I got ahold of my heme team in Boston after I needed to be transfused last week.
I didn't like that my h and h had been trending down slowly but steadily with no known cause.
I needed reassurance it wasn't that nasty little tumor on my kidney causing problems even though Dr G said he felt it wasn't.
I'm all for gut instincts, but after this fall's events, I said I would never hesitate to consult or see my bean town team. Had I run to consult them early on, I could have saved myself a lot of suffering.
Good news is it's common for patients to need transfusion support when undergoing photopheresis.
My treatment is probably the cause of my anemia and not some pathological process.
Now, if only they could explain away my steadily increasing kidney function tests.
I have been keeping my eye on those two. My creatinine reached 1.4 this week, which isn't failure, but I certainly don't ever want to have that problem.
Having my kidneys fail is another fear of mine.
When I was in a coma, my friend Doc would come to visit and immediately check for urine in my catheter bag. He was checking for kidney function bc he knew once my kidneys failed, I was as good as gone.
That's always stayed with me.
I want to keep my kidneys in tip top shape.
I'm going to start receiving fluids along with pheresis. Pheresis all ready infuses half a liter with treatment. I'll be getting a whole liter from now on.
I'll continue to drink as much as possible.
I guess I could drink more, but I do imbibe about a gallon a day. I'm adding crystal light to make water more tolerable. It's working.
Anyway, drinking more is a twofer since I'm decreasing my prednisone again in a week to 10mg, A person's body naturally creates about 7.5 mg of steroids, Just a little tidbit you can now answer if anyone ever asks, so I'll possibly, hopefully, may start losing some weight.
Kevin, the empathetic nurse from pheresis, came to me and asked, very quietly, how much I weighed.
I looked around the room, wondering who he was trying not to irritate by whispering. "WHAT?!" I squacked, I can be slightly deaf.
"I weigh 150 lbs." I announced clearly.
"What?!" He whispered back. "You do not! You are 135!" He exclaimed in hushed tones.
"What the hell was going on with this whispering?" I thought to myself. There was no one else around.
"No, I just got weighed yesterday. I'm 150." I said stubbornly, adamantly, loudly when I suddenly realized he was whispering the question to be courteous to me!!
How cute. Ladies are often embarrassed by their weight.
Again,I never thought to be embarrassed until he was for me. I just think there is more woman for you to love now.
For real now, I really am thinking about this weight gain like pregnancy. It's a bodily change I have no control over. It's for the greater good. It's also temporary. When the meds are lifted I'll see exactly what was a side effect and what was good old fashioned eating.
I do still hate to see myself in pictures. I hate that my face feels different and I don't have command over my expressions like I used to due to the swelling. I think this has dulled my emotions. I feel with every part of me, and now, I just dislike how I look when I smile.
My head is huge. I feel like "Fat Head" from Dick Tracy. To help with this, I've started to try to look at and think of myself the way x looks at me, or my parents, or any of the other people who love me, which is actually more people than I ever imagined.
All they see is my behavior, whether I am happy and healthy and joking that day. That's all that seems to matter is that I'm well enough to be me, the fun, silly me on the inside. So I've made the conclusion, it's official, it really is what's inside that counts.