AN UPDATE ON THE SPINSTER STITCHER...THE GOOD, THE BAD, AND THE UGLY
(This is a copy of an email that I just sent...)
Dear Friends,
I'm just getting ready to write all of this in a blog post, but it occurs to me that not everybody on the planet reads my blog, and the last thing I need is to be offending my family by sharing news with millions of my imaginary friends and not updating those closest to me.
(They told me the hardest thing about being a transplant patient was keeping your loved ones up to date, and boy, they weren't kidding.)
If you're on this list and don't want to be, let me know. If you know somebody who wants to be on it and isn't, let me know.
On Tuesday night at 10:20 I got THE CALL from IU (Indiana University Transplant Unit) that they had a kidney for me. It was from a deceased donor who had been treated and cured of hepatitis, so they were calling to confirm that I still wanted it.
Um.
YEAH!
So the coordinator starts going through the checklist while I bawled and hyperventilated and snotted all over the front of my t-shirt and Rich had a panic attack trying to find his shoes, and then she asked me how much I weighed. I told her my after-treatment weight, she texted the surgeon (Dr Goggins) and said "He said OK" and I think I blacked out.
And then...
There was a long silence, and the coordinator said "Oh my God, Coni. I am so sorry, but Dr Goggins said you are four kilos over your goal weight, so the answer is no."
(Pause for you to go back and re-read that because you just went WHAT?! in your head and figured you misunderstood it).
Nope.
Too fat for transplant.
(But, as you are all aware....I'm too damn fat for ANYTHING, and always have been.)
So cutting to the chase...the GOOD news is that I am now at the very tippy top of kidney list for TypeB kidneys at IU. This means that the call will be coming sooner rather than later. What's sooner? Well, we're talking days, weeks, and months now instead of years. This week, they implanted two people from the TypeB list. Although rare...now that I am #1, if a good one comes in that matches me in terms of antibodies, etc. I'm good to go.
(My weight, by the way, was one kilo away from goal coming off treatment yesterday, and it will be at or below goal tomorrow due to some heavy duty fasting on my part.)
(I might drop dead from hunger and de-hydration, but I'll be damned it will be at goal weight.)
(Seriously...the dietician and team here are on it with me to make sure I don't do anything stupid, so don't worry.)
(But send cheesecake and a steak the size of my head when this is done, OK?)
The BAD was the feeling of humiliation and shame and guilt and embarrassment that I was hit with knowing I had completely blown it. Every doctor, nurse, tech, and specialist reassures me that I have been and am doing everything I can, but still...I just want to crawl back under my rock and wear the hair shirt a few more days.
The UGLY, is that I am now sitting here packing my go-bag, making my checklists, looking around the apartment for stuff I will need to live in Indianapolis for 30 days and am...how do I put this delicately...waiting for somebody to die.
This is a psychological struggle that no amount of Dr Melfi's will ever be able to get out of my head, so I will ask you all this favor:
Will you say a prayer, please?
Not for me. I'll be just fine as soon as I get the next call and get gas in the car and then stop at the Grotto. The BVM will have me covered, I'm sure of it.
Please pray for the person who dies. Please pray that they are at peace and that their family will find comfort in their grief and that I will be worthy of living up to their memory.
So.
That's the update.
I am going to use my blog as the way to keep everybody updated unless IU hooks me up with something different. The web address for it is:
www.spinsterstitcher.blogspot.com
I love you. I miss you. And, when this mish-i-goss is all over we might have to have a party. Please take care, be well, and know that I am sending you my love and kisses!
Coni
Sent from AOL Mobile