with no flushing, and Mom's arm started to hurt. She called a tech over and they ended up not being able to complete dialysis due to the machine clogging up, so she has to go back tomorrow. Great.

After dialysis on Wednesday, April 10, things went from bad to worse. She went for a mammogram to look at the lump on her left breast. After they looked at the mammogram they said they wanted to do some more views, and then after that they did an ultrasound. The doctor says she sees something she doesn't like, so to be on the safe side they want to do a needle biopsy the following Tuesday. Needless to say, when a breast cancer survivor is told she needs to have a biopsy on a lump in her breast, a lot goes through everyone's minds. Sometimes it's hard to just wait.

And wait.

And wait some more.

Mom had the needle biopsy on Tuesday, April 16.

And now we wait for the results . . .

She received the results two days later and it was benign, so that was obviously a huge relief. They want her to have a follow-up mammogram in six months, then she'll go back to having an annual mammogram. That was definitely a relief.

So that's where we are as of today. There were two bumps that caused some concern, but thankfully no major issues came out of either one. Dialysis is going ok as long as Mom calls a tech over every 30 minutes to flush the machine. The techs seem slightly annoyed at having to do that, but that's too bad. It's just another instance where the patient has to be their own advocate and insist on what's right.

Looking ahead, it's only six months until we depart for the familial meeting in Chicago. It looks like the number of patients and caregivers planning to attend is around 180 at the moment.

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