7/30

I started my day off early. I was walking into work and it was still a little bit dark out. I had not had ANY coffee.  My brain was thinking of  several different things and I was entering the building. The beeping of the security system greeted me and I punched in the security code.  I punched the code in like it was our garage door and not the business. The alarm then detected it was wrong and escalated it’s alarm sound to panic beeping.

I started panic pushing buttons because it was before 6:00 am and I didn’t want the alarm to go off. So then the alarm went off. You would have thought we were in for a nuclear attack with the hideous, repetitive, pain inducing squeal of the alarm.  I felt hot. I immediately started sweating. 

I panic buttoned pushed to correctly type in the code….multiple times. Oh geez the poor neighbors. Finally the alarm stopped, along with my potty mouth. Phew!

We had Ethan’s hematology visit today. It took about 45 minutes to go over what has changed since last October. Then going over every medication, frequency given and strength. His appointment was well over an hour. It was longer than a CVS receipt.

Platelets help to clot your blood. When your platelets are low (the official term is “thrombocytopenia”), it becomes an investigation to find out why. There are several medications that can cause it. If Ethan has developed another clot somewhere, that can cause it, also it could be Ethan’s immune system going haywire and destroying his platelets. 

His hematologist has a list of many different causes of this condition. We have to go through one by one and rule out each one until we have our answer. 

If you looked at Ethan’s platelet graph, he was stable with his platelet count until The end of April or beginning of May. Right around the time he started his seizure medication and the other medication that can raise his tacro (rejection medication) level as a side effect (because insurance refused the one that he needed….no…I am not still bitter about it(yes I am)). Both medications can cause low platelets.

The doctor is recommending Ethan get get an ultrasound of his dialysis catheter as well as just fistula to make sure there was no clots in those locations to cause a serious  lack of platelets  

If it is a medication issue, we may not be able to stop giving him the medication that is causing the platelets to be low because the benefits of the medication, outweigh the risks of discontinuing it.

So it is not an easy seat our hematologist was sitting in. She is so nice and has a great bedside manner along with an understanding that Ethan kinda just does his own thing medically and doesn’t follow any of the text books. He is one of those jigsaw puzzles of a green screen with 15,000 pieces, that are super small. All green. 

My bright spot today was at the end of dialysis. Ethan looked at me and said “I have it pretty good.” I agreed with him. Ethan though he got handed a shitty deal, he is making the best of it. He is young and has found the secret to coping. While he is a work in progress with fluctuating emotions and medications that can make him grumpy, in that moment, with his bright smile, he was feeling accepting of his situation.