More days with Tito.

January 3rd, 2023

We didn’t see Tito over the holidays because he is isolating. He’s not going public with the actual surgery date, but things are progressing. Tito sent me an email yesterday that says it all better than I could. With his permission I’m posting it here. Riveting stuff. I’ll continue to post updates as they come.

Hi Jerry!

Thursday was a long day of testing and conversations with medical professionals. 

Some were very clear about who they were and what they were doing in the surgery and some seemed to be general people figuring out information for whoever would be performing that duty during the big event.

I met the surgeon that will be doing the surgery, the hospital I am going through is a teaching hospital ( I think this is great, doctors have to learn somewhere) but I guess the living donor surgery is quite intense so the surgeon will be performing the major duties and the resident will be observing and I hope they get to ask questions. I also hope they don’t learn about worst case scenarios with me on the table. 

I met one of the Nephrologists with the transplant team, will this one be my doctor after the surgery… Maybe?

There were some nurses that talked about what medication and foods to take before the surgery. There is a regimen of protein shakes I need to take starting several days before.

Some XRays, some bloodwork, and EKG. 

Some talk about what to expect and then sign a bunch of papers.

I guess the surgery is supposed to take about 3-4 hours, they will knock me out and put a tube down my throat (this happens after I am out, and they take it out before I am awake). There was mention of some testing of anti rejection medication and other medication that might induce an allergic reaction. Surgeon says this is a very convenient time to have an allergic reaction.

I am isolating since I need to take a covid test a few days before the procedure. This means lots of movies and trying to figure out what to eat, at the suggestion from a fellow flx wine aficionado I started a meal train, I have gotten a few gift cards for grubhub and doordash and a few people from far away have reached out to help. This seems like a nice service and with enough dedication and build up it has the potential to be very successful. 

Unfortunately this means I have to skip an event early in January that was originally set up as a way to help me find a kidney. This event is still happening since there is a blood donation factor to it and there are others still looking for a kidney donation. I hope to participate via zoom, we’ll see what happens.

The main thing the doctors wanted me to know is why we are doing a kidney donation instead of staying on dialysis forever. It turns out a kidney transplant and dialysis treatment do the same thing just in a different way. They both perform the functions of a healthier kidney than the ones I have. The difference, the transplant filters the blood 24/7, the dialysis machine only filters blood for 12 hours a week. This short time of filtering the blood is ok enough for cleaning but puts a lot of added stress on the heart and cardiovascular system, meaning patients on dialysis for a long time (10+ years) have a much much higher risk of having a stroke or other fatal incident. By much higher I mean the survival rate for people 10 years on Dialysis is 50%. Or half the people that have been on Dialysis for that long end up not alive at that mark. The transplant 10 year survival rate is 67%, so only a third end up dying instead of half. 

There is so much more I will be getting if this transplant goes well. Not only will I be getting a working kidney, and expectantly a better working body. I will also be getting 12+ hours a week of my life back. 12+ because the time after dialysis where all I can do is just sit there in silence for hours should count towards that missed time. 

That’s about it for now. 

Tito

December 18th, 2022:

I touched base with Tito today. Things are proceeding smoothly and he’s less stressed now that information is flowing better. Turns out the reason for the previous delays was that there wasn’t a flight early enough to get the donor’s kidney to Tito. National Kidney Registry had to charter a flight to make the timeline work. I’m pondering the logistics of moving kidneys around the U.S., at the whim of weather and airline schedules. It’s got to be a bit nerve-wracking for everyone involved, not least the couriers. I suppose when you’re in the business of kidneys there’s enough stress to go around.

Tito reports that, besides work and dialysis, he’s spending his time working on his new business, Discover FLX Wineries. He has nine confirmed dates for 2023, with speakers already lined up for six of them. The idea is to get as many details taken care of before surgery as possible. That way, when the time comes, he only has to “sell tickets and show up”.

One of Tito’s events happened today at Once Finger Lakes. Twenty people showed up to taste wines from New Vines, with commentary by Todd Eichas. Food pairings were supplied by chef Samantha Buyskes and Once. Amy and I are with family in PA, or there would have been twenty two. I know I’ve mentioned this before but, damn, it’s pretty impressive that Tito keeps at it, sort of an Energizer bunny that keeps moving no matter what. I’m sure keeping busy helps the hours go by, all except for those twelve hours of dialysis per week.

Stay tuned…

December 12, 2022:

Tito has a donor.

(Pause for dramatic effect, and to let the cheers subside.)

Tito has a donor, and the donor has a surgery date. The rest of the details are still a bit vague, with facts and rumors trickling in. Usually, the identity of the donor is protected unless they choose otherwise. Tito knows his donor, his Good Samaritan, and let’s leave it at that. The surgery date is about a month away and all is proceeding without incident. It’s just that Tito doesn’t know as much as he’d like, and quite possibly should, for someone that is a month away from life saving surgery. As you might expect, Tito is a bit stressed.

We had dinner with Tito at Kindred Fare a couple of nights ago. We hadn’t seen him in awhile and needed to catch up. He seemed a bit flustered and out of sorts, much of it stemming from having to fend off questions that he doesn’t have the answers to, from people who sometimes seem to know more than he does. His donor seems to get updates anywhere from a day to a week ahead of Tito. Surely this must be the result of the realities of planning two surgeries, plus air travel for a kidney, all within the confines of our new reality. But frustrating, yes, I can see it might be just a tad frustrating.

Once we got down to dinner, and the heart of our discussion, Tito seem to relax and we discussed our plans for a follow up post (this post), sort of a transplant blog, dealing with both the technicalities, the emotional strain, and the frustrations with red tape, that the whole experience entails. The format will be old style blog, something I haven’t attempted very often, and never for a prolonged period. The title, More Days with Tito, seems appropriate, and each new entry will be at the top of the page. Simple enough. I will try to make this more from the gut, but given my obsession with punctuation on even simple texts, I suppose I’ll at least use spell checker.

Timeline:

• Nov. 7th: the donor is informed they are approved.
• Nov. 8th: Tito is informed there is an approved donor.
• Nov. 22nd: Tito gets a tentative date for surgery.
• Nov. 23rd: The donor gets a confirmed date of surgery.
• Dec. 1: The donor’s surgery is scheduled.

Tito has not heard from his team since Nov. 22nd – he knows the donors information because the donor has shared it with him. As noted, this has added extra stress, since it seems at times that the donor, and therefore his family, know things that Tito himself is not sure of. Stressful indeed.

Follow Up: It’s Tuesday the 13th and Tito got word today of a schedule for pre-surgical work up. Still no details about the actual surgery, but it’s a relief to start having information flow again. Stay tuned…