Of Explanations and Invitations.

I need to apologize. I shut this blog down nearly six months ago without a lot of warning. In retrospect, I can see that such an abrupt ending was inconsiderate. I further did not divulge many* details about why I chose to rather suddenly stop adding new posts.

Again, I apologize.** And I now offer an explanation:

I chose to close this blog because I was feeling out of control. I am not proud of this. Living, nevermind post-transplant-number-three-with-the-added-bonus-of-an-enormous-lymphocele-thrown-in-and-all-that-entails had worn me down. I was tired of my own grief. I wanted to close the door on the post-transplant and ensuing complications stage. And so I did.

I must now admit two things: consciously deciding to end the blog and further taking action to do so felt good. It really did.

But here is the other thing that I must confess: I am still not sure that it was the correct decision. But it is done. And now I move on.

Which leads to an invitation. As promised, my pencil has not stayed still. I am currently writing at thisparticular.life, a brand-new blog about things -- encased in living-with-a-chronic-illness wrapping, of couse. Not because I want to, but because it is the reality in which I find myself.***** You are welcome to join. This kidney-number-three and I would love to have you along.

 

 

*any

**to be Canadian, you must apologize at least twice in any circumstances that warrant it. Or not warranting it, actually. To be Canadian you must apologize profusely whether the situation calls for a double-sorry or not. This is, indeed, Canadian law.***

***Okay, I lied. It is not truly Canadian law. But it ought to be.****

****apologies for lying. I truly am sorry. Truly.

*****this is me accepting my circumstances. My therapist would be proud.

 

Have a (Sort of) Working Kidney. Will Travel.

(Note: Since the transplant, the occasional (brave) soul has inquired about whether having this latest kidney has been worth* it. I can't say that I know how to answer that. I may never know. And while I am grateful for whomever's organ I am currently using to remain (relajjhjnnnnn,xnxxxxxtively)** healthy and more importantly, alive, I can't say that I feel any better with this kidney than what I did during my time on dialysis. 

But here's what gives me hope: my body is, technically, in better shape for having this surgery. The creatinine levels have dropped to a safer number. My heart and other organs presumably are happier for no longer being under the strain of dialysis. I've gained muscle.*** 

There are reasons to be glad for this kidney, even as it chugs along at its underachieving thirty-five percent function. For example, this summer was my folk's fiftieth wedding anniversary, and I decided to fly out for the party that was being thrown in celebration.And as I prepared for the trip, I found myself gleefully shocked by three new post-transplant realities: I no longer had to call Baxter (dialysis supplier) one month prior to any trip to have them ship the ridiculous amount of supply boxes to my travel destination. Secondly, it would not be necessary to drag that life-sustaining but heavy as heavy dialysis machine along.

And finally, thanks to this 'new to me' kidney, I could travel with merely a carry-on bag, much like a normal person. Well, under the guise of a normal person, at least. I am aware that most of the population does not have nearly half a dozen kidneys in them). 

 

*worth: a necessary although irksome word to define, especially when it pertains to health, quality of life, and end-of-life decisions. But at least it gives those medical ethicists something to talk about over their morning coffee. 

**the kiddo has learned how to open my Chromebook. The kiddo also loves to type. Nothing is safe anymore. 

***Give me a few more months in the gym and I will be able to kick your ass. Well, maybe your shins. You get the point. Without much trying, I've been able to gain biceps. And triceps. And all those other 'ceps gym-crawlers talk about over green kale protein powder shakes. (I don't drink those, by the way. I like cookies.The chocolate kind). 

Weekend Adventures in UTI-land.*

Step 1. Get bladder infection symptoms.

Step 2. Pee in a cup.**

Step 3. Go home and wait for pee-in-a-cup fuzzy bacterial cultures to grow.

Step 4. Listen to phone message on Friday afternoon: the initial results of the urine sample show.....not much! Continue to wait for cultures to develop.

Step 5. Wake up Saturday morning in pain. Pee. Repeat every fifteen minutes.  

Step 6. Be unduly stressed when any other member of your family decides to use the facilities. Decide that you and your bladder need access to that bathroom at. all. times.

Step 7. Pee again.

Step 8: Contact nephrologist on-call.

Step 9. Find out that nothing can be done until lab results show up on "the system".*** Hang up phone, pee again. 

Step 10. Wake up Sunday morning. In pain. Pee every few minutes. Have another discussion with same nephrologist on-call. Results still not showing up on the system. Advised to go to Emergency if symptoms are unbearable.

Step 11. Don't go to Emergency****

Step 12. Get unexpected phone call from nephrologist a few hours later, stating his apology for not realizing that the outpatient transplant results are on a different system. 

Step 13. Sit down on toilet and pee (again) while speaking with said nephrologist.

Step 14: Get nephrologist to send in antibotic prescription to local pharmacy. Have spouse pick up prescription. Happily pop pill, thankful for drugs. 

Step 15: Wait for antibotics to kick in. Pee again.

 

*yes, it is a place. In fact, my kidney and bladder happen to be regulars. (For a truly great visit to UTI-land, be sure to stop by on the weekend. Any weekend will do, although in my experience, long weekends are the best!)

**while you might think that the adventure is in attempting to aim your mid-stream pee into the teensy-weensy sample cup, you'd be wrong. No, the adventure only begins when the three-year-old (your's) with whom you are sharing the single-stall bathroom, and while you are yet seated on the proverbial throne with pants around ankles, decides it would be a fun time to play "bats peeing" and turns off the lights. 

***the computer.

****in my experience, while going to Emergency is a great way to have a relaxing and lengthy sit-down in the waiting room, it is not necessarily conducive to resolving transplant patient UTI issues. (Oh, but you do get a nifty pink bracelet to wear home. That's pretty neat, I'd say).

 

The Worst Thing.

When asked the question for the first time last November,* I was in what I then thought to be the worst throes of post-transplant illness: the new-to-me kidney-number-three plugging away at barely thirty-five percent function, a lymphocele joining my apparent belly-party** and deciding to band above, around and below the kidney and ureter, and a left leg and foot swelling to the point of my no longer being fazed about wearing a fuzzy blue hand-knitted slipper out in public.***

I had not seen the Man Who Would Ask the Question for sometime, at least two years by that point. We had been close, once, when I still lived in B.C. But that was a long time ago.

We ran into each other on a Sunday. A Sunday morning, to be exact. Like most other days at the time, I remember feeling worn and struggled to even stand upright. At one point in our brief conversation prior to the ‘sit-your-buttocks-down-can't-you-hear-that-the-service-is-starting-happy-clappy’ music beginning in earnest from the front, this visiting man, with concern on his face, quickly asked how things had been lately. And me, being the gracious lady that I am, rather forcibly spitted out: hell. Things have been hell, in fact.

(And then I admit that I smiled, an involuntary and frustratingly conditioned reaction to the realization of my not being as nice as was expected).

A few last chairs were being shuffled out. Out of the corner of my eye I could see the usual (unsupervised) child or two running around with the gold-fabric flags**** in hand, oblivious to everyone they hit with them as they skidded past. Someone put the offering bucket at the front. Without the pens, of course. There were never any pens.

And then, just as volume of the room increased to an even greater extent, with people beginning to lift hands and get churching. he turned to me, seemingly undaunted and dared this: so then what has been the worst thing?

His question stopped me.

The question! Such a question -- one focused on what went wrong -- was not asked. Didn’t he know? I was aghast: he must know! Church-goers and positive-mantra junkies alike demand positivity! Be blessed! There are blessings! Self-determination! Focus on those darned things to be thankful for! Every single one of them! God knows what he is doing!***** But in one question, one audacious-breaking-with-societal-norms, risky-as-hell question, I felt validated. 



*I was asked the exact question again recently, by a different person. It’s times like these that I suspect that the Universe is trying to tell me something.

**I was not invited.

***eventually anything can be perceived as normal. It just takes time.

****not a big fan of the flag-thing myself, but I can respect if someone else feels the need to express themselves in such a manner. Here’s my two-cents though: does God like flags? Has anyone asked him?

And, why aren’t there any rainbow flags used in church services? I like rainbows. Maybe God does too.

*****and no, I am not going to actually answer what the worst thing is and/or was. For nearly a year, I have wracked my brain, stayed up at night, and discarded too many blog posts attempting to answer such a question. It’s a gritty one, and one that I am unable to quantify

******I seem to be picking on church-goers and positivity people here. I suppose I am. (I am also keenly aware of my generalities). 

And just to clarify further: I do think the Creator knows what he/she is doing. I also think that he/she is not as afraid of our grief as we are. 

Remembrance.

(Editor's note: the author wishes it to be known that the tardiness of this post is in direct relation to a recent and much needed road trip to the great land o' Saskatoon*. And as such, the writer likewise wishes that any complaints regarding this lateness and/or noted grammatical errors be brought to the attention of the city of Saskatoon itself. Thank you kindly)**.

It was my anniversary the other day. No, not the married-person kind of awkward-I-love-you-still-after-all-these-years-of-smelling-your-toots-and-hearing-you-eat-loudly observance, but rather, a day to acknowledge the first transplant I underwent****. It was 1986; I was twelve. The call came on a Friday night: there's a kidney for you. Come to the hospital immediately.

Once at the hospital, while various nurses fluttered about scrubbing my bits and pieces in an attempt to prep my belly for the organ****, the transplant coordinator pulled my parents aside and tacitly mentioned that the donor had been twenty-two, from Vancouver island, and exited this world due to a drinking and driving accident.

And that's where I get stuck in sharing about this. Even after these thirty years, typing those scant details of him, the Other-Whose-Death-Saved-Mine is difficult. It muffles my head a bit and I don't know what words are adequate: I lived because he died.

Please do not get me wrong: I am thankful. I was and am deeply, excruciatingly grateful. But as a twelve year old and even now as an adult, I admit that I do not know how to process much of it*****.

So I do what I can: I remember. Every July 20, I remember a person, age twenty-two, a B.C resident. Most likely a loved son, a friend, and perhaps even a brother. He was somebody, and I acknowledge that.

(Thank you, my kidney-donating friend. One day, perhaps if heaven works the way I want it to, we will meet up again and swap this kidney a few more times).

 

*not the author's choice. But still pleasant.

**I confess that I don't actually have an editor. Well, not an official one, anyway. It's just me. But if anyone is up for the job, it's your's! I pay in appreciation, affection*** and perhaps a sharing of my red licorice. But only if you are good.

***from a distance. I'm not the hugging type. Not unless you are four-legged and furry, that is. Then I will basically molest you.

****because this is what us chronically ill ("Lifers") do: time is not marked by the usual graduations, move out of the parent's house, etc., but rather, by the first central line, an initial dialysis run, or, as in this case, the first kidney transplant.

****again, just to clarify: when I say 'organ', I am meaning the nephron-laden kind, not the Hammond church-lady variety. There has been some confusion regarding this, and I apologize.

*****hello, existentialism. Or faith. Take your pick.

I Bought a Bathing Suit. I am Grumpy.

This belly of mine is marked with scars and I do not like them.

Oh, you may say that such flesh lines are reminders of courage! and bravery! and all that let’s-smile-and-make-this-situation-better-than-it-is poop-on-a-stick stuff that is seemingly uttered with the most vibrance and dogmatism by those whose bellies are (yet) pristine.

Well, thanks for the encouraging perspective, but this three-extra-organs-squished-into-my belly lady is not having it.* Not one bit.

Scars suck. They really do.**

 

*by organs, I mean kidneys. I do not mean the foot-pedal-and-sixty-one-keys-made-by-Hammond kind of organ. Nope, I am sorry to say that I do not have a Dutch Reformed church service happening in my belly. Well, not that I am aware of anyway. 

**well, other than that they are an indication that our bodies (sort of) repair themselves. Wound repair is a rather fascinating thing our bodies do, I think. Science is neat-o.***

***I think God even likes it. Science, that is. I can't speak to whether or not he actually likes the sound of the organ. Or the Dutch language. Or any language for that matter. He's kind of a funny guy. 

 

 

Losses and Gains: an Eleven Month Post-Transplant Assessment of the Highly Scientific Kind.

It was February 13th, a Saturday. I know this date because it was the first time since the transplant that I laughed. 

Now, of course I had snickered or perhaps even slightly guffawed previous to this. But not much. Those months following the transplant and then the lymphocele surgery were a special kind of difficult; I joke now about being grateful that Winnipeg's landscape is monotonously flat.* But truthfully, there were select days when I had just enough clarity to move my prescription bottle of sleeping pills off the nightstand, and so out of view. I am ashamed to admit that on some days that bottle was just too much of a temptation. 

All this to say is that I did not laugh much in the months following this latest 'gift of life'.**

And with many things in just trying to live, I soon forgot to notice that I was no longer laughing to both the boisterous level or at the frequency that I had prior to the latest transplant. It's absence became normal. This necessary piece of me had vanished. And I hadn't even noticed.

That is, until February 13, 2016, while seated at the Forks Market. Ironically, my then visiting niece and I had spent that morning at the Canadian Museum for Human Rights.*** Sean and the kiddo had spent the morning at the Children's Museum. Shortly after noon, we agreed to meet at the Forks food court for lunch. During that lunch, Sean and I began discussing which one of us would go home to put the kiddo down for his afternoon nap, and which one of us would accompany my niece back to the Human Rights museum for the remainder of the afternoon. 

And, like any in-a-long-term-relationship couple, we did the logical thing: we would make our decision by playing Rock-paper-scissors.****** Whomever won would get to stay. 

I am not quite sure what happened next, but for some reason, once Sean had counted the expected 'one-two-three' prior to us each showing our hand, I hesitated. Without even thinking, I waited a split second after he had put his hand into the shape of a rock before I showed mine. I don't know why I even did this -- it was not a conscious choice. But everyone at the table erupted in laughter, myself included. Sean being Sean, began waving his arms in the air, and a hilariously indignant speech ensued. He could not believe that I had broken the Rock-paper-scissors rule. 

This was the first time since the transplant eight months prior that I belly-laughed: there I was, seated at the Forks, nephrostomy tube and bag still hidden under my well-used leggings, laughing. I fully guffawed. I, bent over onto the table, head in hands, salty tears escaping down my cheeks, snorts and snot erupting from my nose, laughed. And it felt so very good.  

 

*no hills to jump off of. Not big ones, anyway.

**gift of life:  this is a bit tongue-in-cheek (or kidney-in-abdomen?). This 'gift of life' is the slogan of organ donation. And I agree: organ transplantation is a gift of life. And I am in awe of those who do decide to donate. But sometimes the pressure on recipients to be grateful for such a 'gift of life' is a heavy thing to bear, especially if post-transplant surgery is not easy.

***a well-presented and fascinating glimpse into human rights. But it is not the happiest place;**** it's basically a history of how humans have, and continue to hurt each other. 

****it is not Disneyland. I repeat: this is not Disneyland. Please leave all mouse o' Mickey ears at home. Wearing them will be frowned upon. Greatly frowned upon. Seriously. Don't wear the ears.*****

*****oh gosh. I see now what I have done. By my mentioning to not wearing those mouse o' Mickey ears, you now want to wear them right? Golly. Humans. How does any Deity put up with us?

******we are very mature.

 

On a Newly Found Appreciation of Flopping.

One of the best things about having this third transplant is being able to flop into bed, warm up under the covers and happily hit the proverbial hay. No machines to set up, no 2.5 bags of dialyzate fluid to heat. No tubes to attach.

Just sleep! No medical rigamarole with which to contend. Sometimes, I even skip brushing my teeth.

But don’t tell anyone.*

 

 

*especially my soon-to-be three year old son, who only recently started ‘tolerating’ brushing his teeth.**Those kids, man. They watch everything you do. Parenting can be summed up: just don’t do everything you really want to do because there’s little toddler hawk-eyes watching you. All the time.  


**I am being a tad generous with the phrase “brushing his teeth”. It pretty much is a quick toothbrush-in-the-mouth-two-seconds-of-minimal-contact- of-said-toothbrush-with-his-teeth, and a gargle of water and spit into the sink. He likes the spitting part the best. Oh, and spreading the toothpaste from his brush onto the mirror, tub, vanity, etc. Fun times.

Houston, I Think we Have a Problem.

I think I have a problem.

I didn’t sleep last night. Well, not much anyway. It was the night before an early clinic. I put my overly-tired* body into bed at 10:30 pm to administer a weekly Aranesp injection.** I’d reasoned that by the time I’d finished jabbing my belly with yet one more needle that surely there would be enough shut-eye time to act as a more patient and kind human the following day, one hopefully without the usual ‘hello-bag-lady’ bags under my eyes. It didn’t work. I still had those dang bags.***

(And I’m not even going to speak to the 'patient and kind human' part. Let’s just say those were not there the next day either).

So last night. Being the diligent person I am, I went to bed early. I looked on my phone. I read my book. I turned my bedside light off. And then I laid there, in the dark with my head on the pillow, ear plugs firmly inserted in each ear,**** with my eyes closed for an achingly long time. In the time that I waited to enter that sweet gift called slumber,***** my brain saw it as an opportunity to talk. About everything. And I made the mistake of indulging it.

This brain of mine can be a chatterbox, let me tell you. At night, he especially seems to like to drag up old hurts and worries, and, just to mix it up a little, occasionally tosses in some good ol’ existential angst. He’s a crafty one, my brain is.

So when Sean came to bed he did not stand a chance. I yanked out those earplugs and blubbered, cried and snotted out random hurts and frustrations. Poor guy. He just wanted to sleep. The ‘it’s after 10 pm rule’****** was mentioned and (wisely) adhered to. His light was turned off and he quickly drifted off into dreamland.

Eventually, I too, fell asleep. But it was fitful and un-relaxed. I woke in the morning to a familiar exhaustion and severe sinus pain. The positive-junkies would tell me, at this point, that I should have just chosen to be happy and live the day as if it were going to be great. They are right, of course. I should have popped a Tylenol and sang a cheerful tune. But my head hurt too much and the bags under my eyes too deep and that dang anxiety was keeping my body too tight for any sort of happy-clappy perspective to occur at 6:30 am.

It was going to be a fun day.******* 

You see, I think I have a problem. I have anxiety about two things: the darkness of the deep sea and going to bed knowing that I have to get up early the following morning, get ready and head out the door in a short amount of time.

What I don’t like is the anticipation of needing to get up early. All the contingencies that need to be thought of: have I packed the lab requisition? My medical card? Have I packed my morning meds, the ones I cannot take prior to blood work stored in a separate container? Have I packed a snack for prior to taking those meds? Have I packed snacks to keep the kiddo appeased during my time of getting blood drawn? Have I packed more snacks for the actual clinic time, when we will be in a small room for awhile, with only do-not-touch medical equipment around for the kiddo to touch? Have I packed his to-go toilet? A change of pull-ups for any accidents? Diaper wipes for his need to poop immediately when the doctor finally arrives in the room?

Have I located and packed the bike-lock key so that we can lock up the wagon for the ride home? Have I packed the wagon? WIll it fit in the car?

Do I have the 24hr urine container? Is it labeled?

Do I have clean clothes laid out for the morning? Does the kiddo have clean clothes laid out for the morning? Is it going to be cold? Do I need to pack warm sweaters? Toques? Mittens? A bus ticket just in case it’s too chilly to even try walk home?

Is my travel mug ready and clean? Is the kettle filled with water and ready to be turned on in the morning? Is there something I can quickly grab for breakfast on the way out the door?

Do I have my wallet? (I am notorious for misplacing it and frantically searching for it in the morning, usually with a fuckaduckduckduck simultaneously murmured under my breath all the while I search for it).

And here’s the usual outcome: I don’t sleep much the night before. I get up, tired. I slap makeup on, brush my hair, and do all the morning routine stuff. I sometimes screw up. As mentioned, my wallet usually is lost for awhile, and disasters do occasionally occur: this morning the key to the bike lock mysteriously disappeared on the short distance from the front door to the car. I have no idea how it happened, but it did*******. And, on the way to the hospital, a wee-bit of that 24 hr urine leaked onto the car seat. I happened to sit in it, and had a damp,  pee-soaked bum for most of clinic, but no big deal, right?

Hi, my name is Natasha and I think I deal with anxiety.

 

 

*read: grumpy.

**Aranesp = an injectable drug used to increase the production of red blood cells. I don't participate in competitive sports because if I were tested, I would be disqualified and shamed due to performance enhanced drugging.

Okay, I'm just joshing you. I don't participate in competitive sports because I am humble and want to let other people to win. I'm a very nice person.

***Sometimes I feel like I need to put a label on myself explaining that I do not normally look quite so tired. But I recently (while slathering on ridiculous amounts under-eye concealer one morning) had what has come to be known as The Most Horrible Epiphany Ever: I realized that I do! I do look tired all the time. There’s no going back. It’s a new-old face I’m in. I’m trying to be brave about it all, this whole growing-old-with-grace-thing. But I also confess that I recently went out and bought a shitload of under-eye concealer.

**** I wear ear plugs. One of us snores. Not saying who it is. But it is someone who is 6’4”, male and until recently, had a mohawk haircut. 

*****sweet gift of slumber. Only those with anxiety-induced insomnia know how true this is: restful sleep is a gift. A necessary gift. The older I get, the more I think some historic wars could have been prevented if everyone involved had just decided to take a long, peaceful siesta. And maybe drink a rum and coke. A well-mixed rum and coke couldn’t have hurt either.

******The After 10 pm Rule states that nothing good will come out of a disagreement engaged upon after the hour of 10 pm.

*******Not fun.

********That night I would discover the key in the back pocket of my jeans. I guess I had put it there. I admit that I have no recollection of doing this.