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One Week to Go.

Just a week from tomorrow Mike will be in surgery, God willing.

How can I talk about being deeply moved and wildly grateful and hope-fully excited while occasionally frozen by the seriousness and reality of major surgery? Let’s be honest; it’s going to be a full week ahead.

Mike is determined to eat all the good rare beef and runny eggs and maybe sushi that he can get in this week 🙂 Lifelong anti-rejection meds and the subsequent immunocompromised body will prohibit him from any raw or “undercooked” proteins for the rest of his life. It’s a small sacrifice, comparatively, of course. But food memories should be lovely.

On Wednesday we have the actual pre-op appointment. I have a list of questions to ask about post-op life. We know next to nothing. I think that’s by design, since most folks want to know what they need to know when they need to know it. Mike is one of those people, I suppose. I am not. So Wednesday to Cincinnati (about an hour south of us) for education and screening and whatever else they throw our way.

On Friday, we are scheduled to meet a generous and kind priest friend and pray Divine Mercy together, and he will communicate the sacrament of Anointing of the Sick to get Mike holistically prepared. Friday is also the anniversary of Mike’s baptism day, so hopefully he can renew his baptismal promises with our friend.

Yesterday I made a pile of freezable chicken things for dinners. I know we will have people here to help, and others who have offered to cook (wow!). But I also know at some point, whether in two weeks or two months, I will need to just open the freezer and not have to think, between caring for Mike’s recovery and my own work, what to cook for dinner that night.

Saturday Mike’s parents will drive to Dayton. They are generously giving us two weeks. The first will start with the Cincinnati stay, and then they come back to Dayton to Frankie and Benny have care. They aren’t “cat people”folks – this is love. My mom flies direct to Cincy on Sunday and I will pick her up en route to the hotel. We are all staying on the hospital campus the first night and then mom hangs in with me at a nearby air bnb – a much less costly solution, with a homey feel just when we need a break from hospital walls.

Since day one contributions to our gofundme and in person have been a great relief and gift to us. Mike will be out of work for as long as two months, if all goes smoothly.  Costs around the transplant, hospital, at-home medical post-op etc are far less daunting thanks to every person’s help. Without family here, it means so much to have friends and family who are taking good care of us from afar. Lately, I continue to tear up as folks we haven’t seen in years send love in this way, and friends who love us have been incredibly generous. Mike is so quiet about these things. But be assured he holds it all, like Mary, in his heart.

You have made this day possible. Your hopes, your calls and emails and cards and texts. Your phone calls to Mike in the wee hours of the misery of dialysis. Your willingness to listen to me as I sit on your couches among children and laundry. The SO MANY of you who filled out a form, or asked your doctors about potential donation, or who took blood tests and urine tests (!) and got turned down. Your constant, constant Prayers.

We know we have a couple of religious orders praying for Mike (it’s a perk to have an Aunt who’s a religious sister on our side 😉 ). We know family is praying. I know my mom, the noted novena-pray-er is hard at it.
WE NEED YOU too.

Please keep praying for peace, protection, and health for Mike and his donor… for clarity and precision and miracles for every person involved in ever step of the surgery, as for the team. You are our community and our hearts. We only ask as many prayers as you will share and ask for from others going forward. We are strengthened and fed by your gifts of presence, communication, and hope.

 

Quick Update: 10 Dialysis treatments left preop

TEN 10 dialysis treatments left pre-transplant!!!
Mike’s birthday is Saturday.
The Transplant is August 13th.
Lots of hope, excitement, nervousness, planning, prayers.
Thank you for hanging in there with us. Please feel free to keep reaching out to Mike with texts, calls, cards, humor, prayers, etc.
We love you.

***Transplant scheduled for August 13th. Pray for zero complications or changes ❤

As you likely know, three years ago, Mike was diagnosed with acute kidney failure and placed on dialysis mere months later. I watched him fill with toxins and nearly die.
Since then, he survives through technology, waking at 4:45 am three days/week so he can hook up to needles for a 4+ hour dialysis session. Two of those days he returns home and signs on for a full day of his full-time work (the third day is Saturday). “weekends” are of the past, as is “vacation,” and travel is cumbersome.

Two years ago, we first applied to be “on the list” at University of Cincinnati medical center. Because of internal administrative issues, the case was delayed far past the 3 month wait and it wasn’t until November that Mike was finally approved. We learned a year later that an impressive number of friends and relative strangers had made application to be a kidney donor for Mike, but none were a match. At that point, we decided to double-list and cast a wider net. Mike was assessed and finally listed at Ohio State University in Columbus. Our newer applicants shifted there, and though we were making some headway, we still had no official donor.

In February, we learned that a UC potential donor was a step closer. It’s a lengthy process. That donor travelled to Ohio for a full day education and workup day. Weeks ticked by afterwards. Follow-ups ensued.
I am not including much information here because the donor has a right to tell their own story, especially until surgery actually occurs.
(Like Aslan reminded Lucy. Someone else’s story to tell…) Of course, we are humbled and overwhelmed.

In the meantime, Mike updated all his medical releases: dental information, regular doctor visits, etc. And this entire time as we have hoped and grieved, as Mike has persevered without complaint (really.), and as time has gone by without a donor, we have been sustained by your prayers, and ours.
These years of steps forward (and sometimes back) have brought us to a new appreciation of the friends and family and virtual strangers who have supported us with phone calls and cards and random gifts and visits.

And now we have the first real huge step forward.
We have an approved donor.

I have zero words for this kind of generosity and life-gift.

So this step means we can work on scheduling a transplant. It looks like it may be in about three months or so. We will need your prayers between now and then, because three months is still a long time. We will need your support in any way you would like to help us, because we do not exist “alone” but we are physically alone.

But it’s beautiful news. It takes processing after three years of pain and two years of unmet hope.
And we will need you. I’m not sure for what besides lots of prayers still! But at some point, practical things like Marriott points and frequent flyer miles and funny cards and memes and food and … will come into play.

But not today. Today we rejoice that God provides. And we breathe and move on to the next step.

KidneyQuest 2018

I haven’t updated since November mostly because there has been little to tell.

Mike has been jumping all sorts of hoops for OSU, and is still not listed there. Some questions have arisen from old and otherwise-ruled-out diagnoses made on the road to the kidney failure diagnosis. OSU is significantly more meticulous about ruling those out for themselves than UC has been. So into this new year, Mike will continue to try getting on the list. He has another appointment and even.more.bloodwork (enough, already) on Friday the 12th.

We DID just find out that potential donors at OSU – once they have made certain cuts – are required to spend a long day in Columbus for assessment. this includes a CTC, meetings with surgeons, other docs, nurses, social worker, etc. It also includes education on the surgery itself and post-op information. In part, it is for the docs to “lay eyes on” the donor and be sure they look to be in good health, etc. Mostly, it is for the potential donor’s benefit, to educate and answer all their questions.
It may be the thing that keeps us from finding a live donor. There are many of our friends who live around the country who cannot manage a day or two in Ohio beyond the surgery time, and we completely understand. UC had told us all of this could be done elsewhere. OSU insists on it being done there. And since OSU is #35 in the top 100 kidney transplant centers in the US, and UC didn’t make the list, I’m guessing OSU is going to keep donors’ needs at the forefront, even if this is a road block for most.

We do know of a couple people who have jumped through the weekend-long urine sampling and overnight blood pressure tests for OSU. Whether they make it further or not, these are HEROIC measures to take for a friend. You are written in our hearts.

UC – despite their insistence that they’d get us connected to the network and follow up with potential donors etc – has not returned any phone calls. We were so hopeful after being reassured that they had new staffing and a new outlook. The proof is not there. Mike goes back Tuesday for a regular “on site” visit.

OH, and we also found out that Mike has extra antibodies he shouldn’t have, making him harder to match. Normally these antibodies show up in people who have had a transplant or transfusion, or have been pregnant. None apply. So – it’s just another “glitch” along the way.

SO. 2018. We still need a kidney for Mike. We still need help asking for one. We still need your love, support, and prayers. We still need notes and jokes and cards and phone calls and texts because- you all – this is rough.

We still. need. hope.

Latest Update 11/16

update 11/16: Transplant team met and have a few questions. One is based on an old diagnosis that keeps nagging us – made by a doc looking for answers and not realizing yet it was kidney failure. So we’re working to get a hematology appointment (been waiting 2 weeks and I finally am playing phone tag). Please keep this in your prayers, as we need the appointment made and over to finalize list decisions. Thank you! – Christine

These last updates have occurred less frequently than I had expected, not for lack of time but for lack of information.

We got a call recently asking Mike to come to UC to discuss an antibody issue. That was today’s visit. Turns out, Mike is producing a moderate level of a certain kind of antibodies. Nothing triggered, though they knew this a year ago (and we didn’t til now) b/c the #s are higher than usual but not “high.” Normally these kinds of antibodies present b/c of a previous blood transfusion, transplant, or pregnancy. None apply to Mike.

Finally, b/c many people have generously applied to donate but not matched, the team coordinator realised they should get on it, and talk to us. There is potential for pharmaceutical intervention, or even antibody match. It’s just…well… Harder.

So we will get some hematologic work done to look for possible autoimmune issues. And we were told to ask all willing parties to apply to the kidney exchange directly using Mike’s info which increases our luck of exchange (or even direct transplant.) There is more info in links I am including under the “how to donate” tab. (Asap)

If you have tried and heard nothing… If you got put on hold in the process somehow… We are SO sorry (and a little miffed). We have been told a significant change in staff and approach has already changed things in a year. We are also in the hands of a new coordinator who is *the*exchange contact, as well as the one responsible for antibody patients. She gives us a little more assurance that Mike’s case is being taken care of.

Thank you for your prayers, concerns, and spreading the word! Hopefully in this next round, including any files you who have been patiently waiting for a call etc, we will get this done! If you’d like to contact me in the middle day of donation inquiry, I’m happy to help. Zero expectation. Really.

Thanks for sharing… And for encouraging a generous person to Share Their Spare!

 ALSO A UC CINCINNATTI PLEA:
If you got far in the donor process at UC but missed a phone call or got frustrated with the bad communication…
They let that lady go and turned stuff around.
If you’re still willing to help Mike by sharing your spare kidney… Please connect with me. Or if YOU are that person who got far with no results… please call Becky Hardy at UC transplant directly: 513-584-0748

If you know of someone who got this far can you help me get them the message. S/he is still protected by anonymity. We do support everyone’s right to change their mind.

OSU, Columbus – New List News

News:

Most of you know that with the extreme difficulties in basic communication at University of Cincinnati, we have chosen to double-list at Ohio State University – Wexner Transplant Center in Columbus. Both are about an hour’s drive (without traffic) from Dayton. A  month ago we had an initial consult at OSU and liked what we saw. It’s ranked #35 in the country. It’s a much larger facility, performs about 5x the number of kidney transplants/year as UC, and is both updated (online donor assessment forms) and organized (we already are assigned to a surgeon and his team.)

What we did:
Yesterday we spend about 4 1/2 hours in consults. This included some basic medical stuff from Mike, including seventeen (that’s right, 17!!!) vials of blood drawn. We met for the longest time with the social worker, who does a full workup. We also met with the surgeon, surgeon’s assistant, nurse, and financial coordinator. In a couple of weeks, the entire case will go before the selection committee (which includes all these people) and we will get the official thumbs up. We anticipate no problems, based on already being listed at UC and having no significant issues in the past year.

What double listing is:
“The List” means TWO things. First, it means you are on a literal list (of sorts) with 1000s of other people who need a kidney. When it’s your time (often 3-5 years) you become eligible for a Cadaver kidney. Now, a cadaver kidney is better than no kidney. But with its need to be shipped and revived, and its higher risks of rejection, and shorter viability (up to 10 years) it’s not the best option by any means.  Cadaver donors are listed regionally first. So we would be on this cadaver donor list in both the Cincinnati and Columbus regions.

The Second thing this means is we have been cleared for transplant. That means we can find our own Live donor and schedule transplant (often in as little as 2 months with an approved donor!). Donor kidneys are live, viable, have less risk of rejection and require fewer lifetime meds. They also last much longer (20+ years). Also Mike would be eligible for the Kidney Exchange or Paired Kidney Donation. This is where two transplant patients have donors who are not a match for their loved one/friend, but are a match for the other patient. In this case, kidneys can be swapped (simultaneously) so everyone comes out ahead!

We need YOUR help:

We really need your help. You can do a couple of small things. You can list  this website on your social media (all social media places). You can link to the donor info website and form. You can educate yourself about kidney donation (The More You KNOW, right?) You can do that by reading through /watching the Gallery right on this website. [Your single kidney works for 2! It’s laparoscopic surgery! You’re out in 3 days! No lifetime meds! We pay for it all!]

A couple of medium things. You can tell people you know and people who know Mike that they could help save his life by sharing their spare kidney. I can send you info and info cards to place strategically at your church or small group or help you talk about kidney donation. You can find creative ways to get the message out there so it doesn’t only fall on us. You can call/write notes/ send cards/ pray/ make a video/ ….. to remind Mike he is valuable and loved and not alone.

A big thing. You can fill out the donor assessment form. You can consider sharing your spare kidney with Mike. You can change and save a life. FORM-scroll to purple button

What we Don’t Know:

We don’t know anything about anyone who calls, fills in a donor form, goes through blood/tissue testing, is approved for donation generally or for Mike. It is ALL CONFIDENTIAL. Because of this we cannot thank you for your gift and consideration unless you tell us you signed on. This also means we don’t know if six people have filled out that form or sixty people. We. Don’t. Know. After a year of hoping, it’s easy to get discouraged… this confidentiality is good! It protects all y’all! But it keeps us entirely in the dark.

So we wait on the official ok at OSU.
We wait on a kidney donor.
We wait on mercy and we wait on strength to continue on.

Thank you for your help. Your prayers. Your support. Your encouraging Mike who makes a decision three days a week to get out of the house at 5:15am and be hooked up by needles into a machine to stay alive. Please help us get the word out. Please prayerfully consider kidney donation.

INFO AND DONOR ASSESSMENT FORM