Almost 12 Weeks!!!

Monday will mark 12 Weeks since transplant. Somewhere around eight weeks Mike and I turned to each other and agreed emphatically that less than two months had felt like six. We are so grateful for Rachel, the surgeons, the medical team, our family and friends.

Recovery is hard when it requires long drives back and forth twice a week and some additional trips for blood work and post op things. Clinic has officially decreased to once a week, and hopefully 2x month in the near future. They are keeping very diligent watch on weekly data. The surgical wound is very nearly completely healed, though the muscles are certain to take time.

Many of you have seen that we’ve gotten out of the house occasionally together- a joy! We aim for off-schedule times when cafes are less crowded, etc. Mike will always be immunocompromised. Our friends here have been so diligent about that we’ve had a hard time convincing them to visit 🙂 But Mike wants to*do* things. So even with 12 Weeks of approved disability time, he started easing back slowly PT over the last few weeks. His amazing supervisor has been supportive at every step. At first we were concerned about his ability to sit upright for so many hours. He is handling all of it like the man I know him to be, gracefully.

Things are still catching up to us. I am in the last throes of finishing a full dissertation draft. We are just now starting to process my dad’s death, on hold in a way so we could be strong for Mike’s life. Thank GOD for Mike’s job and disability pay, but things are tight with the decrease. Thank GOD we got a good renter in NJ who is happy to be there. Sometimes things have felt like just too much. Sometimes it gets lonely out here. Sometimes waiting for a call from the clinic is overwhelming. Mike stays calm. I panic. We hope together. We are stronger for all of your love and prayers.

“No dialysis” is a miracle. He’s sleeping. Not snoring. Not coughing. Not passing out from low blood pressure.
Every day is a miracle. Even with all the pills and blood tests and exhaustion … Also with the walking, and caring and compassion and … Life.

Updating from Home

Update: Mike is very tired from a strenuous post-op regimen and, of course, actual healing.
But his numbers are consistently good so far. We have 2x week visits to UC medical in Cincinnati for a few more weeks and if all is well, it will drop to 1x weekly.
He can only leave the house for hospital visits for a while, and no driving for four more weeks.
We appreciate your help and support, your prayers and love notes, meals and calls. This beautiful gift is also overwhelming, and most of you know a few other major circumstances weigh on us too.
Thank you for caring about and for us!

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.

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.