Twice as nice

Navigating a chronic disease is always challenging. Early in the diagnosis, you don’t know enough to know what questions to ask. I have found this especially true when starting the process of being on a kidney transplant list. All I have to do is go through the checklist of shots, tests and appointments and I’m ready right? Well, sort of.

When I became eligible to be on the waiting list for a kidney, some of the criteria had changed, and I frankly found it really confusing. So I let it go, and hoped for the best; hoped for a kidney to magically show up one day.

I’ve been on the waiting list in Minnesota for four years. It’s important for me to emphasize that I’m on a list in Minnesota, because while I have access to a national database of donor kidneys, part of the criteria for getting a cadaver kidney is location. There are 58 local donor service areas and 11 regions that are used for U.S. organ allocation. How close am I to the donor kidney? I didn’t really understand that as well in the beginning of this process as I do now. So being on the list for four years has made me impatient, especially since I almost got a kidney a few years ago.

A new idea popped up one day while talking with my insurance provider. Every few months I get a call asking if everything is going ok with dialysis and my insurance and if I need any help with anything. I asked her about getting listed at the UW hospitals in Madison. That’s where my brother got his transplant, and they have a very good reputation. I thought getting listed there would be a way to expand my opportunities for getting a kidney. The insurance lady was very helpful, and she got member services on the line with us right away. The member services lady said, yeah, that would be an option and would be covered by insurance. Then she suggested that I might want to get listed at University of Iowa Hospitals and Clinics as well, they’re about as far away from Minneapolis as Madison. What a good idea!

But what is the process? Since I’ve been approved to be on a waiting list at Abbot Northwestern Hospital, isn’t it a given that I could then be approved at any hospital? I had just gotten a colonoscopy and had my annual stress test, both requirements for being on the waiting list. Good lord, please don’t make me do those tests again! And every month I have bloodwork done at my local dialysis clinic. My veins can only take so many pokes. What information can be transferred, and what tests will have to be redone?

So I made a few phone calls and had to leave a message in Madison, but was able to speak to someone in Iowa right away. They started asking questions and getting medical information from me on the very first phone call. Eventually, a site visit in Iowa was scheduled for January 2nd. What a way to start the new year! I booked a hotel with a free breakfast buffet (because WAFFLE MACHINE!) and made plans for the trip.

The University of Iowa Hospitals and Clinics (UIHC)  require that someone always accompany me to appointments, so I asked my caregiver/companion David to accompany me. The week before the Iowa trip, we spent some fun time in Chicago, so I booked a lot of miles on my car during that time period! In fact I got home from Chicago on December 30th, and left for Iowa on the 2nd! My cats were really confused.

On New Year’s Day, David came over to my house to help pack the car for the trip. The first thing he said when coming into the house is “Bad news…I’m getting sick.” Eek! Well, David’s a trouper, and we couldn’t cancel the trip at such a late date. I had waited for weeks for this to happen. So we packed up the car with my dialysis machine, all my supplies and our suitcases and hit the road. Oh, did I mention that we were experiencing record low temperatures? Well below zero and windy!

When we arrived at the hotel (which shall remain unnamed but the initials are HI and the first word rhymes with crampton), all I wanted to do was get unpacked and relax from the long, monotonous drive. I checked in and got the room key. Got into the room, and I swear I could see my breath! Hey, it was something like 30 below outside, but shouldn’t it be warm and toasty in here? I looked at the thermostat: 55 degrees! I kid you not. And it was set on “Cold” instead of heat. It was blasting cold air into the room like it was hotter than July. Poor David already had the chills! I pushed the lever over to “heat” and cranked it up to 80. Then I went back downstairs complained to the guy at the front desk. “I’m so sorry that happened” (shrug) was all I got. Hmmmph. Luckily there was a coffee/tea bar to get something hot upstairs to my sick guy. Some nice herbal tea with some lemon and honey should help.

The next morning my appointments started at 7:30, so we got to bed early. I was never so happy to have a king size bed…I slept way on the other side from David because I did not want to catch his cold.

The day at University of Iowa hospitals was filled with blood draws, (many vials!), a chest x-ray, an EKG, meetings with financial people, a social worker, an internist, a nephrologist, a surgeon and finally the transplant coordinator. Sooooo much information in one day! That’s why it’s important to have someone with me, because my brain was getting full. I did get a nice thick envelope of information to take home though, and overall I was very impressed with the facility. They really covered everything.

And it turns out that even though there were a few tests that had to be done, the results of many of my tests performed in the Twin Cities could be sent to Iowa. I didn’t have to repeat the stress test, the colonoscopy or the CT scan of my abdomen. Whew!

One of the things I learned about being listed somewhere else was that my wait time starts when my dialysis started. So while I’ve been on the list here in Minnesota for four years, and average wait times are 5-10 years, in Iowa I start at two years, because I started dialysis in November of 2015. There’s still a wait time of at least five years in Iowa. And because I have O+ blood, the wait could be longer. There are a lot of people with O blood who need kidneys and not enough kidneys.

In my conversations at UIHC, I discovered that Iowa is indeed a different region than Minnesota, and Wisconsin is in the same region as Minnesota, so it didn’t make sense for me to spend the time, money and energy to get listed at the UW hospitals. I feel lucky that I have the time, energy and resources to be listed in two different regions, increasing my chances at a cadaver kidney.

The good news is that I have been accepted to be on the transplant waiting list in Iowa. I am dual listed!

Of course the wait time would shorten considerably shorter if I found a living donor. If you or anyone you know is curious, you can find out more about the donation process by visiting my About page.

 

 

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