Friday, July 1, 2016

My current state is: WORRIED

I have been retaining more and more fluid as the days have gone by, and my usually steadfast solution hasn't worked to start fixing my problem.  Usually, when my weight inches up, I take 40mg of lasix (20mg in the morning and 20mg in the afternoon) and the water starts getting pulled off, but not this time.  I actually GAINED weight when I did it this time.  Even 3 days at 40mg haven't done anything.  I think my perception of weight is horribly messed up now.  Since I started PD almost 1 3/4 years ago, I've had to take my weight every morning and every night, so I'm VERY in tune with small fluctuations in it.  But sometimes these small fluctuations seem to grow insanely large in my head.  I think I can sometimes get into a situation where I see the weight shift over the course of a day or two, and I start freaking out.  It's hard not to, because I know how hard it can be to pull the weight off once it's there.  Then I start doing stupid things like restricting what I eat in order to make sure that the number on the scale isn't freakishly high when I weigh myself before bed.  I know it's wrong, and I'm glad I can self-correct it before it gets out of hand, but that doesn't change the mental battle that's happening.  I just wish this was one thing I didn't have to worry about, but apparently my Genie is locked in a damn bottle somewhere and not granting me any more wishes than the one I received on November 3, 2015.

My blood pressure has been weirdly high since last week also.  No matter what I do (go for a walk around the neighborhood, or even the normal lowering that occurs during plasmapheresis), it's not budging, and is running pretty high 160s/100s.  My diastolic is rarely below 100 anymore, and I can feel the physical affects.  And the only thing that's really changed is that I'm on an antibiotic for a sinus infection, I started taking Flonase and my doctor has me re-start taking sodium bicarbonate to level out the acidity in my body (because if your acid levels are too high, your body starts to leach calcium from your bones to remedy).  I feel pretty confident that the antibiotic (amoxicillin) isn't having an effect, but I stopped taking Flonase temporarily because I've had trouble with some post-transplant approved allergy meds (I'm talking about you, Claritin), and I reduced the sodium bicarb because it can cause some fluid retention.  Nothing is helping and I feel like I'm drowning from the inside.

I noticed my urine output has been decreasing the last couple of days, which is easy to notice if you drink 3L of water a day.  I was a little shocked when I realized it had been almost 4 hours since I last went to the bathroom, and I usually can't go more than a couple of hours.

At plasmapheresis today, I was able to see my doctor and talk about it with him.  He noticed that my prograf trough on Tuesday came back at 10.9, which is a huge jump from the previous Tuesday's level of 7.1.  That may explain why my creatinine also rose (from 2.3 to 2.5) during the same time frame.  My doctor believes that, by lowering my Prograf dosages from 4mg 2x/day to 3mg 2x/day, it'll be enough to jump-start the kidney again, lowering the creatinine and assisting in fluid removal.  He said that if I don't see results by Sunday, that I can take more lasix.  Because I completely trust and respect him, I'll wait, but it's hard to not feel like I'm dying right now.  I'm not being dramatic either.  It all feels very, very awful.  The swelling is not only in my belly, but it's around my ribs and lungs, and moving into my limbs.  I had to loosen my watch today, and most of you know how skinny my arms are.   I'm sluggish, confused, and unable to focus or have a conversation.  At this point, I can pretty much just lie down, which is what I did when we got home today.

Oh, and did I mention that we have friends visiting us from Sweden right now too?  Luckily, they are fantastic and completely understand, but it's still frustrating to me to not be able to perform BASIC human functions like parenting and communicating and enjoying an evening on he deck on this BEAUTIFUL evening having a chat and a glass of wine, or a bike ride to the ice cream store after a lovely day.  Things I excel at right now are sitting, lying down or staring.    Izzy and I started watching a track and field competition on TV, and there was a 41-year old man getting ready to run the 10,000m race.  This guy is my age getting ready to compete for a spot in the Olympics.  I'm 41 and lying in bed at 8:00pm on a Friday night.  I'm not saying I'm comparing myself to an Olympic athlete.  I'm just comparing myself to anyone in my age bracket that's able to live their happy normal life.

My doctor scheduled an ultrasound for next Tuesday to see if these might be signs that I have another fluid pocket near the kidney ureter/blood supply like I did earlier this year.  If that's the case (and I hope above all hopes that it's not) then it's an easy fix for the surgeon but another surgery recovery for me using the same incision (that would make 4 surgeries in this particular area).  I will try very hard to not get ahead of myself and focus on Sunday.  This may be very hard if I wake up tomorrow morning feeling like I do tonight, because it doesn't get better during the day which means tomorrow night will suck even more and I'll miss out on even more....okay, deep breaths...

I wanted to end this post on a positive note, but then when I figured out what I wanted to write about, I realized that this would be an extraordinarily long post that most people won't read, so I'm going to break it out into another post following this one.


  1. I am Japanese,suffering from the same disease. I kept reading your blog, which is quite great guide for me. I hope some new medication will help us in the near future.

  2. Is it impossible to take another transplant as the below case.
    If not, sorry for the wrong information.
    I hope your full recovery.


  3. We are urgently in need of kidney donors in wockhardt hospital India for the sum of $500,000,00,( 3 CRORE INDIA RUPEES) All donors are to reply via Email:


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