Monday, January 9, 2012

between a rock and ...a rock?

Now that the mad dash through the holidays are over, I thought I'd allow myself some time to tread water. It hasn't exactly turned out that way, but at least I am getting things done in the new month of the new year that I've needed to attend to for some time. As I grow older I feel more acutely the energy I deplete that I won't get back, thanks to vHL.

Three days before Christmas NIH sent some bad news via email. I particularly commend them for their timing. They 'can't' pay for Excy's airplane ticket to accompany me up there for my annual tests, and, of more concern, they claim they can't perform the surgery to remove the kidney remnant because they're 'not set up for dialysis.' Since this has been the plan for the past 5 years (since they were responsible for my losing my right kidney), this crushing blow results in adding a $100,000 to the cost of the transplant. (A kidney transplant in this country is $200,000 with an additional $6000 for meds a month until they find the 'right' cocktail of drugs for your body -- NOT covered by medicare). That's a hell of a ho-ho-ho. We are still in negotiation with NIH so not sure -- I do plan to go up there in Feb -- I would like them to look me in the eye to tell me they're throwing me under the bus.

For now, I have been taking it day by day and accomplishing one project a day I have needed to do, and I am trying to keep my pact to myself to do some form of exercise every day, which really helps. I intend to go to everyone's blog to visit, since I haven't kept up for awhile.

I hope everybody has been having a good year so far. Thanks so much for stopping by this blog. I really appreciate you. (Smiley face here). I will get back to my usual snarky posts soon, I promise!

14 comments:

"Alone again.... naturally!" said...

That was some hohoho news you got...I am so sorry and I am sure things will turn out! My hand to yours...hugs. Cathy

Retired English Teacher said...

I'm so sorry to hear this news. I hope things get worked out in your favor. I've wondered how you are doing since I'd not seen a post in a while.

Take care. Sometimes all we can do is to do things day by day, and that, my dear, is ok. Moment by moment works also.

ReformingGeek said...

YIKES! Good luck with the negotiations. I will be thinking about you.

I'm glad you are committing to exercising a bit every day. Good for you.

Ms. A said...

Well, crap on a cracker and ain't that a kick in the teeth! If they are the cause of you losing the right kidney, they should be responsible for taking care of you indefinitely... at no cost to you. You already paid, dearly.

Hope you get it worked out. I'll keep my fingers crossed and put more prayers in the pipeline.

Wishing you all the best, Amy.

Blessings and hugs!

Lois said...

Oh that is beyond terrible. Here's hoping that your tiny kidney can keep on chugging along a bit longer, until they figure this mess out.

Margaret (Peggy or Peg too) said...

I am so sorry you are having to deal with this.

I pray you can get this worked out in a positive and healthy way.

Be good to yourself!

I live about 25 miles from NIH if you need someone here for anything at all - a blogger friend can help you know. :-)

maddyrose said...

What a time to send that message. I can't think of anything to say except keep thinking positive thoughts. Guess you can't do anything more than live each day as it comes and know there are people out here giving you as much as they can in the way of moral support and sending blessings your way. Warm hugs

Adam said...

Take care and have a nice day

e said...

Amy,

Take this and your story to the press...Perhaps shaming them will get them to do what they agreed to and are now backing away from. Hugs, e

Arkansas Patti said...

Hopefully that is not the last word. Sending only good thoughts that your "talking" to them brings good results.

Tricia McWhorter said...

OMG!! Hang in there. Maybe some press releases/articles about how you are being treated could help. So many smug people who haven't had to face what you've faced truly aren't aware of the problem. Head-in-the-sand complex I guess. Hope you get the good news you deserve. And soon!

Lois said...

We are loving Dr. Who! We saw it before, but only sporadically. I love the public libray for getting series.

Lois said...

We are loving Dr. Who! We saw it before, but only sporadically. I love the public libray for getting series.

injaynesworld said...

That's so unfair. Damn! I'll be keeping you in my thoughts and a hoping that a way turns up to make everything right for you.