So here I am on the One Kidney side. Where I’ll always be. Me and Michael, One Kidney each. We’re not the first “couple” to exist like this; we won’t be the last. I’m guessing our road was a little different than most people, getting to this point. A few detours and stop signs others perhaps didn’t have to face. I’m just glad we got here.
I’ve told everyone the story of how we got Michael to this place. How we were turned down by one hospital network, which forced us to start dialysis. The training, the time, the tubing, so that we could administer over 400 dialysis sessions at home to him. Mike and I as Nurse and Assistant, roles that we never expected to have to master. 2+ years on that regimen, the last year of which we were applying to a new hospital network, hoping they would agree to perform a transplant. Hoping I would be considered a viable donor. They did… and I was.
So 2 weeks ago, I got up at the asscrack of dawn, said goodbye to my 11 year old daughter and my parents (who had driven in to watch said daughter) and drove with Mike and Michael to check in for the surgery. My sister in law, Lisa, met us in the dark at the check in area. She had agreed to be “my person” in the recovery area.
Let me sidenote here that because this wasn’t an emergency situation, but rather a scheduled event, I was on top of organizing and categorizing and finalizing all of the parts of this. Food was bought and prepped, the dogs were boarded for the first few days, the house was clean, and people had their assignments. Good, kind, caring people asked for roles and helped out.
Mike was obviously Michael’s full-on, everything person (more on him later); my parents were there to make sure Riley had an adult in the house and a ride to school every morning; Lisa was my person in the recovery area because I wanted to have a familiar face near me through all of recovery until I got to a room and was comfortable being alone; my friend Becky and her daughter were Riley’s distraction during the day of the surgery and her ride to the hospital after Michael and I were situated; either my parents or Becky were to be my ride home depending on what time of day I was released that week; my friend Kris was Riley’s ride home from school every day until we didn’t need her any more (and 2 backups if she wasn’t available). I also had people asking to bring food, and more prayer warriors and happy thoughts ambassadors than a person has a right to.
So there we were, making small talk, when they called me to go back. I kissed Mike and Michael goodbye, and Lisa and I went back for the prep part of the surgery. Into my gown and non-slip socks, under the sheet. Computerized check in with a nurse named Ryan (I thought that was a lucky sign), a consult with the anesthesia team who were so impressed with my health history and lack of medications that they referred to me as a Unicorn, 2 IV’s started, a dose of something to start the sedation… and I was wheeled off to the OR. I remember it was cold, I remember I was trying to say the Lord’s Prayer and kept having to restart… and then I remember waking up and being confused that I was in the ICU.
In my mind I had expected that Michael would possibly end up in the ICU because he had a whole lot of issues that could land him there. Uncontrolled seizures, the fact that he’d had a very invasive procedure 10 weeks prior, just him in general, really… but no. It was me in the ICU. Apparently when they were disconnecting my kidney, they cut a vein that decided to split and before they could get the bleeding controlled, I had lost enough blood that they wanted me monitored at least overnight in the ICU. If my Hemoglobin level didn’t rebound in a comfortable amount of time, I was going to be given a unit of blood. So, kind of scary, but not life threatening, assuming the bleed really was contained and my body remembered how to produce red blood cells in a timely manner.
The biggest downside to this is that they don’t allow children to visit in the ICU. So the news had to be broken to Riley that she wouldn’t be allowed to visit me until after I’d been released to a regular room. Between the pain meds, the anesthesia, and the loss of blood, I was very out of touch with most everything going on around me. I vaguely remember seeing people who were allowed to see me… I can see Mike telling me I was in ICU and me asking WHY? and my sister in law standing to the side… but I don’t remember much else. My parents were there, Ashley was there, but I don’t remember seeing them that day. I do remember thinking, when I heard Riley couldn’t come up, “Oh this is not how this was supposed to play out… she’s going to be upset.”
And she was. And she had every right to be. Later that night she FaceTimed me on the phone. And she was bawling. I felt so bad. I tried to say the right things, but honest to Pete I can’t remember what I even said. I should probably ask Lisa but I’m kind of worried I wasn’t on top of my Mom Game at that moment…. I do remember telling her to call Dad to check on Michael and she did. And that later that night she called back when she was going to bed to tell me goodnight and I sang her the song I’ve sung to her every night since the day she was born. It was ragged, but there it was. I’m guessing that was both the best, and the worst, thing I could do. She nodded, and I could tell she was about to cry again but she sucked it in and said Good Night before hanging up. I’m sorry, baby girl.
The rest of the ICU night was a barrage of testing and monitoring. Lisa unpacked her overnight bag and wanted to stay with me. I had only planned on her staying with me until I got to a room and not stay overnight. But of course, I assumed that was going to be in a regular room with nothing to be concerned about except pain management. The ICU contingency kind of threw me, and I was actually very grateful to have her there. She was so helpful and caring. And I know she couldn’t have slept for diddly with the nurse and lab crew coming in every so often, and the blood pressure cuff wheezing and dinging every 15 minutes.
Speaking of blood pressure… for a period of 4-6 hours my BP was consistently in the 80s over 50s/60’s range. I’m usually a 110s/70’s girl. Early on when it dropped to that lower range, Lisa went to ask the ICU nurse. And the nurse basically said she knew how to do her job. If I’d had more energy, and any idea how to coordinate my hands and feet, and wasn’t connected to that pesky catheter tube, I might have come out there to smack that lady. A few hours later when the nurse was fixing something on the monitor, I told her that I was glad Lisa she was there with me. She looked at me and nodded, but I have no idea if she cared. But I did. So Lisa, thank you.
At 7 in the morning there was the changing of the guard and a new nurse came on board who was so much nicer. Of all of my interactions with staff, that one grumpy ICU nurse was the only one that I cringe thinking back on.
After visiting with the transplant team, it was decided that I was stable enough to go to a regular room to recover since my BP was coming up and so were my Hemoglobin numbers. I called the transplant team a posse, cuz they all traveled in this big squad, just like on the TV medical shows. Oddly I asked the med student who I remembered from the previous week’s pre-surgery meeting, and the surgeon himself a couple of hours later, WHY was I in the ICU? WHAT exactly had happened? And they explained about the vein, etc, etc. (Mike told me later that day that I had already asked them right after the surgery why I was in the ICU… I told him I had zero memory of any of that… and who was he? Why was he in my room!? heh)
Later they made me do some PT and walk around the nurses’s desk. By then Ashley (it was her birthday!) and my parents and Becky had come to visit me. I complied with the PT, especially after he said I could put on underwear! And wear some scrubs pants he’d bring for me, loose and comfy! And in my underwear!
By that afternoon I’d been released to a regular room which was right down the hall from Michael’s room. I asked to be wheeled to his room. So we stopped at my room to drop off my personal belongings, and then went over to his room. I hadn’t seen him since the surgery and my kidney was all “hey, where’s my twin?” so off we went for the reunion.
It was so good to see him, but he was pretty out of it. He was still catheterized and I could see he was producing a lot of urine, although it was still tinged with blood. He hadn’t been released from his liquid only diet, nor had I, so we didn’t know how his appetite would be. He was thirsty, though, so that was good.
That room became the “meeting room” and family who visited came in there. Becky brought Riley up and I was so happy to see her, even if she looked nervous as a rabbit. We all had a fine time visiting and chatting. One by one they left, including my sister and her husband, then Lisa and my brother who had volunteered to stay overnight with me the 2nd night. But I was fine. I was siting up in the chair, I had walked around, I was going to a regular room. So I bid them farewell, and Mike walked me back to my room.
And here the bottom dropped out. As I tried to get into the bed, pains wracked my body. Everywhere in my abdomen was horrible, searing pain. I couldn’t lean down, I couldn’t lie down, I couldn’t GET down. I could only cry… total sobbing, bawling… trying to find a position of comfort that didn’t exist. Mike called the nurse and my pain pills were brought in. I’d been taking them every 6 hours, but apparently there was a notation that if I’d needed anything between the 6, I could get a lower, supplemental dose. If this had been communicated to me, I didn’t remember it. So I’d never utilized it. And now I was officially behind on managing the pain.
Before anyone questions how bad was this pain, really? Let me say that I have given birth to 3 children, all of them at least at a dilation of 4 and a pain level of 7 before I got my epidural… and with one of them, I never GOT an epidural. I never got ANY pain meds. That’s right, I delivered my first baby completely naturally… including a 45 minute stuck in the chute pushing time that had me screaming at Mike (just once, but I did holler at him pretty good)… so I’m familiar with pain. And that few moments standing by that bed, maneuvering, moving, writhing, was as painful if not more so, than my time in transition delivering that all natural baby. Except this time, I didn’t holler at Mike, I just cried, and apologized for crying because he looked so worried and he had enough to worry about.
But the meds kicked in, and I was able to rest, and I stayed on top of the pain meds, and I felt much better. The pain management team, the surgeon, the pharmacist, all came in at different times to check on me to make sure I was aware of my options. And to talk about poop. Cuz hospitals always want you to poop. But pooping is hard when they do everything they can to make your poop hard! Anesthesia, surgery, and pain meds each have a constipating effect. Throw all 3 together and your lower GI tract becomes a play doh factory left under the couch last month by a careless 3 year old.
At some point a little bit moved through and that was good enough. It was up to me whether I wanted to go home that day, or hang out and go home on Thursday. Well… it WAS my birthday, so I opted to go home that day. It was too late in the day for my parents to make the drive, so Becky came to drive me home. Every bump and hole in the road, she’d say “sorry!” knowing that I was feeling every bump and hole in the road.
Delivered to my house, I got set up in my bedroom that Riley had decorated with a Happy Birthday banner, ribbon, and gifts. Add in the hospital flowers and other birthday gifts, and it was a lovely place to recuperate. My mom took care of the house and meals, bringing me food as I needed it. She ended up staying for 2 weeks, and I was very grateful for her being there to help out with all of the things. I’ve already apologized for being grumpy early on, and for having dogs that require diapers.
Riley would hang out with me after school, having me check her homework and turning on the TV. I slept a lot, and ate only enough to feel like I was eating something. Nothing tasted good, plus I was keeping on top of the pain meds so that I wouldn’t have to ever experience a Tuesday night again, and those affected both the taste of food, and my energy levels in wanting to eat.
On Friday Michael was released to come home. All of his numbers were coming into range. The catheter was out and the urine was flowing like a champ (this will actually regulate a bit after they remove the stent they put in, which is good to hear!) That kidney (that “beautiful kidney” per one of the transplant surgeons when reporting to those in the waiting room during the surgery) was doing all it had ever done for me, but now it was doing it for him. This was how it was supposed to work!
His medicine regimen was bumping up to crazy amounts, however. Going into the surgery he had been on 22-26 pills a day, most of them fairly small. After the surgery, he was taking 42 pills a day, many of them large and one of them grossly stinky. Plus a liquid that was squirted into his mouth 4 times a day to prevent thrush. It was a lot, but he swallowed them all, downing bazillions of containers of applesauce in the process.
Also Friday my son Ryan and his wife Raye came to visit. Ryan likes to cook so he made chili and cornbread, homemade pizza crust for pizza and breadsticks, while he was there. They took Riley to a movie Saturday night. I mostly slept and tried to eat. And felt foggier and foggier.
By Friday night, I didn’t like the way I was feeling, so instead of taking the pain meds every 6 hours, I took them when I woke up, not setting an alarm to keep me on schedule, and stretched out the intervals between pills. I tested the pain, taking a pain pill only when the pain was really bad, and one to sleep. By Saturday I’d only had 2 pills instead of the 4. And the last pill I took was on that Sunday, 6 days post-op, at 4:45 a.m. I did not like the heavy foggy feeling that was taking over.
Ryan left to drive home about noon on Sunday, leaving Raye behind to hang out at the house and have some bonding time with Riley. Riley looooves her sister in law, so that seemed like a good fit for the week, provided everyone knew that I wasn’t going to be any entertainment whatsoever. By 1:00 I still was feeling so puny I told Mike to call the on-call nurse and let her know how badly I was feeling. My concern was that maybe the bleed had started and that’s why I was so light headed.
She told us to come to the UTSW ER and get a blood panel done. Of course you can’t just go the ER and get one thing done. You have to be admitted and IV’d and have an EKG done and THEN you get a blood panel, urinalysis, and some fluids. Blood panel showed my Hemoglobin had gone up 2 full points, so my body was repairing itself since the surgery, and I was not bleeding internally. Things showed I was slightly dehydrated so the fluids helped with that. Basically my body was just reacting to the pain meds, and probably the anesthesia as well.
That was that. No more meds for me. Not the pain meds, not the Tylenol they said I could take, not even the Rx for dizziness they gave me to fill. I just wanted the dizzy foggy feeling to go away. So I rested a lot, tried to eat more, drank as much water as I could drink without stretching my incisions, and over the next few days my head righted itself. My mom said it was a good thing Raye was there because she kept Riley entertained with games, while my mom stayed with Michael in his room the entire 4 hours we were gone (during which time Michael had his first bowel movement since the surgery–I was so jealous of the ease with which he pooped–and my poor mom dealt with that!) My trip to the ER was scary, but turned out to be nothing serious.
The rest of the week was fairly routine. Michael and I both had our post-op labs and follow up doctor appointments and were both considered to be ahead of schedule and doing great. Riley continued to sleep in my bed with me, in case I needed her to help with anything or go get anyone in the middle of the night. My mom was in the guest room, where she’d been with my dad the first few days, although he’d gone home to attend to some church business and was to come get my mom and drive her home whenever the time came. Raye was in Riley’s room. Mike was in the pullout chair/bed next to Michael every night.
And here I’ll side note to talk about Mike. Although he needs more than a side note. You people reading this who have commended me for donating a kidney to help Michael need to understand that my one body part, while crucial to the actual transplant, could never have succeeded without Mike. The care he takes of that boy, the many MANY moving parts that he keeps moving–from the meds to the cleanup to the dressing to the feeding to the bed changing to the doctors’ appointments and lab draws and scheduling to the conversations and follow up to the sleeping by his side (in hospital in a chair, leaning over onto the bed so he can rest his head but rouse at any movement by Michael; at home on the pullout chair that’s as comfortable as any hideabed type bed ever is) — he steps up and does SO MUCH. And this time basically alone in hospital because I couldn’t do the parts I usually do, and with my mom’s help at home because I couldn’t do the parts I usually do. All while keeping in contact with his office, and getting actual salaried work things accomplished. There are not enough words to describe how absolutely phenomenal he truly is.
And now I’m crying. Because real, live, whole love is tearfully beautiful.
During the mornings of that 2nd week I’d help Riley get her school stuff together, and make her lunch, then my mom and Raye would drive her to school… and witness the crazy antics of the morning drop off drivers! Then I’d nap and do some paperwork while Mike worked from the makeshift home office he’d set up on some boxes in Michael’s room, and Mom and Raye watched TV. I watch so little TV it’s weird, but who knew that these 2 would have so much TV watching in common? They joked that they were getting some bonding time as well. We’d all 4 meet for lunch, making sandwiches and getting caught up on how Michael was doing… was he eating? playing? sleeping okay? Yes to all. Afternoons I dozed, hung out on my phone, texting and following facebook, taking a short walk on the back patio, letting the dogs out, checking homework. Raye did some remote work for her 2 jobs. My mom did some quilting and crocheting for her church’s prayer ministry. Mike worked from his “home office.” Dinner was food and evenings were TV.
And speaking of dinners–my mom was gracious enough to cook while I was in hospital and the rest of the first week, Ryan cheffed while he was here, and so many generous people have dropped off or had dinners delivered. I am now to the point where I have enough energy to heat or reheat, but full dinner capabilities still elude me. So thanks to so many for the sustenance.
Friday evening Raye left to go home, and this morning my parents left. The house is empty, as Mike has Michael at one of his semi-weekly lab and doctor appointments. I’m alone for the first time in over 2 weeks. I’m tired, but have had enough energy to type this. I cooked myself an egg and toast because I got hungry in the middle of typing this. My bowels are finally regular which was a problem for over a week after I got home. I’ve never had much experience with constipation prior to this; I hope never to revisit it. My eyes are still blurry, which is something I’ll have checked soon because I don’t know if that’s anything that can be attributed to the surgery/anesthesia or if my eyes just decided now was the time in my aging life to get weaker. My brain feels slow, and I forget that I’ve asked things, or I forget that people have answered. Or at least I think I do… heh. But my mother said my “color is good” so there’s that.
It’s interesting how things come together in big events like these. I’m obviously a planner, so I had things set in place before it started, and I had expectations about how people would respond. I was right about some, and way off on others. People who texted all the time, others who checked in less frequently but regularly, others who waited and said they didn’t want to jump in too soon, some others I never heard from at all. Many showed their support in comments on FB when we posted how things had gone. There were even a couple of people who I hadn’t heard from in a long time who reached out to me by email and messenger. I thank everyone who reached out in any way, even in silent prayer, for every level of interaction. If you’ve been hesitant to check in, don’t be. I love hearing from everyone, and anyone, by phone, text, or email. And now that I’m showering daily, I’ll be happy to open the door if you care to stop by. Might want to text first. I shower daily, but the hours vary.