Looking Back and Looking Forward

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.

zzzzmichael

 

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Posted in Home Life | 1 Comment

Little Fan is a Big Fan

For a kid born in 2006, who became cognizant of baseball in 2010, and amazingly aware of baseball in 2011, being a Rangers baseball fan has been fun.  So fun that, when we realized she really REALLY understood and appreciated the game, she got to go to a World Series (or World Serious as she heard it and said it at the time) game.  Game 5 of 2011 that the Rangers won in Arlington, putting them up 3-2 in the Serious, sending them to St Louis… and that’s all we’ve got to say about that.

She’s a fan.  A fan of the game,  and of the pageantry, and of the ballpark, and of the players. She’s a fan who, at age 5 and 6, would scream at the TV to PULL THAT PITCHER OUT when there were too many players in the wrong jerseys standing on the infield.  And who understood enough just a couple of years later to cackle seeing the opposing team warming up a pitcher in the bullpen in the 2nd inning.  Batting averages, ERA’s, foul pole dinging, why you don’t attempt to bunt with 2 strikes, pitch count relevance, she understands so much more than I ever did at that age. Knowledge that impressed some people, while drawing blank stares from others.  A random man seated next to her at the ballpark a few seasons ago tried to chat her up about the game, and his early chuckling at the shy 9 year old girl child who answered with the standard “Adrian Beltre” as to who her favorite player was, grew to being more impressed as she gradually revealed that Mitch Moreland was who she’d like to meet because he seemed like the nicest player (almost as nice as David Murphy had seemed) BUT that while Moreland hit a lot of home runs, it was not as many as Josh Hamilton had. That Michael Young was her favorite Ranger of all time (“all time” being relative to a kid born in ’06).  That she was interested to see how the new pitchers, Dyson and Diekman, would do.  And that Delino DeShields was super fast, even faster than Craig Gentry and she called Gentry Speedy.  Craig Gentry? the man asked… didn’t she know he wasn’t with the Rangers?  Yeah she knew.  He went to the A’s, she said, but he’s on the DL right now.

She knew how to read players’ names before she was reading much of anything. But she really didn’t need to read their names because she could tell by their batting stance who was at the plate when she walked into the room and looked at the TV.  She cried for a Michael Young shirt “just like Daddy’s” forcing me to go and buy some iron-on letters and the number 10 to put on the back of her red Rangers T-shirt because I couldn’t find an official Young shirt in her size.  She knew Cruz and Hamilton could “hit it out of the park” and that Elvis and Beltre were so funny together, especially if Elvis touched Beltre’s head, but mostly when they raced to the edge of the infield grass just before the games started.  She led the “Nah-po-LEE” chant at the ballpark whenever he came to the plate, and cried full on tears in the back seat of my car when she heard the news that he’d gone to the Red Sox.

She’s been to 156 Rangers games in her short life as a fan.  Her 100th game earned her a spot in a TV interview with Jim Knox.  She was there when Beltre got his 400th career homerun, and again when he hit his 3000th career hit.  She swears she’ll be there to see him inducted at Cooperstown.  She has belted out the National Anthem louder than she probably was supposed to, at games when a singer behind home plate was doing the same into a microphone.  She refuses to leave after a winning game until she sees who gets the Powerade dumping.  She has eaten many times at a club that keeps changing names while watching the pregame show live, played in the kids’ zone, high fived Captain and the 6-Shooter girls as they have passed by,  run the bases, Taken the Field (and met Elvis!), been a Red mini Dot, put the X in Texas.  And she has enough promo items to start her own gift shop.

She’s a fan.  A fan of the game and the park, sure, but mostly the players.  It’s the players she grows attached to.  Their stories, their stats, their antics,  She’s been exposed to the Business Side of Baseball so often that you’d think she’d become immune to the pain of a player being traded, or DFA’d, or non-renewed, or however many ways a player can leave a team.  A parade of players who have left, most of their shirts never to be worn again by her.  Bye Young, Hamilton, Kinsler.  Bye Cruz, Napoli, Murphy.  Bye Lewis, Moreland, Darvish.

And now there are whispers of players that might leave if this season doesn’t go well, if we aren’t in contention.  Her brow furrows as the speculation swirls around Beltre, Hamels, Choo, Andrus.  Wait, what… Andrus?  Beltre???

Who will be left? she wondered aloud this morning, with just the right mix of sadness, frustration, and hope.  I reminded her that she’s seen some great plays and some great games, because of some great players.  And that, as those players left, new players arrived to evolve into new great players, and new favorites.  That true fans cheer their current team, while cherishing the memories of teams gone by.  That true fans survive the truly horrible seasons, seasons wracked with weak pitching, timely at-bats that don’t materialize, and injuries. True fans love their team, even when others turn their backs and declare them unlovable.  Because if you can’t be a fan in the bad times, you aren’t really a fan.   Ask this little fan, she’ll tell you.

Posted in Home Life | 3 Comments

One Kidney Is O.K.

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.

 

 

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I Kidney You Not

Having kids brings about a myriad of changes: the good, the bad, the ugly, and the diapers. Kids will adore you, and entertain you, and cover you in unexpected, yet glorious, stickiness. They will challenge you, and frustrate you, and suck the energy right out of you.  They will take over like kudzu, winding their way through your house, your calendar, your very heart beat.  And for the years you have children in your home, your primary concern revolves around their safety, their health, their happiness, and their growth… holding your breath, crossing your fingers, saying your prayers that you are doing all you can to help them down the right path as they mature out of your house into adulthood.

Sometimes you have a different kind of child, and your life changes in a different way.  The basics still run the same.  There still exist the good and bad and ugly and sticky and diapers and challenges and frustrations and exhaustion and messes and appointments and a heart skipping beats for that child.  And your primary concerns and prayers still revolve around their safety and health and happiness and growth… but you know the ending will be different for this child.   You know they will never mature enough to step out of your house into adulthood.

While that’s a big BIG difference, you accept that that’s just going to be your reality as a parent with this child.  You really don’t dwell on it because as a parent your focus is still on their safety and health and happiness and growth.  That child is still your child, living in your home, needing your time and attention and love.  They just get really big while doing it… and the calendar months keep flipping.

That’s where we are with Michael.  Our son who is 27… an adult, but not really.  Our son with a plethora of medical issues and complications.  Our son whose brain refuses to allow him to speak, whose body explodes with seizures, whose skin erupts with visible tumors, whose kidneys eventually betrayed him and failed completely.  Our son who has endured  medical procedures including surgeries, stitches and the casting of broken bones from seizure falls, and who currently endures weekly injections and 4 time a week dialysis sessions.  Our son is tough.

But our son has suffered a lot.

Now we have a chance to help ease some of that suffering.  After 24 visits to various labs, technicians, and specialists I have been cleared to donate one of my almost-53 year old kidneys to Michael.  After more than as many visits to various labs, technicians, specialists, and hospitals (including a surgery to remove both of his existing kidneys) Michael has been cleared to receive one of my kidneys.

UT-Southwestern has agreed to perform the donor surgery, which will take place on February 19th. By agreeing to take a healthy part of me and give it to Michael, UTSW is giving us a chance to make his quality of life much better.  To help rid his body of the toxins that build up so that we don’t have to hook him up with painful needles to a machine anymore.  So that he won’t feel nauseated and tired anymore.  So that he will enjoy food again.  And gain enough weight to look and feel healthy again.  To have enough energy to play again.

These are our hopes for Michael.  This is where our prayers have centered for a long, long time.  And while it is a fairly dramatic step to take (trust me, we’re all a little scared to death over here… the surgery is on MONDAY!!) this isn’t anything different than what anyone else would do for their child.  When your child needs something, you step up and do it: the doctors, the testing, the nursing, the time, the love… and in this case, the kidney.  And really, giving a kidney seems a small thing to do… when you remember they already have your heart.

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Searching For Normal and Unremarkable….

We are in the final countdown to the nephrectomy.  3 days to kidney removal. 3 days to surgery and a hospital stay and all the unknowns that all of that will bring.

How long Michael will be in hospital depends primarily,  they say,  on pain management.  Tricky for a kid (27 years old,  I know) who can’t tell us where it hurts, if it hurts, how much it hurts. I’ve told people that historically he has a high pain threshold, and that we are pretty good at reading his body language and visual cues. I pray both of those things are still true, come 3 days.

All of this is occurring during peak Christmas planning time.  I’ve been in overdrive getting gifts bought, the house decorated,  meals and activities planned.  Our House Elf continues to be active and the Advent Calendar is filled with the usual activities.   We did some of our traditional activities earlier than usual this year and some have been put on temporary hold while we navigate Michael’s surgery and recovery,  but we’re still planning to get them done. They’re still on my lists!

I keep plowing onward because I need to keep the things I can control on a normal trajectory.  It would be easy to throw up my ragged, chewed-to-the-quick hands and say “not this year” to the doing of all of the things.  But then I’d be setting myself up to sitting and stewing and fretting.  Not to mention feeling guilty for allowing myself the luxury of a good solid freak out instead of taking care of business.  Don’t nobody need to see the freak out.

So keeping control of our usual non-normal normal is better for everyone, even if it is hectic… even more hectic than our usual non-normal normal. Because in 3 days I don’t know what we might be faced with.  I don’t know if there will be complications, or infections, or delays.  I don’t know how Michael will act post surgery and what his physical needs concerning dialysis will be.  And dwelling on it gets my trigger finger to the freak out twitchy.  So I just make my lists, and my delicious hot chocolate,  and keep my head down.

I’ve got all the bases covered insofar as I know the bases that need to be covered.  I have prepped food for the fridge and freezer, unsure as to when I’ll be in the kitchen to create an actual meal again. I have arranged transportation and childcare for the other kid, who has been very understanding of the impending disruption to the household schedule. I have my mom on stand by if there are complications and the hospital stay is extended longer than we’re expecting.

I have lists set up based on possible contingencies, but there’s only so much I can foresee to take care of.  So I keep the overplanning to a minimum and keep praying that everything runs its course as smoothly as possible.   That we’re in and out and complication free in 72 hours or less.

Meanwhile, I’ve still been going through my own mandated testing,  trying to be approved as a kidney donor once we get him to the point that he’s able to receive a donor kidney.  I have had a glut of tests and procedures, and passed them all with flying colors…or so I thought. Turns out there was a hepatic cyst showing up on my liver on the CT scan that has to be checked by a liver specialist.  My appointment with him is Dec 26th.  And I had a spot on my arm biopsied yesterday so I’ll find out if that’s anything “in about 10 business days.” So I’m less unremarkable than I’d thought in the medical world. Somehow I thought being Remarkable would feel different.  And I sure never expected it to be this challenging to give a guy a kidney!

So that’s where we are.  Preparing to have his 2 kidneys removed; hoping I’m still in the running to replace one of them.

Meanwhile  (everybody sing) It’s the most wonderful time of the year…..

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Kidney Status: It’s Getting Real

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You know, it’s been so long since I blogged, and I’ve had so many conversations of varying length and depth with so many people… I don’t know what anyone knows anymore.  So I’ll just pretend nobody knows much of anything and get everyone up to speed with where we are in the Kidney Saga.

I think everyone knows we’ve been doing dialysis treatments at home on Michael.  We’re actually closing in on TWO YEARS of doing this.  January 11th is our General Dialysis Start Date Anniversary, and February 14th is our Dialysis At Home Start Date Anniversary.  We’ve had very few complications as we’ve done these treatments which is actually pretty amazing considering what we’re doing.

I’m not sure everyone understands that 4 times a week, we’re sticking 2 large-gauge needles into Michael’s arm, taping them down and watching a machine pull the blood from his body, clean it through a cartridge and dialysate solution, and return it back to his body.  There is no port to attach things to.

A surgeon did create a large fistula in his arm, where he basically connected an artery to a vein and inserted a mechanism that pumps blood at a higher rate to make this large, almost ropy, vein in his upper arm for us to insert the needles into.  But it’s still just his arm.  Still his flesh.  And he flinches almost every time, no matter how much or how long we apply the numbing cream.

And depending on the type of needles we use, we have to be careful that he doesn’t bend his arm too far lest he puncture himself internally, an occurrence known in the dialysis world as “infiltration”… we’ve had that happen twice and his upper arm swelled up with a pocket of blood and pain.  Ugh.  But we’ve learned what happened each of those times and have been super, super careful to avoid that happening again.

You’d think with the pain of the needles and the 2 infiltration moments and the boredom, Michael would resist treatment.  But surprisingly he goes into the game room and climbs into the chair each time it’s time for a treatment without fuss or hesitation.  Even knowing the flinch is coming.  The only thing we can discern from this is that he knows that it makes him feel better.  That his post-dialysis moments are the happiest, hungriest, most active moments he has each week.  He laughs, he eats, he is animated.  And he stays that way for a few hours, with things incrementally slowing down over the 48 hours until he’s tired again and it’s time for another treatment.

So that’s where we are with dialysis.

Of course, we’d like him to be happy and hungry and animated for more hours than just the post-dialysis ones.  Which is why we’ve been pursuing the plan to get him a new kidney through a transplant.  UT Southwestern has approved him to be on their transplant list and I am in the process of being tested to see if I’m a match to donate one of my kidneys.

Let me just side note here that being tested to be a kidney donor is a bit of a beat down.  I went to the lab to have blood drawn and to pee in a cup.  Those blood results told me I’m a blood match for Michael so I was asked to return for more blood work.  One of those blood levels was “borderline” so I returned to have a glucose tolerance test done.  I passed that and had to do a  24-hour urine collection.  I failed that and had to redo it.  (you have to understand how disheartening it is for a pretty much Straight A student to be told I’m failing these tests and must retake them!)  The 2nd collection was a winner and now I’ve been cleared to go down to UTSW and have 14 appointments over 2 days with all sorts of people, both for consultations and actual procedures.  They will check my kidneys and my heart, as well as ask about my diet, my psyche, and my support system.

All of this to find out if I’m a good candidate to give up a kidney and survive the surgery.  I started the process about 2 months ago and will finish by Thanksgiving.  I’ll keep you posted on how all of that goes.  But remember, if you’re ever thinking you want to donate a kidney, there are a lot of steps to the process, a lot of visits to the lab!

But meanwhile, after a few conversations with different doctors, the decision has been made to remove Michael’s existing kidneys, via a procedure known as a nephrectomy.  We had been told from the very beginning, when we first started pursuing the transplant process, that they would require his old kidneys be removed.  For a brief moment, one doctor thought we could avoid this step, but he turned out to be Dr. Falsehope and we’re back to having to have them removed.

These kidneys of his are full of cysts, which create 2 potentially negative things. One, they could become malignant in the future, and two, the cysts inside make his kidneys markedly larger than normal kidneys and they are pressing on his other organs.  Removing them might make him eat more if they are putting pressure on his stomach, and they will give the newly transplanted kidney the space it needs.

I had thought originally that they could do both surgeries at the same time–take out the old, put in the new.  But apparently with the risk of complications from any surgery, they want to do them one at a time.  Remove the old ones, let him heal, make sure he has no infections, get strong again, then do the transplant.  Obviously they want as few things as possible involved to risk the body rejecting the new organ when the transplant occurs.

So that’s a 6 week process from start to finish.  And the start date is December 8th, as that’s when the nephrectomy is scheduled.  By that time my testing will be done and we’ll know if I’m a good candidate for donation.  After his 6 weeks are up and he’s healed and strong, we’ll do the tissue matching to see if I’m a viable donor for him.  Then within a week after that, we’ll schedule the transplant.

But did you hear that?  I will have gone through all the testing and still, at zero hour, find out we’re not a tissue match.  They have to wait til the week before because bodies can change so rapidly that the antigens might not match.   Even if I’m not a match, he’s on the general donor list, and is accruing bonus points for being on dialysis!  So we’re hopeful that a transplant will happen sooner than later.

Our concern is how much will the dialysis sessions change once his old kidneys are removed.  Right now the old kidneys are still allowing his body to produce some urine so liquid is being removed from his body naturally.  The dialysis machine removes waste from his blood and also removes excess fluid based on the numbers we input.  We know what is dry weight is and we weigh him before dialysis.  We program the machine to remove the fluid that is considered excess.

Once his kidneys are removed, he will stop urinating and we’ll have to remove even more fluid.  We’ll have to monitor more closely how much he drinks.  And watch for signs of fluid retention.  Only a certain amount of fluid per hour can be removed safely, so odds are we’ll be on the machine for longer periods of time.  If it’s just for those 6 weeks, that’s fairly manageable.  If I’m not a match and we’re waiting for an indefinite period of time for a donor kidney, well… I’m not sure how the new dialysis sessions will go.  We’re hopeful we can keep a handle on things and get the same results we’ve been getting the past 2 years with dialysis.  That’s twice I’ve said Hopeful… and you know, hopeful is as hopeful does… which isn’t much.

But that’s where we are.  Some answers, some questions, some knowns, some unknowns.  Pretty standard fare in our world.

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Sometimes They Do Say Yes

We got the call yesterday.

“It’s UT Southwest, It’s UT Southwest! Answer it!” Riley screamed, running down the stairs after seeing the Caller ID post flash on the TV screen.  I didn’t correct her pronunciation because Mike had already picked up the phone and was listening to our transplant case coordinator telling him the details of the transplant committee meeting. We had gotten a call the previous Tuesday telling us that the main doctor who was to have presented Michael’s case to the committee that day had been called away on an emergency, so the presentation had been postponed to this week.  Part of me wondered if this was yet again another “The news is we have actually no news” phone calls.

But he was still listening, mmm-hmmmm’ing, nodding… and after a few moments he turned to give us a Thumbs Up while still continuing to listen.   Riley broke into a big smile.  But again, part of me hesitated… and wondered if the Thumbs Up was THE Thumbs Up or just a “it’s not a Yes but it’s not a No so we’re still in this” kind of thumbs up.

Those of you who know me will not be surprised at my reticence. Life has not always been kind to us in moments like this, Baylor-Who-Rejected-Us had not been kind to us in an exact moment like this,  and my guard is always up… my inner Eeyore sighing and bemoaning.

But it turned out that it really WAS a They Said Yes Thumbs Up.  Michael was officially being put on the Kidney Transplant List.  They were saying Yes to Michael.  They were seeing past the disabilities, the low weight, the seizures, and his being non verbal.  Seeing him as we see him.  As him being deserving of a transplant.  And of us being capable of helping him through the process.

There is still one caveat… because, life.  At this point he’s a Status 7 patient.  That means he has an outlying medical concern that must be addressed before he can officially receive the transplant.  But since it’s one that they know will be taken care of, he can stay on the list and work his way up the ladder of waiting.

To change him from a Status 7 to a Status 1, he must have a nephrectomy  to remove his existing kidneys. Apparently in a standard transplant, they insert the donated kidney and hook it up into the existing plumbing, while leaving the 2 original kidneys in place. They just tuck the new kidney into the front of the abdomen, and don’t mess with the back side of the body where the original kidneys are.  They do this because 1) it’s less complicated in terms of invasiveness and recovery time and 2) sometimes the existing kidneys are semi functional so they are left to be helper kidneys in whatever capacity they can be.

Michael’s kidneys are full of benign cysts.  The concern is that down the road those kidneys could become malignant.  Bodies being what they are, any compromised areas are more susceptible to cancer, especially when introduced to anti-rejection medications. So they’d like us to have those kidneys removed, and then we’ll do the transplant after he fully recovers from that surgery.

Setting up this time frame will be kind of tricky.  While his kidneys are not removing waste from his body and are relying on the dialysis machine for that, they are still producing some urine which helps keep him from being bloated and retaining fluids. Once we remove his existing kidneys, we’ll have to adjust the machine to remove all of the excess fluid in his system.  Odds are we’ll be doing longer and more frequent dialysis sessions in order to accomplish this.

And again, while we are very proficient at performing dialysis, it is not something we look forward to doing and not something we relish doing even more of.  Our goal is to get him a functioning kidney and come off of dialysis.  But it looks as though part of the interim time might be fairly dialysis-intensive.

We know we have some time to get this done, because the wait time for a “cadaver kidney” (their term) is either 3-5 years, or 4-7 years, depending on which publication you read.  None of that is a feel good kind of read.   The wait time for a living donor is non existent.  You set your own timetable.  But there are a lot of steps for the prospective donor to go through before being considered a match.

This morning I got online and filled out my application to be a kidney donor for Michael. I’d have done it right after the phone call yesterday, but we were on our way out the door for a Rangers game (they won 10-4, woo hoo) and I knew that 18 hours wasn’t going to matter in the grand scheme of all of this.

I answered questions about my height, weight, medical history, and personal habits.  I was a No to all of the “bad habits” questions.  Clean living has its advantages sometimes, even if you don’t have as many great stories to tell.  But maybe this will be my great story to tell.  I’d like to hope it starts with me and ends with me.

Be quiet, inner Eeyore.

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