A little recap.....my doctor started me back up on Lasix (a diuretic) last Monday (40mg 2x/day) as I was having some issues with fluid retention. By Thursday, I had gone from ~66 kilos to ~62 kilos, which is a pretty drastic weight loss in that short of a period of time. Diuretics aren't exactly good for the kidney (and my creatinine had gone up since I took them), so I stopped taking Wednesday night and wanted to see what would happen. Honestly, I was surprised that things went pretty well. As I said earlier, I felt really good this weekend. I cooked some meals, walked A LOT on the treadmill, laundry.....NORMAL things. And I could breathe....it finally felt like I could take a deep breath (figuratively and literally).
By Sunday I started to notice that the weight was creeping back up again, and I had a difficult time falling asleep last night, so I took 20mg of Lasix this morning to see if I could pull off a little extra fluid today. I'm glad that my doctor has taught me enough, and trusts me enough, to adjust my dose as needed. He wants to make sure I'm comfortable, but not too dehydrated (as that can happen quickly on diuretics). Since I was getting uncomfortable, I started again, but at a much lower dose. I'll weigh myself here in a little bit and see if I need to take another dose this afternoon.
I drove down to Mayo this morning for labs and plasmapheresis. Have I mentioned how freaking cold it is here right now?
My labs have to be done before 8am in order to get my Prograf trough level, but my plasmapheresis wasn't scheduled until 1:00pm, so after labs I headed over to the 19th floor of the Mayo building, ready to spend the morning binging on Netflix and napping as that area is really quiet with comfy chairs. And the view isn't so bad either ;)
I was so happy when the apheresis unit called at 8:30 and said that they could get me in at 9:30am. WOOHOOOO! Saved from spending the whole day at Mayo!!!! The session was uneventful and they changed my site dressing. And with a new year comes a new deductible, which is why I now know that it costs around $120 in supplies just to change this dressing and I have to have it done every 7 days...
* Side note: Just checked my lab results and numbers are better. My protein is still going down (albumin/creatinine ratio is at 4484 mg/g, which is down from 5509 mg/g on the 6th), potassium is still high but I'm retaining fluid so I'll explain that one away, and my prograf level is 6.9, which I think my doctor will find acceptable right now.
I can tell you that plasmapheresis is really starting to take it's toll on my body. I was curious, so I took a look through my medical records, and would you believe that I've had 32 plasmapheresis sessions!!! That is a freaking LOT of hours lying in those beds, getting my plasma removed and replaced with albumin. When I first started doing them, I didn't really notice a difference (you may recall that I did 4 of these sessions the 4 days before transplant). But now, I can definitely can tell. I always ask for the calcium during the last bottle in order to remove the tingling sensation in my body, and I'm terribly exhausted when it's over. I can make the drive home without issue because I'm just sitting, but the ache starts to set in during the drive, and by the time I get out of my car when I get home I'm pretty sore in my hips and legs. I'm not sure why this is, but it's definitely a side effect that I experience. And I'm usually pretty wiped out the rest of the day, so now I don't plan on doing anything on the days I have plasmapheresis.
Even through all of this, I'm trying very hard to walk for at least 30-60 minutes a day on the treadmill. Even if is a slow walk, at least it's movement. I also started using my pilates machine as well (very gently, of course), knowing that the journey to regaining muscle tone is going to be a horribly long one and the sooner I get started, the better.
One last thing.....Prudential (who is the company that is managing my short term disability) is processing my long-term disability claim in case I'm not ready to return to work by February 16 (which is the last day of my short term disability coverage). This kind of freaks me out a little, as I can vividly recall the following words coming out of my mouth, "if I need long term disability, then something has gone horribly wrong". I guess it's good that Prudential is on the ball and wants to ensure that I don't have a gap in benefits, but I'm still hoping that there will be a way to get back to normal somehow soon.
