Chapter 4: Eat a dick University of Washington

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.


So It’s Been a Month

Filed under: @ 6:32 pm

Thirty one days actually. Lessee, that’s nineteen trips back and forth between here and First Hill, 10 or so medical doctors, 20 or more nurses or medical assistants, and countless needles collecting buckets of blood.
It’s $150-ish in parking, two separate and very tightly packed parking garages, one carefully engineered sneaky back route that got us past the traffic most of the time, most of a tank of gas for my Forrester, and a $237 speeding ticket for driving 24 MPH in a 20 MPH school zone. Don’t forget to watch your speed when you’re driving in school zones in Seattle!

We saw Dr. Reddy today. We’ve been seeing Dr. Vadivel, the medical director for the transplant center, and last week we saw Dr. Gravetz one of the surgeons. Dr. Reddy, who looks an awful lot like the Dr. Reddy who was my freshman anatomy professor at WSU, but who isn’t related, is a nice dude with a very comforting manner. Andrew has gained 20 plus pounds since the surgery, all fluid weight. Since I’ve got to go back to work on Monday and, of course, since my medical knowledge says “Hey, you probably shouldn’t be gaining 20 pounds of edema this far post-op!” I’ve been a little wound up about the whole situation.
Dr. Reddy, however, spoke to me doctor to doctor and managed to get the information through my head that while this isn’t something that they expect a post-transplant patient to have, it’s not an UN-expected occurrence thus I don’t have to fuss about it too much.
Doesn’t mean that I won’t, of course, but it does mean that my level of fussing can be ratcheted down a notch.

Which should be a relief to *my* MD since I won’t need a refill on that Xanax as soon as I might have otherwise.

I’m sorry to have to go back to work. Sorry, of course, because I enjoy puttering around the house and spending time with my husband, but also sorry that I won’t be going to Andrew’s appointments with him. We’ve met some truly stellar examples of the human medical profession. I’ve been very impressed with the level of dedication and care that everyone has shown and I’ve been thoroughly gratified at how those people to whom I have revealed my profession have adapted their language. Because we’re “just” animal doctors veterinarians often get a lot of disdain from some human medical professionals, but not from any of these folks. Having a highly specialized medical professional speak to me with the respect they would another human medical professional is a little unusual in my experience. Most “RDs” (“real doctor” being a mildly pejorative term amongst veterinarians for those human medical professionals who look down on us as less medically educated than they are) are a little snooty or a little irritable about dealing with veterinarians, but I’ve not gotten a whiff of that in all the time we’ve been doing this. I’m thoroughly impressed.
I’m also sorry to be at a point where I won’t be able to keep up with some of the other transplant patients we’ve met. Dirk, for instance, got a kidney and pancreas transplant 3 days after Andrew had his surgery. Nice guy, formerly a type 1 diabetic and he’s still getting used to the idea of not having to check his blood sugar all the time. Dirk lives in Tacoma but he and his fiancee have been living in an extended stay hotel during all of this. Oh, and he shares Andrew’s birthday. To the point where the lab tech at the transplant center yesterday had to come out and confirm Andrew’s name to go with his sample because she’d just looked at the birth dates on the paperwork and wanted to be sure that the right paperwork went with the right samples.
And I’m also sorry that I have to go back to work and leave Andrew at home with this cat who will be ramping up his neediness by at least half. Andrew says that his co-workers already stop during phone conversations to ask which of his stuffed toys Pogo has killed this time (Pogo having a rather penetrating “I just killed this for you please come and praise me.” call) and I rather imagine that he’ll just get louder and/or more frequent for a while.

But we’ve got this pesky mortgage and there’s this pesky need for health insurance. The last real vacation we had was May of 2017. I do *not* count last spring’s trip to Hawaii as vacation since it is *not* vacationing to be doing what we were doing during that trip. By the time Andrew’s surgery came around I was ready to run amok slaughtering everyone in sight just to get some me time so having had a month of us time has been refreshing. Still not a vacation, but at least refreshing.

Chapter 3: How to Become Un-Listed

Filed under: @ 5:44 pm

To be fair, you don’t actually get removed from an organ transplant list unless you die or get a transplant. You just get “suspended”. How you can become suspended depends on your transplant center.

In the U.S. when you say “I’m on an organ transplant list.” it really means “I’m registered with UNOS through my transplant center.”
Here’s what UNOS has to say about themselves: United Network for Organ Sharing (UNOS) is the private, non-profit organization that manages the nation’s organ transplant system under contract with the federal government.
They’re a class act. They’ve got really strict rules about fairness and equality, they’re pivotal in promoting both deceased and live organ donation, a lot of their staff are volunteers, and they are awake and running every hour of every day of every year.
UNOS provides the organs and the basic guidelines of which organs go to whom. For instance even if an adult is a perfect match for an available child’s kidney, the organ will go to the child who is the best match on the pediatric list even if they aren’t as good a tissue match. The transplant centers provide the rules for everything else.

It’s the rules for qualification for the individual transplant centers that can trip you up. Each center has their own rules about who they’ll take on. Everything from your health insurance (will you have the same insurance for at least the next two years?) to physical health (do you meet that center’s “medically eligible” standards?) to financial and family status and whether or not you live in an area where you have access, or can get it, to the unusual pharmaceuticals that you’ll need for the rest of your life.
And the vaccines! Doux Jesus, the vaccines!
Just a wee tip for anyone out there who may be leery of vaccinations for whatever idiotic reason: You cannot get an organ transplant if you’re an anti-vaxxer. Period. Andrew got a TDaP and MMR booster, he was vaccinated for hepatitis A and B (and maybe C and E, I don’t know), he was vaccinated for shingles, pneumococcus, and a couple others that I lost track of. For a couple of months after Andrew was listed through the University of Washington’s transplant center every single damn time he came back from a doctor’s appointment he’d been vaccinated for something else.

Spoiler alert! Not all transplant centers are the same.


Chapter 2: Now You’re Listed

Filed under: @ 7:41 am

Now you’re listed. You’re registered with a transplant center. Now what?

Just being on a deceased donor list doesn’t mean you’re going to get anywhere very quickly. Kidneys are the #1 transplanted organ in the United States and for a person with O positive blood the average wait time is 3 to 5 years. Your wait time is back dated to the day you started dialysis so for Andrew that meant that when he qualified to be listed in mid 2018 he was already 6 months up on the list.
The two things that are likely to drive a person on the transplant list a little bit round the bend are that you never know where you are on the list and you can de-qualify for transplant at any time.

Not knowing where you are on the transplant list is a fun one.

Basically at any time on any day you could get a call from anywhere in the country saying “Hey! We’ve got a match for you, you’ve got to get to the transplant hospital within the next X hours.” So the transplant center has to have all of your contact information. You have to answer every phone call that comes to every phone number you’re associated with. That’s BUNCHES of fun in the era of scams, phishing, spam calls and phone bots. At work one day I ended up talking to a “Deputy Scott Summers from the Port of Seattle Sheriff’s Department”. I didn’t actually end up talking to him for too long though. For one thing, for those who aren’t comic book nerds, “Scott Summers” is the actual name of Cyclops from the X-Men. The dude who shoots beams of coherent light from his eyes that has to wear ruby crystal glasses to keep the beams of light under control? Yeah. Him. For a second, there actually isn’t a Port of Seattle Sheriff’s Department. They’ve got a police department, but no sheriff. It was probably one of those “you’ve got an outstanding warrant and you can’t go to the police headquarters because they’ll arrest you so pay your fine in gift cards from Walmart” scams. I told the dude so then hung up on him. Since I never ended up arrested I’m fairly certain I was right.

You have to arrange a driver and a backup driver since you can’t drive yourself to the hospital. They recommend that you pack a go-bag.

Being the type of person that I am, I got some solace from writing up an incredibly detailed handbook that could be printed out from any computer that we own about what would need to be done, who would need to be contacted, what paperwork was where, and how and when to feed the cats. But I *hated* being tied to my mobile phone. It’s inconvenient to carry if you’re in a full contact job like veterinary medicine, and I would legitimately have panic attacks if my phone rang when I was in surgery. And the whole “you should have a phone in your bedroom and the ringer should be kept on because a call for a match could come at any time of the day or night” thing was a certified drag. Since we were already in a situation where we were sleeping with Andrew’s dialysis cycler (whose alarm would go off with obnoxious irregularity) and Andrew’s insulin pump (whose alarm goes off much less frequently, but is still annoying), to say nothing of two alarm clocks, to have another potential beeping, shrieking, adrenaline burst inducing thing in the bedroom was not restful.
Neither of us ever did get around to packing a go-bag, but I did have fun explaining to my support staff at work about how, at some random time in the future, I’d be getting a phone call then leaving abruptly. I swear you could see the sparks and smoke coming from ears at that staff meeting.
The chaos that I caused with our head of HR was a lot of fun too.
Me: “Hey! I’m going to need to take a medical leave of absence at some point.”
Her: “No problem! Just let me know how much time you’ll need and when and I’ll get you the paperwork.”
Me: “I know how much time I’ll need, but I don’t know when the leave is going to happen.”
Her: “Well get the paper work done and give us as much advance notice as you can when you know when you’re going to be out.”
Me: “That’s the point. I *don’t* *know* when I’ll need to be leaving and there isn’t going to be any advance notice.”
Her: (static)
Heads of human resources departments are not much on spontaneity.


Chapter 1: The Transplant List

Filed under: @ 4:26 pm

Once a patient starts on dialysis and is registered with a dialysis center, provided that they are medically eligible they can be placed on the deceased donor transplant list.
Medically eligible being the two most important words in that sentence.

Practically this means that you can’t be 103 years old with a dickey heart, you can’t be an uncontrolled diabetic, you can’t be an alcohol or drug abuser. You can’t be a drug user of any type, and they’d prefer it if you didn’t drink at all. Smoking? Nope! Gotta quit. You can’t have hepatitis or any of another wide variety of chronic infectious diseases that immune suppression would make worse. You can’t have cancer unless you have renal cancer in which case you’ve got to get rid of the cancerous kidney or kidneys. You can’t be morbidly obese. You have to have proved that dialysis will help you. And you have to have the intellectual capacity, time, income, and insurance (thanks free market system) to manage the after care.
In “The Plague and I”, her book about her time at a tuberculosis sanitorium, Betty MacDonald (of Mrs. Piggle Wiggle fame) said, with regards to the intake nurse, “She gave me to understand that tuberculosis was something just a little special and she wasn’t sure she was going to let me have it.”
From a scientific standpoint I absolutely understand the meticulous testing that is required. This whole thing is, duh, a very major procedure and it will change your life. The transplant center wants to be sure that if they go through all the effort of taking a kidney (any organ, really) out of one person and stuffing it into another that the effort will be rewarded. They have to be really sure that they want to let you have it.
From the standpoint of someone who loves someone whose kidneys were failing it looks like an almost insurmountable pile of hurdles that you’ve just been asked to jump over.

One legged.

Physical exam, full blood count and blood chemistry panel. Abdominal ultrasound. Chest x-rays, cardiac ultrasound, cardiac stress test. Sometimes angiography. Colonoscopy. You have to have meetings with social workers, with nephrologists, surgeons, pharmacists, and with transplant center associated financial consultants.
Andrew and I were incredibly lucky that we both work for very understanding organizations. And had we been living anywhere less urban than we do — which is to say if we’d been living anywhere with less access to all of these services — getting to “medically eligible” would have been very difficult indeed.


Dialysis 2 Eclectic Boogaloo

Filed under: @ 12:23 pm

Having decided on peritoneal dialysis, but not, as yet, ready to begin dialysis, Andrew had to start learning about the process regardless.
Andrew’s primary nephrologist referred him to (another shout out) the Northwest Kidney Center for dialysis training and management. I am not sure whether Northwest Kidney is actually associated with a particular health care organization or if they are an independent entity taking any patient to whom they are referred by any nephrologist. I do know that Northwest Kidney runs a large number of dialysis centers around the area, but they’re not the only organization that does. Doesn’t matter. Northwest Kidney is a class organization, they employ bright, kind, dedicated people and are also on the list of people to whom we are eternally grateful. Andrew’s primary dialysis person was a lovely lady named Mae.
It was Mae’s job to stuff all the hundred thousand fiddly details of how to manage PD into Andrew’s head. Andrew went to a number of solo training sessions and Mae came for at least one home visit.
The home visit was to evaluate the patient’s physical environment to decide whether or not PD was a reasonable option. Mae had to evaluate whether we had, or could create, everything from safe storage for all the PD supplies, to an appropriate indoor area for Andrew to store his in-use supplies (amount of storage and cleanliness being two of the most important criteria), to an appropriate area for Andrew to actually perform the dialysis.
A PD patient has to have an area where he can be surgically clean (there’s a difference between “surgically clean” and “sterile”, but I’m not going to go into that right now) with easy access to hand washing and disposal facilities (a sink and a toilet), electricity, and all of the supplies that are necessary for a transfer of dialysis fluid. It’s a surprisingly large amount of space. Also, since the area needs to be able to be closed off from random visitors who might be in and out during the transfer process, the area has to have a door.
Our house was built in 1968. It has 1968 ideas of how much space a bedroom needs and how many electrical outlets are necessary. And even though the 1968 idea of how much garage space is necessary is perfectly fine for two cars and other garage *stuff*, adding a month’s worth of peritoneal dialysis supplies to that garage strains the space a little bit.
We reorganized the garage and put in a new shelving unit. The shelving unit is only rated to support something like 800 pounds and since a month’s worth of PD supplies weighs more than that I’m surprised, and infinitely grateful, that the engineering of the shelving unit meant that 800 pounds was a conservative recommendation.
We reorganized the bedroom and in a massive burst of blowing through Target gift cards that I’d been given, we purchased a LOT of storage totes and a LOT of vacuum storage bags. While I took a huge load of stuff to Goodwill and vacuum packed more stuff so we had more shelf and drawer space, Andrew put in another new shelving unit and tweaked the electrical supply so he had a convenient, constant, surge protected electrical supply within close reach of his side of the bed. As an added little nod to the gods of cleanliness Andrew also installed an umpty-something micron HEPA air filtering fan so that when he did his PD stuff he could stand in front of it and have it blowing incredibly clean air over him. The benefits of working for a company that needs to work with sterile environments and filtered air sometimes make themselves known in really odd ways.
Mae was thoroughly pleased to note that while our cats do sleep in our bedroom during the day they don’t sleep with us at night. We learned a long time ago that cats actually *don’t* sleep most of the night whereas, as people, we tend to like to. Also when cats *do* sleep with people they don’t sleep with people, they sleep with person. Most specifically, they sleep with the person in the bed who is least likely to disturb them while they sleep. Since Andrew sleeps in more than three dimensions this means that if we attempt to sleep with cats it means that *I* sleep with cats and since I like to breathe air when I sleep instead of breathing cat butt all night our cats have pretty much always had separate sleeping rooms than the people.

Andrew’s primary nephrologist told him that it was probably better to start dialysis while he still had some native renal function left. So, having had his previously placed peritoneal dialysis catheter excavated, Andrew started learning about how to dialyze himself.
If you opt for peritoneal dialysis you will first be trained on manual transfers. Which is to say, you hook yourself up to a bag of dialysis fluid, let it drain into your peritoneum, then unhook yourself and wander around with 2 liters of dialysate for a couple of hours. Then you drain yourself out and refill with fresh. Make no mistake. This. Is. Time. Consuming. 30-45 minutes every 2-4 hours depending. Andrew would not have been able to do this if he hadn’t been working from home. And the trash! Godalmighty the trash!
It wasn’t long, though, before Andrew had demonstrated sufficient improvement and expertise with the manual process that they switched him to a dialysis cycler. The cycler, a critter about the same size as an average laser printer only a LOT more annoying, automatically pumps and drains 6-12 liters of dialysate through your peritoneal cavity over a preprogrammed series of hours. Since you’re tethered to the cycler by a 30 foot fluid line most people opt to do cycler-based peritoneal dialysis overnight.
So Andrew started tying himself to an annoying machine that bitched about what position he was lying in and occasionally tried, in essence, to suction his caudal abdominal viscera out through a straw every night. And we learned to subconsciously respond to a variety of really peculiar noises throughout the night.

A Step Down!

Filed under: @ 12:00 pm

So we went to our second recheck of the week yesterday. Dr. Vadivel (the transplant nephrologist) had scheduled us to see the transplant surgeon, Dr. Gravetz, to have Andrew’s primary incision evaluated because it continues to weep a little bit.

Dr. Gravetz, who was obviously genetically designed to be a surgeon -his hands are incredible-, poked and prodded and found a large-ish subcutaneous pocket near the distal end of the primary incision. It was a fairly icky appointment because here’s this dude POKING BIG HUGE STERILE SWABS ALMOST 6″ UNDER ANDREW’S SKIN!!
In all actuality they were perfectly normally sized sterile swabs, but they were, in fact, more than 6″ long and they were disappearing under Andrew’s skin to a disturbing length. The backs of my knees are all sweaty again just thinking of it.
It’s just a seroma. That sort of serum weeping happens a lot when you have to cut through muscle and it’s a pain in the butt to have to deal with especially in a high motion area. Ideally we should be wrapping Andrew up with a pressure bandage over the area, but that’s not really practical considering the site.
Anyway, the surgeon packed the pocket with sterile wicking material -also an icky sort of thing (which I didn’t watch)- and told Andrew to remove the wicking material this morning. Which he did. Or at least I assume he did because if Andrew had had to have me watch or, *shudder* help, the backs of my knees would get all sorts of weird.

All of the ickiness aside, it was a fairly straightforward appointment. Andrew’s labs are fine and while his blood pressure and weight are fluctuating more than he’d like, everyone at the transplant center says he’s doing well.
And here’s the proof!
While Andrew still has to have two blood and urine panels done next week he’s only got one follow up appointment with an MD!
That sounds like progress.



Filed under: @ 10:43 am

Okay, yeah, it’s Friday. So sue me.

The important bits happened yesterday.

We went to our second of the week recheck appointment at the transplant center yesterday morning. In the last 3 days or so Andrew has gone from being a postoperative patient to a recovering patient. Which is to say that he isn’t needing any pain medication, he doesn’t need two naps a day, and he has enough energy to be purposefully annoying. At this point Andrew still fatigues easily with anything more than the mildest of exercise, we’re still looking for parking places close to where we need to be and thanks to St. Joan of Park we can generally find one, but his energy is much better.
As of early this week the transplant nephrologist decreased Andrew’s tacrolimus dose (the primary immunosuppressant drug) by about 2/3 and instructed Andrew to drink more water. LOTS more water. Given Andrew’s natural fluid intake this means that he’s currently under orders to drink 3-4 liters of fluid daily.
The decreased tacrolimus dose and increased fluid consumption has yet to make any significant difference in Andrew’s creatinine level which, as of yesterday’s check, still hovered just a smidgen above what’s normal. Also the urine concentration is still higher than is ideal, but since the dose tacrolimus was decreased only a day before the most recent blood panel was taken it’s quite likely that Sunday’s values will be better.
And if not, says the transplant nephrologist, we may have to pursue a biopsy (again, ick) to be sure that there isn’t any low grade rejection affecting renal function.
So a mixed bag at the end of the week, but Dr. Vadivel, the transplant nephrologist, seemed optimistic about the changes that he’d made having the desired effect by the beginning of next week. We shall see.

System Pavers is nominally done — there are still a few details left to detail, but that should happen either today or Monday. I’ve got the shadow box almost finished and it should be able to go in place on the lanai this weekend, and I’ve manufactured a lot, well five so far, of pillow shams that need to be washed before they’re stuffed and finished into pillows.
When it’s not raining I shall start clearing out my garden shed.
Placidly content, thanks. How about you?



Filed under: @ 7:07 am

About 2 1/2 years ago now Andrew’s renal function had declined to the point where his nephrologist started talking about dialysis. For those not in the know, dialysis is a process by which the metabolic wastes and other excess gunk is filtered out of the blood stream and discarded. This job, of course, is generally done by the kidneys, but if the kidneys aren’t capable of doing it we’ve fortunately developed a couple of ways to work around that.

Hemodialysis is probably the first thing that comes to mind when someone thinks “dialysis”. Hemodialysis is the process of removing the patient’s blood, running it through what is basically a mechanical kidney, then putting it back in. (No of course the blood isn’t removed all at once! It’s a gradual process.) Hemodialysis requires, depending on the degree of renal dysfunction, multiple trips to a dialysis center per week and a 4-6 hour treatment period where the patient is hooked to the machine at every visit. Hemodialysis also requires the creation of an arteriovenous shunt, a connection between an artery and a vein, in a convenient location so that the patient can be hooked to the machine more easily.

Peritoneal dialysis takes advantage of a weird quirk of humans’ natural physiologic processes and chemistry.

Pardon me while we take a brief side trip into:
It is an extremely simplistic definition, but to understand the idea of osmolality you need to think about a pile of white sugar and a drop of water. If the drop of water is placed at the very edge, just barely touching, the pile of sugar it will eventually get sucked into the sugar. That’s because the sugar is hyperosmolar (it has more stuff in it) and the water is hypo-osmolar. And which law of thermodynamics is it, the second? Or is it the third? Anyway whichever law of thermodynamics it is, a higher energy (or more osmolar) body will gradually loose energy (or osmolality) to a lower energy (or less osmolar) body until the two are at equilibrium.
Like a dry sponge sucking up a puddle of water on a counter top. You get the idea.

Peritoneal dialysis involves the introduction of a fluid of a lower osmolality than that of human blood into the peritoneal cavity (the abdominal cavity.) Because the peritoneal membrane, the “sac” in which one’s abdominal organs are contained, is a. extremely permeable and b. has an incredible blood supply, metabolic waste products and other kidney filtered gunk, gets slurped through the walls of the blood vessels into this fluid then discarded.

The benefit of hemodialysis over peritoneal dialysis is that hemodialysis runs no risk of peritonitis. The down side, of course, is that you only do it a couple of times per week which means that in between times you feel progressively more gross because your blood has a bunch of gunk in it that you don’t need. Oh, and the part about being hooked to a machine for 4-6 hours at every session and not being able to move.
The benefit of peritoneal dialysis over hemodialysis is that it’s done daily, you tend to feel better, and it can be done at home which means less of an impact on your work and travel time. PD, however, means that you have an indwelling catheter placed in your abdomen. Basically a tube that runs from your insides to the outside world. You can’t immerse yourself in water — no bathtub, no swimming, no hot tub, no boating (in case you fall in) — and you have to be painstaking in your handling of the PD catheter, the catheter site itself, your hands, your dialysis supplies, and your surroundings while you’re doing it. One slip up and you’ve got peritonitis, an infection in your abdominal cavity which is not only life threatening it means that you have to switch to hemodialysis.

A friend who has been on dialysis on and off for a long time describes dialysis along as a “mostly full time job”. Neither option is fun, both options are cumbersome, and basically what they do is keep you alive. Which is, of course, better than dead, but there’s a big difference between just existing and actually living.

Andrew had a series of surgeries in early 2017 to create an arteriovenous fistula (it’s on the under side of his left arm, you can feel his whole arm pulsing like crazy if you grab the right spot) and to place a PD catheter. The PD cath was placed but remained buried under the skin until it was needed, but it was still there.
The fistula and the PD cath were ominous and hopeful signs all at once.


Monday Again

Filed under: @ 2:07 pm

Matt said at some point that being low key and unremarkable is precisely what one wants from a postoperative patient.

Low key. Unremarkable.

Andrew got some of his staples removed this morning. I found it funny that the medical assistant who was doing the staple removal was so deliberate and almost tentative! I’m used, when removing staples, to getting in and whipping the staples out as fast as I can. On the other hand, my patients don’t usually lie calmly in one place either. This gal, whom I really do like, was almost too careful, stopping and checking in with Andrew at every other staple or so, fussing and worrying about the staples that were rotated a little bit. I was tempted — a little bit — to snag the staple remover from her and do the job myself. But I’m trying to be good about not being a medical nudzh.

Mostly what Andrew has been in the last 2-3 days is fatigued. The surgical incisions are, obviously, healing well and less painful in general, but he’s still sore pretty much all over. His skin is irritated in half a hundred places because of incisions, surgical scrub, IV catheters, blood draws, TAPE, and general wear and tear, and transplanting a kidney didn’t do much to improve the state of his lower back which has also been griping, but has kind of faded into the background (sorry) over the last couple of weeks.

So Andrew has been sleeping a lot, avec or sans cat, and I’ve been puttering.
The little men are feverishly working to finish the stone work in our back garden so I’ve not been able to putter in the back garden, but I’ve been working on the front garden, I’ve transformed three grocery bags full of apples from Mom & Dad’s tree into dried apples and applesauce, and I’ve been working on my mending basket which is empty for the first time in…. In…. Years?

One of these days I intend to set fire to the garage, or at least pull both of the cars out, set the leaf blower to “high” and put back on shelves everything that doesn’t get blown out. And I’ve got to do the same with my garden shed as well.

Two weeks in and we’re no less grateful to everyone for their support and we’re still brought to tears with gratitude to Curt.



Filed under: @ 12:30 pm

Just got back from our second recheck visit this week. Things are in the “keep on keeping on” stage at this point. Andrew’s primary incision site is leaking less than it was which is good and the lab values from Monday were excellent. BUN and creatinine were only just above the normal range for the first time in who knows how long, and the rest of the blood chemistries were well within tolerances. Andrew’s blood cell counts are still normal as well which is fine, but kind of amazing considering how much immunosuppressant he’s taking.
Physically he’s still weak and easily fatigued (quelle suprise) and he’s been having these weird body aches. No fever, but fever-like generalized aching. Dr. Transplant Nephrologist (whose name is something multi-syllabic that starts with a “V” that I will remember eventually) says that the aching is either the fact that Andrew has been incredibly sparing with his pain meds or an early indicator of serum sickness.
Serum sickness is an immune reaction to a protein based immunomodulating drug. Like snake antivenin or the rabbit protein based immunosuppressant medication that Andrew was administered peri-operatively. No big huhu if serum sickness is the culprit, it just means a course of steroid, but the aching is taking it out of him. So in an inexplicable bout of cooperation Andrew has agreed to be more regular and more religious with his narcotic pain meds over the next few days to see what sort of difference that makes.
This means that after having some truly excellent egg rolls for lunch (shout out to Kau Kau which, if you’re a Seattleite, you should definitely investigate) Andrew is currently snoozing which is fine.

Especially since the next wave of contractor chaos has begun and there are men from System Pavers banging around and digging shit up in the back yard.
Me? I’ve had my egg rolls and I’m thinking it’s probably about time to go putter in the FRONT garden.


Filed under: @ 12:02 pm

In late 2007 or early 2008 Andrew’s internal medicine specialist started noting some changes in his kidney values.

–Sorry, for those not medically inclined, by “kidney values” I mean “parameters in the blood that we use to monitor renal function”. Like “normal” or “normal range” (which means “the bell curve of individual metabolites measured in the blood that are considered normal in an adult”) “kidney values” is medical shorthand.–

Anyway, change in kidney values, right.
Because he is diabetic Andrew’s internist wanted to know why there were changes in Andrew’s kidney values. Those sorts of changes aren’t unusual to see in a diabetic patient, but Andrew was a little young for them to start showing up. So the internist, of course, was curious. Which meant biopsy.

–Another side note: Yes. I am a medical professional. I am, however, a medical professional for things that don’t tend to walk on two legs and stuff involving people and medical care tends to give me the squicks. The idea of having someone jam a needle into my kidney makes me weak in the knees. —

Renal biopsy.
Scheduled and done in June 2008.
Turns out that Andrew’s nephropathy isn’t really diabetic nephropathy it is a heritable immune mediated nephropathy that is complicated by diabetes. When we told Joan of the diagnosis she mentioned that her father had had some sort of chronic kidney issue, but kidney disease hadn’t been a contributor to his death.
The information is vague, but if I were to take a medical guess at it I’d suspect that whatever was going on with Grampy’s kidneys was probably similar to whatever has been going on with Andrew’s kidneys. It’s just that Andrew is concurrently diabetic which accelerated the renal disease process.

I don’t know why it’s so important to me to emphasize to everyone in sight that Andrew’s kidney disease didn’t start as diabetic nephropathy, but it is so there you go.



Filed under: @ 5:37 pm

Things still seem to be going well.

Which is to say that Andrew has a moderate seroma at the primary incision site that is driving him crazy and keeping him from being comfortable when he sleeps so when we’re not driving back and forth from Swedish he spends a lot of time snoozing with a cat on his lap.

Pogo is learning that other people have laps besides just me and that other peoples’ laps are also good places to get all boneless and hot.
And since the appropriate treatment for a seroma is to provide intermittent heat and occasional gentle pressure over the area Pogo is providing valuable therapeutic effect as well as company. I wonder if I could deduct him as a medical expense.

In between keeping house — laundry is done, kitchen is mostly clean and I even started to clean out the refrigerator….(don’t look at the floors) — and acting as chauffeuse I’m getting a lot of gardening done. One of these days I’m going to (GASP) attempt to reorganize the garage so you don’t have to walk through a maze to get to the door.
Or not. I don’t know what I’ll have the inclination to do.

I’ve said before that I realize this Andrew-recovery period won’t be all drinking tea and playing Parcheesi, but I am enjoying the enforced time off. I haven’t had this much not-working time since -oh- the summer of 1985 or so
And if it ends with me having a clean refrigerator and an organized garage or if it ends with me having watched the entire 3rd season of Stranger Things (superb writing this season BTW) while knitting kittens it is of no moment.

Andrew is getting better and I’m getting the opportunity to do things that I’m simply too tired or too busy to get done otherwise.
But seriously. Don’t look at the floors.

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