In my August 3rd post, I mentioned D, a fellow kidney patient whose story is similar to mine. He was in need of a kidney and someone stepped forward to donate one. We’ll call her K. She was a direct match for D, just like Jason for me. Their transplant took place at California Pacific Medical Center at the end of last year.
D had offered that Jason, Linda and I meet up with both him and K to get some insight into their transplant experience. We gratefully accepted and had dinner together on the 16th of September at an Italian restaurant in San Mateo, home of what would turn out to be some of the tastiest petrale sole to grace these lips.
As we sat down, D relayed to us one of the most important pieces of advice: Make sure we ask for a morphine pump to help manage the post-surgical pain. They also suggested we ask for anti-anxiety and sleeping meds if we found them necessary. All good, sound advice.
A told us the surgical team offered that her nephrectomy, or surgical removal of her kidney, be conducted with a laparoscopic technique through her belly button, rather than the traditional open surgery. Laparoscopic surgery involves a tiny camera and a laser and no big knives. A said that the belly button option is less invasive and advised Jason to go for that.
A got into surgery around 5 am, with D waiting in the wings until she was almost done with the procedure before he was brought into an adjacent operating room a little before 9 am. He happened to see the surgeons take her removed kidney and wash it! Then, he was placed under general anesthesia.
After the transplant, one minor shock for D was the foley catheter attached to him. Someone must have failed to mention he would be getting one. This catheter is the one most people probably think of when they hear the word “catheter” - a tube which passes up the urethra into the bladder. It is uncomfortable, but it's also needed for draining urine and helping the bladder heal. It stayed in for the entirety of D's hospital stay, about 4 or 5 days. As for K, she stayed in the hospital for 3 days post-surgery, but she didn't need a catheter. Upon hearing this, Jason sighed in relief.
As part of D’s regimen of immunosuppressive, anti-rejection meds, he took a lot of steroids. They prescribed 120 mg of steroids at first, which led to the occasional ability to close his eyes and "see" what he described as "pulsing energy." The steroids also amped his appetite. He constantly ate and gained 30 pounds in a month. Now he's down to 5mg for the steroids, which means no more such vivid sightings.
Some other side-effects of the meds were difficulty sleeping because of all the extra energy, and some gastrointestinal issues. The meds also made him sweat a lot at night, while he lay in bed. Not something I’m looking forward to, but it’s good to know beforehand, so I can do my best to prep for it.
For both D and A, their recovery required them to take things easy for a while, as you would expect. They weren't allowed to lift anything heavy for six weeks.
D suggested I follow all of the doctor's orders. "Don't worry about rejection. Focus on getting through the first six months, and going to all your appointments. You'll need to drink lots of water, so set an alarm. Don't expect to go back to the life you had before. Try to eliminate stress."
Incidentally, when he says lots of water, he means LOTS of water...4 liters a day immediately after the surgery, continuing to this day!
A added, "It's really just the stuff we should all be doing, just more so."
D also wanted to make the point that "the health teams don't personally go through what the patients do.” In other words, they’re giving the care, but of course, can’t know how it’s being received, which can present challenges. He was speaking in particular about how a nurse was once removing his tubing a little more roughly than D was accustomed to, and so D told him, "Hey, I'm a real person here, can you slow down?" This helped the nurse take a moment and adjust his frantic pace.
As we wrapped up our conversation, an older woman, who'd been sitting at a table near us, approached A from behind.
"Excuse me, I wanted to tell you that your table was awfully loud. In the future, please be more respectful of others when you're in a public place. We had trouble enjoying our meal because of you." She started to walk out the door with her group.
I was stunned. Admittedly, our discussion had included some jokes and laughing, but there hadn’t been a real clamor. I shook my head but stayed quiet.
Jason wasn’t struck so dumbly, however. He piped up, "Well, you could've said something earlier, and not waited until you left!" I thought to myself, “Yeah!” The woman still looked indignant, but she didn't reply. As she exited, D chimed in, "Yeah, that's not problem-solving, that's just complaining." This was a good line, and I wrote it down in my notebook. If D had been like the restaurant lady when the nurse had been messing with his tubing, and he’d only spoken up after he’d left the hospital, what good would that have done?
In any case, this unexpected interruption almost spoiled the good vibes only moments before. Fortunately, as I asked if Linda could take a photo of our group (not for the blog, but for the sake of our personal memories) I mentioned that I thought that the lady had originally come up to A to congratulate us on our overwhelming and inspiring good-heartedness.
I told the group, “I imagined she was gonna say, ‘I couldn't help but overhear your wonderful story, and just wanted to congratulate you.’”
As it turned out, everyone else had half-expected this as well! We’d all anticipated a verbal commendation when instead, we got dressed down. So, we all had a big group laugh, and in the photo, we have huge smiles. Pretty funny. The whole thing made me think that people tend to live in their own bubbles, and not really hear what their neighbors are really discussing and as a result, can’t appreciate what they’re going through.
I feel fortunate to have been able to connect with A and D, two amazing people who have been through the surgery we’ll soon be undergoing, and do understand. Getting their first-hand accounts on their transplant experience helped Jason, Linda, and me in ways we couldn’t have anticipated. We can’t thank them enough for their generosity and time.