Overdue Update

I figure I’m a bit overdue on a medical update around here seeing as I started this blog to keep everyone updated in the first place. But in the interest of full disclosure, this is going to be boring so… You’ve been warned. I’ll try to keep it as brief and simple as possible since my crazy disease just seems to confuse everyone anyways 😉

After a year and a half of wondering whether we should try stopping the soliris (the treatment for my PNH), we finally decided to do it. We just decided that we needed to know if it was helping or hurting once and for all. A year and a half is a long time to wonder if you’re doing the right thing so it was time to just figure it out.

We decided to taper off the soliris with two smaller doses and it has now been 3 weeks since I’ve received any treatment. My hemoglobin has been going down since we started tapering it off which was why I had to have a blood transfusion last weekend. I have a bone marrow biopsy this Friday and my hematologist is going to consult with my specialists which should provide us with the final pieces of the puzzle. I figured things would probably get worse as we went through this grand experiment so I’m not terribly concerned with all of this. Just something to get through in order to get answers. Assuming my marrow looks normal we will probably either try procrit (a bone marrow stimulating drug that I was previously on with mediocre success) or resume the soliris treatment.

It’s all been a bit of a pain in the rumpus but I am really happy that we are going to finally have a better idea what’s actually going on with the PNH and soliris. If continuing with soliris turns out to be the right plan, I will be just fine with it because I will finally know that it’s working and not making things worse which has been our fear for way too long. I’m not exactly loving all this time spent in the doctors office when it’s finally nice outside but it is so worth it to finally have answers.

As for my bone marrow biopsy, I hate them, which I’m pretty sure is the standard emotion for having a hole drilled in your pelvis. And thanks to my enormous milk consumption, I have super bones so I tend to have more pain from them than the average patient. But I have a plan this time so I’m pretty sure this is going to be my best bone marrow biopsy yet (if there is such a thing…). I’m getting an anti gravity chair this week which I’m pretty sure is going to be the most comfortable thing ever for hole in pelvis recovery, and it’s going to allow me to be outside instead of stuck on the couch all day. And my “assistant” Justin is all ready to come to the barn to tack my horse up and assist me at the barn everyday. I’ve discovered that riding is one of the most comfortable things I can do after my biopsies and it actually helps me heal faster so I get back on my horse as quickly as possible. They really aren’t kidding when they talk about the healing properties of riding horses!

So that’s the news for now, told you I was going to bore you to death. Lots of waiting and watching and hoping that we’ll be able to come up with some answers out of all of this. I tend to be a rather perplexing patient so we’ll probably never understand all the weird stuff my lab reports say is going on, but if we can come up with enough to make good decisions, I will be a happy camper.


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