Posted 11/11/2014 10:45 PM (GMT 0)
It has now been a year. Thanksgiving looms and the memories come back. Hard.
My wife, who has always been so strong and healthy, suddenly was not. She was throwing up blood, she was out of her head with hallucinations. This happened over DAYS. She was fine, then she was not. It took me a week but I finally got her to the local hospital.
Thankfully, we are in Seattle. The hospital, Harborview, is staffed with the brightest minds that UW can find ON THE PLANET. They fixed it, at this stage. they did...things...over the next 5 months, that are indescribable. Untried, some I suggested upon finding, that managed to keep her alive.
Alas, they could not fix it when we hit that 11th hour.
My wife suffered (and yes, before we go further we are a married lesbian couple, this is Seattle, after all :)) from hepatic renal failure. We'll get to the cause in a moment. They told me week after week, this is it, this is too far, there is nothing more we can do.
Advocacy. It means being the one to say, 'Um, you sure? I don't think you are sure...let's take this a step further.' When she was lucid she was always on board. She did not want to die such a ridiculous death at the age of 40. So they pushed the envelope and time after time, stood back and went 'WOW! We did it? Yep, still alive!' and every time, the cautionary, this may last 6 hrs, maybe a day...let's see.
So I advocated to the extreme. I was not willing to wait, and neither was one of her docs. They knew she deserved to live. They called me out of the blue one day and told me of a program, blocks away, that could help.
I had her transferred to Swedish. this is so uncommon they were in a slight weird (as nobody had done that before) state over it but more than willing. They spent all weekend pushing it and that Monday, my sweet's 41st birthday, we had achieved a transfer to a hospital that reminds you of a fine hotel. With amazing views. And hope. That most of all. The hope you felt in the ambulance transfer, the medico's beaming it, from both to and from.
Two weeks later a 'possible' came in. As of April 3rd, a second birthday was given. With the gift of life, granted by some young man who had donated, due to his not surviving a car wreck. His kidney went to his brother, that is all we know...but that is enough. Thank you, young sir.
It has been 6+ months and we are back to that time, last year, where I was lost, but knew she was more so. So I stood up, shoulders down and dealt with it. This is what we do. We do not give up (even when we feel it so hard) we do NOT surrender to a sentence (every body is different, some take this, some take that, some come through with amazing results) but we GO FORWARD and just do.
The end result, upon autopsy of that old liver were autoimmune Hep. And hemocromatosis. Thankfully, the bad liver attracted that instead of her heart. Both treatments are normal post transplant, anti rejection and bloodletting (reg draws!) And she has a shiny new liver to start over with. Our lives have meaning beyond belief now.
We talk about it often, as unlike most she can remember TOO much. I signed her up with a study about memory, and ICU, and HE, and all that, they saw her as perfect for a blind study. Having talked to her docs, having talked to the study people, I wish I knew what this was they had given her.
She came through this sudden, severe beyond belief, illness....with no brain damage. Minimal memory loss (during, not life before or after) and is her, with no effects that linger. No HE, No Ascites (once they drained 12 liters, she is a bit over 100lb healthy) and no lingering effects. Even her docs are surprised at her mental agility.
There is hope, choose your hospital wisely, get you loved ones on Medicaid if possible (they really are the best to cover all this madness) SURROUND yourselves with loved ones and support, you need that to get listed. Make sure you have covered all bases. Do not skimp, this is the one time in your life to drive yourself overboard. There are more important things in life than being angry all the time (btw, I am a line cook, the most laid back one you will ever meet...but not a year ago, still a pan slinger then!) and dwelling.
Just do, and be, and you will find with support and driving towards a future, it can be.
I love you all, but I love her more, Good Luck to all, but sometimes you have to make that luck. I know.