113 days post-transplant update

How do I begin to cover everything that’s happened since my last post?  I know that I'm going to regret terribly the fact that I haven't been blogging frequently throughout this period of my life, but I just need a break.  It's funny that I think of blog posts in my head all of the time, I'm just too tired to sit in front of the computer and put my thoughts into words.

Today, I'm 113 days post-transplant.  I wanted to do a post at 100 days, but that was the first day of normal after a 3-day migrant so I just didn't.  My last post at the end of January was right when I got the second dose of Rituximab and we were going to take a break from plasmapheresis to see if the drug worked.  It was a nice break....a MUCH needed break.  I did labs locally, and as expected, they couldn't do them correctly.  I did it 3 times at my local clinic, and my protein came back at 7352, then 920 2 days later, and then back to 4587.  Needless to say, all of that variability gave us nothing useful to go on, and the experiment turned out exactly as I had suspected.

So, I went back to Mayo on Friday, Feb 5 for a follow-up and labs with my doctor.  My blood pressure was creeping up again and I was having some discomfort around the kidney.  I swore I had another fluid pocked, so my doctor ordered another ultrasound.  Luckily it came back ok (meaning no fluid pocket), but it put even more doubts into my mind about my own body and my ability to recognize when something was off.

My protein that day was up to 7314, so we decided to start back up with plasmapheresis that day, and we were going to be intensive about it.  I did it Friday, Saturday, Sunday, Monday, Wednesday and Friday.  I took a break over the weekend (thankfully) but went back on Monday for more PP and also some IVIG.  This time he increased my dose 3-fold, but kept the infusion time the same.  IVIG infusions start slow, and they do frequent vitals checks and then start increasing the flow rate, but it didn't go so well for me that day.  Within the first hour my bp shot up to over 180/100.  We slowed it down, got me a couple more bp meds and then restarted but didn't speed up the rate this time.  This made a 3 hour infusion take 7 hours.  I left my house that morning at 5:00am, and didn't get home until 9:30pm, and I had to drive in a windy snowstorm on the way home.

When I got home, my migraine hit.  And it was intense.  I stayed in bed the entire day that Tuesday..didn't eat anything and definitely didn't drink enough.  The Imitrex wasn't even touching this one, and eventually I ended up throwing up.  I didn't feel much better after that like I usually do, so I just took a bunch of meds to try to help me sleep.  I had PP that Wednesday, and I had to have Joacim drive me this time because I just didn't think I could do it.  I had lost a lot of weight over those couple of days and was pretty dehydrated, so they gave me a bag of saline during PP to help out.  As you can tell, things have generally sucked.  A lot.

I'm dealing with a shit-ton of anxiety right now, and it's manifesting into heart palpitations.  I don't know if any of you have ever had them, but its truly awful.  I feel as though everyone in the room can hear my heartbeat.  Like if you set a bunch of glasses of water around me on a wood floor, you'd see my heartbeat in the glasses of water.  And the worst thing is that they happen at night.  So I lie there in bed, feeling like I'm going to die of a heart attack before this kidney thing takes me.  It's even worse on my left side (and of course I'm a left-sided sleeper) so I lie on my back and ponder the state of my life, which adds even more anxiety.  I find myself googling all sorts of awful things to explain the palpitations, like congestive heart failure and lovely things like that.  Google is my best friend and worst enemy.

I have discovered, however, that if I take my Xanax at 8:00pm with my evening meds, then I'm pretty drowsy by 9:00 when I turn in, and the palpitations are not nearly as bad.  I would usually take my Xanax right when I went to bed, but it clearly needs a little more time to work than I was giving it.  It's working for now...hopefully that continues.

I tried to do some yoga the other day, but I clearly overdid it because the incision area hurt the rest of the night.  And this wasn't a tiny twinge of pain but pretty intense.  It was much better by the next morning, but made me realize how truly fragile my body is right now.

I'm taking keyexalate to help pull more potassium out of my body.  I currently have hyperkalemia (elevated potassium) which effects the functioning of the heart muscles.  One of my bp meds makes the body hold on to more potassium, so in order for me to take that bp med (which is one of the better ones for me to take) I needed to reduce the potassium.  I've been working on it with diet, but I need a little more help.  The probably with this medicine is that it can sometimes induce H.O.R.R.I.B.L.E cramps and diarrhea (yippee....) so timing of the medicine is an issue for me right now.  And I can't imagine how in the hell I'm supposed to manage this, along with everything else, and go back to work.

Speaking of work, I found out a couple of weeks ago that the position I had when I left has been discontinued and now they're creating new ones.  I'd have to apply for this job, but the only way I can do that is if I terminate my leave (which I'm clearly incapable of doing right now) so my company is going to post a job and hire someone.  They say they'll have an equivalent position for me whenever I return, and no doubt they will because legally they have to, but it doesn't have to be a position that I'd actually want to do.  So, another spec of shitty news.

My employer's long term disability company (Prudential) is questioning whether or not I’m actually ready to come back to work.  Back in December I had been working really hard to start walking, and was trying to walk a 1/2 hour to an hour a day.  Some days I was up to 3 miles, and my doctor noted that in his notes.  To both he and I, this was a good sign.  To Prudential, it is apparently the equivalent of "okay to return to work".  Ummmm....if my job was solely doing nothing but walking 3 miles a day then I might understand it, but clearly that's not it.  How in the HELL would I return to work when I spend so much time at Mayo still?  I mean, is ANYONE thinking here?  And I just found out that they're trying to make this decisions on my future based off of doctor's notes from December.  They've never reached out for current notations (which is dumb..honestly...should I have to be the one to tell them to get updated notes??????).  Fuck, this frustrates me to no end.  I'm terrified that they're going to force me to go back to work.  I can't handle it. I'll fail, and then I'll get sick, and this will all be for nothing.

I feel, by far, more week and pathetic now than I ever have in my life. 

I’m battling what feels like depression.

My labs are getting more awful now…protein up over 8700…it might be higher but the range for the lab only goes so far.

So now what do we do?  What other tricks have we got up our sleeves?  Well, there really is only one at this point, and my doctor is trying to convince himself that it’s worth the risks.  There was a paper published in the NEJM (New England Journal of Medicine) in 2013 that talked about a drug called belatacept.

I’ve had a LOT of things done since transplant…a lot of medications, all with some inherent risks.  Adding another heavy-duty immunosuppressive adds even more risk to my already fragile state, and there isn’t a lot of evidence that it works.  That’s the thing about my disease, and I’ve mentioned this plenty of times before, but most of the papers that are written and published use REALLY small sample sizes….nothing that is statistically significant.  And this disease is probably not just one disease, but most likely a host of diseases, so there’s just no way of knowing whether it will work or not unless we try it.  I’ve watched my doctor closely over these last few months, and it’s made me realize that nephrology is a combination of science, art, and whole lot of hypothesizing and experimentation.  I’m sure it’s that way with a lot of other disciplines, particularly transplants, but it’s still cool to watch the method behind the madness unfold (unless you’re in my shoes and none of the art, science, hypothesizing or experimentation works to kick your disease to the curb).

So now we’ve got to decide whether the risks are worth it.  As a patient, it’s hard to imagine not trying something that might have a chance of working at this point.  I mean, I’ve tried everything else.  The thing that stops me is that I’m just so tired of feeling so awful all of the time.  It would be so nice to have a break from all of this…to gain some strength back, lose this catheter and just pretend that I’m okay for a little bit.  To go swimming, sit in a hot tub, take a freaking NORMAL shower.

But there are risks from stopping everything and just letting nature take it’s course.  If we were to stop plasmapheresis right now, my albumin would drop within days and I’d swell up like a ballon.  Albumin is the magical stuff that keeps me from severe edema like this:

When I’m doing PP,  my albumin is within range, my weight is stable, there’s no swelling in my lower extremities or my back.  The negatives about PP is this chest catheter that I’m still sporting, and the effects of the calcium depletion that occurs for me.  It’s a feeling of tingling that starts at my nose and spreads across my face, sometimes moving to my chest.  My head feels like I have an instant sinus infection (no mucous, just the swelling) and my eyeballs are all wonky.

We're going to try to wean down PP to 2 times per week to see if the swelling stays in check and the albumin remains stable.  I think I need to start giving myself EPO injections at home again because the exhaustion is overwhelming.  Fuck, I just want some good news.  Something worthy of a celebratory dinner or something.  Is that too much to ask after all of this????

I'm sure there's probably more to say, but I have to get up early for PP at Mayo tomorrow, and I'm just beat right now.  I'll try to get better about post frequency as I know some people are actually reading this, although not nearly as many as were reading it when I was going through the transplant which saddens me.