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.

9/26/2019

So It’s Been a Month

MargaretMargaret
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

MargaretMargaret
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.

9/23/2019

Chapter 2: Now You’re Listed

MargaretMargaret
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.
But…..
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.

9/22/2019

Chapter 1: The Transplant List

MargaretMargaret
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.

9/20/2019

Dialysis 2 Eclectic Boogaloo

MargaretMargaret
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!

MargaretMargaret
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.

9/13/2019

Thursday

MargaretMargaret
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?

9/12/2019

Dialysis

MargaretMargaret
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:
PHYSIOCHEMISTRY
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.

9/9/2019

Monday Again

MargaretMargaret
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.

9/5/2019

Thursday

MargaretMargaret
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.

Nephropathy

MargaretMargaret
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.
*Ick*

–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.


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