Another post, so soon after the last one. Well, this time I know a little more. A little can be a lot sometimes. Moving forward is better than one step forward, two steps back. It’s a good thing.
There always seems to be something that gets in the way. For example, I had an echocardiogram done the other day. The part of it that the doctors were previously concerned with improved from what I am told, but now there is something else in the echo that needs a cardiologist to look at, or rather, have the cardiologist look at me. Shit.
I might have had the sense to ask Dr. Tsai what this other thing is, but my brain stopped functioning as blood poured from my nose – just as Dr. Tsai was entering the room. Perfect timing. I had Dr. Tsai grab some paper towels from the bathroom. At the time, I was being transfused with blood dripping into my internal jugular vein as blood drained from my nose. Such fun! The blood going in won the race.
It was a busy day in High Dose today, Friday, 6/2/17: Lab draws, dressing change, 2 units of blood, 1 unit of platelets, my weekly Nplate injection, the visit with Dr. Tsai, nosebleed included. I haven’t been getting platelets even with low platelet counts, but since I’ve had some bleeding issues this past week, they decided that it wouldn’t hurt to give me a few.
Tuesday was an interesting drive to Loyola. I’m driving along and feel my fingers sticking to each other and the steering wheel. WTF??? I look and I’m bleeding. I grab a paper towel I fortunately had in the car and keep on driving trying to stop the bleeding. It’s only after I get to Loyola that I realized the blood came from one very small, barely larger than a pin-prick, hole in my finger that had scabbed over. I must have knocked off the scab somehow. Stop lights helped a lot. It was the only time I could really apply pressure. And, no, I wasn’t distracted by my bloody driving.
Bleeding. I hate bleeding. I imagine most people do. It’s Saturday, the 3rd and I was thinking of going for a walk early before it got too hot. I’m not ready for this hot weather yet. So what happens? That damned nose of mine starts bleeding again. It doesn’t take long to stop when I apply pressure, but it makes you not want to do anything for a short time after in fear that it will start up again. I was really bummed out, more than usual, because of this. The one step forward ALWAYS seems to have a reverse to it. I rate this nosebleed at about a ½ step back.
I did make up for this half step by going to Yorktown Mall and walking there. Of course, Cyndi came along. I made it ½ mile with less rests than I do walking the streets of my subdivision. I felt good about that and it cheered me up a lot. The cane I bought yesterday helped. I didn’t have any hip pain and my muscles didn’t tighten up like they did last week. The smooth floor made a difference as well. Sidewalks in my subdivision are uneven, sometimes treacherous and contain obstacles deposited by Canadian geese. I’ll find out of the cane helps me walk on the sidewalk when the weather cools. Later, when we got home we cooked up a couple of T-bones. For some reason, they were really good this time, better than normal. The bad thing is that I can’t drink any wine with it. I don’t need to thin my blood any more than it is.
It’s Sunday and no nosebleed this morning although it seemed like there might be for a brief moment. Saline mist sprayed up the nose helps with the dry stuff and helps flush all the gunk. I can’t blow my nose because of fear of starting a bleed.
Later, we went to Yorktown Mall for a walk. I did manage to do the ½-mile walk, but I forgot to take the Tramadol beforehand. I found out that the Tramadol does work. I was in a bit more pain today without it. The cane definitely helps; otherwise, I might not have made the full distance. I probably walked an additional ¼-mile when we went shopping and between walking from/to car and store.
Moving on … that’s what’s happening. Let’s hope cardiology doesn’t find anything to keep me from being transplanted. They didn’t before.
I’m scheduled for a bone marrow biopsy this week. I didn’t know I had one scheduled until I looked at the Loyola myChart site and saw the appointment schedule. I will have to yell at someone about this. Someone should have told me about it. Not a big deal, but annoying. This will be my fifth bone marrow biopsy.
Blue Cross Blue Shield. I’m under my wife’s federal employee program for this insurance. It’s a pretty good plan but a bone marrow stem cell transplant needs all sorts of special approvals. Approvals are being worked on. Quickly, I hope. With the amount of money that BCBS has spent on me already, I don’t think they like me very much. They probably want me to just go away.
Desensitization is the next step, but I’m not sure when it will start. Soon, is what I hear.
For the transplant, cord blood is to be used. There are no donors in the database that match and my brother can keep his bone marrow. It comes down to antibodies and minimizing rejection. More on this later as I know more.