AN UPDATE ON THE SPINSTER STITCHER...THE GOOD, THE BAD, AND THE UGLY
(This is a copy of an email that I just sent...)
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
Coni,
ReplyDeleteI cannot but admire everything about you. Stay strong and as inspiring as you've always been. I am praying already. God bless you.
Martina
In the final analysis, that is wonderful news! You will get the weight off and be ready to roll when you get that next call.
ReplyDeleteI'm just thinking that this wasn't the "right" kidney for you and the universe knew it. The next one will be. AND you've had some extra time to prepare. It won't be sprung on you. (That's my sour grapes theory of survival-grin) Oodles of love and good vibes being sent to you from the desert southwest!
ReplyDeletePrayers for all involved! And if you need ANYTHING once you are in Indy, I am only a few minutes away, on the westside.
ReplyDeleteOMG -- my bad day yesterday pales in comparison.
ReplyDeleteand also OMG -- how do you pack stitching supplies for a month? Or maybe just a couple of pieces, with a set of labelled project bags at home that JB can bring when you finish something or want a new piece?
Sending lots of good thoughts your way.
My thoughts and prayers for you, the donor and the surgical team. This us good news! Mazel tov
ReplyDeleteI'm sending prayers for you and all involved. You are SO inspirational and I hope you don't let a "number" make you feel badly. This is so exciting and you deserve all of the happiness the universe offers! Pack a LOT of stitching so we can keep up with what you're doing!
ReplyDeleteDear Coni,
ReplyDeleteSending love and prayers to you and everyone involved in making transplants happen! Fabulous news that you are at the top of the list. You've got this!!!!
All the best and my prayers to you Coni and your team.
ReplyDeleteSending my prayers to you Coni!
ReplyDeleteConi, I'm sending prayers to you and to the universe for you to get a new kidney. Don't beat yourself up anymore. Just keep on plugging like you have been, and we will all be here to cheer you on.
ReplyDeleteWishing you only the best and that the next call comes soon! Just remember that your donor signed up to donate. S/he wished for this outcome. "All will be well, and all manner of things will be well." (by Julian of Norwich)
ReplyDeleteSending prayers for everyone involved. I wish you all the best on this endeavor. Stay well.
ReplyDeleteWishing you all the best in this. Stay strong and don't get down on yourself - easier said than done, I know. Please update us as you can.
ReplyDeleteCongratulations to you from someone you've never met, who reads your blog daily, thinks of you often and wishes the very, very, very best for you. I'm a firm believer that things happen for a reason. So, just possibly, it could be that the first kidney wasn't meant for you. But the next one will be!! My heart is beating with excitement for you! With love,
ReplyDeleteKathy Barrick
Prayers for you, prayers for the family who will hopefully have their grief lifted knowing they helped another live. Linda G
ReplyDeletePS - they may hook you up with CaringBridge.org
ReplyDeleteI am so excited for you. I just asked God to make it happen
ReplyDeletewith the right kidney and complete healing of your body.
You have no idea how many of us love you from afar and will be praying every day. YOU GOT THIS!
Thoughts and prayers to you, Coni, and to the donor and their family. God bless all of you, and the nurses and doctors, and your team.
ReplyDeletePrayers for you and for your potential donor, Coni. Prayers for your transplant surgical and care teams too.
ReplyDeleteConi, you are in my thoughts and prayers. My prayers also include your donor and their family. May the Lord's arms provide peace and comfort to all involved.
ReplyDeleteConi, things happen when they are supposed to and how they are supposed to. I am a firm believer. When this is in your rear view mirror you will be able to see the trees and the whole forest. Prayers for you and JB and the potential donor. Feel grief for the donor but not guilt. People who volunteer to donate their organs do so because they want to or their families do so in their grief to help another soul and know their loved one would want it. Pack your bags, you will be on a higher alert and not get slammed again. You GOT this!
ReplyDeleteSo as soon as I read say a prayer, I did for you. Then returned to reading and now am praying for your donor and donor family....there is infinite room for prayers so I'll continue including you...so there :)
ReplyDeleteI will most certainly pray for your future donor and all who love them. I am praying for You dear one
ReplyDeleteGreat news. Hopeful and praying for you and your donor. Best wishes!
ReplyDeleteOh wow! I will be sending thoughts of care and love to your kidney donor and their family and love and care to you. You are an amazing woman. Pack, double check, and ge ready.
ReplyDeletePraying and hoping you get a kidney and that the donor rests in peace knowing they left a part of themselves alive with their generous gift! Take Stewey with you!
ReplyDeleteRuth in Oxnard CA.
Hugs and prayers kiddo!
ReplyDeleteHugs and prayers from Virginia as well!
ReplyDeletePrayers for all the amazing people who will be involved in this "God-and-man-made miracle". Amazing! I'm thrilled that you now KNOW your long wait is nearly over.
ReplyDeleteJust wrap yourself in Heavenly serenity and rest in His loving
ReplyDeletewill..it will be done. Do your Ms.Efficient preparations and
await the call in calm and hope. You are surrounded in prayers
and faithful support throughout, dear one. You will be so elated that cheesecake will hold no lure.....you will be the
cheesecake, right JB? Go with God.
Wishing you the very best. Prayers for you and your donor.
ReplyDeleteSending prayers and love to you, your surgical team, your donor and his or her family. God has a plan and his will be done.
ReplyDeleteI was hoping I’d get to the end and you’d say it was a bad dream. Maybe that would have been worse. Just keep taking things one day at a time. Losing weight is terribly difficult, but you have a great team on your side to help you. Prayers, definitely. And someone earlier mentioned caringbridge.org; might I suggest you set up an account (it’s not hard and anyone can do it at any time). You can set it up so Rich can also write updates. (I know this because I had an account for my late husband for over 7 years and set it up so he, along with myself and our two daughters could post updates. It’s easy and completely private—no one can Google your name and find your page—so it’s a great way to keep people updated without using email or even your blog.)
ReplyDeleteI'm going to pray for you and the new kidney and go ahead and welcome you to Indianapolis, the most covid restricted county in the state of Indiana. Make sure you pack plenty of masks. Don't expect to go out to eat (after you are done in the hospital) DOn't go outside without a mask - you literally could be arrested. We are somewhere between stage and 3, more towards 2. NO offensive but the hospital may or may not allows any visitors. It is simply the way it is here in Indy. Though I Know some awful cheaters who continue to say they are being safe while breaking all the rules. If you need/want a stitching buddy, holler. There are several who probably would show up - all safe folks I promise. Welcome to Indy - still a great city despite covid. You'll be in good hands. I can give you some parking tips too for the IU Hospital parking garage. MY mom was there for quite awhile with kidney cancer - I learned quickly where things were. Don't forget to pack your stitching.
ReplyDeleteYou will do great honor to the donor because you will take great care of their gift, and fulfill their selfless final wish to give others life.
ReplyDeletePrayers to you my dear brave Spinster! You are on several prayer lists already and needless to say on my personal prayer list every day. Keep us posted! You WILL get your kidney...I feel certain of it...luv, m
ReplyDeleteHang in there Coni you can do this!! You have been through so much to get here, so I'm wishing you all the luck in the world that it happens soon and then you can have a wonderful start to 2021 !!
ReplyDeleteDear Coni, your donor will certainly be at peace, knowing that a part of them is not only living on, but enabling you to do the same. I look forward to being able to rejoice for, and with, both of you.
ReplyDeleteConi, all of the preceding comments say everything that i could. The donor, you and your family are in my prayers. God is GOOD. You will be fabulous and your donor will live on through you. I look forward to the wonderful news!
ReplyDeleteOh my goodness, I'm so excited for you! All are in my prayers.
ReplyDeleteOh no! - so close, yet so far. When I got to the part about being told no, I felt like I was kicked in the stomach, I can't imagine how you felt. But as you say, the good is now you are at the top of the list. Also good is that you can purposely start to gather (or at least make a list) what you need to take instead of frantically throwing things in a bag. Sending you good thoughts that all will be sorted soon...
ReplyDeleteSuch wonderful news.Sending you happy thoughts, calming thoughts and serenity to you. It is just downhill from here. Just take it one day at a time and I know your day will be here. You will make your donor proud.
ReplyDeleteHugs to you!
I am thrilled for you. I csnnot say more now. My thoughts will be with you.
ReplyDeleteMy dear, prayers to both you and the donor. Perhaps it was meant to be this way, and all will be well in the end. I'm just so thankful it's going to happen for you. Our God is an awesome God and will see you through. You are not alone.
ReplyDeleteMany prayers are being offered for all.
ReplyDeleteConi you are going to do just fine and the prayers will continue.
What an incredible update! I have been praying for you daily that you'd get this news. In such a difficult stressful year, this is a wonderful bright spot. I'm so thrilled for you that you're now at the top of the list and a call will be coming sooner. I know you feel embarrassed that you couldn't go ahead with this one, but you're doing all you can and now you have a bit more time to prepare. You and the donor's family will be in my prayers. Take care.
ReplyDeleteMary
Every one of these replies is thoughtful and supportive. Ditto to all of them. I'm confident that you're much motivated to lose that last bit, that your synapses are firing, and that you WILL be ready. You really are almost there. Chew slowly and thoughtfully, and trust that you're being given the strength to do whatever you need to do.
ReplyDeleteThis is tremendous news! All my fingers and toes are crossed for you.
ReplyDeleteSo pleased for you to be at the top of the transplant list! Sending much love xx
ReplyDeleteI'm so happy for you! Top of the list! Woohoo!!!
ReplyDeleteOh my goodness - I missed this post! Like WHAAAAT! So any time now and the waiting game begins. Lots of good wishes and peace for you and the donor's family. xxx
ReplyDelete