A few of you have inquired about the appointment yesterday – most of you were all up in arms over the fact that I had this pretty stinking important appointment and didn’t give any advance warning, so that the random prayer/chant/whatever tree’s could be mobilized – sorry about that. I had decided I was going to put the whole darn thing in the back of my mind and just not think about it, because it was bringing me down.
There is just nothing like hearing words like “mortality” coupled with “live donor candidate” and “cadaver donor” all at one meeting. Add to that, the very frustrated and by the end of the meeting, downright angry Dr.’s and transplant team that, from what it seems, although I did not ask, have never dealt with someone who is adopted.
I know, strange, right? At least one of the Dr.’s is older…mid-50′s I’d say. Apparently, they do more “treatment” there than surgical intervention – and don’t get me wrong, they have a world class liver transplant program – but what they also have is a pretty, um…interesting…location…which…(I don’t want to piss anyone off, ok? I really don’t) but bottom line, the vast majority of their patients don’t exactly qualify for transplant. Their risk factors and/or diseases aren’t conducive to getting on the list.
They are the absolute best in the western US and I have 110% confidence in them – they’ve just never dealt with adoption.
More notably – of all the people on the team, not a single one of them was aware of just have limiting (and limited) my access is – and most certainly, there are no living donors waiting in the wings to lop off a portion of their liver for their child and/or sister.
This was strange to them – because right off the bat, it wasn’t that I had family members who weren’t good candidates – I had family members who weren’t even considerations. None of my family members, first, would qualify as donors – and aside from that, we have the whole ‘not genetically related’ thing working for us.
As for my birth family? Ha! I mean *cough* uh…well, my birth mother wasn’t exactly forthcoming with information – and it cost her nothing and required almost no work on her part…I doubt she’s going to take off a month of work, hop a plane and fly out to Phoenix and offer me a portion of her liver…that is, if she would even do the required pre-testing to see if she’s even a match.
Don’t worry – I won’t ask – and to be quite frank – I wouldn’t accept if she offered – that’s a debt I don’t need, thankyouverymuch.
So, yeah, welcome to my world, where my concentration is best depicted by the ADHD Dog in the movie UP!.
Back to the topic at hand.
I got to the appointment and was reminded that this was my “Mortality Study” and that I was in the wrong place.
Opps.
So I truck across the street to the hospital and get to the Transplant Coordinators office just a few minutes late. I offer my apologies and explain that I had made the decision to forget what the appointment was about because it was bringing me down – so I had gone over to the clinic.
They understood. I guess I’m not the only one who deals with anxiety/frustration by burying and not dealing with it.
Anyway, they’d talked with the Dr.’s who’d done some testing on a piece of the liver from my biopsy at Mayo. They reviewed the weekly (and sometimes twice or three times a week) blood work results. They talked about the numbers, the drugs, the tests, the results and then laid it all out for me.
I wasn’t in the transplant coordinators office because they had a better view or anything – I was here to talk about why they were taking me off something they call the “passive list” – which is the list that says “Ok, this person needs a transplant, not right at the moment, they aren’t going to die in the next three days – but if the exact match walks (or, rolls) through the doors in a local hospital – we’d like to have the liver please, because while our patient isn’t going to die – we don’t want a potential donor liver to go to waste and we’re willing to do the surgery” type thing (this is how they explained it to me – it’s just all so very confusing) – I had known, after the first appointment, that I was on a list – I just wasn’t aware that I probably shouldn’t have been flying to Kansas at the first of October or shouldn’t try to ‘wait out’ a sickness – if I feel sick.
It was real. That shocked me.
Then, the next step was even more shocking – I am now on the “Ok, we’ll still take the perfect liver, don’t get us wrong – we strive for perfection – but now, even a close match will work. Again, our patient isn’t dying – not in the next three days – but we’ve officially given her 12 months on this liver she’s got – so at some point, in the next 12 months, she will be on the “Ok, she’s gonna die now, we’ll take whatever we can get now” List”
So that’s the news. They’re saying that I’ll be “ok” for the next 12 months – give or take. I won’t drop dead at 12 months, 1 day or anything – but I will start to get sicker and sicker – like I was back in August, when I was unable to hold down food. I’ll start to bleed more and then start to lose my faculties – memory loss/cognition will become more apparent.
This is the suck.
I mean, I knew this was sort of coming – I was trying hard not to think about it to much (and I did a great job today of faking it – I really did, I should get an Oscar or something) – but tonight, I am just weepy and sad and I was last night too.
Now, I just want some mexican food.
Oh and I lost 7 lbs. That’s good, right?
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{ 5 comments… read them below or add one }
Oh, Brandy.
I have no words. Only hugs.
{{{HUGS}}} from me too. Your on my prayer list of finding that “perfect” liver at exactly the right time for your family. It will happen, I am sure of it! Positive thoughts and prayers coming your way…it does suck, but, there is a plan in place now at least!
I want to understand more about what it takes to get a perfect liver. And how can they not have experience in adoption? This floors me. What is the process now?
I have all of these questions because I feel this need to DO something — is there anything you need? Is there anything I can do?
Dawn,
I want to understand more about what it takes to get a perfect liver. I am still very much in the research/understanding phase of things. I have a few informational meetings to go to myself – so I can understand it more. I also have a meeting set with my Dr. on the 8th to discuss this further. The bottom line, I have mostly put it in the back of my mind – for dealing with at another time. Not ideal, I know.
As for the adoption thing – my Dr. is my age (a year younger, actually) and the transplant coordinator is fairly new-ish, plus, her adoption exposure involved one open adoption where birth family members where very involved and one international adoption, where the topic wasn’t even really discussed.
It’s absurd, I know.
I just don’t know. Oh – I do know one thing – there was one case that they did talk about where the elderly mother of a patient told the team, outside of ear shot of the patient, that he was adopted – but didn’t know and wouldn’t be told.
The good news in all of this is, they really do want to learn. My Dr. who has been great about trying to offer anything he can to help me get more info, again offered to do whatever he could to ‘right a wrong’ – his words, not mine – with regards to medical records access. I thought that said a lot for him as a person.
But, yes, there is something you can do. Something I need. If you’d be so kind. I just need some good vibes. Some good ole jewish chutzpah driven thoughts.
It means so much to me that I write and you guys read – to know someone cares enough to come here and read what I say…to read my vents, my thoughts, my lame attempts at humor…everything – it means more to me than any of you will ever know.
So, my dear, dear, good friend Dawn – you can continue to read. Offer positive energy/thoughts/vibes and comment when the mood strikes you. You all can.
praying for you and will not give up until you have it! keep the faith, gal, wish i could do
more, but, prayers for now.