Blog

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

OSU Visit- Update

The OSU visit went well. We have an appointment Sept 22nd to meet our surgeon and also meet with the entire team : docs, nurses, social worker, finance people, etc.

OSU performs 250+ kidney transplants a year. They are in the top 35 in the country. They also are far larger and more responsive than our experience at UC has been.

We are asking those who have been paused mid-donation to consider calling OSU and transferring your efforts there. We know it’s a lot to ask. We are confident it will help us get closer to transplantation SOONER. 800-293-8965

DONOR INFO

Please keep spreading the word. You can visit OSU and click the big purple “donor assessment form” button to take the first steps towards saving Mike’s life! THANK YOU!!!

(oh, if you call/apply be sure you’ve got the right name 🙂 MICHAEL DALESSIO)

In the meantime, feel free to read & pass along this awesome article about the great work being done by generous donors that willingly give life to strangers…
Give Life to a Stranger… Why you should too

 

Updates

Aug. 11th Mike has orientation at OSU to be listed there. From that point onward, we will be using the OSU donor assessment form, which can be found in column 1 on the home page. OSU has great success, and performs an average of 250 kidney transplants/ year and is listed in the top 35 hospitals in the US for this operation.

We are SO grateful to those who have tried but not gotten past the assessment forms, and for those who have gotten further but aren’t matches. All forms and testing is CONFIDENTIAL, so unless someone tells us, we never know that they tried. So this is the only way we can say Thank You to all those folks – we only know of about a dozen…. so far… we need a LOT more brave and generous souls 🙂

To this date we have no matches, but it’s a matter of getting the word OUT THERE and letting people know how to help – and for that we need as much help as we can get to spread the word on social media and by word of mouth.
If all our 100s of fb contacts would share something for a week, I think it could make a huge difference!
There are two potential Paired Kidney Donation (PKD) candidates. We are waiting on UC to let us know what’s next, and combining forces with OSU as of August 11.

Thank you for being part of “Mike’s army” – thank you for your support and prayers – thank you for hoping for us, and most of all for being our VOICE through social media and conversation, to help us find a healthy donor and potential match. I pray for Mike’s donor every day.

St. Marina, Protectress of Nephrology and Vanquisher of Demons, Pray for us. Amen.

***On August 12, fill out and send donor assessment forms to OSU transplant to see if you are a match – OR if you are not a match for him but still willing, you could become a Paired Kidney Donor and he will be assured a kidney when you donate! The form is here How to Donate

and more about Paired Kidney Donation is here What is Paired Donation? 5Way at OSU