My Mayo Visit : FSGS Sucks

I had my most recent visit at Mayo last Friday.  Normally I blog about it right away, but this time was different, and I needed some time to digest and figure out my next steps.  To make a long story short, nothing's working, and I'm getting sicker.  All of the important numbers are going in the wrong direction.  I'm spilling 12+ grams of protein, my albumin is back at 1.8, my creatinine is up to 1.9, and my GFR has fallen to 31.  So now I'm teetering between stage 3 and stage 4 kidney disease.

Sadly, this wasn't the worst part.  I actually wasn't even surprised by the numbers...you get kind of numb to them after awhile.  It's when my doctor said that no one would transplant me because I'm too sick and that my FSGS would come back right away that my heart hit the floor.  I was shellshocked.  I started crying.  I saw my short life pass, and then I saw Izzy and I lost it.  I felt like 30 years of my life had been taken away from me with a few words.  I had always figured I'd need 2 transplants, and hoped each one would last 15 years.  But those words changed that for me.  I know that the likelihood of me living the rest of my life on dialysis is small, at least with today's technology

I've never been told that I wouldn't qualify for a transplant before.  I have ALWAYS assumed that dialysis was the next step.  I'm not exactly sure of everything he said after that, but it was something to the extent that it was because my albumin was so low and my protein was so high that it just wouldn't happen.  I cried, I wallowed, I told Joacim and shell shocked him too.  And then I had to put the thought out of my head, because I couldn't function.  There are few things worse than getting news like that late on a Friday and having a weekend to digest (or in my case, imagine the worse).  And don't get me wrong...I appreciate the honesty...I harbor no ill will or feelings against my doctor, because he treats me with respect and wants me to know everything that's going on.

So, for now, we're changing things up just a bit and adding a few things.  We're spreading out the prograf dosage throughout the day (so instead of 5mg 2x/day, I'll take 3mg in the morning, 3mg at noon, and 4mg at night). I think he's doing this in the hopes that I'll be able to tolerate more eventually, because right now, anything about 10mg gives me AWFUL headaches.  We've also added a phosphorus binder to the equation because it's stupid high (5.9 where the range is 2.5-4.5).  Too much phosphorus causes a sensation like bugs crawling all over your skin, and it's miserable.  Add that in with my existing eczema and the change in seasons, and I'm an itchy mess.  Cross your fingers that this will provide some relief.

The biggest thing for me is that the doctor has now put me on Coumadin, which is a blood thinner.  This one terrifies me.  The point is to make my blood thinner to prevent DVT or a pulmonary embolism.  I do not currently have a clot that I know of, but this is a preventative measure due to the high amount of protein that I'm spilling.  There are several things about this med that are life-changing:
1.  No more alcohol, which made me look ridiculous being the ONLY person not drinking a beer when we were having an event the other night.  Yuuuuuummm....iced tea for me please.
2.  I have to have my blood drawn every 2-3 days until we get my dosage stabilized.  This is causing some scheduling difficulties with work.
3.  I can no longer drink tea, or cranberries because it has a high amount of Vit K in it, which can counteract the Coumadin.
4.  I could bleed to death by brushing my teeth (okay, this one is probably extreme, but have you ever read those papers from the pharmacy??????) which is why I have to wear one of these 24-7 now.

my medical alert bracelet

I also had to go get a chest x-ray because last Tuesday, I felt like I was breathing through a wet sponge.  My eyes were all puffy and I felt pretty run down, which probably indicates that my lungs are filling with fluid.  Awesome.

waiting for my chest x-ray

Part of me is still TOTALLY FREAKING OUT about all of this.  But I was able to share it with my friends on my FSGS group on Facebook, and they empowered me again to do something.  You see, sometimes it's all about feeling in control, even if the outcome doesn't change.  So I'm trying to work now to see what the next ten years of my life look like.  I'm seriously studying dialysis now because my GFR is dropping quickly..it's gone from 52 to 31 since April.  I know part of that is medicine-caused, but not sure HOW much.

I'm also going to go see another doctor to help me understand what my options are.  I've spoken to him on the phone before, so this isn't about new treatments or anything, but about what my options are going forward.

Dr. Fervenza is also starting another clinical trial in December, which I'll take part in. It's a blind study, so I don't know if I'll get the drug or a placebo, so it may not do me a bit of good, but clinical trials help others, so I'm game for most anything.

Most importantly, I've been able to talk to 2 of my best friends in the world, and it's made a huge difference. They are my support, my voice of reason, people that let me (and sometimes encourage me) to be weak, yet understand what makes me tick and why I can't.  They're also heavily in my corner for getting a housekeeper, which WILL happen after Christmas.

My thoughts might be rambling, as I predicted, but I think I got put what I could for now.  I can't go down the rabbit hole of Izzy and Joacim and how this affects them.  I honestly can't handle it now, and since nothing is going to change RIGHT NOW, I'm ok with that, an I think they are too.  So, good night all, thanks for reading, and thanks for supporting me.