It’s been 6 months since the transplant surgery. Has it only been 6 months? Has it already been 6 months? Have we come this far? Have we only come this far? My brain does this a lot because I realize this is one of those events in life that has become a Time Marker, like a marriage or a death. We will always think of things as Before the Transplant and After the Transplant.
People ask “How are you doing? How is Michael doing? How are y’all doing?” And I answer that I’m fine, he’s fine, we’re fine. Me overall better than him. But again, I’ve always been better than him. The transplant fixed his kidney problems; it didn’t fix everything else.
My post-surgery recovery was chronicled in a blog I did 2 weeks after the surgery. Those 2 weeks were rough, mostly due to trying to navigate the pain and the pain meds. My body is a bit volatile when processing any meds. “Might” make you sleepy? I’m dead to the world for 8 hours. “May” cause stomach upset? I’m nauseated and/or vomiting within a couple of hours. Anything with any form of “epi” in it causes my heart to race rapidly, as do most meds with even trace amounts of caffeine. I can’t even use nasal sprays because the drippage down the back of my throat immediately sends me wretching into the sink. So when people hear you’re having a medical procedure and make the joke about “hoping you get the good stuff” for pain management… I just internally shake my head knowing there is no “good stuff” for me. The best I can hope for is “won’t mess me up too badly”… and other than the brain fog, severe constipation, loss of appetite, and trip to the ER on Day 6 due to dehydration and lethargy, I was aces! But seriously: slightly hellish.
After that 2nd week when I was eating more, walking better, pooping regularly (never underestimate or scoff at the power of poop on your overall feeling of well being… it’s fo’ realz, yo) and interacting more normally, the house settled down. Mike was still working out of the house and would continue to do so for 4 more weeks. He drove Riley to school every morning and took care of Michael for the most part as I wasn’t able to lift more than 5 pounds which restricted me from helping to dress or bathe him. I helped with feeding him, and we were required to take his blood pressure and temperature which Mike did every evening at bedtime after he got Michael into his pajamas. Mike drove him to UTSW for blood draws and nephrology appointments twice a week for the first 4 weeks, which is a good 30+ minute drive each way. He kept track of an ever-changing assortment of medication for Michael.
We’ve always given Michael an array of meds 3 times a day. First thing in the morning, just after lunch, and at bedtime. Now we were adding in a collection of anti-rejection meds that had to be given every morning at 9:00 and every evening at 9:00. Suddenly 9:00 became a crucial clock-watching time. Keeping the anti rejection meds on an even keel in his body was critically important, they couldn’t stress that enough. They gave us a 30 minute window on either side–anytime between 8:30 and 9:30 was fine. But you cannot imagine how often we jerk our heads to the clock to see what time it is. Watching a TV show or playing a game… holy crap, what time is it? Evening Rangers games meant we packed his meds in the cooler. Clocks aren’t big at the ballpark, so the panicked What time is it?? caught us a couple of times. But we’ve never missed giving him his meds.
After the 4th week, I was able to drive again. So that got Mike off of school duty. And I was able to run a few errands, although my incision was still tender and I tired more easily than I liked. Doctor appointments and labs for Michael were reduced to once a week as his body stabilized and they got a handle on the right cocktail of meds to give him. All of his kidney function labs were perfect. He was peeing like a champ, and the kidney was doing everything it was supposed to be doing. He was eating well, drinking well, taking his meds well. Well!
At the 3 month mark, I went back in for another check. All of my labs were fine, as my body was adjusting to having only 1 kidney. They had warned me that my blood pressure (which had always run on the low side) would go up for awhile. Surgery is hard on a body and the trauma created makes a body work harder. We monitored it at home and it was indeed elevated for awhile. By the time I had that appointment, however, it was back down in the normal range. My kidney function numbers were in the normal range as well. All was well in One Kidney Land.
Michael’s numbers were so good that he was reduced to once a month lab draws and nephrology visits. Mike was back at work full time. I was maintaining my regular schedule of non-events. We started making our summer plans. Riley was able to have friends over again. Michael had a birthday and turned 28 He was back to attending his day-stay a few days a week, although I kept him home more often than I used to before the surgery. Because always, ALWAYS in the back of your mind is the possibility of infection….
Let me speak a bit about infection here. We were able to give Michael a new kidney, a new lease on life. In some transplant cases, it is literally the gift of life. But does a body understand that and embrace it? Does it celebrate that the diseased or missing organ has been replaced by a lovely, helpful, new one? Does it thank the new organ for wanting to make the body feel so much better? No! The human body refuses to believe it’s a gift. It refuses to believe it’s a good thing at all. It spends all of its time trying to reject this “gift.” Kicking, fighting, screaming get out get out get out!
And so the patient has to take medication to help the body accept the new body part, and stop fighting the intruder. A careful Goldilocks balance of medication because you want this to be juuuuust right. But in forcing the body to give up its fight against the new organ, it also gives up its stalwart fight against germs and viruses… and an organ recipient’s risk of getting an infection is much higher than people not on these drugs.
So we didn’t take Michael to crowded places if we could avoid them. I didn’t take him very often to his day stay because it has a fair number of people milling around (although to be honest, he doesn’t interact much with them, and he’s very disinclined to do germ-receptive things like opening doors or flushing toilets), but sometimes we had things to do and he needed somewhere safe to be taken care of, so he went. If we were in places that we felt it was warranted, we put a hygienic mask on him. At all of his visits to UTSW he was masked up. Because hospitals, ew!
And yet he still managed to spring a temperature at the end of June that caused him to vomit, and thus unable to keep his meds down. He had actually thrown up for no apparent reason way back in March. 4 weeks to the day after the transplant, the day I was first able to drive. He’d had a lab and nephrology visit that very morning. And yet that night he just started projectile vomiting while lying on his bed. So Mike had to drive him to UTSW for an ER visit and evaluation. They got him on some IV Zofran to stop the vomiting, and gave him his anti rejection meds. They monitored him for a bit to make sure nothing else was going on, and released him. We had hoped this time would be the same.
But this time he had a fever. And fevers usually indicate infection. And infections can get really complicated. So they admitted him. They identified a Urinary Tract Infection and said UTI’s were very common in kidney transplant patients in the first 6 months. They also identified a Rhinovirus which made NO sense (to me) as his nose wasn’t running at all and he had no congestion or anything Rhino-ish going on. But whatever.
It was June 30th that he was admitted. We had minor vacation plans for the 4th of July and major vacation plans for the week of July 10th. And we had no idea how long he would be in hospital. So there was much consternation and tearing up and bemoaning the potential loss of what would be our first real vacation without a dialysis machine in tow in 2-1/2 years. And yes, we all understood his health was the most important thing. And no, we weren’t going to jeopardize anything. And yes, we’re all AWARE THAT WE COULD TAKE ANOTHER VACATION ANOTHER TIME. Stop telling us these rational things. WE KNOW. But don’t tell us we weren’t perfectly justified in feeling disappointed and sad. We were.
He ended up staying in hospital for 3 days. Released the evening of July 3rd. So we canceled our minor 4th of July plan, wrapped Michael in bubble wrap and Lysol and hunkered down for a week and made it to the beautiful Florida beach as scheduled. In a car with a wonky air conditioner, but that’s a whine for another time.
Going to the beach for a vacation isn’t just something we like to do that Michael is forced to tag along for. Michael LOVES the beach. He can sit for hours on the shore digging his hands in the sand, while the waves wash over him. He splashes in the water and he enjoys walking into the gulf for a few minutes, when it’s time to rinse him off. This is a necessity as the waves that roll over him shove a lot of sand up his britches. His bathing suit netting holds about 5.4 pounds of soggy sand. So we walk him into waist deep water and shake his shorts until the majority is dislodged and returned to the gulf!
He was in a great mood while on vacation, although we watched him like a hawk while on that antibiotic. Antibiotics often mess up his GI tract. Luckily this one didn’t bother him. Or else our being proactive with the probiotics really did the trick! He ate well, slept great, played on the beach, sat next to me in a shaded lounger watching the waves. All the good things about a beach vacation.
Another month has gone by since then. More labs and nephrology visits for Michael. Everything still within normal range. I had my 6 month post surgery labs and nephrology appointment yesterday. Everything in the normal range for me, and my BP is hovering down near low again. Cuz that kidney is a beast I tells ya!
We live on the normal side now, it feels like, for as much as our normal ever is. School has started and Michael’s youngest sibling is now in middle school. We talk about preAP things, have violin practice to go along with piano lessons, worry about forgotten locker combinations. There have been volleyball camps, sleepovers, birthday parties. Mike and Riley have gotten back into their regular volunteering routine at the animal shelter. We’ve gone to 15 Rangers game as a family and have 4 or 5 more to go to before the season ends ( for comparison, we made it to 26 games as a family last year). We go to restaurants and zoos and shopping.
And then we have the other side, the side that reminds us why our normal won’t ever truly be normal. The doctor visits haven’t decreased as much as we’d hoped (fewer than the barrage that immediately followed the transplant, but more than he had before the surgery took place), and in the next few weeks we’ll be addressing another issue Michael is having that is unrelated to the kidney transplant. Something neurological (we think) that causes his legs to shake at random times causing him to fall. 2 sets of facial stitches later, we need answers! We are grateful to be out of the clutches of dialysis and the machine that controlled our lives for 2 years. But we know that returning to that beat down of a schedule is a possibility should the kidney ever fail, or be rejected by Michael’s body.
We take the days one at a time, grateful for the successes we’ve had, praying for the courage to face the unknowns that lie ahead.