8/7/2022

The Plan

MargaretMargaret
Filed under: @ 4:03 pm

The nice lady at Swedish spoke with the on call transplant nephrologist who told her to tell me to arrange for Andrew to get a monoclonal antibody infusion.

Great! How do we do that?

“Well, if you were in town we’d tell you to come in to one of the Swedish clinics and we’d be able to do it here.”

*sigh*

Nice Lady told me to check with the local health department since they usually have monoclonal antibodies.
I checked with the health department, they didn’t. They recommended that I call around to the local hospitals to see whether or not their emergency departments or infusion centers had doses.

So late Thursday night I was calling every hospital I could find in Santa Fe to see whether or not they had The Good Stuff.
BINGO! Got one.
Made an appointment for Andrew on Saturday morning, their next available, to get an infusion of monoclonal antibodies.

While I was dealing with medical stuff Andrew was dealing with travel stuff. According to the CDC we had to quarantine for 10 days. Fuck.

Andrew contacted the hotel. At that point, June 30th, our reservation was through July 6th. Which is not, of course, 10 days. Andrew explained the situation to them and was met with, unsurprisingly, “Sorry. Can’t extend your stay. The upcoming holiday means that we’re super full for the next 10 days and there’s no room.” Double fuck.
We couldn’t stay at Meg’s house, she was already hosting Sara and they were both sick but they didn’t have Covid.
We couldn’t stay at Libby’s house. Libby was hosting Caitlin and Calvin, all three of them were sick, but not with Covid. Lucy was the only adult in the family who wasn’t sick and she wasn’t likely to want two more sickies around even if there had been space for us (which there wasn’t).
The chances of us being able to find another hotel that would rent us a room knowing that we were sick, there wasn’t any way to hide it at that point, were vanishingly small. Triple fuck.

We did get a tiny ray of hope when Andrew found the exception on the CDC’s website. The exception was that if you’re Covid positive but have had an approved treatment and it’s been more than 24 hours since you’ve needed to take any medication to control your fever you can fly.

Then all we needed was the approved treatment.

7/15/2022

Panic and chaos

MargaretMargaret
Filed under: @ 10:55 am

Over the last two years my brand has developed into strict scientific conservatism.

I wear a mask any time I’m out of the house and not in my car. When I’m in public that is. I don’t take walks wearing a mask and I don’t garden wearing a mask, but those aren’t multi-person events.
I keep a bottle of hand sanitizer in one of the cup holders in my car and use it every single time I get back in the car. Heck it was only a few months ago that I stopped wearing gloves in public all the time.
I wash my hands obsessively. I changed from a non-washable purse to a series of canvas totes which can be run through the washer. Although granted I did recently switch back to a regular purse, but I still leave it in the laundry room when I come in instead of bringing it into the upstairs. Andrew does go into the laundry room, but he doesn’t interact with the coat rack from which I hang my purse.
I leave my shoes in mostly in the laundry room. I change from my work clothes in the laundry room.

My brand has been: “I do NOT get Covid. I don’t get it, I don’t bring it home, I don’t spread it, and I don’t give it to my husband.” Careless people get Covid. Dirty people get Covid. I am careful and paranoid and conscientious and I follow the rules. I do not get Covid.

We had known that some parts of the family had some type of sniffle. Ward and Beckah (oldest great nephew and niece) had some sort of upper respiratory thing on the first night we were in Santa Fe. But they were also dealing with allergies so…. Calvin (youngest great nephew) had gotten some type of upper respiratory thing that had ended up in him developing croup and having to be at the ER in the middle of the night two days previously.
But neither of us had been really cuddly/snuggly with any of the greats, seeing as most of them were only partially vaccinated for Covid. And since we’d declined to drive anyone around except ourselves and Libby — who is vaccinated and boosted — we figured we’d be able to avoid any sort of plague.

But.
But there I was feeling like someone had tried, clumsily, to remove all of my bones but had stopped and left a good number of them in place. I was hyperventilating, looking at the positive test lurking there on the sink in the hotel room, and trying to figure out how to convince the hotel that they needed to put me in a separate room so I wouldn’t be a risk to Andrew. That’s when Andrew, who had also been feeling a little wishy-washy, spoke with the voice of reason and suggested that he test himself before we started figuring out how to quarantine me.
And, of course, he tested positive too.

Panic. Panic and chaos.
I can’t even begin to describe the horror. Out of town, away from my personal space and sick with a potentially very serious infection. Facing spending 10 days quarantined in a bloody hotel room with my similarly infected immune suppressed husband with a transplanted kidney next to me and no one local who was qualified to manage his particular condition.

Andrew’s thoughts immediately turned to letting family know and figuring out how long we’d have to stay in Santa Fe. My thoughts immediately turned to my life line, the after hours nurse at the Swedish Transplant Center.
I’ve mentioned before how impressed I’ve been with the post-transplant support service at Swedish. Since dealing with them regarding Andrew’s cardiac event and now this, I’m even more impressed. It occurs to me just now that I need to send them a big huge something as a thank you. The woman I spoke with was able to connect to the medical part of my brain and, bypassing the panic, download A Plan into my head. Having A Plan, even if it was A Plan that involved us staying in a bloody hotel room in Santa Fe was soothing.
Well, that, a milligram of Xanax, 50mg of Benadryl, and 3 Advil at least.

7/10/2022

We did have some fun

MargaretMargaret
Filed under: @ 4:28 pm

Tuesday morning started with us calling the rental car place since we’d noticed the evening before that the “check engine” light was on in our people mover. The nice lady at Alamo arranged a switch for us which we promptly went to get.
We were scheduled to pick up something like a Rav4 from the Enterprise rental outlet that we had been sent to, but the Rav4 in question was pulling out as we pulled in. The nice man at Enterprise (Alamo and Enterprise are connected somehow, I don’t know how) set us up with a Mini instead.
It was a fair trade. Since many of the family at the dinner party on Sunday evening had been suffering some sort of sniffle we had already concluded that we weren’t going to be sharing car space with any large numbers of germ ridden family so the Mini was a good solution.

We piled into the Mini and headed (literally) for the hills.
Tuesday was scheduled for a family gathering at a river that feeds out from the Abiquiu dam. There was going to be splashing and fishing and sunbathing then traipsing back to Meg’s house for Mexican food. We were lukewarm about the idea of hanging about the river all day and Andrew is supposed to stay out of the sun anyway so instead of waiting for everyone to mount up to go to Abiquiu we went ahead up into the mountains to Tierra Wools (https://www.handweavers.com) which is not quite in Chama (translation: Chama = the back ass of nowhere way up in the mountains north of Santa Fe) but close. It was a lovely drive and we spent an inordinate amount of money on some lovely woolen things. Then we turned around and headed back down the mountain, stopping for the tail end of the Abiquiu dam experience. We met up with the rest of the family in enough time to eat a couple of sandwiches, pick up a couple of rusty fish hooks that some brainless git (NOT family) had left along the river bank, then pack everyone back in the car and head back down the mountain again.
Again, beautiful drive. Breathtaking scenery, and prairie dogs are damn cute in their own environment. There were also LOTS of cattle.
It was good Mexican food at Meg’s.

The next morning David came down from Albuquerque. Nephew Sam and his clan were packing up and heading back towards North Carolina on Wednesday so we got to say goodbye to them and have a nice time with David. I wanted to do some shopping that afternoon so Andrew kindly drove me down to The Plaza. We noodled around together a little bit, but Andrew wasn’t up to walking a lot so he found a nice shady spot with good WiFi and I traipsed around a bit on my own.
After the second time I’d been accosted by an underfed, overly fussy, prissy huckster outside a skin care products storefront, complimented on my hair color, and offered help with “bagging and puffiness under [my] eyes” in the space of 10 minutes I decided I’d had enough of nosing around a tourist trap on my own so I went back to where Andrew was lurking and we went to look at knives.
We had dinner at Julia’s house that evening and put together plans to go to Bandalier National Monument the next day.

I think Google Maps was in on it

MargaretMargaret
Filed under: @ 3:45 pm

We woke up the next morning with the knowledge of why we don’t have a queen bed at home firmly reinforced in our minds.
Andrew and I are not cooperative sleepers. Andrew sleeps in more than three dimensions. I sleep deeply unless something unexpected touches me at which point I jerk.
It wasn’t a restful night.

Still, we got up, showered, contacted Andrew’s GP about the insulin, and went downstairs for breakfast. To find that the complimentary breakfast bar was only open between 0600 and 0900.

Irritating, but not fatal.

We talked to the front desk about switching rooms. The manager showed us a room on the ground floor with two twin beds which, we confirmed, would do nicely. We needed to eat, though, so we arranged with the manager that we’d move our things before official check out time at noon and went to find breakfast.

It is absolutely mystifying to both of us how, why, and what happened next. It’s maybe 7 or 8 miles between our hotel and the center of downtown Santa Fe (called “The Plaza”) where Cafe Pasqual is located. If you know what you’re doing, it’s even a straight line with one right turn to get from where our hotel is to Cafe Pasqual.
It. Took. An. Hour. To. Get. There.
An hour which was punctuated with non-Euclidian geometry, investigations of numerous Santa Fe neighborhoods, and a trip outside city limits.
Granted I’m not experienced with mobile navigation systems and my capacity for rational thought declines along the same slope as my blood sugar, but for fuck’s sake, I *can* read. I read the instructions as they came up on Google Maps and we ended up traipsing around places I don’t think I could find again if I were paid a large sum of money.

We left the hotel at about 9:45 and ended up seated and ordering our food at about 10:55. And we had to be back at the hotel to move our crap into a different room by noon.
It was an insult to the food to bolt it down like starving pirhanas but by the time there was food in front of us we were both starving, it was 11:10 a.m., and we needed to figure out how to get back to our hotel in less than an hour so we could move our stuff in time to not be charged for two rooms.
So our manners left a little to be desired.

Suffice it to say that we got breakfast and we got back to our hotel in much less time than it had taken to get to the cafe. Got our rooms switched and settled in to plan the afternoon. We’d been invited to Libby’s for dinner so we thought we’d go and get Andrew’s insulin and make a stop at Target to pick up additional pillows since the hotel couldn’t provide us with extra pillows and we each sleep with LOTS of them.
Went to Target. Got pillows. Got pillowcases. Even remembered to get Andrew a pair of headphones since the ones that he’d brought with didn’t work with the media player he’d brought.
Went to Albertson’s to get insulin.

Albertson’s had the insulin. Their pharmacy was even open. Our insurance, however, wouldn’t pay for the insulin since Andrew had just had a full 90 days’ supply delivered to our house and they couldn’t see why he should need more.
There are numerous reasons why the American health care system is in desperate need of revision. One of them is that two bottles of insulin – a medication Andrew needs to STAY ALIVE – cost us $583 and that was *after* the pharmacist pulled some strings and used some coupons. 20cc of medication. Enough to last one type 2 diabetic adult human about 14 days. $600.

7/9/2022

The fucks begin to mount….

MargaretMargaret
Filed under: @ 3:58 pm

The flights were actually smooth. We went from Seattle to Phoenix and from Phoenix to Albuquerque. We got off at Albuquerque, got our rental car and got to Santa Fe.

The hotel in Santa Fe was a little more run-of-the-mill than we’d planned on, but it was clean and extremely convenient to Meg’s house, Libby’s house, and, as it turned out, the VRBO that Andrew’s oldest niece Julia and her family were renting for this debacle.
Our room, as it turned out, was not the king bed sized room that we’d hoped for and it was right next door to the exercise center. Still, it was a decent hotel and once we got all our stuff schlepped in from the car we set about to settle in a bit.

Which is when we discovered that Andrew had very cannily packed up his insulin and put it in the fridge before we left then totally forgotten to put it in the suitcase.
*fuck*

Annoying, inconvenient, and potentially medically dangerous, but not really too bad.
One of the things that many people don’t know about insulin is that many years ago the federal government decided that this exact situation could be fatal for a lot of people so most insulin isn’t actually a prescription drug. You can walk into pretty much any pharmacy in the U.S., ask for a bottle of insulin and they’ll sell it to you.
All we needed to do was to find a pharmacy before we headed out to Julia’s house for the barbecue and we’d be set.
So we went to the CVS up the road from us.

Did you remember that it was Sunday?

CVS’ pharmacy was closed.
*fuck*

So we went to the Albertson’s pharmacy down the road from the CVS. Their pharmacy was open so we rolled up to the counter and asked for a bottle of Andrew’s type of insulin.
Which, as it turns out is one of the few types of insulin in the U.S. for which you need a prescription.
*FUCK*

Annoying and inconvenient, but still not really too bad. Andrew had enough insulin to last the night and all we needed to do the next morning would be to call his GP and have him issue a new script.
So we gave up on giving a fuck and went to Julia’s house for ribs.
And beer.
Lots of beer. At least for me. Lord that was a lot of Lenzers!

Andrew and his three sisters (four). Andrew’s oldest niece, Julia, Julia’s wife Sam, their three year old Mara, and Julia’s two older kids Ward and Beckah. Oh, and Sam’s mom, Marianne. Can’t forget Marianne. That’s, what, six? Andrew’s nephew Sam, his wife Shelley, and their two kids Liam and Ana. That’s four of the Sam & Shelley contingent. Andrew’s second oldest niece, Caitlin and her five year old Calvin. That’s two more… Let’s see, Lucy, the youngest niece, had the good sense to decline to attend. Oh, but Julia and nephew Sam’s father and his second wife were there so Jay and Susan are another two. And I can’t forget Meg’s third ex-husband Rad. Rad was there too which makes….

20 of us. 14 adults and 6 kids ranging from 3 to 12.
And every single one of them at maximum decibels. The neighbors must have been reeling.

Ribs, salad, chips, and beer in great quantities consumed. It was a nice dinner, it was lovely to see people in the flesh and actually meet relatives we’d heard about but never met before.
But it was also nice to get in the car and retreat away from the decibels.

So we went back to the hotel only to realize what it meant that our room was next to the exercise center.
*F*U*C*K*

7/8/2022

One should listen to the little voices…..

MargaretMargaret
Filed under: @ 5:40 pm

We were scheduled to leave Sea Tac at 0830 on the morning of June 26th. We’d spent much of the prior week with a list of things we needed to get done before we left. Most mornings I’d sit eating oatmeal and add to, or cross things off of, the list. It had been four years since we actually left town for any period of time and we wanted to be sure that we had everything covered.
I should have known something was going to go pear shaped when we’d finished The List before Anastasia showed up on the evening of the 25th.

We wanted to be at the airport by 0615. We thought that flying on a Sunday would maybe keep the crowds a little less crazy and we’d heard that airports have become capital C Crazy. I had checked us in for our flight the day before and (inadvertently) even printed two copies of our boarding passes. They didn’t have our TSA Known Traveler Number on them, but we figured that since we were planning to check suitcases we’d deal with that when we went to check our bags.

We got up at 0500, had breakfast, did our last minute carry-on packing, smooched the kittens (oh yes. any very occasional readers will need to know that Flitter and Pogo are both gone, we remodeled the upstairs of the house, and we’ve got a new pair of kittens. R.T. and Skooch.) and were just on the landing humping our luggage towards the front door when Andrew turned to me and said “I think my heart is doing something funny again.”

Very, very occasional readers (a.k.a. anyone with whom we don’t have frequent contact since I didn’t have the energy to write about that little cross eyed debacle at the time) will have missed the fact that in April, just before we were scheduled to go out of town for the first time in four years, Andrew’s heart developed an electrical anomaly called “Tachy/Brady Syndrome” which is where your heart rate speeds up and slows down abruptly for no particular reason whatsoever. Even to the point of stopping for several (the longest was 11 seconds) seconds at a time. Which involved investigating two hospitals’ emergency departments, one cardiac care unit, the emergency implantation of a dual chamber pacemaker and a (Jesus Christ in the DESERT!) $5000 ambulance trip between Burien and Tacoma. This did, of course, preclude us from leaving town for the first time in 4 years. 2022 has been a real barn burner of a year so far.

So when Andrew told me in late June that his heart felt funny the PTSD from April kicked in. I ran upstairs to grab a stethoscope (you *don’t* keep a stethoscope in your study at home? where do you keep your stethoscopes then?) and listened to what turned out to be a perfectly normal, steady heart rate.

Reassurances offered, we hoiked our luggage into the back of Anastasia’s car and we were on our way to the airport.
But the juju had been cast at that point.

We got to the airport. I got out. I got my purse. Andrew got out. We got our carry on and our two suitcases out of the trunk of Anastasia’s car. We walked to the check in kiosk.
Did you notice something? Did you notice any little deficiency?

I didn’t have the boarding passes.
The boarding passes had our airline confirmation number on them. And our flight number.
The lack of boarding passes, I didn’t know that I’d left them on the back seat of Anastasia’s car until we got to Albuquerque, was annoying but not fatal since we were going to have to get new ones printed with our TSA KTNs on them anyway. And I knew that I had all of the vital information about this trip because I’d very carefully placed every single e-mail that had been generated in planning this trip into a nice, new folder on the desktop of my computer which I then, at Andrew’s suggestion, had e-mailed to myself so I could access the file from my phone. Easy peasy, right?

Wrong.

Wrong because (and Andrew assures me that people who speak Computer will understand what a clusterfuck this is) for some reason Macintosh desktop computers automatically turn those types of folders into Zip files and one can’t un-Zip a Zip file on a mobile device. Or at least not mine.

So we got to the head of the line with our suitcases, a knowledge of our preliminary and eventual destinations, Andrew’s Known Traveler Number, and an e-mail on my phone which was full of information like my KTN, our airline confirmation number, our airline “Frequent Flyer Club” information (for which I’d signed us both up because it was free and of some sort of benefit to us that I have since forgotten), and every other contact and reservation number THAT NO ONE COULD READ.
That’s when I started to hyperventilate.

The nice lady at American Airlines’ ticket counter found our confirmation number and, of course, our flight numbers. She checked our bags. She re-printed our boarding passes. Andrew’s had his KTN on it. Mine, of course, did not. Nice Lady did suggest that we go to the TSA Pre Check line at security, explain the situation, and see whether or not they could find me in their files.
We did. They couldn’t.
That’s when I started to have a panic attack.

I have spent the last two years in a more or less constant state of pronounced germ phobia. I distinctly remember Matt saying something along the lines of “Don’t get this, you’ll die.” (paraphrased, of course) when talking to Andrew about Covid in early 2020. And I had dealt with the fear of leaving our untidy, but distinctly antiseptic, home by taking every precaution I could to be sure that my immune suppressed husband was going to have as minimal contact with The Great Unwashed as could be managed during this trip. The fact that we were standing at the head of the TSA Pre Check line with the nice dude telling me that he had no way of confirming that I had a KTN and Andrew telling me that he wasn’t going to go through the Pre Check line and leave me to go through the regular security line completely blew every gasket I had.

Because he is very familiar with me by now and because he does have a marked degree of authority with regards to the workings of my brain, Andrew did manage to get me calmed down to the point where we actually got through security and to the departure gate. I took a Xanax, we got on the plane, and we figured that the fucks had all been up for this trip.

I just went to thesaurus.com to look at synonyms for “chump” but didn’t like any of the options. The best option I can come up with besides “chump” is quell naiif.

7/6/2022

Prelude

MargaretMargaret
Filed under: @ 4:31 pm

We should have known better.

We thought “Oh, we’ll fly.” Then some obscenely ignorant trumphumper judge decided that the FAA and airlines requiring people to wear masks on airplanes was In Violation of Human Rights or something so we decided we’d drive.
1500 or so miles between Seattle and Santa Fe could, with two drivers, be covered in three semi-marathon driving days which would leave us with five days to hang out with family. Not a lot, to be sure, but sufficient. Even though it would mean that we’d only have one whole day to see Nephew Sam (there’s a niece Samantha and they both go by “Sam”) and his family.

But Andrew got sick in late May/early June and we spent five days between three hospitals, three emergency departments, and two multi-night admissions. Not Covid. Not anything respiratory at all in fact. I’m not sure anyone has satisfactorily explained how he got a urinary tract infection but he did and since a preliminary blood culture was (erroneously as it turns out) positive, there was a lot of arm waving and IV antibiotics to be dealt with.

After which time Andrew was really worn out and I wasn’t terribly far behind him.

We decided that neither of us really felt confident that we had the energy for a three day drive and since we also didn’t to face the possibility of either of us getting sick or completely exhausted in the middle of Goatfuckegypt Utah we decided we’d fly.

We didn’t make that decision in a complete vacuum. Both Andrew’s GP and his nephrologist said that they thought things should be relatively safe so long as we were both wearing high test PPE and kept up with bleach wipes and hand sanitizer.
So tickets were purchased and hotel reservations were made.

We signed up for TSA Pre Check too. We figured the less time we had to spend in lines the better.
Chumps.

What Fate Decided

MargaretMargaret
Filed under: @ 3:52 pm

Yeesh. Two fucking years of pandemic. Two years of wiping down incoming groceries and stripping off work clothes in the laundry room after I get home. Two years of masks, hand sanitizer, take out, social distancing, fucking ZOOM CALLS, “pods”, and not touching anything or anyone ever.

And then came the vaccinations. I got vaccinated as soon as I could figure out how to make someone justify vaccinating me.
Andrew got vaccinated as soon as he got the high sign from the transplant center.
And we got our boosters.
And we got our boosters boosted.
And Delta and Omicron passed us by.

And we thought… Surely a quick trip. Surely since our family is vaccinated. Surely if we’re masked and we’re careful and we maintain rigorous hand sanitizing protocols.
Surely this isn’t a good idea, but surely…. it can’t be a bad one.

Fate, as it turns out, is an acid pickled, fire breathing, menopausal bitch.

Andrew and I enjoyed our previous trips to Santa Fe. Staying with Meg, exploring the city – although granted with a knowledgable guide – seeing an environment so very different from ours.
We were getting a little house bound and wanted to see family so when the idea came up of everyone meeting in Santa Fe for the first time since Tony died and the estate was closed in 2018 we thought… We thought “Well, why not?”

This is why not.

12/27/2019

Chapter 14: You Must Be This Vaccinated…..

MargaretMargaret
Filed under: @ 8:38 am

I don’t know why it never occurred to me that people with transplanted organs need to be immunosuppressed life long. Somehow, despite my scientific training, I had it in mind that after the transplanted organ had been in-situ in the recipient for enough time, the recipient’s system would replace the cells that wear out in the transplanted organ making the transplant “self” after a certain amount of time.
But that’s not an accurate vision.
If worn out or dead organ cells could be replaced by a person’s own new tissue there wouldn’t be the need for transplants that there is.

So for the rest of Andrew’s life he’ll have a piece of Curt inside him and his immune system will be trying to remove it.

It’s made me more than a little anxious being that I work with the general public.

I don’t like getting vaccinated. My mother tells me that when I got my first measles vaccine at the age of 2 or so I spiked an enormous fever and was miserable for 2 or 3 days. It was that reaction, and the fact that the Bellevue school district sent out a notice prior to the beginning of the school year in 1982 or so indicating that kids vaccinated for measles prior to 1971 would need a booster, that made Mother grab me by the scruff of the neck and haul me off to the doctor to get a booster that summer. I resented the fuck out of it at the time, even though I didn’t spike an enormous fever, and I resented it with a great deal more vigor when the same notice came out the next summer. Protest as I might that I’d gotten a measles booster the previous summer, Mother didn’t remember and somehow (thus adding to the persistent resentment nearly 40 years later) the previous year’s booster hadn’t been noted in my medical record. So I got a measles booster for the second summer in a row.
Beyond that persistent resentment, I’m allergic to horses. Granted that allergy only pertains to tetanus vaccines (the genesis of tetanus vaccines is horse serum), but that little fact makes tetanus vaccines a trial for me. My arm swells up and aches for 3 or 4 days and I run a low grade fever which leaves me achy, listless, and snappish.
Besides, says my previous self, I’ve HAD all the childhood diseases. That’s not entirely true. I had scarlet fever, then mumps and chicken pox in quick succession. And I’m not afraid of the flu.

Except now I am.
I got my first flu shot a little over a year ago. I was cranky about it but resigned. When my MD checked my vaccine titers this spring and found me wanting (HOW?!) in antibody levels to measles, I was a little more cranky. Especially when I realized a month later that the sore knot in my left tricep was residual inflammation from the measles vaccine.
I got my second ever flu shot about a month ago. Followed, probably too quickly, by my first ever shingles vaccine about two weeks ago. I am made persistently resentful by the fact that my left tricep and deltoid will probably continue to be achy just in time for me to get the booster for the shingles vaccine.

I am emphatically pro-vaccine. Vaccines have been safe and effective at preventing disease since the 1600s. I am also maniacally frustrated by those anti-scientific twee folk who claim that vaccines are the root of all evil when really the root of all evil is a slavish repetition of ‘facts’ that aren’t substantiated by anything or anyone with any reason.

But it doesn’t mean that I like getting them!

That said, vaccines and people’s vaccine status, have become high priority in my life. Andrew’s company employs anti-vaxxers. And because vaccines are part of a person’s medical information, an employer can’t really ask whether or not their employees, or their employees’ children, have been vaccinated.
So Andrew is restricted in which of his company’s employees he can interact with personally. This is fine, actually, since the folks that he needs to interact with the most are mostly the ones he’s known the longest and who are friendly enough with him to reveal their vaccination status. It’s fortunate, too, that Andrew’s job has mutated over the years to the point where he does’t actually need to be physically present at the company offices terribly regularly. Also, technology. A lot of the in-person stuff can be done via Skype or some other computer/video assisted tech.

Me, however… Oy. I’m familiar enough with my staff, and we’re a small enough organization, that I know my co-workers have been vaccinated. Staff is safe. Clients are another matter. That said, since we see a lot of animals to administer vaccines I suspect it’s probably rather rare to for their owners to be anti-vaxxers.
I don’t ask, of course. But I do wash my hands and use hand sanitizer before I leave work.

It makes interacting with the outside world a little anxious. When Meg was here in October we took her to Vashon island to see the Betty MacDonald farm (from which we were promptly slung out, but that’s another story) and since the Vashon school district has one of the lowest vaccination rates in the state I was more than a little concerned just about being there.
Similarly Lopez island. Andrew and I spent some time in the San Juans as part of our honeymoon and we’ve wanted to go back, but since Lopez has the lowest vaccination rate in the state I don’t think we’re going to be repeating that trip.

Immunosuppression isn’t going to keep us from traveling, but it’s definitely going to influence our choices of destination.

12/1/2019

Chapter 13: Now What?

MargaretMargaret
Filed under: @ 9:03 am

I never meant for this to be a blow-by-blow detailing of the whole surgical/hospitalization experience so I’ll only fling in a few details of the 3 days that Andrew was hospitalized.

First being the utter and complete blank confusion on the faces of the nurses in Andrew’s room when Curt, attended by Laura and one of his nurses, went wandering past the door to Andrew’s room proving that he could be mobile without falling on his face.
Being Curt, of course, he started belting out the Spam song.
Which is why Andrew’s nurses were a little, shall we say, disconcerted. I’m fairly certain that Curt’s nurse was convinced that he’d thrown a clot somewhere and was in imminent danger of falling on his face.
We got much the same reaction when Laura, coming to stick her head in and find out how Andrew was doing, stood outside Andrew’s door (door open, can’t knock) and called out “BURGLARS!”. *We* knew she was asking to come in, the nurse was utterly foozled.
*sigh*
It’s a sad thing when the younger generation has to be introduced to Monty Python.

While Andrew was hospitalized I learned that it is actually possible for one to run out of levels of Candy Crush. This isn’t to be an exegesis on Candy Crush or other freemium games, nor yet what I choose to spend my pin money on. I play Candy Crush because I find the puzzle solving challenge of the game to be calming, hypnotic, and highly addictive.
Anyway, running out of levels, right.
Literally. I’ve cleared more than 5000 levels of Candy Crush and was on a heck of a roll while Andrew was hospitalized. So much so that I got to a point where there were no more levels. Instead I got a message stating that new levels were coming soon. So I switched to Crunch Time.

The day after surgery I had to pull a Mamma Bear on Andrew’s co-workers.
(Steve, if you ever read this I’m sorry I was so crabby with you. I wasn’t crabby about anything you were doing, but crabbiness needed to happen.)
Andrew’s hospital packing included one pair of fleece jammies, two tank tops, the shorts, button up flannel shirt, and fleece socks he was wearing when he was admitted, a toothbrush, and his diabetic supplies. As well as two tablets, a mobile phone, appropriate charging stations for all of them, a multi-outlet strip, and half a dozen random cables that I never will know the use of.
Because Andrew had been in charge of the FP fall catalogue up until the day he was admitted to the hospital, he was part of e-mail and text chains about the catalogue and various other work related things.
I could literally see his blood pressure getting higher (multi-parameter vitals monitors can be handy sometimes) when he read some of them and then he felt like he had to respond. Which is maybe not the best thing to do when you’re pinned to two or three different machines and up to your follicles in dilaudid.
I knew that I had absolutely zero chance of removing his electronics from his ken so the only thing I could do was to have the office manager stop the flow of work related information on his end.

So I did.

Emphatically.

But they discharged Andrew eventually and we got to go home for dinner and a night’s sleep in a proper bed without either being checked on by a nurse no less often than every four hours AND without Andrew having to hook himself to an annoying laser printer.
Pogo was beside himself to have us home.

The pre-transplant folks are superb at training transplant recipients for the pre-surgical stuff.

The transplant folks and the hospital transplant staff are superb at training transplant recipients for the hospitalization and surgery part of it.

The post-transplant folks take the bloody cake!
We had one day at home before we had to start going to Andrew’s post surgical appointments. Two lab draws and two doctor’s appointments (on different days than the lab tests) per week.
Have I mentioned recently how glad I am that we’re fortunate enough to live within driving distance of a major transplant center? We met a dude during that first four weeks that had had surgery only two days after Andrew did. Dirk and his wife live in Tacoma so they were staying in a long term stay hotel in Seattle instead of driving back and forth. I can’t even BEGIN to think about how much more complicated their experience had to have been!
Anyway, the post-transplant folks.
We walked into the transplant center for that first appointment and while none of the staff knew us on sight (yet)… Damn they were organized. The right people came to see us to give us the information that we needed. They had all the right paperwork in the right place — although granted some of that was my doing (more on that later) — and before we left we were scheduled for something like another two weeks worth of visits. We got to see the transplant nephrologist who was cool about showing me the lab results and discussing them on a professional level with me (that earns you a star in any veterinarian’s book, by the way).
One of the things that Andrew was handed before he left the hospital was a Big Bag Of Post Transplant Information. Two bags, actually. One containing a binder full of information and monitoring parameters, along with a pile of things like sunscreen, hand sanitizer, a blood pressure machine, a thermometer, and other medical stuffs of which we now have multiples. The second bag contained medications. LOTS of medications.
Because I am who I am and I deal with stress and tension by wanting to have all the facts in order and all the details of everything laid out in plain view I’d taken the binder, removed all the extraneous stuff we didn’t need (information about pancreatic transplants for instance), added tabbed dividers to each section, and put in some additional Andrew specific stuff that I thought might be helpful.
Every single person who saw what I’d done with the binder thought it was a. brilliant and b. (although they didn’t say this to my face) absolutely hysterical.

We got to be very familiar, not surprisingly, with the folks at the transplant center including some of the patients who had had surgery around the same period of time.
The second day we were there Dr. Transplant Nephrologist’s medical assistant commented on how much better Andrew’s color was that day as compered to the previous visit. I’d noticed the same thing — he’d gone from a skimmed milk sort of color to being pink again — but Andrew, not surprisingly, hadn’t. It wasn’t until we ran across Dirk from Tacoma while we were waiting in line for Andrew (and Dirk) to have their lab tests drawn that Andrew realized that difference. We first met Dirk and his wife on their first visit to the transplant center. At which time Dirk, who’d had a kidney and pancreas transplant and had spent several days in the ICU with a bout of pancreatitis, had a greyish skimmed milk sort of color to him. When we ran across them again waiting for the lab technicians Andrew actually didn’t recognize Dirk he was so changed. Once again, there was the difference between skimmed milk and someone who actually feels good.
I don’t think I ever realized that dialysis doesn’t normalize one’s kidney function. When Andrew’s kidney values dropped from about 3 times normal to about 1 and 1/2 times normal in the first 24 hours after the transplant it was obvious to me how much better he was feeling.
Dirk had been a Type 1 diabetic since the age of 7 and had been waiting for a kidney/pancreas transplant for something like 4 years. The visible-to-a-virtual-stranger difference in his quality of life within such an astonishingly short period of time is yet another reason for me to be in awe of the fact that this crazy ass organ transplant thing actually works.

And that the person whom I love most in the world was able to take advantage of that.

11/24/2019

Chapter 12: Monday, August 26th. The Aftermath

MargaretMargaret
Filed under: @ 1:20 pm

Laura and I met up in the surgery waiting area.

Having had experience with the surgical waiting areas of several different hospitals I can say with authority that the best one in the area is at Valley Medical’s main hospital in Kent. It’s a large, open area with relatively minimal back and forth traffic. Instead of having “artfully arranged” tables, chairs, and comfy spots to sit there are separate open… well basically they’re caves. Three walls and a ceiling separating you and your space from everyone else and their space along periphery of the room with tables, chairs, and comfy spots to sit. There are also less enclosed, more centralized tables and chairs, or comfy spots to sit. Basically if you want privacy you can cabbage on to one of the alcoves and have a table, chair, and someplace comfy to sit and it’s your territory for as long as you like. If you don’t mind being “in public” you can sit outside the alcoves. There is one, and ONLY one, TV although there are easy sight lines to it from many different spots throughout the area. The restrooms are close and boldly marked, there’s a coffee shop and a gift shop both within a few steps. The addition that makes me give the trophy to Valley, though, is the water feature. There’s a 10-15 foot textured glass wall with water running down both sides into a tiled pool with a raised edge where you can sit.
When you’re in a surgery waiting area you’re looking for close and easy distraction (gift shop, TV) for when your Big Bag Of Distraction isn’t enough. You’re looking for a comfortable area (options for alcoves or individual table/chairs or comfy spots) to set down the inevitable stuff you’ve brought with you. You absolutely Do. Not. want to be disturbed by half a dozen different televisions playing half a dozen different ideas of “ideal distraction material” because whatever it is it won’t be distracting to you and the antiphonal chaos created by the sound of six different TVs all at once is highly irritating. You’re looking for quick and easy access to food/drink and restrooms (both within sight so you don’t necessarily have to pack everything up and give up “your” spot when you have to go have a pee). And you’re looking for something to mask the terrifying idea that you’re in a hospital and someone you care about is potentially in danger. The water feature at Valley covers a lot of the hospital noise and although there’s a faint miasma of chlorine rather than a nice outdoor water smell, having something to splash and splish around is soothing.

Swedish First Hill isn’t bad, especially considering how old the building must be, but there are definitely some deficiencies.
There aren’t enough electrical outlets for one. And while someone obviously has made the attempt to create a “private alcove” like experience, the sofas are arranged in U shapes with a single coffee table and multiple end tables meaning that unless you’ve got a crowd waiting with you you either have to share your U shaped sofa arrangement with other families (ick) or you have to be a real butthead and spread out to cover all of the sofas in your U. The sofa clumps are backed up against each other with a small (roughly 12 inches) shelf for lamps, magazines, etc. in between which means that you’re sharing your personal space with someone in the next sofa clump (ICK). There aren’t enough tables to sit at, the restrooms aren’t within visual range so there’s a lot of shifting around, and while there isn’t a television, some halfwit put a children’s play area in one corner which means that people bring their kids to sit with them instead of doing something on the kids’ level to keep them occupied while they’re waiting for someone in surgery. By this I’m not saying that people with families shouldn’t have their kids waiting for them while they’re in surgery. I just mean that the adults who are in charge of the kids should seek out something on the kids’ level to keep them occupied while they’re waiting instead of expecting the kids to wait, and not disturb the other waiting adults, in a space that’s more designed for adults.

Where was I?

Oh, right. Laura and I waiting.

They’d taken Curt to surgery first, or so I deduced from the fact that when I got to the surgery waiting area Laura had already staked out a sofa and had even managed to lay claim to the coffee table. Laura has recently discovered knitting so she and I sat and knit at each other. Sometimes we talked, sometimes I listened to my audiobook, sometimes she read. I had my blueberry muffin cake, she had a Starbucks protein pack.
And we sat.
And we sat.
And we sat.
It was past noon when Curt’s surgeon came to talk to Laura. Laura was able to go directly to be with Curt, even though she kindly asked if I wanted her to stay until Andrew was done, so she left. Since the rest of our sofa clump had been occupied by a group of people with a pair of kids I packed up and went to go find a quieter stretch of ground, ideally with an electrical outlet since the charge on my tablet was getting a little feeble.
So I sat.
And I sat.
And I sat.
It wasn’t until almost 2 p.m. that Andrew’s surgeon came up to talk to me. I have no idea what he said and no idea what I replied. I was absolutely starved and had to give up my fairly prime spot (table, two chairs, and a convenient electrical outlet) to tell the surgical waiting coordinator (or whatever he’s called) that my patient was in recovery, if someone needed me they’d have to call my mobile, and where was the nearest food?
I got some lunch then came back upstairs to wait more. I snagged a sofa, at least, and was obsessively playing Candy Crush. Then I was obsessively playing Crunch Time. Then I was obsessively playing Words.
It’s all about distraction, but when you’re that wound up nothing distracts you for long. I went back to knitting and audiobooks for a while, then games, then my novel.
I got up. I asked the goon to call up to recovery. I sat down.
I played games, I knit.
I got up. I asked the goon to call up to recovery. I sat down.
It wasn’t until nearly 4:30 before I was told I could go back upstairs again.

They’d just gotten Andrew back into his room. I cut through the crowd of nurses, he turned his head towards me and I burst into tears.

I don’t remember much about the rest of the day. I know at one point after all the nurses and other to-do had gone that Andrew turned to me and told me that I didn’t have to stay and watch him sleep. A statement with which I firmly disagreed. I know Matt stopped by on his way to work and that the on-duty nurse who was fiddling with Andrew’s IV pumps was amused by his “Pro-Vax” button (Buy one. Profits go to an immunization information organization that helps promote the safety and efficacy of vaccines to various groups. https://store.dftba.com/collections/mcelroy/products/pro-vax-enamel-pin).

The next thing I remember is being at home eating dinner and watching The Grand Tour.
Pogo was on my lap, I’d finished my food and was about halfway through episode 1 of season 1.
I woke up two episodes later.

11/17/2019

Chapter 11: Monday, August 26th. Happy Transplant Day

MargaretMargaret
Filed under: @ 8:04 am

We normally retire relatively early. Even before Andrew’s need to hook himself up to an annoying laser printer for 8-10 hours every night, we’ve never been late night people
Probably in large part due to the fact that I am physically incapable of staying awake past about 10 p.m. unless I am forcibly prevented from assuming a sitting or lying position and closing my eyes.

The evening of the 25th of August, however, neither of us saw any use in going to bed at our regular time. We realized that neither of us was going to sleep well and since we had to be at the hospital at 5 a.m. we were planning an alarm time of 0300.
Why no, in fact, it doesn’t actually take an hour plus to get from our house to Swedish First Hill, especially not at 0400, and we were familiar with the route, but this was emphatically NOT a date that we wanted to be fashionably late for.

So that night Andrew took his prescribed full body shower with chlorhexidine body wash — and why does Hibiclens stink so badly anyway? I use multiple iterations of chlorhexidine disinfectants every day, including surgical scrub, and none of them have that artificially floral chemical smell that Hibiclens does.
Clean jammies, clean sheets.
We stayed up until a little after 11 when I, with half a Xanax on board, passed out entirely until the alarm kicked us out of bed at 3.

I fed the cat, dressed, and ate a piece of toast. Andrew took another Hibiclens shower.
Andrew collected his wheelie suitcase, I grabbed my purse and the Big Bag Of Distraction, containing two different knitting projects, my tablet, a paperback novel, coloring book and a collection of colored pencils, my iPod with multiple audiobooks, and a container full of blueberry muffin cake, and we were off.

In fact, at a little before 4 a.m. on a Monday it takes far less than an hour to get from our house to Swedish First Hill. It’s probably the one time of the day when that can honestly be said.

So at 4:17 we wandered into the lobby at Swedish, went to the registrar — what a miserable job that must be at that hour of the day — registered, and were told to report to the 11th floor.

I would like to say that they put either Andrew or Curt in room 1142, but they didn’t. Andrew was in 1145 and Curt in 1147 (although we didn’t know that at the time).
A flurry of activity including Andrew stripping, a full body chlorhexidine wipe down, IV catheters, and a number of various fluid samples.

Then.
We.
Sat.

I don’t resent the “hurry up and wait” part of that day. It was annoying, yes, to have to get up at well above the ass crack of dawn so that we could rush to the hospital only to have to sit and wait for multiple hours before they could start this whole circus. I know that behind the scenes things were happening at a remarkable, and probably quite frantic, pace.
I do resent the fact that there wasn’t any place for me to get even partially horizontal so that I could sleep some too.
Andrew nodded off for a while, easy when one is in a bed, and I napped periodically sitting in the chair.

It was probably about 7:30 before anesthesia came to get Andrew. We went downstairs in an entirely different elevator than the one we’d come upstairs in. Which, for the record, was an entirely different elevator from the one we’d come up from the parking garage in. I really wonder if there is one employee in that building who has seen every floor and can negotiate without having to stop and look at a map.

Once we were in the realm of the presurgical anesthetic suite…..we sat and waited.
Met the anesthesiologist, a dude with a most amazing mustache who was a little put off by my request to have the actual names of the drugs that he was going to be using.
Met with the surgeon.
People popping in and out of the cubicle like bloody hummingbirds then *poof* the driving team was there, they were moving Andrew along, and I found an elevator and went upstairs to wait.

11/9/2019

Interlude: Hospital Starbucks

MargaretMargaret
Filed under: @ 8:10 am

I got up close and personal with two separate Swedish hospitals over the period of a couple of months this summer.

I have to say that whoever came up with the idea of putting Starbucks coffee bars in the lobby of main hospitals is an absolute fucking genius for a number of reasons.

First, and most obviously, financial.
Any time, and I do mean ANY. TIME. I’ve been at either Swedish First Hill or Swedish Cherry Hill this year the Starbucks has had a line. My understanding is that the Cherry Hill Starbucks doesn’t operate 24 hours a day and I’m not *positive* that the First Hill Starbucks does (although they were open and hopping when we got there for surgery at too-damn-early A.M. on August 26th) but that’s beyond the point. Every time we were at a Swedish hospital with a Starbucks that Starbucks was SRO.
These branches aren’t making a major part of Starbucks’ profit over all, but I’m sure they are high performers in the “average daily take” sweepstakes.

Secondly from a psychosocial aspect.
No one except the employees that is in a hospital on any given day is there without stress, anxiety, fear, pain, grief, or angst. An easy, calm, every day experience -smell, interaction, taste- is a great appeal to the basic nature of such a discombobulated person. Hospital Starbucks don’t cure all ills, but having a slice of what to many people is every day life in an environment where pretty much nothing is an every day experience is, again, fucking genius.

And finally from a marketing standpoint.
Hospital food isn’t, popular myths aside, worse than any other institutional cafeteria food. It’s just really hard to make food that is produced to appeal to the palates of the largest number of people taste like anything other than mass produced food. Granted that Starbucks’ food (coffee, juices, etc. etc. etc.) aren’t much less mass produced than that which you would get at the hospital cafeteria, but the difference is that Starbucks is trying to make a profit off of their products. Not that the food conglomerates that manage hospital cafeterias aren’t interested in making profits, but they’re making profits off of a captive audience. Their mass produced food can be as run-of-the-mill as hell and they’ll still make a profit so long as they’re not actually poisoning people. Starbucks, regardless of where their outlets are placed, is trying to attract people who have an option of where to spend their, let’s call a spade a spade, fast food money. The bottom line being that if you have a captive population and that population has the option of choosing your packaged but familiar in taste and quality foods (even if they are only marginally better than the alternative) over taking a chance with cafeteria style “cooked right here!” (cough) food, a large portion of them are going to go with what’s familiar. And they’ll knock you down to get to it. The quality of the food has a certain amount to do with the financial success of these hospital based Starbucks outlets I’m sure. I am, however cynic enough to feel that many people would opt for Starbucks’ products even if they were dreck given the choice between a hospital’s cafeteria and a familiar “non-hospital experience” option. It’s all about the marketing.

11/3/2019

Chapter 10: The Swedish Saving Throw

MargaretMargaret
Filed under: @ 7:37 am

The administration at Swedish Medical Center may have its downfalls (what medical administrative authority does not?) but their medical and patient outreach people are absolutely top notch.

How else can one explain the fact that I left work at a little after 3 p.m. on Thursday afternoon and by the time I got home about 20 minutes later Andrew had spoken with the transplant coordinator of his team and she’d managed to shoehorn him into the schedule for the cardiac catheterization lab for the next day?

I submit that if we’d run across the same glitch -glitch, what a paltry little word for such a major upheaval- with the UW transplant service we’d have had to wait several weeks to a month before the test would have been scheduled.

As it was though…. 24 hours.
It was 24 hours of panic, a lot of frenzied e-mailing, apprehension, chaos and confusion, but 24 hours nonetheless.

We were at the Swedish Cherry Hill campus at 3p.m. the next day. Andrew was scheduled for angiography at 5. The regional head of cardiology, the specialist who’d just happened to be the one on call for that day, came to talk to us about the procedure at about 4. He explained that they were running a bit behind schedule, but they’d absolutely be able to get Andrew done that afternoon. We indicated that we really didn’t care what time the angiography was done so long as it got done that day and Dr. Cardiology assured us that it would be.

Then we heard him on the phone out in the hallway. Wheeling. And. Dealing.

The upshot being that Dr. Cardiology arranged with the scheduler for the cardiac catheterization lab and at least one other specialist that since Andrew wasn’t going to be hospitalized overnight and the *three* patients in front of him on the list for the catheterization lab that day were going to remain hospitalized overnight, Andrew would jump the line and go next.

*BING* And so it was.

I went down to the waiting area, conveniently close to the in-hospital Starbucks, plugged in my iPad and my headphones and spent 90 minutes or so frenziedly playing Candy Crush and sucking on an iced chai latte. In general I am a little jaded about Starbucks. I don’t really drink coffee, there are WAY too many Starbucks EVERYWHERE and my understanding is that their coffee, at least their “coffee bar” coffee, kind of caters to the tastes of the lowest common denominator, but I do love me an iced chai latte.
We all have our weaknesses.

Got a call, went upstairs (weirdly to the geriatric neuro ward) to the room where they’d stashed Andrew for post-anesthetic recovery and monitoring. And we proceeded to sit out the two hour post “you’ve just had a great enormous catheter shoved into your femoral artery and we want to be sure you’re not going to blow a gasket and blow up like the Sta Puft Marshmallow Man” waiting period.
Andrew, having heard my report of a Starbucks in the lobby, insisted on coffee. It was dinnertime anyway so I went downstairs, got a couple of sandwiches, the requested coffee (decaf) and came back in time to catch Dr. Cardiology coming by and telling us that the angiography looked good.

We’d known that Andrew had a blocked coronary artery. The angiography that had been done for the UW workup a year earlier had outlined that, but had also indicated that adequate collateral circulation had developed and that the cardiac muscle supplied by that artery was healthy.
This year? Another indication from the universe that the transplant was meant to be. Dr. Cardiology told us that the collateral circulation around the minorly blocked artery was improved over where it had been last year.
The upshot being that Dr. Cardiology personally was going to call the transplant surgeon with his recommendation that the transplant go forward. Dr. Cardiology noted that he’d also be talking to the transplant coordinator, but he wanted to tell us first so we wouldn’t have to wait to hear the final decision until the transplant coordinator called us. Normally we’d have to wait to hear the news until he’d made his official report and sent it to the transplant team, but he knew that time was running short and he didn’t want us to have to wait and worry any longer.

Seriously. Swedish medical personnel? Absolutely super people!

Things started moving rather quickly at that point.
Dr. Cardiology called and spoke with the transplant surgeon. Dr. Cardiology then called and spoke with the transplant coordinator who was waiting for the “go” sign from the transplant surgeon.
Transplant surgeon called transplant coordinator, transplant coordinator called Andrew.
During all of this we, in an absolute tidal wave of relief, were sending text messages and e-mails to everyone that we’d sent panicked “it’s off” messages in the previous 24 hours.
All with Andrew still lying flat on his back because he was still under orders to stay calm and flat so his femoral artery didn’t blow up.

And as soon as the transplant surgeon and transplant coordinator had the official “GO” from Dr. Cardiology (and as soon as the two hours “you haven’t blown up like the Sta Puft Marshmallow Man” waiting period had passed) Monday the 26th was back on.

10/27/2019

Chapter 9: Thursday, August 22 3:25 p.m.

MargaretMargaret
Filed under: @ 8:49 am

From the middle of July until the end of September my hospital was playing host to a very green new graduate DVM. His degree still squeaks when he turns around too quickly.

Dr. New was helping out while the other associate was on medical leave and he was intended to continue helping out during the time that I was out surrounding Andrew’s surgery.

We, the other two doctors and I, decided that we’d not be comfortable with leaving Dr. New to be doctoring on his own so we’d arranged our schedule so that he was on duty only when one of the three of us was also on duty. Not that we thought him incompetent, more that when you’re a brand spanking, and very squeaky, new doctor it’s helpful to have someone off of which you can bounce ideas, diagnoses, and treatment options.

I was standing at my desk in between appointments. I’d purposely scheduled my afternoon light that day because I’m the DVM in charge of the hospital’s control drug supply and I wanted to take most of the end of the day to do a control drug inventory. I try to get the inventory done at least once a month (Shhh! Don’t tell the pharmacology wonks. Their opinion is that a multi-DVM hospital should have a control drug inventory done once a week.) and I thought that a very careful inventory would be ideal just before I was gone for a month. I also didn’t want the tail end of what would be my last day at work until early October to be clogged with patients that I’d be starting to work up then having to transfer to another DVM.
So I had a few appointments left on my schedule for that day. Dr. New had a full appointment schedule that was intended to keep him occupied until closing.
I was discussing options for diagnosing and treating a difficult bacterial otitis externa when my phone boinged. My text message sound is a very penetrating boing, so when my phone boings I want to get it to shut up ASAP.
I flipped over my phone while chatting about infected ears with Dr. New.

It is a common literary device to have your protagonist’s voice “just trail away into silence” when they’re shocked by something. I’d always kind of considered the idea a little -well fanciful isn’t quite the word. Fantastical is closer. Surely anyone can manage to at least complete a sentence regardless of how sudden or severe the shock.
I was wrong.

This is what I read:
“Surgery is off. They found another area of potential blockage. They want to do another cardiac cath first. Will call me with the schedule for that ASAP.”

I was literally incapable of coherent speech. Fortunately I have a couple of staff members who are very good at reading my moods and who are experienced enough that they know the diagnostic and treatment steps for simple medical issues. M caught a look at my face and towed Dr. New off into the other room while I shot out the back door (there are no private offices in our building, it’s a VERY small hospital) to call Andrew.
I called Andrew.
I called Dr. Boss who had been on the schedule for the day, but had gone home early with The Crud. Dr. Boss was asleep so I left a message for her.
I called the office manager who isn’t in the office on Thursdays. I told her I had to leave. Now. That I was going to have the front staff reschedule the rest of my day because I couldn’t be of any use to anyone and that I’d be in contact with her as soon as I could to let her know whether I really was going to be starting my leave the following Monday.

I went back into the building, went straight up to my senior receptionist and told her that she was going to have to reschedule the rest of my day because I was going home. My senior receptionist, fortunately, is also very canny at reading my moods and she could tell from my affect that Something Bad had happened.
I went into the treatment area to talk with my two senior technicians. M, who is a lovely girl and a talented veterinary nurse, is also one of the most insecure professionals I’ve ever run across. Looking back on it I can tell that she knew from the tone of my voice and from my actions that Something Catastrophic had happened and it scared her badly enough that she had made herself scarce.
So I talked to H, who is lovely, talented, and pretty much not scared of anything. I told her that she’d have to babysit Dr. New, that she should call our office manager if she needed anything and that I was leaving so I could go somewhere private so I could scream. Incessantly.

And then I packed up my things, got in my car, and drove home.

10/18/2019

Chapter 8: Thursday, August 22nd 1:17 p.m.

MargaretMargaret
Filed under: @ 4:53 pm

Again, verbatim from the SMS feed:

“How you doing?”
“Stressed out. There for three hours. Damn good thing I didn’t eat any breakfast because I was supposed to be NPO. If I had [eaten] I wouldn’t have been able to take the test.”
“Christ! Did they say anything?”
“Not yet. The results should be in this afternoon, though when they will actually call me is TBD.”

10/13/2019

Chapter 7: Wednesday August 21st.

MargaretMargaret
Filed under: @ 8:54 am

And I quote verbatim from the SMS feed on my phone:
“I have to fucking go back to fucking Swedish at fucking 715 tomorrow fucking morning to take another fucking cardiac stress test because the fucking surgeon fucking doesn’t fucking like the fucking fact that my last fucking test was done exactly one fucking year ago. Fuck.”
“Fuck, that isn’t going to delay things is it???”
“Only if they find any new problems.”

10/11/2019

Chapter 6: The Swedish Connection

MargaretMargaret
Filed under: @ 6:31 pm

I’m not certain who it was that recommended the Swedish Transplant Center to us after UW finished jerking us around. Probably Scot who, after all, has pretty impressive experience with organ transplant.

Regardless, we made our overtures to Swedish and got an appointment — one of those all day, talk to everyone from God on down appointments — pretty briskly.

From the get-go the impression we got from the Swedish Transplant folks was much, MUCH different.
At the all day UW appointment we were given the “here’s how this is going down” video to watch at home and then again with Andrew’s charming transplant coordinator. Meaning that if we had questions we had to write them down and figure out who to ask them to or ask them to a woman who really gave us the impression that we were a nuisance to her.
The all day Swedish appointment started out with a small group of transplant postulants and their support people and a moderator. We watched a very familiar “here’s how this is going down” video, but the moderator not only narrated the video, but would stop it and answer questions on the spot when someone had one.
Working through the UW transplant process we were left with the impression that we were being told “Here’s all the ways this can go badly, don’t screw it up!”. What we got from Swedish was “Here’s all the ways this can go badly and here’s what we’ll be doing to help you keep things from going badly.” They made it seem very much more like a cooperative relationship rather than a superior/subordinate relationship.

Every single medical person we saw that day was absolutely gobsmacked at the idea that the UW didn’t want to proceed with the transplant unless Andrew’s BMI was less than 30. Every. Single. One.
We got so many double takes and “A BMI of less than 30?! Really?!!” that we started betting whether or not the next person we saw would say those exact words.
But we ran through the lineup of nephrologists, pharmacologists, social workers, fruit bats, and crunchy frogs. We ended that day with the assurance that, pending the transfer of all of Andrew’s pre-transplant screening test results and all of Curt’s pre-donation screening test results, there didn’t seem to be any major concerns with proceeding with the transplant.

Which leads me to another point about which the UW transplant service can eat a dick.
When we first met with the transplant surgeon at UW he told us that if Andrew’s tests were all complete and we had a properly screened donor right outside the door that it’d still take two months before the surgery could be scheduled because their transplant schedule was so full.
(I have to pause here and say: “HOW?! With all the bullshit you pull to transplant only the healthiest of people who need a kidney transplant, HOW can the UW transplant service be that busy?!”)
We had our orientation meeting at Swedish in early June. The medical records and test results were all transferred by mid-June. Swedish cleared Curt as a donor in early July, and Andrew finished what we thought would be the last bits of the needed testing in mid July.
On August 8th Andrew sent me a text letting me know that the surgery was scheduled for August 26th.
Two months my butt!

10/4/2019

Chapter 5: The Gift of Life

MargaretMargaret
Filed under: @ 1:27 pm

I’ve done most of my writing about this process from the perspective of the kidney recipient and someone on the deceased donor transplant list.
If you’ve got a driver’s license you’ve been asked whether or not you want to be an organ donor. Your preference is listed on your driver’s license because not counting the current glut of donors deceased due to opiate overdoses, motor vehicle accidents are probably the #1 source of organs for people who need them.

(I’m tempted to pop in here with a joke about Invader Zim and more spleens meaning that you’re more human, but I’ll leave the low hanging fruit.)

Certainly if you don’t have any moral objection to it you should be an organ donor You’d be amazed at what can be transplanted, even from older people, in the event of your untimely death.

Untimely deaths aside, though, being a living organ donor is the most precious and most impactful gift you can ever give anyone.

When Andrew announced that he was going to eventually need a transplant he had offers from four friends, two family members and me. I don’t count Andrew’s brother’s as an “offer” because basically what David did was to pick us up at the Honolulu airport when we were visiting for Christmas one year and spend the entire trip from the airport along H3, over the Pali mountain range, and over to the windward side of the island explaining to Andrew how he *was* going to donate a kidney and Andrew *was* going to accept it. So it wasn’t really an offer in the classic sense of the word, but I’m not entirely certain what to call it besides incredibly sweet.

For one reason or another most of these very generous offers fell by the wayside. Andrew told me in no uncertain terms that I wasn’t allowed to put myself under consideration because he’d need me to be whole and mobile throughout the process and I wouldn’t be if I were recovering from surgery myself. This did not, of course, keep from contacting the donor registry service to start the process, but when Curt started looking like a more viable option, and when the donor registry people started disliking my family history of essential hypertension I dropped the matter.

Any transplant center that deals with living donors has two branches. The recipient’s medical/social/pharmacologic/social services and the donor’s, and never the twain shall meet. If you put yourself forward as a living donor first and foremost they look at you under a microscope to be sure that you’re neither being compensated nor are you donating under duress. Then the medical testing starts. Of course the transplant center is interested in having the best possible organ for the recipient, but they’re equally interested in having the best possible outcome for the donor. If there’s even a scrap of a predictable chance that you might have adverse complications from having an organ removed you don’t get to do it. I’m certain that there are sound medical and legal reasons for it, but I’m also impressed that, literally, the recipient’s medical team don’t know the donor and probably vice versa. I mean, certainly the physicians and surgeons on one side know the *name* of the person who’s on the other side of the process, but I know that Andrew’s medical team didn’t know Curt to look at and most of them didn’t even know the relationship between the two men.

Another interesting option for living donation, at least in the kidney transplant circle, is a chained donation. If person A needs a kidney and person B wants to oblige but isn’t an appropriate tissue match…. (Please don’t ask me the details on that. I have the barest understanding of the tissue matching process and if you want to know why I, as a medical professional, don’t understand this part of the medical process the answer is that the vast majority of my patients DON’T EVER HAVE organ transplants. That said, there is a feline kidney donor program at the veterinary school at U.Cal. Davis.) where was I?
Chained donations, right.
Anyway if A needs a kidney and B qualifies, but isn’t a match for A, the transplant center can reach out to other transplant centers to look for a match for B’s kidney. C gets B’s kidney and so long as D is a match for A then A gets D’s kidney. If D isn’t a match for A then the transplant center looks for E and F and so on. According to Swedish the longest chain donation to date is five kidneys. Just the thought of the logistics of that organization makes my head spin. 10 patients, probably at least three transplant centers, a couple dozen surgeons, thousands of support personnel, a centralized date book complex enough to need string theory to explain it, and all of it has to be coordinated and completed within the same 24 to 48 hour period.

Of all of the multitude of things that I’m grateful for with regards to this process, one of the largest is that Curt was not only an acceptable match for Andrew, but that we all live within a short (relatively) distance of all of the necessary services.

9/28/2019

Chapter 4: Eat a dick University of Washington

MargaretMargaret
Filed under: @ 6:16 pm

Cover it with malaria and leeches, sprinkle on some dengue fever and eat a big God damned jungly DICK!
(With apologies to Uncle Jeff for the use of the language and to Archer for the use of the quote.)

Andrew was first listed through the University of Washington’s transplant center because his primary nephrologist is associated with the University of Washington’s health system.

We started the process through UW. By the way, I say “we” because while it was Andrew having the tests done it was me that was driving him to however many of them required a driver and because the primary caretaker of the transplant patient has to attend more than one orientation session and at least one 8-9 hour series of appointments with everyone from God on down.

When we went to the first of these marathon appointments we were both a little put off by the transplant coordinator that had been assigned to Andrew’s case a woman named “A”.
Andrew’s beef started with A insisting that he have a pile of paperwork filled out, but then not giving him time to fill it out. A plonked us down in front of a video presentation and, granted, Andrew was supposed to be giving it his full attention, but when you’re dealing with an adult and you wish him to watch the video now and fill out the paperwork later you tell him that. You don’t, wordlessly and almost absentmindedly, twitch the paperwork out from under his hands as if you were removing a 6 year old’s finger from out of their nose. Andrew was supposed to have the paperwork filled out for the rest of the appointments that day and he never did have the chance to complete it because A never gave him the time to do it. I filled out most of it while Andrew was being examined by medical personnel.
My major issue with A was that she seemed disbelieving of my role as a medical professional. A was giving us the preliminary “pets are a constant source of contagion for an immunosuppressed person” speech and asked about our cats’ vaccination status. I told her that they were both fully vaccinated completely indoor cats. A asked who their veterinarian was and who had given them their vaccines. I told her that I had given them their vaccines and *I* was their veterinarian. Now to be fair I am interpreting A’s response to that statement based on her facial expression and not anything that she said, but when someone looks like they’re about to roll their eyes at you the fact that they don’t actually roll their eyes at you doesn’t change the expression on their face. I still don’t know what her issue was with regards to our cats and/or me being their veterinarian, but I did take them to work with me the next day and ran a battery of tests proving that they weren’t parasite ridden bacteria farms.
The rest of that appointment was pretty straightforward with regards to our interactions with the UW transplant service. The pharmacist, social worker, and financial advisor answered all of our questions. The medical personnel were polite and thorough. The surgeon, in fact, not only was enthusiastic about me being able to understand his medical jargon, but was quite interested in being able to discuss the organ transplant process with me from the standpoint of a surgeon. Near the end of the appointment the surgeon told Andrew that he needed to lose some weight. Andrew was carrying a lot of fat around his abdomen and abdominal fat, subcutaneous or intra-abdominal regardless, makes abdominal surgery more complicated. Or at least more annoying.
That, however, was all the surgeon said. “You need to lose some of this man-belly, but I don’t see any reason why we shouldn’t proceed.” I remember that part very clearly. This was also the surgeon who told us that even if all of the testing had been done and we had a properly vetted donor right outside the door that it usually takes at least 2 months to get from there to the surgical suite because they’re so busy doing transplants for people who are matches to deceased donors. Under the circumstances having 2 months warning, as it were, seemed perfectly reasonable. 2 months is plenty of time to get the rest of your life organized when you’re going to be spending a month in and out of surgical suites and recheck appointments.
So Andrew was placed on the deceased donor list conditional to completion of the required testing and, and I quote the paper work, “ongoing weight loss”.
Fast forward a few months. January to be exact. All the required testing was done, Andrew, who had lost 10 plus pounds, went in for another appointment with the transplant team.
Here’s where our serious complaint with the UW organ transplant center begins.
The interpretation at that January appointment was that Andrew hadn’t lost sufficient weight with the implication being that he had been given a specific goal – a BMI of 30 – and that he was deliberately being non-compliant about that goal. Andrew would continue to climb the deceased donor list, but he’d be put “on suspension” for 3 months. This meaning that should a good match come up during this time he’d be passed over, but when the suspension was over he wouldn’t have to start at the bottom of the list again.
Andrew was referred to a nutritionist, who basically suggested that he remove the skin from the chicken that he ate (we almost always eat skinless chicken) and start measuring the amount of olive oil that he uses when he cooks. As much as was possible for a guy who has other medical issues AND was prone to being anemic Andrew tried to increase his exercise. So for 3 months we kept on keeping on as much as was possible and Andrew got his weight down to the point where his BMI ranged between 30.5 and 30.9.
Come May and the follow up appointment with the U.W. transplant team Andrew was told that despite all he’d done his BMI was still too high, but they dangled the one last hope of a follow up appointment with one of the transplant surgeons as a Hail Mary. If the transplant surgeon was okay with going ahead with the surgery with Andrew at his current weight then he’d recommend that to the transplant team. The whole team has to be on board with the procedure. The surgeon’s opinion means a lot, of course, and the opinions of Andrew’s primary care provider and his primary nephrologist meant a lot, but if the whole transplant team doesn’t agree the surgery doesn’t get scheduled.

The appointment with the surgeon came and the world came crashing down. Andrew’s BMI was still too high, he needed to have a BMI *under* 30. The surgeon was too concerned about the excess abdominal fat being a predisposition for complications and postoperative infection to be comfortable recommending surgery.
This is bullshit by the way. I do abdominal surgery on obese patients all the time and while it is annoying to the Nth degree it doesn’t predispose to postoperative infection. Also the fact that Andrew had to be on steroids for immunosuppression during the transplant process was going to SEND HIS DIABETIC CONTROL INTO A TAIL SPIN (despite Andrew’s primary care provider having contacted the transplant team stating that he was, based on his experience over the previous 25 years, certain that it wouldn’t). The surgeon recommended that Andrew consult with the bariatric surgery service and undergo gastric bypass surgery so that he could lose a whole bunch of weight – like 80 pounds – and then try again.

Andrew called me when he got done with this appointment. I literally had to leave work in the middle of the day.

It would have been a month before Andrew could have gotten an appointment with the bariatric surgery service. Add a couple of months before gastric bypass would have been able to be scheduled. Call it a year of postop recovery and weight loss before Andrew would have been able to re-present himself to the transplant team again. And for all of this, round numbers, 18 months or so Andrew would have to be doing hemodialysis because ain’t no surgeon anywhere in the world who is willing to have a patient bathe their intestinal surgical incisions in peritoneal dialysis fluid and metabolic waste products every night. To say nothing of the complications of maintaining proper nutrient intake for a patient on dialysis while he’s only able to eat about a cup of food at a time.

Didja notice up above there where I emphasized that the University of Washington transplant service wanted Andrew to have a BMI of under 30?
Didja know that Dewayne “The Rock” Johnson’s BMI in 2015 (the latest information that my super fast Google search could find) was 34.9?

I would have thought that either Andrew or I had mis-heard at some point, that we’d really been told that Andrew needed to have a BMI under 40. Except for the fact that at one of Andrew’s appointments with A she told him the specific number of kilograms he needed to lose to bring his BMI from 31 into the 30 range. When Andrew told her that he could lose that amount in a couple of weeks she then said that the BMI needed to be *below* 30. Both of us remember different appointments on different days where different medical personnel had told us that the BMI needed to be under 30.

In summary then: the University of Washington’s organ transplant service gave us a list of very specific targets that needed to be hit prior to transplant EXCEPT one. The one target that didn’t get hit didn’t get hit because it was initially presented as a vague recommendation. When it became clear that a vague recommendation hadn’t been enough to scare us off they gave us a completely unachievable goal.

I believe the University of Washington transplant center’s promotional literature when it says that they’re the most successful transplant center in the U.S. I believe that they have the highest number of successful transplants in the nation because they refuse to consider anyone for transplant who has, as we call it in medicine, significant co-morbidities. If you’re a guy in his early 20s who has mashed his kidneys in a dirt bike accident then yeah, University of Washington transplant center is a good place to go. If you’re anyone else who needs a kidney transplant for any other reason don’t bother to waste your time.

So yeah. Eat a dick University of Washington transplant service. Eat an overflowing bucketload of syphillitic dicks.


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