Saturday, October 27, 2012

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 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'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.


  1. You should absolutely get a house keeper! That sounds awesome. I think it would also be great if you could get a personal chef ;) after all, your going to have to have someone creative to help you eat with your dietary restrictions. I am going to continue to pray for you. Xxx

  2. Jenn. That was the LAST thing I thought I was going to hear on here, and I don't even have the right words, except I'm sorry. I ... don't understand how it (or they let it) got so far down a path that they can't do a transplant? But I do know that if any one can power through this with her chin still up, and is brave, willing and kind to help others even as she is helping herself, it is you.

    And HELLS YES get a house keeper!
    Thinking of you and your family. xoxo

  3. I'm sorry you're not doing better. I definitely think you should get a housekeeper. If it gives you one less thing to worry about, then that's a good thing, right?

  4. Sorry to hear about your condition, but I hope you would soon feel better. Will include you in my prayers.

  5. Have you thought of getting a second opinion? I have heard of it coming back in the new kidney, but being successfully treated with plasmapheresis. Have they talked about trying plasmapheresis on you now?

    1. Hey Sarah, I'll be looking for a 2nd opinion shortly...if I can just remember to schedule the damn thing :)

  6. I read this on Wednesday and have been trying to figure out how to say "holy shit, this sucks" in a more productive manner. I have nothing. I have had a short conversation about transplanting and how FSGS plays a role, but I am not far enough along to have that conversation with the new guy.

    I'll be thinking about you - wish you were still in Indy so we could do dinner again on our way to or from DC for Turkey Day.

    1. Thanks Rob. Yeah, FSGS Sucks :) We'll see how it all plays know me....I'm not going down without a fight ;)

  7. I completely agree with the idea of a second opinion. I am by no means a kidney patient, but as a chronic patient myself, I know too well how even the best of the bests can be completely wrong.
    If you feel the need for a second opinion, then go for it : you know your body better than docs, and even docs can make mistakes.

    And for the chef, we have in France a chef who cooks without salt. I don't remember his name, and a research will not harm to find his name.
    For a salad dressing, you can put vinegar + a bit of oil + an egg yolk instead of mustard. I tried it (though I don't have restrictions) and it is very tasty.

    Kidney cookbooks are available in library. Did you think about getting one ?
    Also, you can ask to your hospital to provide you kidney cooking classes.

    Take care


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