I forgot about the Rituximab

In my haste during yesterday's post, I totally forgot to mention that I had another Rituximab infusion last Wednesday.  Remember, there are 2 problems we're working on right now:  high blood pressure and proteinuria.  Lowering the blood pressure should help with the proteinuria, but it won't completely solve it, so my doctor decided to do another Rituximab infusion.  

This is the same drug that I had 2 infusions of last summer prior to transplant to get my body ready for transplant.  It is a chemotherapy drug.  I was much healthier last summer when I took it than I am now, and I can tell a difference in how I feel.  I am COMPLETELY wiped out.  I'm tired of being so damn boring and seeing the inside walls of this house, but I don't have much energy for anything else.   I believe that the blood tests I'll do on Monday will include measuring the amount of B-cells I have, as the intent of this drug is to wipe out all of my B-cells to help reduce the proteinuria. 

I tried to get some cleaning up done this morning, but then spent 2 hours on the sofa watching people build stupid tiny homes so I could recover.  I don't remember Rituximab affecting me all that much last year, but I do believe it's because of everything I've endured the last couple of months.

Tonight was the first night in 4 nights that we had Izzy back all to ourselves. and I really wanted to go out to dinner.....you know, do something different, but by 4 o'clock I was ready for bed.  Luckily, Joacim gave me little pep talk, I put some clothes on and forced myself out of the house so we could 

take Izzy to get a cheeseburger :)  We're back home now and I have no intentions of leaving the house again as I can hardly lift my arms :)

Another problem we're working on is my high blood pressure.  I wrote yesterday that we changed my blood pressure medicine from Losartan to amlodipine, and we did that last Wednesday.  We also added labetalol to the mix to help lower it.  And since then I've just been feeling really awful.  I wanted to attribute it to the surgery recovery, but it's different.  It's hard to describe, but I feel very full again around my torso, and my legs are swelling.  My eyeballs are doing their wackadoodle thing that they do sometimes, and I'm so out of breath that it's making me nuts.  After looking at the side effects of amlodipine, I believe it to be the culprit of my misery, and it's something that I'll address with my doctor on Monday when I see him again.

"I'm not feeling well today"

"I'm not feeling well today" is what I say most of the time.

"Sick" doesn't describe it accurately, and using that word tends to make people back up, almost associating the word with "contagious".  I was having freakishly watery eyes the other day, so I was carrying a tissue around, dabbing at the corner of my eye, and someone asked me if I was sick (this person doesn't know about my kidney disease).  And I think I said something to the effect of, "oh I WISH that we're the problem" because I knew the person meant something akin to a cold.  And then sometimes I wish I could just keep my mouth shut and say "yes" but that rarely ever happens.

"I'm tired" just makes it sound like I need a nap, and that's SO not even close to describing what it feels like.  I told my doctor the other day that I really only have energy to blink, and I meant it.  I was tired from holding my head up in the car yesterday on my 6 hour drive.  I'm winded by a flight of stairs.

I want to look back on this blog someday when I'm better and remember how awful this feels right now.  I'm sure I'll forget the physical part of this when I'm on the other side, so I want to make sure I note it often.

Do you know that feeling of heaviness on your chest you get when your body is submerged under water but your head and neck are not?  THAT is how I feel.

Do you know that ache in your joints and muscles a couple of days after a really hard workout?  That's how I feel.

Ever had that feeling like there are grains of sand in your eyes?  Yup...that's how mine feel.  And bulgy...like weirdly bulgy.

At the beginning of most days, my pants are too big, but by the end of the day I'm nearly in tears because I've swollen so much that they're tight.  And don't get me started on how my legs/feet feel.

It's not always like this...no.  When I'm in my yoga routine regularly and the stars align,  I can feel quite light in my skin, but that's rarer right now.  I'm in a bit of a cycle of long periods of sitting from work, one day of leaving my meds at home in the morning, and a few bad (but free) lunches through work.  I'm doubling up on the water pills, drinking lots of water, and resting a lot.  It's been 2 weeks since I last went to a yoga class, but maybe tomorrow  I'll feel better enough to give it a go.  I'm 3 pounds down today, 3 or 4 more tomorrow if I'm lucky.  But it's like starting over again every time.  I need to figure out a way to really be okay with this, and not just tell myself that I am, but I'm a work in progress.

Update on latest clinical trial : FSGS Sucks

Do you have any idea how hard it is to keep everything straight in regards to my health care.  I mean, I'm amazed that I'm able to do it as well as I am (which isn't all that great lately).

I just got a call from Mayo for the latest clinical trial that I'll be participating in.  Seems like I'll be going on February 21 in order to do a follow-up for the FONT study (which is the 5-year study that I had to back out of due to abnormal pap results), as well as get consented for the newest clinical trial (whatever that means).

Once I'm consented, I'll need to do 2 first-morning voids, as well as have the pharmaceutical company that's sponsoring the study review my biopsy slides to confirm my diagnosis of FSGS.

First of all, do you have any idea how hard it is to get biopsy slides???  It's nearly freaking impossible!!!  Annoying that I can't get my own tissue samples, isn't it?  Sort of like it's annoying that I can't get lab results through the lab, but rather have to wait for them to be seen by my doctor first before I can get them.  IT'S MY BLOOD....MY TISSUE....and always my hassel.

I think Mayo already has my slides from when I started my care there back in March.  At least I hope they do, because IU Med Center has them, and they're pretty stingy about releasing them, which equates to more delay.

Today is one of those days that I'm completely tired of it.  Tired of keeping it all straight, tired of the hassel, tired of all the work.  Just tired.  Literally, mentally, physically tired.  Do you know that I took a 10 minute nap in my car this morning in the parking lot of work before I went in because I COULD NOT stay awake? I had a full 8 hours of sleep last night...I'm off the melatonin too.  UGH.