I’ve been meaning to write about this for ages, but kept getting sidetracked. Sorry, it’s kinda long….
Anyway, here goes….
Let me back up just a bit and give you some background. My husband Mark had been on dialysis for 2 1/2 years. It was a miserable experience for him and we’re grateful he didn’t have to undergo this any longer. Some people live on dialysis for decades. Mark was doing peritoneal dialysis at home and had to be hooked up to a “cycler” for 9 hours overnight. If he turned over there was a loud alarm and sometimes he woke up, sometimes he didn’t. At times the cycler would malfunction so he had to call the toll-free number and get help. It was a very frustrating experience.
Thank heaven we were members of a support group that was so helpful. The members talked about going to other cities for transplants, as the waiting list in San Diego was seven to ten years. During Mark’s last evaluation, the doctor noticed he was struggling to get off the exam table. So she ordered a “fitness test” which consisted of walking 400 meters in a short amount of time. That was a big red flag for me. It felt like they were trying to disqualify my husband. He passed the test, but would he make it the next year? It was getting harder and harder for him to do long walks.
At the dialysis center, our social worker told us she knew of patients who went to the Mayo Clinic in Phoenix, and they were in worse shape than Mark. I think we called Mayo pretty soon after that.
In November of 2019, we drove to Phoenix so Mark could undergo all the testing for a transplant. Let me tell you, it was no small feat fitting that cycler and all the accoutrements in the big van we rented. We made arrangements to have the boxes of dialysis solution shipped to our hotel, but we took a few boxes just in case. That’s the lightest I’ve ever packed.
The Mayo Clinic in Phoenix is pretty amazing. They take such good care of you! This was pre-pandemic, but we had to wear masks every time we entered the hospital. They had a big mask dispenser right outside the main doors.
We got word fairly quickly that Mark had passed all the tests, but we never imagined we’d get the call so soon. We figured on maybe six months of wait time.
Five weeks later, Christmas Morning 2019….
Around 3 a.m. I heard Mark yelling (I was sleeping in the guestroom after a few nights of too many alarms going off.) I was sound asleep, so woke up kinda dazed. He said Mayo was on the phone and they had a kidney! We couldn’t believe it!
The conversation went a little like this:
Mayo: “We have a kidney for you.”
Us: But it’s Christmas morning! We have people coming!! And we have all this food! (She must have thought we were nuts. Or maybe she hears all kinds of stuff haha.)
Mayo: It’s a really good kidney. I’ll give you half an hour to discuss it and if you pass on it, someone else will get this kidney.
She gave us the score for the kidney and I recognized that it was a really good number after going to a seminar at Mayo. Thank heaven I did, or we might have passed it up. And I’m so grateful she gave us that half hour because we were in a state of dazed, complete shock.
After we got off the phone with Mayo, our convo went a little like this:
Mark: I’m inclined to say no.
Carole: OK, it’s your decision, but I think it’s a really good number on the kidney.
Mark: Can we do this?
Carole: I think we can. We’ll have to call everyone and cancel Christmas dinner, but everyone will understand. We can open gifts after we get back from Phoenix. We’ll have to start packing now or we won’t get there in time. (Fortunately I had arranged for a pet sitter to come and take care of our cat Yuri, but I wasn’t about to call her at 4 a.m. on Christmas Day.) Our wonderful, amazing neighbor Bill agreed to take care of him for a couple of days until the pet sitter could come. He also put a lot of our food in our freezer.)
When Mayo called back, we were a bit more coherent. I asked what time we needed to be there, and she said around 1-2 p.m. It was now around 4 a.m. and I calculated it would take us around six hours, forgetting about the time change. (When we have daylight savings time in California we’re on the same time as Arizona, because they don’t do daylight savings. Daylight savings had already ended.)
It was surreal packing in the wee hours of the morning for at least a six-week stay. And to do it when you’re still half asleep is challenging. Luckily we were able to get into a casita right behind the hospital. It was only for patients being treated at the hospital and was much cheaper than a hotel. That turned out to be one of the best decisions ever.
We got to the hospital around 1 p.m. Arizona time. Let me tell you, if you need to get to a place quickly, Christmas Day is the day to do it. There was hardly any traffic! And no Highway Patrol! I may or may not have exceeded the speed limit a few times.
Once they found out Mark was a transplant patient, they whisked him away pronto.
I will never forget what Mark told the surgeon who asked him what he was in for. “Santa’s bringing me a brand-new kidney.”
The surgery started at 4 p.m. but I can’t remember how long it took.
Unfortunately, Mark had a hematoma that kept bleeding internally. He wasn’t able to even stand up after the surgery. His hemoglobin level kept falling, and he needed at least twelve blood transfusions. Not good for a transplant patient. I remember thinking, “Have we just made the worst mistake of our lives?” Mark would be OK one minute, and then his hemoglobin would drop and he wasn’t able to do anything. It was so frustrating. My husband was in the ICU at that point.
The hematoma kept bleeding, though. We learned that Mark’s new kidney was decapsulated. That meant it didn’t have a protective coating.
At one point Mark was hallucinating. He insisted that a monitor was a computer and he wanted to send an email. The doctor ordered the dialysis to stop immediately.
They had to do dialysis while we waited for the new kidney to work. This took several days to happen. So stressful! Finally the kidney started working and we thought we were home free.
A couple by the name of Bruce and Anna were in the same casita as us, and they pretty much saved my life. They were unbelievably caring and nice. Bruce and I would cook together because Anna was a transplant patient too. When Anna couldn’t keep food down she’d have to go back to the hospital. Meanwhile, Mark was struggling because of the low hemoglobin levels.
There was another woman named Marta who was in the same casita. Her daughters took turns caring for her because they lived in Texas. Marta was battling at least three different cancers. I was so inspired by her. Unfortunately, she passed away two months later.
Finally, after at least six weeks at the casita, we got cleared to go home. Unfortunately, Mark’s doctor told him to take a double dose of a diuretic. That was a major mistake because Mark had to urinate every half hour or so. I’m convinced it busted open his hematoma too. That was a REALLY long car ride.
Once we got home, Mark was feeling really bad the first night, so we called Mayo and they said to get to an ER immediately. Thank heaven we listened, because Mark was barely functioning. While at the ER, Mayo talked to the doctors who were treating Mark and it was decided that my husband would be airlifted back to the Mayo Clinic. I had to go home and pack for both of us (luckily we were close to the hospital.)
At first we were told I’d be able to go, but they took one look at my carryon and said no. So Mark left in a private plane from a small airfield. I had to book a flight the next day and rent a car in Phoenix. I was worried sick about Mark.
While Mayo was understanding enough, they wouldn’t believe us when we said he hadn’t fallen. So Mark had to endure a video camera 24/7. Mark also had to endure six more blood transfusions, and he was once again in the ICU.
Mark was released four days later, but we opted to stay in a hotel for a couple of nights, just in case. A day later we were told that the new kidney was fully functioning! Did you know that they don’t remove the existing kidneys, they just add the new one? It’s because of possible infection when they take out the old ones.
We both wrote letters to the family of the donor, but never heard back. We are so very grateful to be given such a tremendous gift.
Now Mark is doing really well, and we’ll be celebrating the five-year anniversary on Christmas Day, so it wasn’t the worst mistake of our lives after all.
Great weekend, everyone!
{carole}
Pearls & Prose 