If you see a Vial of Blood Roaming the Halls of the HSC, Please Tell it to Return to the Out-Patient Laboratory. Thank you Kindly.

My blood has been lost.

I had samples drawn last Thursday morning. It admittedly was a busy lab day, with deliveries, construction, and seemingly fewer than normal lab techs on duty. While we arrived early in the morning, and although there were merely six other people seated in the blue-chair-loud-television-always-tuned-to-CNN area, we yet waited a long time. At one point the lady next to us had lost her number and was in a panic. The kiddo attempted to go into her purse to help her look. She did not appreciate his efforts.

Instead, he switched to climbing chairs. Later he played with a nickel found on the floor.* No one else made eye-contact. We waited, pretending to be patient, for #79 to be called. And then, thankfully, it was.

In the course of these past nine months the kiddo and I have become outpatient lab regulars. We recognize the staff. But this lab tech was new. He did not know me. He likewise did not say hello to the kiddo, who by this point was standing obediently with his back against the wall, a treat of dry Mini-Wheats held tight in each hand.**

Once we were done, I gathered up our things and the miscellaneous pieces of cereal the kiddo had dropped on the floor. We left the building, gave the parking attendant an extravagant amount of money for the one hour that our car took up a small amount of space between two yellow lines in their lot***, and were on our way. I remember feeling relieved that such a chore was completed.

And then at three thirty that same afternoon, we got a call from the transplant clinic. They wondered if I had one or two requisition papers with me that morning. I only had one, a CBC requisition form.**** Strangely enough, my CBC results had not shown up. They were somehow lost in HSC lab-land. Even odder, what did show up were results showing that I was negative for certain viruses transplant patients are susceptible towards getting. Here’s the kicker: I never brought in a requisition asking to have my blood tested for such viruses.*****

It’s a mystery, one that now has me and the kiddo traversing those hospital corridors again tomorrow morning. We will get our number and climb on those blue laboratory chairs once again.

post-note: I have to admit that my mind wanders to whomever did get my lab results. I imagine a patient and doctor squished into one of the many examination rooms scattered throughout the hospital. I picture them going over those CBC blood results together. And I wonder if my blood will be good news to them or not.

 

 

*despite my best attempts at having him not touch the hospital floor. I knew that I had lost the battle when, immediately after touching said germ-ridden floor, he stuck those same fingers into his mouth. True to form, I woke up the following day to a runny-nosed, coughing nothing-will-make-me-happy-today-but-(blasted)-Paw-Patrol kid. Listen to your parents, kids.

**I have no idea how that kiddo is able to watch. Even thinking about getting my blood drawn makes my stomach flip-flop. Unlike him, I purposefully avert my gaze. I look at the clock, I watch the receptionist. I count boxes of medical supplies on the shelf. I make up stories in my head. I do what I have to do.

The kiddo, on the other hand, unless told to stand against the adjacent wall (about a foot away), will slide on in and stick his head as close as possible to my arm and the dang needle sticking in it. All while crunching on dry cereal pieces. That kid.

***I admit that I used some of the kiddo’s piggy bank funds for this blood work excursion. I don’t feel bad. That kiddo has more money than I do.

**** CBC: a test to measure white blood cells, red blood cells and the polka dot ones no one talks about. Okay, Iied about the polka dot ones. No one ever tests those buggers.

*****I would name the virus that they were specifically looking for, but its name has slipped my mind. Let’s call it virussplirusthethird. (After all, it has been three months since I stopped being tested for such a thing. The protocol at the HSC transplant clinic is to end such testing at the six month post-transplant mark).

I've Dang-well Gone and Grown Accustomed to That Hospital Gown.

 

(note: this was written on Tuesday. I am posting it today. I could blame the delay on the continuous changing of diapers, the tedious job of watching and waiting for a certain two year old to poop on the potty, the mortgage renewal bank meetings, the ongoing onslaught of dirty dishes, or the dog. I think I will blame the dog).

 

I don’t know how to wear regular clothes anymore.

Today when I went to my oh-my-goodness-the-lymphocele-is-missing-now-what meeting* with Dr. Slice and Dice, I was expecting to go over the outcome of the recent nephrostogram x-ray, a post-lymphocele test I did to confirm that indeed, the urine was now making its way from my kidney and down the proper channel(s) into my bladder.**

The thing is, I knew the results already. Call me Sherlock Holmes, but it was a bit of a giveaway when a) immediately following the x-ray procedure, the radiologist removed his protective gear*** and then shared  the details of the x-ray on the big computer screen and b) into the testing room, I had carried a handwritten note from Dr. Slice and Dice (to be given to the radiologist) that explicitly stated: if the urine displays a correct pathway, this patient’s nephrostomy tube is to be capped. At the conclusion of the test, my neph tube was capped. I can therefore only conclude that either those radiologists have a strange fixation on capping neph tubes and did so randomly, or that they read the note, noticed that the urine was undoubtedly traveling down the right tube, and so disconnected the nephrostomy. I am leaning towards the latter.

This afternoon’s meeting with Dr. Slice and Dice then was a bit of a formality, although I went with the intention of discussing plans for the eventual removal of the part of the neph tube that yet poked out a few inches from my belly.**** In my mind, it would be in a few weeks, with possibly a local (anesthetic), or at least some good ol’ Ativan. Likewise, it would involve lying on an examination table, garbed in yet another lovely blue hospital gown and most likely sweating profusely despite being the room being cold. The usual stuff.

I was slightly taken aback then, after perusing the x-ray results this afternoon with Dr. Slice and Dice when he turned to me and declared: well, let’s take the tube out!

To which I rather unceremoniously retorted: today?!

You see, I’m not ready. Oh, I want to be rid of this tube! I have dreamed of being rid of this darn tube. But there’s something so final in it, so risky.  I was not prepared for such suddenness. Truth be told, one of the twenty-two or so thoughts to fly through my head at the time (besides my parking meter nearly being done, having the kiddo with me as well as needing to pick Sean up from work shortly) was: I can’t! I’m wearing laundry-day underwear.****

It was all too sudden. And I am not good with sudden, especially when it comes to medical procedures.

So here’s my confession: I am slightly unsure as to how to be outside of this recent health-care mess.***** I admit, although thankful that the lymphocele has disappeared, that I find myself reluctant to untie and finalize the step out of this hospital gown. This gown, well, it has (begrudgingly) become my normal. I understood who I was in it. It had become familiar.

And now. And now facing the removal of this hospital gown -- the one I have fought so hard not to be in- do I find myself (ashamedly) scared. I do not know what the upcoming normal looks like for me. I do not know how to wear ‘regular people’ clothes. I don't know.

 

*doctors like lots of meetings. I now suspect that it is a prerequisite to being a medical doctor.

**okay, only one channel: the not-so-fancy-but-oh-so-important ureter (FYI: if you are not a medically interesting person like I am***, you may have both of your kidneys. In that case, you will have two ureters leading to a happy and working bladder).

***euphemism for complicated.

***so the test is about to begin. I am laying on the x-ray table. I have a wonderfully revealing hospital gown in blue on, and a thin army-brown blanket covering my legs. I am cold but nervous, so I sweat anyway (welcome to anxiety 101 – the ability to sweat profusely despite being in conditions parallel to outside in the middle of January. In Winnipeg).There is a radiologist and two residents in the room, each perched over the examination table. Just before the dye is placed in the neph tube and the x-rays begin, the residents vanish. The radiologist, however, remains but turns to a table nearby and swiftly dons not one but two full-torso layers of heavy black protective wear. He then proceeds to place a similar safe-guard thing around his neck, which looks eerily similar to a clerical collar. Except an evil cleric, as this collar, too, is black and made of heavy materials that I imagine were found somewhere in post-war Soviet Union. He then places over-sized gloves on each hand. At this point, I can’t help think: what about me? If he is going through so much trouble in protecting himself from possible radiation, what am I being exposed to? Yikes. I want a heavy black clerical collar too!

****laundry-day underwear: those worn-out garments that only get used when all else is indisposed in a machine full of soap. It is implicitly understood that no one should see you in these underwear. You know what I mean.

*****this is not to say that all is peachy-keen with my health now. It is better but there's still the underlying kidney disease and the thank-you-tainted-blood-scandal hepatitis C to contend with. But I am at least used to those. 

 

 

I've Lost my Lymphocele and I am not Quite Sure What to do About it

You deserve an update.*

It’s been nine months since the fated let’s-give-a-third-kidney-transplant-a-try-gee-wouldn’t-that-be-fun surgery. And now, these nine months later, I’ve given birth. Well, lymphocele birth, that is. I’ve given birth to a lymphocele but I am not quite sure what I’ve done with it. It’s all very embarrassing. Have you seen it? It’s not like it can just disappear. It has to be around here somewhere, right? Gosh, I’m so forgetful sometimes.

Perhaps I should clarify. Since its insertion into my abdomen last July, this kidney has had an unwelcome companion, the lump o’ lump lymphocele. These two have each fought for abdominal space,** and unfortunately, the lymphocele won out, with the lump o’ lump rather unceremoniously wrapping itself above, behind and below the poor kidney. What once was a somewhat (re: thirty-five percent working) happy organ transplant swiftly became an unhappy, swollen-with-backed-up-urine one. To ease this hydronephrosis,*** a nephrostomy tube (aka: neph tube) was deftly poked into the kidney to relieve the pressure. The plan was to have this neph tube for three days.

Unlike the Easter story, however, day three of having the neph tube and the accompanying pee-bag came and went without much fanfare. And most definitely no angels. Instead, I would be stuck with the tube ‘n’ pee-bag for the next eight months.

In a desperate attempt to rid myself of this lymphocele and the ensuing piss-bag dangling off my leg, last December I agreed to a lymphocele marsupialization surgery. It was a difficult procedure. Further, it did not seem to do the job. I now found myself in a worse condition than prior to this surgical intervention. My creatinine soared to 335. I did not feel well.

With the lymphocele not going away, and the kidney suffering because of it, the final option to deal with the lump o’ lump was presented: I would undergo multiple ethanol injections into the lymphocele, in hopes that the alcohol would cause the lump to ‘dry out’ and seal itself closed. Funny enough, this did not sound like fun to me. I did not like the idea, and by this point, was slightly skeptical of any proposed treatment.

I asked the transplant clinic for a second opinion regarding the lymphocele. I could not be offered one, as it turns out Dr. Slice and Dice is the only such specialist in this province. Thank you, Manitoba.

So I contacted the Mayo clinic in Rochester, MN.

An appointment was quickly set up for the middle of April. Oh, and then! Riding on the hope of getting another opinion from the medical team at the Mayo clinic, came the later email that oh-so-casually mentioned a required minimum $50,000 US retainer prior to my appointment.

Ha.

(And that’s when I got down on my knees and thanked God once more for the tenacity of good ol’ Tommy Douglas and his gumption in getting socialized medical care introduced into this country).

Sean, frustrated by this ongoing ordeal with both the lymphocele and the neph tube, and learning of the $50,000 US retainer requirement required by Mayo, in turn, called the MB nephrology clinic and kindly but firmly requested an inter-provincial referral. Thankfully, such a referral was tentatively set up with a specialist in Edmonton, AB.

But each doctor -- Dr. Slice and Dice, the Mayo team as well as the AB specialist -- did not wish to proceed further with my case until another abdominal CT was completed. This was ordered by Dr. Slice and Dice for early March.

I then inform the Mayo clinic that I cannot yet confirm those April dates, and hope that they hold them for me until that time. The Alberta specialist appointment is likewise left dangling. Any decision is awkwardly deferred, pending the outcome of the dang CT test.

March rolls in. I have the CT scan. I wait for results.

March 16. I see Dr. Slice and Dice. We view the December pre-marsupialization surgery CT scan. It shows Mr. Lump o’ lump strong and working his way around the kidney. We then look at the newest CT scan. The one done in March. And that’s when we see it: the lymphocele is missing.

The lymphocele is missing!

The following day, I undergo one more nephostogram x-ray and then the neph tube is capped off. Today, I still have the (shortened) tube but I no longer have a piss-bag. My left leg is not requiring a daily tensor bandage. I do not have a lump o’ lump above, around and underneath this kidney. I am not sure what to think, but for the first time in months, I find myself cautiously optimistic.

Here’s the deal. Perhaps the December surgery worked after all. Perhaps it just took time for the lymphocele to fully drain. Perhaps it was, at hearing the news of the resolved lymphocele, what one of my excited-at-the-news nephrologists quietly hypothesized: perhaps this is a work of divine intervention. I don't know. I like the idea of divine intervention. But I likewise know the Divine to be wildly creative and resourceful. I think he**** is and was able to use a combination of all three: the surgeon's hands, the natural draining of the lymphocele, and what we know as a bend in natural law. I can only surmise. 

So I’ve lost my lymphocele. If you happen to see it, please say ‘hello’ from me and my kidney, and then leave that dang lump wherever it is found. I really don’t need it back. Thanks.

 

*Sean said that I ought to write an update and not just draw a random illustration (see last week's post) of Mr. Lump o’ lump saying goodbye to this kidney. He’s right, of course. You deserve more than a doodle. I sometimes forget that you are not all in my head. 

**unlike the kidneys you are born with, transplanted kidneys are placed in the abdomen. I now have three in there. It's getting to be a bit of a kidney party, I'd say.

***hydronephrosis:  a fancy-dancy medical term meaning a swelling of the kidney due to backed-up urine. Laymen’s definition: basically a urine-filled kidney balloon.

****I'm using the personal pronoun of 'he' for God due to ease of writing. I do not assign male or female identity to the Creator (read: I do not think he has a penis).*****

*****yes, I just used the word 'penis' in my post. In reference to God. Yikes. At least it is only in the footnotes. That doesn't really count, right?

 

   

Not Ready to do Normal

I’ve come to a difficult time in my life. I need to find a new hair stylist.

I liked the lady that used to cut my hair; she was pleasant, didn’t coat herself in perfume*, and most importantly, never pushed me to buy products. I liked that.

So all was going well in stylist-land. And then I had my transplant. While this latest kidney has nothing directly to do with losing the won’t-push-overpriced-products hair stylist, it did indirectly put me a quandary. You see, the last time I went to my stylist was the day I committed the (ironically) unspeakable: I did the overshare.

Let me explain: the incident occurred at the end of August, nearly seven weeks post-surgery. Other than multiple hospital visits, clinic dates and various blood work excursions, I had, up to that point, not ventured out of the house. At all.** And then, on one difficult day, on the brink of yet another stress-induced mental health implosion, I knew that I needed to do. I needed to participate in some “normal” activities again. It was time. One of the most ordinary human activities that I could conjure up? Getting a haircut. I needed a haircut.

I made the appointment. I changed my clothes.*** I brushed my teeth. I stumbled out the door.

I did well at first. I (think) I smiled at the appropriate times. I turned down the complimentary coffee or tea the receptionist offered (that’s what you’re supposed to do, right?). I followed my stylist to her chair. She put the black plastic cloak over me and velcroed it around my neck. And then.

And then she asked the usual hair-stylist question: so, how are things?

I don’t know why I chose that time to fall apart and blubber about having an arduous transplant. Most people better schooled in social interaction would’ve lied**** and responded to her inquiry by succinctly stating ‘fine, thank you and how are you’. But not me. Nooooo. I’m the one who had to blurt. I blurted, snorted and (nearly) sobbed about how difficult it had been since the surgery. About how disappointed I was. I told it all. The lady sitting in the chair next to mine kindly turned away, as if her body movement could provide some privacy back to me. I was a mess. This was not the normal I had hoped for when venturing out.

My stylist, however, was kind. She, once I had completed my emotional unveil and once the shock had left her face at my unexpected response to her question, calmly stated, “that sounds awful. I am so sorry you’ve had to go through that. Do you know that my uncle also had a kidney transplant?” It was an acknowledgement, a small token of absolution. It was as if she had offered me a (hair) wafer along with the assurance: your sins are forgiven. Go in peace.

We talked about her uncle for the remaining time that she fixed my hair. And then we were quiet. I didn’t know what else to say. I was suddenly very tired. She ended up charging me a third of the regular price, hugged me on the way out, and said, “take care”. It felt like she meant it.

 

 

 

 

*me + overly perfumed ladies and (usually teen-aged) gents = unhappy unhappy very very very unhappy (brain).

**that’s a bit of a lie. I did go out. Once. In early August, my parents drove out to visit. When they were here, we went to the Assiniboine park play area. The kiddo loved it. I remember being hot (it was, after all, August. And, due to sun sensitivity induced by the multiple and large dose immunosuppressants I was taking at the time, I recall wearing long sleeves, black leggings, covered footwear and a sun hat. I enjoyed myself but sat in the shade. I would have enjoyed myself more had it been winter)..

***a low frequency occurrence at the best of times, never mind when depressed as a wet sock on a cold day.

****lying: the strangely acceptable (if not expected) behaviour in certain social situations. I am baffled by this, but usually at least try to play along.

Give Yourself Permission to say What you Want (Within Reason)

 It was on a chocolate bar. A gourmet bar filled with chunks of almonds and dotted with morsels of toffee, but it was still, underneath it all, a chocolate bar. I bought it from the local Food Fare (ex-Harry's, for those of you who have lived in the west end long enough to remember). It was my treat for the day. In fact, as days of hectic parenting often go, it was to be both my treat and my lunch.

A friend had offered to babysit for a few hours that afternoon, and let me tell you, an offer like that is rarely turned down. I took advantage and headed out for a long (solitary!) walk. One of my first stops was the grocery store* to purchase my I-don't-have-to-share-this-with-a-two-year-old-treat. It was delicious.

But what drew me to the candy bar in the first place (other than the fact it was chocolate. Come on, people -- chocolate!) was the sentence printed on its cover. There it was, in all it's candy wrapper glory: give yourself permission to say what you want. 

You know that worn cliche about being hit by a ton of bricks? Well, in that equally worn, still-trying-to-sell-food-that's-expired grocery store, I was hit by a proverbial ton of bricks** (or expired cheese and yogurt. You take your pick). I knew that I had to buy that chocolate. 

I bought the chocolate. I walked my walk. I ate the chocolate. 

I generally do not like positivity messaging***, especially when it shows up on a silly chocolate bar (no messaging about diabetes on that chocolate bar, was there? Nooooo) or in my social media feed. I confess the tendency towards rolling my eyes at the seemingly mandatory cursive font and trademark background of water or mountains or insert-whatever-nature-scene-gets-you-hot-and-bothered-towards-positivity. But this was different. I knew in my soon-to-be-filled-with-chocolate gut that it was another example of the Divine / Creator / the Big Dude Large and in Charge reminding me: you have something to say, Little One. Say it. 

Risk.

(And I got to eat a chocolate bar out of the deal. What a nice Guy that God is).

 

*also fondly known as grumpy cashier-land. 

**not really. They don't actually sell bricks there.

*** I realize that this makes me sound like a grump. I'm not. Okay, I'm not most days. Alright! I'm not some days.****

**** Hi, my name is Natasha and I am a curmudgeon. 

 

     

    What Makes a Good Doctor Pt II

    While this writing comes fresh on the (white lab coat) tails of last week’s blog scribble regarding my unfortunate post-surgery visit with Dr. Slice and Dice*, the question of “what makes someone a good doctor” has rather noisily (and I admit stubbornly) rattled around in my brain for some time. This particular question, however, came to the forefront a few years back, when I found myself in under the watch of what I would deem as an unsafe doctor.

    Here’s how the story went: at the time, in order to remain on the Manitoba renal transplant list, the Kidney Transplant Powers-That-Be insisted that all adult female patients undergo a yearly Pap test. I wanted to remain on that list. I was therefore on the hunt for a female GP. (As I type this out, it hits me that my actions towards finding a doctor based merely on the fact of their gender could be construed as sexist. But, if I can attempt to justify my (then) actions, here it is: the awkwardness of any doctor cramming fingers and cold metal contraptions and God knows what else into private parts is alleviated just slightly when that doctor has similar bits and pieces).**

    Upon the recommendation of a friend, I was able to locate a female physician willing to accept new patients, Dr. Z was a diminutive and rather nervous individual, who had some remarkable bald spots peeking out from where her hair had been meticulously combed over. She likewise spoke in such a low whisper that I often had to ask her to repeat herself. Although annoying, I did not care; I had located a female GP to complete my exam! I was relieved. A week after she completed the poking and prodding, she brought me into her office, sat me down and delivered some spectacular news: I might be pregnant.

    What the what?

    Just to explain: I had been on peritoneal dialysis (PD) for years at this point. Individuals on PD rarely (read: never) get pregnant. It just does not happen. Okay, I suppose it could theoretically occur, but if it did happen, it would be either a fluke or a miracle. You decide.

    I happen to have PD clinic the following day. At this appointment, I mentioned to my nephrologist that the GP thought that I might be pregnant. If you ever want to see a PD doctor’s face freeze and then be painted in fierce anger, blurt something like that out. Needless to say, the PD doctor immediately called Dr. Z to find out what (the bleepity bleep) was going on. Turns out, the GP had made a mistake. Oops.

    It happens, right? Although Dr. Z’s (false) declaration brought up a poop-load of old pain for me, I let the error slide.

    Then, a few months later, I needed to Dr.Z again. This time, it was not for anything medical, but rather, it was to have her fill out a health form for the renewal of Sean and my international adoption dossier. In the past, my previous GP would read through the paper, fill it out and immediately sign. It was not a big deal. I expected the same from Dr. Z.

    But she refused. She refused to sign until I had an (in house) blood test. In retrospect, I should have asked what exactly she was testing. (Hindsight is so 20/20, eh? So annoying. I think if I met HIndsight in high school I probably wouldn’t have allowed her to sit at my cafeteria table. Who wants to eat lunch with someone that smug?). So I got Dr. Z’s silly test and didn’t think much more of it. That is, until she called me into her office. Naively, I figured I was being summoned so that she could sign those papers. But no.

    It turns out that she had tested my blood for blankety blank,***something for which individuals who had undergone cancer treatments usually get tested. Again, what the what? I have never had cancer, nevermind been treated for it. But my results came back slightly (and oddly) elevated. Because of this, she once more refused to sign those dang adoption papers.****

    I was getting desperate. We could not send our adoption dossier to Ethiopia without the papers. So when she (quietly) demanded that I get an endoscopy and colonoscopy as a follow-up to the slightly elevated blood work levels, I agreed. What else could I do? I was frantic, and like a dog wanting a treat, was willing to jump through whatever hoop she insisted upon. As I (figuratively) jumped, I literally had a tube shoved both down my throat and up my bum. The whole event was humiliating. And, it turns out, not necessary. Unsurprisingly, the results came back negative.

    She then signed the papers.

    And I found a new GP.

    Here’s the tie-in to my question regarding what constitutes a good doctor: Dr. Z had come recommended to me by a friend. I don’t blame that friend for her suggestion; I should have questioned further when that individual had meant when she had shared that “Dr. Z is female. Dr. Z is such a good doctor”.

    I hear it all the time: Dr. So-and-So is such a good doctor! The assumption is made that whomever is having such a conversation share the same values to what constitutes “good”.*****

    So what does it mean to be a good doctor? The above scenario reflects a doctor whom I did not find to be acceptable in her profession. And as such, I soon left her practice. I have, however, over the thirty-six years I’ve been a chronic kidney disease (CKD) patient and especially after this most recent transplant, encountered many doctors who I would deem as not just good but rather, exceptional in their doctoring. When I think of those medical professionals who have, in my opinion, done their job well, I can summarize three characteristics (or values) that are present. These are in no particular order, and you are welcome to disagree with me about my summation. I am aware that we each walk around this earth with different values, and what I have come to appreciate in a medical professional may differ from what you need or value. That’s ok.

    First, they are knowledgeable. This is more than just smart. Honestly, by the time a doctor is in practice, they have been around the educational block a few times. It takes a lot of fortitude and brain-ability to be trusted with people’s bodies. No, when I speak of knowledgeable, I mean the perfect collision of smart brains with clinical experience. I want my specialist to know more than I do. But I also want them to know who to call if a differing opinion is required. I want them to have connections. I likewise can appreciate a doctor who has had enough experience that my abnormal body things do not throw them off; that they can a) recognize my ailments and b) know what options are available to help with them, and c) not be phased by the strange things bodies sometimes do.

    Second, I value availability. I get it; we all are busy. Doctors are busy. I do not expect a medical professional with hundreds of other patients to be at my beck and call. I would hope, however, that he or she is available post-surgery, especially if that surgery did not go well. Over the past months, I have repeatedly had the unfortunate occurrence of having to wait for the surgical specialist to “return from holiday” before I could move ahead with dealing with the lymphocele. Again, I understand. Doctors, like the rest of us, need vacations. But this particular surgeon’s escape to the Alps left me, his patient, to sit in health-care limbo for the six weeks until a consult could be arranged. Needless to say, while those six-weeks may have been a vacation for him/her, they were most definitely not an easy time for me or my family.

    Lastly, I value caring. By this, I do not mean a bleeding heart (definitely not literally. That would be messy). No, I can appreciate a smart doctor who advocates for me and my health because they see me. On some level, they are able to put themselves in my position, and are thus motivated to do something beyond the required doctor-job: it’s the thoughtful recommendation of a friend who happens to be a lymphatic massage therapist. It’s the 5:15 pm phone call just to make sure that I am okay after a particularly difficult clinic. It’s walking me to an ultrasound appointment, as they could see that I am shaky on my feet and emotional after yet another dose of bad news. It’s laughing with me at the slippers I had to wear out in public, when my feet were too swollen to be contained in shoes. It’s those sort of things.

    And to make a long story short, these are what I value in a "good" doctor.

     

     

    *Dr. Slice and Dice may not be bad per se at his job, at least the technical side anyway. I assume that he has helped a lot of people. In fact, his ‘rate my doctor’ scores show that there are some extremely grateful individuals out there who have benefited from his surgical expertise. And while I’m thankful that he was willing to at least try to surgically deal with this dang lymphocele, I found him to be difficult to work with.

    **bits and pieces = an amusing way to talk about bathing suit areas.

    ***I am using the highly specialized term, blankety blank because I cannot recall (this many years later) what the specific blood test was that she ordered. So blankety blank it is.

    ****if you have ever gone through the rigamarole of international adoption, you will be familiar with the ridiculous amount of paperwork involved.. At last count, during our time on the international adoption list, both Sean and I had completed seven criminal record checks each. Seriously. The receptionists at the police station where we did our checks soon got to know us. It was sort of like Cheers, where everyone knows your name. Except there was no booze. Or a bar. Or a Sam Malone. And we had to pay $85 each every time we showed up. Really, it wasn’t like Cheers at all.

    *****the term “good” is being used in its colloquial sense, and not in the actual definition of a moral, upright being. That said, I am assuming the Hippocratic Oath covers that end of the meaning of a “good doctor”.

    post-script: Later, when we confronted Dr. Z as to why she would bother to test me for that unnecessary test, she looked at me blankly and whispered “I test all my patients for that”. At that point, I remember thinking: you, dear ma’am, are a nutcase.

     

     

    There is no Spoon.

    You know you are in trouble when:

    a) at the post-surgery consult, the doctor ignores both your husband and your son who happen to be in the room with you.

    b) he pauses just long enough from the patient / doctor conversation to look with apparent frustration at your two-and-a-half year old son, who is making some noise and running around the office. He's two, Sir. Two.

    c) upon your inquiry as to what happened during the (failed) lymphocele surgery, he simply states: well, the lymphocele is not the problem.*

    d) when asking him for a further account as to why this lymphocele now (quite abruptly) not the problem (despite it being clearly discussed as “The Lymphocele Problem” since late last July), he begins the dialogue by sighing, rubbing his face and announcing: I don't know how to explain this to you to get you to understand.*** What? See that onus there, sir? Yeah, the one laying on your lap? Yeah, that one. That onus is on you, dear man, to at least try to find a way to explain why the lymphocele is suddenly not the rai·son d'ê·tre for my ongoing kidney problems.

    e) when Sean pushes further for an explanation, the surgeon leans back on his chair and spouts out big-word-medical-jargon-stuff about chopping a man's scrotum off (see amendment #1 below), and the ensuing scar tissue that resulted.****

    f) he does not answer any more of your questions, Not one. No wait, that’s a lie. When asked about the possible risks involved in the proposed upcoming lymphocele treatment,*** he replies “I don’t know. Look it up on google”*****.

    And that, dear friends, is how you know you are in trouble when visiting with your surgeon for your post-operative appointment.****** And that’s also when you decide its time to contact the Mayo clinic.

     

     

     

    * what the fuddlyduddlechuckamuck nonsense is this? He might as well have been sitting there with a spoon in his hand, stating, "but there is no spoon". There IS a spoon, dear sir. There is a spoon. 

    ** if this spoon reference is lost on you, please take the next six plus hours of your life and watch the Matrix movies. Or, if you are a busy person, just watch the first one. It's the best one anyway. 

    *** to which you think: try me. I’m actually rather smart.

    **** I get it. I have been around the operating table a few too many times and now I have an abnormal amount of scar tissue in my belly. I also get that this scar tissue, along with this lymphocele, may be a reason for all the swelling and pressure issues I’ve been experiencing. Yes, I get it; it is not a difficult concept (see footnote above: I am not a simpleton. At least not the last time I checked). But using the example of chopping some unfortunate man's balls off as your example? Really?

    ***** this would involve intrusively large needles, ethanol injections into lymphocele and (as far as I can figure) a lot of pain. And it might not work.

    ***** true story.

    ****** to his credit, he did agree with me that a post-lymphatic surgery CT scan is a judicious move, and one that would give us some idea what this good ol’ lymphocele is up to. So he went above a particular nephrologist’s decision not to permit me a follow-up CT, and ordered one to be completed early next month.

    #1 amendment: Sean has brought it to my attention that it was a prostrate that Dr. Slice and Dice used as an example, and not a scrotum. My mistake.Scrotum sounds so much better though.

    On Missing Thursday Clinic

     

    It’s happened. The day has finally come: I don't have to go to Health Science Centre (HSC) this week. Not for blood work, not for transplant clinic, not for any tests*.

    What will I do with myself? What do normal (healthy) people do with all their time?****

    I can’t help but wonder who will feed the William ave parking meter gods; those grey boxes need to be appeased on a strict two-hour basis between the hours of 9 am to 4 pm or they get angry and summon the parking meter behemoth to disperse parking tickets far and wide. And those tickets, my friend, are expensive.

    Oh! And the dear, sweet underground parking attendant who sits, dutifully, in her plexiglass box day in and day out: will she wonder where I've gone? Will she worry? Be puzzled? Will she wait in vain for my weekly four or eight or twelve dollar parking absolution payments?

    And the lab technicians, those white-coated ladies of blood who love spoiling the kiddo. Will they too, wait fruitlessly, syringes poised in hand, expecting me and my well-needled right arm to present itself at the usual 8:45 am time slot?  

    What will the less-friendly-than-the-white-coated-ladies-of-blood Starbuck’s barista do in my absence? Who will order a bag of popcorn (Kiddo’s), an apple juice (also Kiddo’s) and a tall milk-and-honeyed mint tea (mine) next week?

    What do other people do on Thursdays?  

     

    *I’ve been a regular attender of HSC for the past seven months, when another kidney was unceremoniously plopped into this belly. Since that time, it's been a minimum-once-a-week appearance at the hospital lab, clinic and/or ultrasound T.V-on-all-the-time grounds. In fact, some weeks it has been as much as six out of seven days that I have found myself sitting in one of those wobbly blue chairs somewhere in that medical institution. If only HSC counted as church, then the halo above my head would be nice and shiny by now.**

    **I don’t have a halo above my head. Not that I know of, at least. If you see a halo above my head, please tell me.***

    ***On second thought, please don’t. I like you. I don’t want to walk around thinking that you are a crazy person who sees halos above people’s heads.

    ****Having a chronic illness is like having a part-time job. It’s like having a part-time job that, rather than earning you money, takes money from you. Really, overall, it’s just kind of shitty.*****

    *****Healthcare in Canada is free, but healthcare in Canada is not actually free. Last month, this "free" healthcare cost us $67 in parking fees.

     

     

    I'm Skinny and Unsettled in my Hammer Pants

    I've become skinny*. Now, before you decide to punch me in my now-scrawny throat for declaring such a statement, hear me out: the up and down sizing of my body is not helping the sense of destabilization I have felt during this post-transplant time. It's disconcerting; I don't like it. Not even my feet are behaving: they shrink and swell along with the day. Nothing is stable. I need new winter boots. I can't buy new winter boots, as I am not sure if I ought to buy them for my normal morning feet or my essentially-water-balloons-at-the-end-of-stick-legs evening feet.

    I also confess that despite now being leaner, I am still wearing those dang leggings, seven months on, rather than real pants. I really must do something about this, as they have stretched out and we joke that it looks like I am wearing hammer pants.

    (And if you don't know what hammer pants are, let me be the first to say thank you for coming along on this skinny person blog post ride. It is appreciated, but  you are too young to be reading this post. Or any post. Shouldn't you be outside, playing in the snow? Building forts or something? Eating Fruit Roll-Ups?)

     

    *I need to clarify. While I know it is far from socially acceptable in our North American society to use numbers for money, weight or age**, I'm perhaps foolishly going to break at least one of those taboos tonight. Yup, I'm going to talk weight numbers. So, prior to this latest transplant, I was on peritoneal dialysis. As such, I needed to weigh myself every morning, to make sure that the overnight dialysis had removed the correct amount of water-weight from my frame. To regulate this (quite unscientifically, but it is what is available) the PD medical team and I had to come up with what is known as a 'dry weight' (what I weighed without the usual 2.5L of dialyzate in my peritoneum). The number increased over the ten years that I was a dialysis patient (it is a sugar based solution, after all. Cut me some slack please) but just before my transplant, my dry weight between 141 and 142lbs***

    Then I had the transplant surgery. Overnight, thanks to the IV drip, a kidney that decided to "sleep" for the first days, and general post-surgery water retention, I bloated. I ended up being approximately twenty three pounds over my dry weight. Let me just state that again: this happened within days. Everything puffed up. My hands, my face, my belly, my legs. Even my bum decided to get in on the water retention party.*****

    So via a few days of hemo dialysis, months of diuretic pills and a kidney that decided to eventually (somewhat) wake up, I lost that weight. But it took time. The lymphocele showing up one week post-transplant also did not help. That brought along a whole new set of lymphatic fluid weight distribution issues. Read: I was lumpy and bumpy and rarely recognized my own body.

    By mid-November, over four months post-surgery, I was thankfully again at my dry-weight. Then. Then I had the fateful lymphocele marispulization surgery. As we all know, that did not go as well as hoped. I left the hospital six days later, again with an extra twenty pounds of water weight. I felt awful. 

    I wore my leggings. I removed every sprinkle of salt from my diet. I often dishearteningly but stubbornly wrapped my legs in tensor bandages at night. I did what I needed to do to lose that water and re-distribute the lymphatic fluid. And then, I waited and let my body heal.

    In the process of healing, I am now at 131 lbs. While that may not sound emaciated, when I looked at myself in the full-length change room mirror the other day, I was shocked. I do not recognize this body that I find myself encased in. It's not the one I know. It is not familiar. I left that store's change room feeling slightly dizzy from this swaying to and fro reality.

     

    **I firmly believe that shame thrives in taboo. So this is me refusing to accept these silly societal rules that say that we (especially women) have to hide our age and weight. That's bullshit. I'm nearly forty-two, one hundred and thirty one pounds and damn proud of both. 

    ***using pounds here folks - my at home scale was set to such measurement****. So I guess this post is for you, U.S.A, Burma and Liberia. 

    **** if this is really stressing you out, simply take those pounds and divide by 2.2. Ah, math, the saviour of the world. Oh. Wait. That is Jesus, right? Dang. Always getting those two mixed up.

    ***** it wasn't a party.

     

    These Boots Were Made for Walking

    It was a good day; I was able to get winter boots on my plump* feet. I didn’t wear the usual tensor bandages or socks, mind you, but I managed to get those suckers on.

    And then I went out. To a party. Me! I even talked to three people***, not including Sean and the kiddo.

    I give full credit to those boots.


     


    *Plump. What a great word. "Swollen" would probably be a more accurate description of these water-logged appendages. But I think that the word "plump" is grossly under-utilized** in our culture. So "plump" it is. 

    **See what I did there? Grossly under-utilizing the word, "plump"? Ha! These boots have also made me a word smith! Magical boots...

    ***Okay, one was a six-year old kid. But in all fairness, the boots told me that it still counts.