Last clinical trial appointment and a new drug....

It kind of all started with this article that was posted by a friend of mine in my facebook group:

http://www.sciencedaily.com/releases/2013/11/131108153524.htm

So, you look at those numbers and you start to weight the odds.  5 people really isn't many, but you have to admit that the results are intriguing.  I had made a note to discuss with Dr. F when I had my next appointment, but he actually called me the week after this was posted and asked me if I wanted to try it.

This made me happy because that means he's truly current with what's going on out there (not that I really had any doubts about this one, but still nice to have some confirmation) and that he's truly looking out for me when things like this come up!  I researched what I could find about the drug, and the side-effect profile is really low, so I figured "why not"?

My first infusion was last the Tuesday before Thanksgiving.  Everything went really well...completely uneventful.

As part of this visit, I had my last official clinical trial appointment for the study I've been participating in.  I was also able to get some labs done...here are the results:

Potassium:  3.4mmol/L (this would explain the AWFUL leg cramps I've been having)
Creatinine:  1.6mg/dL
eGFR:  36
Albumin:  1.5g/dL (yep, still swollen)
Protein:  12000mg (predicted, as it wasn't a 24-hr collection)

It's good to have some baseline numbers to see if this drug will work.  The plan is to do an infusion on day 1, day 15, day 30, and then once a month after that.  I have another infusion tomorrow morning.

Since this is an immunosuppressive drug, I need to be a bit more careful again.  It's been awhile since I've been on one, and I forgot how they can make me feel.  Drained is a pretty good word.  And I've instantly gotten sick....no idea what this will turn into but it feels pretty darn crappy right now.  I'm really worried as I never had time (or kept forgetting) to get a flu shot, so I'm terrified.

What sucks more is that I KNOW I need to rest, yet I can't.  I have to drive to Mayo tomorrow for  my infusion, then drive back to work, pick up a co-worker and drive to Milwaukee for 2 days of business plan planning and presentations.  I'm not up for it.  I just want to lie down.  And these next few days will do nothing in the way of helping me get better.  What's worse is that I truly don't believe my employer understands the precariousness of my health, nor do I think they care all that much.

I miss working for my former employer.  They were with me the entire time through this diagnosis, and they completely understood and supported me.  You don't realize how truly wonderful and stabilizing that is until you no longer have it.

Everything seems like one big chore right now, and I just don't have the energy to get it all done.....wish me luck over the next few days that I don't get sicker.