Friday, February 17, 2017

Overview of this week's segment of "Ronni's Big Adventure"

The week of wandering the health care maze has come to a close and I am absolutely exhausted.   I don't think I realized how tightly wound with worry and nervousness I was until I got home this afternoon and collapsed on the couch.

Early in the week I saw the psych dr. who is in charge of my meds for the panic attacks.  I've had them since I was  a child (childhood ptsd -   my entire childhood is a blank).   I was coping somewhat ok the past years but when the news of the liver failure came in Nov. 2015, that took the panic up a number of notches.  The fighting the foreclosure of the house added a few more notches.  Long story.  Not for today.    Anyway, I don't like taking any sort of drug as a general rule, but with the liver as it is I'm even less willing.  So, we decided to stay on a low dose of Valium as needed (2.5) and ride it out until I saw the new hepatologist.   So, that was easy.

Next appt was with the psychologist that is working with me for the childhood stuff and how it's affecting me in adulthood.   Powerful session.   Love this woman.   She's helping quite a bit to keep me centered and to move forward. 

Today's appointment was the big one.  For the past year I have been so poorly managed by the gastro dr. that was supposed to be overseeing my liver failure situation.  Absolutely the worst.  He's "THE" guy for all of the suburban folks.  He's like a celebrity.  Impossible to get to see him.  So my hospice team suggested Dr. Anthony Martinez who is an actual hepatologist, not a gastro guy with a minor in liver.

9:40 am he walks through the door.  (i had already been seen by his partner dr. who took a great deal of info.  Very thorough.   So he walks in, handsome in a kind casual almost unkempt way.  No dr's coat.  Just jeans and a comfy shirt that I think he may have pulled out of the clothes hamper on his way out the door.   He crossed the room, arm outstretched, we shake hands and he says,
"Hey - hi.  I'm Tony".    It was everything I could to to keep from cracking up because I felt like I was in an episode of ER.   He was like a made up character.     Loved him immediately.

He says so, let's get rollin' and we're going to do good things together , ok?      He notices that I have my notebook on the table with all of my scribbled questions and points that I want to explore.  Instead of waiting for me to start asking things, he grabs the notebook and says, " ok - here we go!"
He begins going through the list and answering everything.  Told me to jump in if i needed to add anything.   Everything he said was logical, honest, straight-forward and he was able to sum things up in moments.  I could see his brain working on all levels.

We got through all of that and I felt I had some great info to work with.  I then told him that my main focus was to get a really good status of where the liver stands at this point.   Told him that according to the previous guy, I shouldn't be here right now, that I only had about 10% of the liver left and that my MELD number was really high and in the transplant realm if I lasted long enough to even get there.    (Model for Endstage Liver Disease).

I think if my previous dr had been anywhere on that floor, Tony would have gone out there and punched him in the face and walked away.   He was furious.  He said that from here on in I am to stop thinking about 10%.   He said it was old school thinking and that certainly,  the majority of my liver is not longer working and never will and I'm past the point of regeneratio,  but what's left can learn to do some new things.  Not always, but it's possible.   So he ordered a full blood work up for everything under the sun.  My other drs have never checked for 3/4 of the things he's looking for.  He added checks for cancer markers that he said should have been one of the first things to be done.  I've only been checked for one which is flagged and needs to be watched.  We're going to recalculate the MELD score based on the test results and see where we stand.  I was told it can't change in my condition via the other doc.  Tony said that's bullshit.     He also said that after blood work and the new sonogram he'll have a better picture and then we can talk "time on earth" stuff.  However, the problem still exists that a bleed out of any kind internally or an infection or my ammonia levels spiking can kill me pretty quickly   That he has no control over.    That's what actually ends up being the reason people with end stage liver disease die.

So, to sum it up -  I now have a fabulous hospice team, a med dr. that is finally listening to me, a psychologist who is absolutely fantastic, and a liver specialist that actually knows what he's doing and is dedicated to keeping me going awhile longer.   I have given permission for all of them to share all info with each other and that pleased them all.   (a lot of people won't do that when psych stuff is involved)   And, if it does turn out that a transplant is my last option, every single one in this group has said they will fight to get me on the list if my body qualifies for it.

I'm exhausted but will sleep a little better tonight.  Next week we tackle the house foreclosure situation and the utilities.  SSI has still not gone through so I'm being creative with the $280 a month.  Once SSI comes through (it still might get denied and my legal aid lawyer will just appeal it again.  He seems fairly confident it will eventually, but it takes so long!)  I'll be in a safe zone and then can just concentrate on my health.

All in all, a week that brought a bit of peace.  Doesn't change the condition, but at least I know I'll now be well managed and there's hope for being around a bit.   I sure don't want to miss the Trump Meltdown.

For those who have been thinking about me, thank you from my heart.   I truly believe that it makes a difference.  God bless and goodnight.   I think I might even skip catching up on news.  My best to everyone.  

PS:  if you respond by email, please leave an email address where I can reach you.
(I'll eventually add disqus but just haven't time to sit down and figure it out yet)


  1. OMG! Tony sounds like a real live angel of a doctor. The important thing is having confidence in your doctors and good communication. I'm so happy for you. My cousin needs a liver and kidney transplant. He has
    recently started dialysis. I know all this hasn't been easy on you but
    you seem strong in spirit despite your panic attacks. How about a gofund me page to help you through
    the waiting period?

    Best wishes, NJ_lib

    1. Without a doubt, this doctor is a blessing. I doubt I'll ever be able to call him Tony though.

      Re: Go Fund Me - Everyone here made me keep it going. It makes me feel weird. My assemblyman wanted to be able to direct people there when he gets back from Albany. (friends from my work at the library) I have a link in my "Full Profile" on the right side of the page.

    2. I hit "post" before adding, I will be thinking about your cousin. May everything go well.

  2. I would say Christmas came early this year and you got what you wanted! I'm so pleased to hear all the news. Stay positive! If this old gal can beat the grim reaper 3 times on the operating table, you sweet thing can give him a run for his money! I asked my surgeon this week if there would be any chance of getting my colon re-attached? He said, under normal conditions, a woman my age, probably not but knowing your strength I witnessed, I would say it's very probable and much earlier than normal. A young athletic guy it may take 6 months and and older people 1-3 years. You could possibly be a year! I told him I had a lot of living to do yet! I told him it helps to be a stubborn German! :-)It took Jon 4 years to get approved for SSI. It just came thru and is retro-active to when he applied. The last judge was just livid they didn't approve it when he first applied. Don't give up. Jon is 56 and hasn't been able to work for 4 years and this was his 4th back surgery. Not many work years to pay off his debts, but he is going to try. His nerve pain is gone, just surgical pain now, but he's fired up and ready to go! Has a little of his mom in him! :-) So glad you have a great doctor that is on your side and ready to fire you up too!

    1. Merry "Every Day Is Christmas" to you, your family and to mine. Positive thoughts, prayers (in any way one does so), and lots of love and kindness is the magical elixir. Bodies are mechanical (but the most impressive design ever). But they fail. Mechanics are that way. But the spirit - that stays around and connected with the others who are exploring the experience. So we try to try to fix the cylinders, the engine, the exhaust system, etc. when we can, and we keep on keepin on as long as we can be be going. Look at what you've done. And Jon. And your dear Husband. And we keep the experience - no matter where it falls on the scale. And, what I believe, is that we take it with us when our soul GPS tells us to "turn north/up/straight " at the next intersection. None of it is lost. But this particular plane is as much scary as it is amazing. Life Soup!

      My best to you, Jon and all of your family.

  3. Hey Buffalo Girl,

    The journey is fraught with dangerous toils and snares. Joy, however fleeting is what carries us through the most dangerous, real and perceived. Memories, even the most recent of those fleeting joys can be celebrated.

    Prayer counts; grace and mercy because divine intervention spiritual and physical is real though not necessarily tangible.

    We are because God is.

    1. The snares and toils are part of the because. imo - we're here for exactly that reason. The human condition/body/biopod that carries our souls is constructed to live in this 3-D world with others in order to learn what we are capable of. Ahhhh...and that is not tangible, but somewhere inside, we know (fully) that it is there. Hold fast, I say to myself. Hold fast to that.

  4. Hey BuffaloGal! I've bookmarked to read later, as I have to be off to work soon.

    1. Just testing to see if adding an av took.

    2. Yay!And yay for your new doctor, who sounds like a sweetheart.

      We all are looking forward to the trump meltdown, which has probably already started.

    3. Oh pleeeeeeeeeeeze. Let the trump meltdown be a thing. (this week???)