Sunday, July 17, 2016


This actually happened two weeks ago, now, so I'm playing a bit of catch up. I'm currently in the hospital receiving chemo.

Going to harvest my stem cells I was doing kinda rough from the Neupogen and the flare up. I lost vision in my right eye, was having trouble walking and standing, and still had a bit of bone pain going plus a migraine from not sleeping well. I was given more high dose steroids which helped combat some of these issues. Overall the process went pretty well. I harvested 18.42 million stem cells which is much more than the 2 million required and more than what they estimated I would produce so I guess those pesky Neupogen shots were worth it. Although I'm still hoping I won't have to do anymore of them.

I had a bit of a hard time getting the Vas Cath line, how they were removing my stem cells, placed in my neck. My heart condition makes it so things like lidocaine don't totally numb like should. Yeah let's just say I could feel them cutting my neck and it wasn't a pleasant feeling but you just have to lay them and take because if you move it will be even less pleasant.
Vas Cath site (once removed)
The harvest process itself was very cool to watch. There were lots of whirling colored tubes. At the vein check appointment, which for me was showing me the clinic and then slapping the bruises where I just had labs taken, they explain that you can what tv. What they don't explain is that the machine is quite loud and there isn't a remote for every room. I didn't mind because I just wanted to nap. I didn't want to come back and harvest over another day so we just stayed late to get it done. Meanwhile we are trying to figure out how to fix my wheelchair because it had broken on the way over. It was getting to the point where the wheel was catching on every little bump and digging in, essentially dumping me in the process.
Me and apheresis machine 5
I was very weak after harvest and it would have been helpful to have a working wheelchair but we eventually made it back to the hotel. I wasn't able to use the walking sticks that I normally do because the way my neck was bandaged up after harvest caused my neck to be pulled to one side and I couldn't exert pressure on it. I ended up having over an inch long scar plus the incisions from where the sutures were, quite a bit bigger than my counterparts for some reason. It has now been two weeks and it still hasn't healed up totally but at least it is healing evenly now. I won't gross you out with a picture of my Frankstein-ness.

It's over 19,000 cells
It took my a few days to bounce back from the steroids, the harvest, and letting me neck reset to a neutral position but I found myself generally having more energy when home. I managed to go for almost a 6 mile bike on the Fourth of July. I haven't been able to ride a bike in over two years; although most of last year I had a broken arm(s) and was recovering from shoulder surgery but I'm overjoyed to know that it is possible. I was also able to go on almost a 2 mile walk without my poles. Before the chemo and steroids these aren't normal activities for me particularly given the rather hot weather.

Now that I'm in the hospital talking to the doctor team they say that these improvements are usually signs that the overall transplant will go well and that I'm more likely to rebuild strength/skills and hopefully have lasting improvement in disability 👍👍👍👍. I would really love for that to happen but I will take whatever I can get I just need this disease to slow its roll (pun slightly intended, get it...I was in a wheelchair).

No comments:

Post a Comment