Wednesday, January 27, 2016

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.


12 comments:

  1. Prayers for you, I don't know if u believe in that, but ur in my thoughts anyway... I happened onto the site that led me to ur blog. I was diagnosed with FSGS in Nov & it's scary. I'm on Chol med & omega 3 . '& diet. Is there a way to subscribe?

    ReplyDelete
    Replies
    1. Hi Cynthia...I'm sorry to hear of your diagnosis, but I'm glad you found me. If you put in your email address to the right where it says "Follow me by email" that should do it. If that doesn't work, let me know and I'll figure it out :)

      Delete
  2. hi,
    just a question/recommendation: has your doctor considered a trial with galactose? according to some articles, it is supposed to work in fsgs-recurrences post-transplant. wish you all the best, keep the spirits up (you know: eneryone can do it when it's easy...),

    henry

    ReplyDelete
    Replies
    1. Hi Henry,

      We haven't talked about galactose, but we have talked about abatacept. I'll run galactose by him and see what his thoughts are. Thank you!

      Delete
  3. Hang in there! You have come so far. It will all work out. I have faith. I have had fsgs for 22 years. My kidney function has declined slowly over the years and I am now sTage 4. I am lucky to have had two kids during this time but I know I have rough road ahead of me. You are inspirational. Please take care.

    ReplyDelete
    Replies
    1. Thank you, Sandi!

      Living this life is hard, but it's worth it to see my daughter grow up. I still have a lot of living I'd like to do, so I'm not done yet!

      Delete
  4. That's right! You have to stay positive and keep looking forward to the future. Its all for the kids. You will see your grandkids one day! That's what keeps pushing me forward.

    ReplyDelete
  5. That's right! You have to stay positive and keep looking forward to the future. Its all for the kids. You will see your grandkids one day! That's what keeps pushing me forward.

    ReplyDelete
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Catching up....

 I gotta be honest....I don't feel much like posting here lately.  So many times I start writing the post kind of "in my head"...