Another Rituximab infusion today

The last time I posted was just after I had gotten some bad lab results regarding my protein spillage.  Since then I've pulled myself out of my little hole again.  I'm getting good at doing this lately because, well, I get a shit-ton of bad news lately it seems.

I did plasmapheresis 2 more times last week and was a little wiped out going in to the weekend.  I had been experiencing a lot of pressure in my upper torso (which I've written about a gazillion times), but on Sunday, it all went away.  And my blood pressure finally started dropping.  It just felt incredible.  That feeling of fullness or pressure is absolutely miserable...wouldn't want to wish it on anyone, but it's clearly blood pressure related.  It's so hard to be patient waiting for meds to work because I've gotten very used to quick results..not always the ones I want, but they're quick.  Blood pressure meds are a different beast and can take a few weeks for the full effect (at least that's how it is for me...I'm no doctor....I'm just relating my experience).

I went to Mayo again on Monday to have labs done and plasmapheresis.  The plasmapheresis was uneventful, but the labs weren't and I got crappy results in regards to my protein again:

One day it's up, then it's down, and then it's up again.  It's been INCREDIBLY frustrating because it really feels like there's no scientific rhyme or reason to the change, but what's worse is that, when you look at the graph, you can see that the overall trend is increasing, and that's not good news for this kidney in the long run.   So, we're going to try Rituximab again.  I had a dose of it 3 weeks ago, but we started doing plasmapheresis rather aggressively right after it, and my doctor thinks there's a chance that some of it was removed through the plasmapheresis.  So THIS time, we're going to do a Rituximab infusion and STOP plasmasphersis for a week or so to see what happens.  I actually was at Mayo this morning for the infusion and I didn't experience a reaction this time because I received IV Solumedrol (steroids).  Steroids are amazing (yay, no reaction) and awful (book...EXTREMELY HIGH BLOOD PRESSURE RIGHT NOW) at the same time, so its important to use them cautiously. Even though my BP is through the roof right now, I'm still glad we used it because the reaction I experience is awful and scary.  The bad effects will wear off quickly and hopefully my bp will drop tomorrow.

We also are trying to wean off of the amlodipine due to the fluid retention issues I have with it, so now I'll be taking a half-dose of it in the evening, and adding a new med called Tenex.  The side effects of the Tenex are sleepiness (so I'll be taking it at night), dry mouth and depression.  I'm at a low dose so I don't anticipate any problems, but at least I know what to look for.

I'll do labs on Friday and Monday locally, which will be a first since transplant.  It makes me terribly nervous to do them locally because I KNOW that they're done right when I go to Mayo, and my doctor can see them easily and instantly.  When I have them done here locally, they aren't always processed correctly, and sometimes they don't even run the right tests.  Then the results are faxed to my doctor, and they aren't in the medical system in the same way, which means I won't be able to see them on my Mayo app on my phone (which is one of the most incredible apps I've used, btw), so there are delays built in already.  Fuck, I actually hate doing them locally, but it makes no sense to drive 4 hours for labs.  And I've got to get used to doing them locally, and getting all of the kinks worked out for my long-term sanity.

I had a pretty frank discussion with my doctor today about long-term issues.  Have I mentioned how great my doctor is?  I mean, he knows I'm an engineer and we got into a discussion about fluid mechanics in the kidney.  Nerdy, yes..but awesome.  Anyway, I'm concerned about long-term implications with the high potassium, fluid retention and protein spillage but mostly I'm worried about the day my doctor gives up, and I told him that.  And I'm happy to say that he won't give up on this kidney, even though we both know that 6 grams of protein spillage means a much shorter kidney life than either of us hoped for.  Anything we can do to lower protein loss is a win and that's what we're going to focus on with the Rituximab and the break in plasmapheresis.  Some of the meds I'm taking increase potassium, but those doses will either lower or go away entirely in the next 3 months. The fluid retention is directly related to the protein loss, and thankful the Lasix is keeping it in check for now.

I was REALLY down last week.  I'm being totally honest when I say that there isn't a single minute that I'm awake where I'm not thinking about this kidney, and it consumes me sometimes.  I'm a terrible wife, mom and friend right now, but I'm a great patient, and I guess I have to be OK with that right now, knowing it's not for forever.

Feeling defeated tonight.

My albumin/creatinine ratio today had risen from 3159mg/g on Friday to 5986mg/g this morning.  That's nearly double in 3 days.  And for the LIFE of me, I can't come to any reasonable conclusions as to why.  I was on such a good, DOWNWARD trend up until today.

I haven't spoken to my doctor yet about these results, so understand that everything I'm writing is my own brain coming to it's own worst conclusions.  So last Friday, we changed up my amlodipine to stop taking it in the morning, yet continue with the 5mg dose in the evenings, which I've done since Saturday morning's dose.  I did notice, over the weekend, that I was feeling less and less good.  I was retaining more and more fluid, my weight was increasing as well as my blood pressure.  I explained away the blood pressure by the amlodipine dose change.   I understand that these things can sometimes take a few days to level out, so I didn't want to freak out too much.  By Sunday, I could REALLY tell that my blood pressure was high again, and sure enough it was 160/97 Sunday evening (which is terrible, for anyone that doesn't know that).  I had easily gained 2-2.5 kilos since Friday as well, and I was feeling every single one of those, with seemingly all of the fluid accumulating around my ribcage and my eyes.  Fuck, it just feels truly awful.

My bp readings during plasmapheresis were high today as well (not as high as at home, but higher than the last few sessions had been).  I spoke to my doctor about how I'd been feeling lately, and he agreed to increase the lasix for a couple of days to see if that helped with both the fluid retention and the blood pressure.  He didn't want to change the amlodipine again because we both know that it's going to cause lower extremity swelling on me, so the hope is that losing some of this fluid will lower the bp, and I'm on board with that theory.

But tonight, right before Izzy's gymnastics class (which I had actually planned on going to for the first time since transplant) I casually checked my lab results from today and just felt like I had been punched in the gut.  I just can't understand, and I just can't stop my mind from swirling around the number.  What does it mean?  What is this kidney trying to tell us???  Is it unhappy about the higher blood pressure?  Is it upset about the fluid retention?  What does it NEED to be appy again?  I just feel so defeated.  I'd love to think that this lab result was an outlier, but I don't.  My gut has been telling me something is off all weekend, and my gut was right.  I'd love to think that when I get labs done on Wednesday again that it'll be back in the 3000 range, but my protein hasn't ever dropped that fast.  Once it gets high, it takes weeks to recover.  In my brain, seeing that number tonight set me back 2 more weeks.  That's 2 more weeks of plasmapheresis....2 more weeks of this catheter...2 more weeks of the early morning drives...2 more weeks of a less-than-ideal existence.

WHY did I even check the results?  It's completely ruined my night, and made me think of all sorts of horrors.  Even though the results wouldn't be any different, I still wish I had heard them from my doctor.  And I think that might be a problem for me too.  I realize that I'm becoming very dependent on him for my mental stability in regards to all things "kidney", and I think that's dangerous.  SOMEDAY I'm going to have to deal with setbacks like this possibly, and not have the luxury of a face-to-face or scheduled phone call with my doctor the next day.  I have been INCREDIBLY fortunate in that my nephrologist continues to have regular contact with me this far post-transplant.  I'm not sure if "lucky" is the right word because the reason for the continued contact is due to the intricacies and complications of my case.  Most patients at this point have been either released to their local nephrologists, or are seeing PAs (physician assistants) regularly and seeing their doctors with much less frequency.  I haven't even had one set of labs done locally yet, and I'm terrified for that day for fear that they're going to screw up the processing of the labs, and then throw off my meds.  

I'm guessing this happens to a lot of people who have been through some sort of trauma.  And let me be clear...the transplant itself is not the trauma I'm referring to.  The transplant has allowed me to be here to bitch today :)  The trauma is the recurrence of my disease, and the assorted complications due to it.   I'm strong, yes, but a part of me is terrified of being released from my team at Mayo.  I guess  a part of me may also be thrilled when that time comes, because that means I'm well enough to be on my own, but I'll probably always be a teeny bit terrified.  It's clearly time for me to start seeing my therapist again to help me work through these issues.

Sometimes ignorance really is bliss......

Today was THE BIG day.....which meant I spent a lot of time with this.

This (for those of you that don't already know) is called a bonnet, and it sits conveniently over the toilet seat so you can easily collect your urine (which is WAY better than a using a dixie cup :)

It was a fasting appointment, so all I had this morning was this.....can't describe how terribly unsatisfying this glass o' water was.

I saw this posted on Facebook today and had to steal and share.....it's too funny not to.

Safe delivery of precious cargo is muy important!!!

Blood....always more blood.....

Also a random urine sample up arrival....

....tucked away neatly in a tiny little bag.  They have specimen drop boxes all over the place.  It's really amazing how it all manages to work and get the labs processed in time for my afternoon appointment :)

Here is the delicious treat I rewarded myself with after I had dropped off my specimen and gotten blood drawn.  This is usually the highlight of my visits to Mayo :)

Okay, so, let's get down to the nitty gritty, yes?

Well, it didn't work.

In fact, according to the numbers, my kidneys are getting worse.  And I've been blissfully unaware of my numbers since last November.

This could be a temporary blip, or the actual failure I've been waiting for, I'll never know.

I'm not surprised.  I kept my expectations low.  Yet I was still sad when Dr. F told me. I think he genuinely was too.  He said he was sorry that he couldn't help me, and I believe every word of it.  I'm a puzzle that can't be "solved".

So where do I go from here?  Honestly, in this moment, I have no idea.  I've spent 8 years looking forward to "something", never really knowing what it was, only that I had hope.  And now I no longer have hope.  So that's a pisser.

I'll discontinue the infusions now, and do a follow-up in 4 months to check-in.  I'll start taking potassium supplements because I apparently can't eat my way into good numbers here (regardless of the amount of tomatoes and bananas that I consume).

For those that are interested in numbers, here they are:

Albumin:  1.7g/dL
BUN:  27mg/dL
Cholesterol:  306mg/dL (LDL 183, triglycerides 190)
Creatinine:  2.1mg/dL
Potassium:  3mmol/L
Creatinine Clearance:  31mL/min/BSA (this is my GFR......magic number for transplant listing is 20)
Total Protein:  16130 mg/24 hr

So now, I wait..........I don't really want to be cheered up.  I want to whine and wallow for a bit.  I'm allowed at least that.

Improved creatinine AND appetite : FSGS Sucks

Haven't updated in awhile....just honestly haven't felt like writing much.

A bit of good (ok, probably great) news is that my creatinine is back down to 1.6 after 1 1/2 weeks off of Prograf and bactrim.  It appears that the Prograf was becoming toxic, explaining the sharp increase in my creatinine and all of the other symptoms.

A negative side effect of this, however, is that I've totally regained my appetite.  I had lost about 12 pounds in the last month, probably due to not eating / lack of appetite.  Sadly, I think I've gained it all back in a few short days.  I am CONSTANTLY feeling hungry. I've been on a salt binge too, which is exacerbating the weight gain.  Vicious stupid cycle.  But DAYUM, food tastes GREAT again!

So I guess now I'm preparing for Dr. Fervenza's study.  I'm also going to get a local nephrologist to handle my primary care.  I'm not getting the warm and fuzzies that I need with Dr. Fervenza right now...it just seems as though, since he has no other treatment options, that I can't be "treated" anymore.  What I mean by that is that he isn't very good about preparing me for the future...discussion options and what not, and that's what I need right now.

I'm realistic and sometimes optimistic, but that in no way belies the fact that the inevitable WILL happen someday.  My sanity requires preparation and lots of discussion.

Seriously sucking : FSGS Sucks

When I woke up this morning, I didn't think I'd end the day by researching the link between Prograf and creatinine, how to prepare for dialysis and where's the nearest center, yet that's what's happened today.

Around 6:00pm, my doctor at Mayo called with my lab results, and seemed a bit freaked out.  Here's why:  

My creatinine has jumped from 1.8 to 2.8 in two months.  That's a BIG jump.  This is a bad jump. 

A creatinine of 2.8 lowers my kidney function to an eGFR of 19, which puts me solidly in stage 4 CKD.  According to what I read, at an eGFR of 20 you can get put on "THE LIST".  Yes people, I'm talking about the UNOS Transplant list.

I'm clearly peeing less and less....another indicator of decreased kidney function.  Did you know that lots of dialysis patients don't pee?  Won't that just be WEIRD?  Okay, the ONLY upside is no need to use those ultra-creepy restrooms at gas stations :)

  

My protein loss hasn't changed much...still hovering around 12000 mgrams.  A normal person averages less than 150.

And clearly, based off of this following graph, I'm having some electrolyte issues.

The funny thing is, I feel pretty OK.  I think I got a definite boost from the albumin infusions (still minimal swelling, and I've spent A LOT of time in a car this week).

So the plan is to stop taking Prograf/tacrolimus (which is great because it gives me the shakes) and bactrim (which is also great because it causes thrush) immediately, and then do another blood creatinine test on Monday when I get my INR checked.

I seriously don't know what to think.  I think I'm in shock.  I know I'm happy for happy pills, 'cause if it weren't for them, I fear I'd be a babbling mess.  This is where it's good to be numb.

Wish me luck folks, this journey's about to get bumpy.

Why must some things be so hard? : FSGS Sucks

I tried to fill my tacrolimus prescription yesterday.  It's 5mg  2x/day, which equals 300 pills.  My insurance will only fill 180.  My doctor, a very busy doctor at Mayo Clinic, has to provide Cigna with a pre-authorization.  Seriously.  This is my life.  And now I'm going to spend a week of time I don't have sorting it all out.

I also spoke with some doctor at Mayo today about my last tacrolimus lab results.  My regular doctor and the fellow doctor from the last time are both out of the office, but she wanted to make sure that I got a follow-up, which was nice.  My trough levels were at 5.1mg 2 weeks ago, and we're looking for around 7.  This makes me assume that Dr. Fervenza is going to want to up my dosage, and it's around my current dosage that the headaches begin.  I've had one nearly ever day since last week, and I have zero quality of life when they hit.  Hell, I just wanna whole up in my bedroom in the quiet darkness, yet I have a JOB and a DAUGHTER and a HUSBAND and a HOME and a LIFE that I want to lead.

I know we're going to disagree about what the next steps are, but I hope we figure it out TOGETHER.  The doctor that I spoke with (who shall remain nameless because I just didn't bother recording it in my brain) mentioned cyclosporine, and I was like, "Are you KIDDING ME?"  She asked if I'd taken it, and I told her that I had in 2009 with no success.  I already know that I'm not doing it again.  I'll try a new drug, but not one that I previously took for the required amount of time with zero success.  I know what the side effects are, and unless there's some new study or data available, I have zero faith that it will work differently the 2nd time around.  This is where doctors and patients sometimes lose their way, willing to bang their head on concrete if they thought it might save their kidneys.  I'm not that patient.  I'm going to make sure they hear me loud and clear when I discuss my quality of life, because that's ALL I have right now, and I'm not willing to give that up when I know there's a better future that I should expect.