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What I did on my summer vacation - a trip to the Mayo Clinic. [1]

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Date: 2023-07-06  

What I did on my summer vacation – a trip to the Mayo Clinic.

I have a friend whose health had never been ideal, for many reasons. Let’s call her K___. She is indolent, and has neurochemical imbalances that have meant a lifetime on Lithium among other things. She is also a hypochondriac, which is suppose is a logical outgrowth of the other factors. She comes from a very wealthy family, so she has never had to worry about the end result of this, but a few year sago her doctors started seeing a marked decrease in kidney function.

When her kidneys started to go bad, she went back into panic mode (being severely bipolar makes this a regular occurrence) and started doing research into kidneys. I have heard her refer to herself as a‘professional patient’ and ‘an honorary doctor’, and have always been reminded of the song “A little knowledge is a dangerous thing.” But she is not stupid by any means – she has an MS degree, even though she has never used it – she just has an unusual (and IMO unbalanced) perspective.

So when her kidney function dropped below ten percent, she started talking to people about dialysis and kidney replacement and all of that stuff. Her family made it quite clear that they were not interested in doing any more than was quite necessary, as they all had their own concerns and priorities. So she started to talk to her friends even more about it, and while I am not qualified to be a kidney donor (I’ve had numerous kidney stones – something to be urgently avoided), I agreed that, if push came to shove, I would be willing to care for her if and when she needed a transplant, if no one else would, and if it was possible. That’s a rule for a transplant – the subject needs to have someone with them 24 hours a day, for an average of 6 weeks, to qualify for the transplant.

A couple of years ago, her kidney function dropped below five percent and she was put on dialysis, which she says is a living hell. I will trust her on that, not wanting to find out myself. She also registered at the UCLA kidney transplant center. (I got regular reports about the life of a dialysis patient, and her efforts to find a donor, all of which have been unsuccessful.

For those unfamiliar with dialysis, it is probably not like what you expect. The machines that do the dialysis are about the size of what they use for apheresis at the blood bank (I donated 19 gallons before I was disqualified, about half of that by apheresis): Units about half the size of a refrigerator that take your blood out, filter it,and put it back in cleaner. Dialysis does about ten percent of what your kidneys do. You spend three to four hours a day, three days a week connected, rather than the ninety percent average a healthy kidney does 24 hours a day, and the techs tend not to be the best and brightest, and are often not happy in their jobs. They make mistakes, and among the symptoms of bad techs include anemia,cramping, and plummeting blood pressure when the machine is not properly monitored. She got all of these and more.

A little over a year ago, she registered with the Mayo Clinic in Phoenix and their transplant list. I and her sister went through lengthy interviews about being her caregiver, in case a kidney could be found. I packed a ‘go-bag’ just in case, and then went back to my regular life. I was working full time, and the list has an average wait time of several years (UCLA – 5-8 years, Mayo – 3-5years). I had nothing to worry about, right?

Well,I retired a year ago, and got really busy (those who have been there will understand). The music biz got busier, the writing got busier,my social life improved (same woman as the last 6+ years, but more time for her), and other things. Life was almost smooth.

And then, on the morning of the 11th of June, at 7:30, I got a phone call, just as I was stepping into the shower. (Rule: The best way to get the phone to ring is to go into the bathroom). It was K___.

“I got a kidney! Mayo Clinic!”

I answered the only way I could: “I’ll be on the road as soon as I can.” I’d filled up the car three days before. I confirmed where to go, sent out a few emails to the necessary people to let them know I’d be gone, dropped the last couple of things in my go-bag, turned off everything possible and hit the road.

Have you ever driven from San Diego to Phoenix in the summer? 450 long,hot, mostly boring miles. Under half way from the coast to the Arizona border, the I-8 freeway crosses the Palomar Mountains –rising almost a mile up, and then drops to sea level again in El Centro. Things get very flat and predictable there – the only things that really stand out are the artificially watered fields that stretch from the Gulf of California to the Salton Sea, but you don’t see either of those – just miles and miles of flat land, watered by imported water.

At the border with Arizona is the desert town of Yuma, which sits on the banks of a little creek that used to be the Colorado River. The water has all been taken before it reaches Yuma, which is also on the Mexican border. It took nearly 2 hours to get that far, by which time I needed a break – I had to pee and check in to see how K____was doing, and of course, she called back while I was in the bathroom. She then texted me to say she had a flight, and a friend would be joining her for the first 2 days, and that her sister was looking for a hotel for us.

Past Yuma you get into the kind of territory they use for making movies –enormous sand dunes, vast stretches of dirt and cactus, a little town called ‘Dateland’ that has maybe a square mile of date palms which supply the sole reason for the town's existence. Then nothing until you reach the metropolis of Gila Bend (population 1892) where the freeway ceases to be a freeway, and becomes just a road going through the middle of town. I wonder if that would even be allowed in California, but there it is. You slow from 75 to 45 MPH for a few miles of bad road, and then the highway (no longer the freeway –that left miles back) bounces along northward for about 25 miles until you meet the I-10 from Los Angeles, which widens out a bit and speeds up a lot until you get to Phoenix.

We didn't go to Phoenix. Though the Mayo Clinic is legally in that city, it is less than a mile from the suburb of Scottsdale, which is far from ‘downtown’ Phoenix. I saw a lot of sprawl and a sports venue from the freeway, but nothing I would call a city as I took the loop around the city. The thing that surprised me the most was how little traffic there was on the freeways – we averaged 75 MPH,where that would not be possible in SoCal. (The last two trips I made to L.A. I averaged about 7 MPH once I was in the city. On the freeways).

I got to the clinic at about three in the afternoon. The Phoenix MayoClinic is gigantic. A cluster of buildings which are attached toeach other, but mostly not connected, it dominated the landscape. The parking lot of bigger than the buildings, and as a shock to thoseof us from more concentrated urban climes, is all free. Freeparking. What a concept. But the land there is flat – almost asflat as Kansas, but there are sudden outcroppings of stone that makeit clear this was once a seabed. It might have been nice then – acalm, shallow sea with islands rising ever now and then for refuge,but as it was that day, it was just HOT.

I pulled into the parking lot, grabbed my phone (kept in the center console while driving – I hate distractions) and sent “I am here. What building are you in?”

“Main building, in the lobby – the big atrium.”

I jogged to that building (I do not and can not run), and saw no one I knew. I turned to the information desk, and said “I’m here for a kidney transplant, and…”

“Oh– you mean K____! She was just taken to pre-op!”

Fortunately,K____ had given her phone to her travel buddy, who texted me –they’d missed me by seconds, and as travel buddy was also female,and as the Pre-Op ward was empty (they had done a bunch of transplants in the morning, but my friend was the only one that evening) she was allowed to stay with K___ until things got official. The kidney was just landing, and the surgery would happen at 5.

We texted back and forth, and I wandered the hospital as much as I could– the waiting room was small and full of people – until travel buddy (who we will call V___) said she was being kicked out, and would meet me in the waiting room.

The staff at the Mayo Clinic is amazing. In my month there, I ran across two who were not bright, friendly, and very professional, and one of those was just having a bad day. (The other was a surgeon who felt he was so far above everyone else that he did not have to put forth any effort as a person – just as a machine which does surgery). We got regular updates from the O.R., and between those got a message from M’s sister, letting us know she’d found a suite at a nearby hotel. The surgical team texted us and said K___ would likely be out of it until morning, but that everything had gone very well.

Soonce the operation was done (‘kidney is producing urine already!’)we headed to Scottsdale to check in and get situated – I was therefor the long run, and we knew there were things we would need. So we made a quick run to Target, and filled the suite’s kitchen with things we knew K___ liked and could eat.

By8:30, we got a text from the hospital saying K___ was awake and already asking questions. A while later, another one saying she had been moved from Post-Op to a room and was sleeping. We crashed at about ten – it had been a long day! - and got a call at about 10:30saying K___ was asking for us. So we drove to the hospital.

K___was awake, and mostly lucid. Her most repeated remark was “I have a kidney! I don’t believe it!” She asked the surgeons to show her the kidney before they put it in, and they did, which made her almost giddy. She had stories about booking the flight, having the airline cancel that one, getting a second one at the last minute,having to check their baggage (Mayo had told them not to waste a moment - if they did not make it by four, no kidney), almost getting on the wrong freeway (Burbank! I thought we were going to LAX!), and barely making the flight, but by one, she was tired enough to sleep. We left her phone with her, and went back to the hotel.

By the next morning we were getting regular reports from her, and regular requests, but she would not be released for a couple of days,so we went and spent a lot of time sitting in her hospital room. Her spirits were good overall, though she had (not surprisingly)significant pain, and had a catheter in. Nonetheless, by the afternoon of the 12th they had her up and walking.

Somethings I learned about kidneys in Arizona: Transplant surgeons do not replace the damaged kidneys – it would cause too much trauma. Instead, they just add the new kidney, and re-route some of the blood vessels and the other plumbing. This means a shunt is installed to connect the kidney to the ureter. The shunt remains about three weeks, and is taken out when they remove the staples that were used to close the incision. Replacement kidneys have been non-functional and disconnected for hours (AKA Dead) for a while, sothey take a while to ‘wake up.’ Until that happens all fluid intake and release is very closely monitored. And until that happens, dialysis continues. Kidneys control the production of red blood cells – they are what tells the bone marrow to make more RBC’s, and damaged kidneys are not good at this, as are replacements that are not fully functional yet, so anemia is a major concern. There are ways to transplant kidneys from different blood types – K___ got a blood type A kidney, but is blood type B. And they will not tell you about the donor. In a few months, they will forward a note or card, but no more.

The next couple of days were a blend of tedium and anxiety. V___ and I would get up, check the texts we’d gotten, tidy up, grab breakfast,and then head to the hospital to be supportive to K___. The second day, V___ noticed there were no grab rails in the bathroom on her side of the suite, and went to talk to management about it. They said they had a possible solution – there was another suite that was better set up for the disabled, but one room would be available that afternoon, the other adjoining room the next day. She settled for that, so we spent the afternoon clearing our stuff out of her side and tidying up (navy training – always clean up. Visitors to me apartment do not believe it, but it’s true. Justus that my place has more stuff than room. Given the opportunity,I am fastidious… is the opposite of ‘fastidious’ actually‘slow, tedious’?), and she moved to the new room. The next morning was to be her last day in Phoenix – she had a life to get back to. So I packed again, went to the hospital for a few hours,then saw her off via Uber to the airport, and moved to my new room.

The next day K____ was released from the hospital. She was already doing multiple laps around the nursing station, and had the foley removed(which is a very liberating thing, for those who have never been catheterized), and was fairly emotionally ready to be semi-independent. No more foley, no more interrupted sleep, no more random sounds from the other side of the door (no – I do not snore. I had that checked the last time I was hospitalized), and though the kidney was still not fully operational, it was awake.

The plan was this: Blood and urine and other tests ever Monday,Wednesday, and Friday mornings, followed by visits with the nursing staff, and sometimes doctors. Constant monitoring of vital signs (at least twice a day) and medications, with the anti-rejection meds being adjusted when needed. Dialysis on Tuesday and Thursday and Saturday afternoons until no longer needed, just to help the kidney –to give it a little assist until it was running well enough on its own. With small adjustments, that worked pretty well. The dialysis was not done in hospital, so I had to drive her there, but that was not too bad, even in the heat.

That was a major factor. There was no day when the heat was under 100degrees F. We peaked at 112 one day. So we stayed in the room or the hospital, and never went out without masks. Masks were also always worn in the hospital, and both of us were surprised at how few others (not staff) went unmasked. Transplant patients have their immune systems turned OFF, which means anything can be deadly. She was tested regularly for covid and other bugs, and I tested every other day. But many wandered the hospital without a mask. Every time we had to go anywhere in the car, I’d go out and turn on the A/C full blast, full cold, and then drive to pick her up, and jump out and open and close the car door for her, as the torque was painful on the incision. But she improved quickly.

We’d been there a week (having done laundry, which was ‘exciting’ for the variety, and making one trip into town to get her some-stationery, which left her exhausted), and were doing pretty well,when on a nurse visit she complained of some upper abdominal pain. The nurse said “let’s get you an X-Ray.” Simple enough, right? After 45 minutes in radiology (the line was very long, including a young woman in an evening gown), she wanted lunch, so we walked(slowly, of course) to the hospital cafeteria to get lunch.

Halfway there, she got a text from the hospital. “Get to admitting NOW”was the core of it.

Have you ever heard of Ogilvy Syndrome? It has to do with taking Oxycodone for pain relief, and that drug shutting down some key body functions. She was re-admitted in ten minutes, and taken to a room. By the next day, after trying several options that did not pan out,they gave her 2 options: Try a potentially dangerous treatment, or have your bowel removed. She chose the first. (I mentioned just using Taco Bell to the Doctor, and he said it was less safe than the other method, which requires having Atropine available in case of emergency).

While this was being discussed, I got a phone call from K___’s sister. She’d found a suite from us that was much closer to the hospital This is a big deal. The May Clinic has a hotel that was built right next door – the “Residence Inn” (by Mariott) which was less than a half mile away, and which has better kitchens in the suites. The rooms were not as big, but the commute would be 2 minutes, vice20, which can be crucial in case of emergency. So while K___ was recovering from the procedure (which was successful, even though it took an hour, and had to be done twice), I packed us up and moved us into the new hotel. (And even though I am generally very careful, my bottle of Listerine still leaked over my shirts, which rather than paying $4 to launder, I hand-washed in my bathroom sink. There are tricks you learn in the navy and on the road with bands that are useful in real life. 20 minutes of washing and rinsing, and I putt theshirts on our balcony to dry, which in 102 degree heat did not take long) She stayed in the room, under observation another day,which led me to try the free breakfast the new hotel advertised. Adequate, I suppose, but I never did it again.

That afternoon I took K___ back to our new rooms.

K___loves to shop. She was also excited beyond excitement that she was done (possibly forever) with dialysis! Her kidney was awake! So she peeked into the cupboards and fridge and loaded Instacart on her iPad. And when her blood tests came in, she did it again, as her sodium and potassium levels were finally (for the first time in years) low enough that she was allowed to eat foods she had missed a lot.

But it was not all complications and emergencies. I am a more social person than some know, so

when I was stuck in a waiting room, I talked to the people there. One guy who had on a T-shirt that said “If it’s HER problem, it’s MY problem! [National Kidney Foundation].” His wife had just arrived to get a kidney,and we talked for a while, and I did my best to be encouraging. I saw him the next day, and he was grinning like a fool – the operation went well and he gave me a hug. Made my day. A couple of days later a doctor stopped me in the hall because of what I was wearing, and we had a very nice conversation about my T-shirt and its subject. (My late Brother) Also made my day.

So we settled into a routine. Up every morning early, as she had medications by the dozen to take (one of her new meds – the primary anti-rejection pill – was adjusted according to the blood tests)every morning at 8 and every evening at 8, with food. So on days she did not have blood tests, I’d make us breakfast, then we’d sit –me reading, her on her phone and iPad – until noon, when I’d make us lunch (turkey and provolone on sourdough, sometimes with tomato or avocado), then back to the reading and browsing until dinner and drugs, then shower and to bed by ten, which was hard for her, as she is a night owl.

Of course, there were things to break up our routine. The primary one was the changeable menu, which depended on her permitted intake of things like Potassium and Sodium and the like, but we also had adventures like doing laundry (the things that cold not be machine dried we put out on the balcony outside of her room, where they dried very rapidly), and the one night when I looked out of my window to see the window screens had been removed, and were lying on the dirt next to some soiled underwear and a pile of fresh feces. Hotel management was not happy with that phone call. They called back an hour later to tell me the person responsible had wandered from the hospital and been struck by the heat and gone a bit loopy. When it only gets down to 85 at night, I can understand that – Phoenix in the summer is Phoenix on the simmer.

Clinic days to be accompanied by monitoring of vital signs – weight, blood pressure, temperature, pulse, all kept in a notebook for the nurses. I also weighed myself daily, and in my month there lost the fifteen pounds I’ve been wanting to lose for the last couple of years. A large part of that was from drinking only water, and eating smaller portions, but the other parts was that, due to boredom, I’ve gotten back into doing sit-ups – at least three sets of fifty per day. I no longer flinch at the sight of a mirror. But mostly we just sat. I read “The Neil Gaiman Reader” which I cannot endorse more enthusiastically. Geez, what a writer! Also “Diablo Mesa”by Preston and Child, “Heroic hearts” (anth) ed. by Jim Butcher and Kerrie Hughes, the May/June edition of F&SF magazine, Gini Koch’s latest Kitty book… and outlined some short story ideas. She texted and phoned and facetimed the rest of the planet… and was always surprised when her phone or iPad ran out of charge.

And then she was marked in a blood test with a minor infection, probably from the shunt that had been put in. And the infection was immune to Amoxycillin, which meant a 4 hour infusion of other antibiotics every afternoon.

That last could have been a big nuisance, but she discovered that the infusion center had no objection to visitors, so every afternoon we would go and while she was being cured, watch movies. (Earphones,people!) “Puss in Boots 2” was cute. “Pop Gun – Maverick”was ridiculous (sorry – I was stationed across the street from them on my last active duty command in my navy years, and the only thing they got right was the smug attitude of the fliers), and “News of the World” was very good.

But first we did something K___ had been talking about since we got toPhoenix – visiting “The Poisoned Pen” – a very good genrebook store in Scottsdale. The place was great, and I picked up asigned first edition Vachss and a Kevin Hearne and a T-Shirt, andK___ got stacks of books. She’d brought a lot of books withher, but had not done any reading. Her medications kept her tootired and fuzzy minded.

After three weeks, she let me loose for a few days. A friend was to fly in from the east coast to spend a few days with her. So I drove home,watered my plants, did my laundry, and otherwise hid from the world,so as not to rick getting covid. (The woman I had been involved with for the previous six years who had firmly but gently moved me into the ‘friend zone’ 3 days before the kidney call came in had called me my first day in Phoenix to tell me she had tested positive for covid, so I was extra cautious). The drive home was 6 ½ hours almost entirely under a 109 degree sky. Bleah.

And how did this adventure conclude? Not happily, alas. I wanted to see K___ emerge from the hospital, all systems go, but Murphy, as always,had other plans. The morning of the 6th of July, I was awakened by a very nasty sore throat at 4:AM. I staggered into the bath and looked – it was only somewhat inflamed, but was still very painful. So I texted K___ (who was up at that bloody hour with issues of her own) and she told me in n o uncertain terms that I was not to return. She has a point – have effectively no immune system is a very dangerous thing. I went to the local CVS (a 24 hour one,thank goodness) and got a Covid test (which came up negative), and will spend my day unpacking. I will not miss the oven heat of Arizona in July, but feel horrible that she will have to find someone at the last minute to finish her adventure.

And how did you spend your summer vacation?

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