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A New Heart Filled Adventure

After a horrible time with my liver biopsy 3 weeks ago, we learned my liver was fine. This was after I had 3 liters tapped out of my abdomen and it was all bloody, showing a bleed from my liver into my abdomen. I ended up spending two nights in the ICU and one on the liver floor before leaving. We were so very lucky to get home before Hurricane Irene hit hard. Also my liver is fine!! Whew!


This does however mean that my heart is not :(. The doctors have tried all the diuretics and still I fill up. In fact this coming Thursday, I will have my 5th tap or parasentesis (sp?) since April. I'm not even nervous about it, which is sort of sick, because I've been so uncomfortable, especially at night that I'll do anything to feel some relief! Since the regime of trying different doses and different diuretics and constant belly taps is not an option for the rest of my life, my doctor is cautiously moving ahead.

Next week I begin some testing for an evaluation for the Heart Transplant list. OK, It's out there I typed the truth and I can't take it away! This does not necessarily mean I'll end up on the list but the cogs are moving in this direction in all of our heads. Lucky for me she states that, "I'm young and I should not have to go through too much testing." "Also because I'm young, I am a good candidate" That last line is still not a real source of comfort to me yet, but I understand it and it makes sense in the abstract.

So, when I say I don't feel good, I'm not joking but also don't need to necessarily call the doctor unless I want to sit all night in a cold ER where none of the doctors know what to do for me, listen to my chest and freak out at the sound of my crazy murmur. I've been sitting on this for a few days, and waited till I was not all emotional. The emotions constantly change. Right now I'm Numb, and am mentally preparing myself for my brother's unveiling (where we see his headstone for the first time) tomorrow. More than anything I'm just confused about the world and how things can get so screwy so fast. Ex. 14 months ago there were 5 of us now there's 4 and I'm looking at needing a new heart. How and why do bad things happen to good people, and it always feels like it's us!! Not angry just looking for an age old answer to an age old question.

With <3 Ellie
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  1. JonSeptember 11, 2011 at 5:03 AM

    Ellie I feel you I myself may be heading towards a transplant (still more testing to do). I have sort of come to terms with it however. They where considering this 13 years ago, and through new meds and procedures, as well as a lot of exercise on my part I was able to avoid it. However, my team said that inevitably I will probably end up with one. Hence where I am at now. Unable to work and sleeping 14 - 16 hours a day. If you want to talk friend me on Facebook. I am part of the same Adult CHD Fighters group as you.

    Jon (Jon Ritchings Jr on Facebook)

    ReplyDelete
  2. UnknownSeptember 11, 2011 at 6:16 PM

    Ellen, My doctors want me on 'the list'. The transplant doctor says I'm a very good candidate but for me there is a money issue and a distance issue. I'm on medicaid and I live 4.5 hours away from nearest center AND that would be the center out of state.....in Houston, Tx. Going to the one in my state of Louisiana is NOT an option for me.....met them....no good vibes from them.
    Anyway....I will be praying for you. The first time my doctors mentioned transplant was about 16 years ago. I literally freaked out. This time they were urgently insisting I get on the list. But I'm not freaked out....just tired of fooling with the government (Louisiana medicaid). So I don't know WHAT I'm going to do. But I'm not doing ANY THING until after my cruise in February :D
    See you on FB.....lol

    ReplyDelete

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