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Blogging Bar Mitzvah

I’ve been a blogger now for 13 years.

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When I started this blog, this arm was jabbing me from the inside. Now it’s gone and grown up. (The arm. Not the blog.)  I mean, “grown up.” But still.

Even though I don’t keep it up as well as I should – the people about whom I used to blog a lot have their own lives, thoughts, feelings, experiences and can express them in multiple languages, up to and including emojis – having this outlet has been a great gift.

Reading the archives from my first month – January 2006 – I can see that while my life has changed SO MUCH, I don’t know that I have, per se. I’ve graduated to caring less what people think of me and my choices (though I will second guess them from here to next Tuesday); I hear that this is a side effect of turning 40, and I am maximizing it.

My kids continue to grow up. When I started to blog, I was pregnant with AM. Miss M was 18 months, communicating with a weird mashup of signing and speaking. Most things she did were adorable, except for poor sleeping. That’s never fun.

We didn’t have a clue that she was going to be brilliant, hyperlexic, and wind up both on the autism spectrum by age 10 and taller than me by age 14. With her we had the blessing of being able to ignore every piece of parenting advice we ever received – she’s her own person and parenting her has no manual.

Life with AM, the surprise baby, has unfolded in a more ordinary manner, though I keep wondering if he manifests more typical “first child” quirks that Miss M never did. It’s still a challenge to show up and do the right things for him, as there is shockingly no manual for him either. Not even one of those IKEA ones that’s just pictures of screws that all look the same! (Now I’d have to hold it at arms’ length with my glasses off, because did I mention middle age also comes with physical side effects?)

Honestly, I’ve considered shuttering this blog a few times. Nowadays, I spend more time consuming content than creating it – not necessarily a good thing, but it is what it is, for the moment. But then life takes an unexpected turn – aliyah in 2009, kidney donation in 2018 – and I’ve got my digital journal for the emotional spillage.

If you’ve been here for any length of time, thank you for reading. No snark! I really mean it. Virtual company is nice. Pull up a chair and have a hot drink; it’s January, after all.

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The granola of my discontent

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Nutritious breakfast or bitter fruits of labor?

I’m going to quote me back to myself, from one of my long-running and excellent parenting groups on Facebook.

Parenting middle grade kids is basically endlessly wheedling them to display their competence even though it would be so much easier to do it (whatever “it” is) yourself.
(Unlike toddlers, where it’s easier to do it yourself because they are NOT competent.) ~ Sept. 15, 2018

(The real post contained profanity. Because it was borne of frustration.)

This tension occupies way too much of my life. I have worked really hard to start my kids on the road to independence. This means they can navigate from home to their grandparents’ house in another city via bus. They can launder their own clothes. They can do dishes, clean bathrooms, sweep floors, take out the trash. They can order at the cheese counter and at the butcher. They can handle themselves at the dentist!

But the gap between checking the box of competence in theory and in reality, every day or every week, is enormous. Let me translate: If you’re wondering how many times my children will pass through the kitchen, where the clean dishes are perched on their racks in the dishwasher-that’s-ajar, and not empty it, the answer is infinity. Which is coincidentally the number of times they will move a pile of clean clothes from the couch to the love seat and back again, rather than a) folding it and/or b) putting it away.

I mean, come on, they already used up their energy fighting over who could use the computer at 6:25am, and I wish I were kidding about that. (The answer is: Nobody – nobody – should be on the computer, playing worm.io or watching Miraculous Ladybug, at this hour or really any hour if you haven’t even cleared your dishes or brushed your teeth or are risking being late for your transportation to school. If you know my super-cool tween internet references, well, here’s a fist-bump – and I am so sorry. *bump*)

It takes a lot of energy to run a house, and I frankly don’t have the right kind, or enough, or whatever. I am not neat, organized, thrifty, motivated, or any other adjective that would indicate that I am enjoying this part of adulthood. The endless cooking, cleaning, straightening, organizing, and harping at other people to just do what I asked, Jesus, it’s not that hard.* Be careful, you might trip over my standards. Thankfully, I am way past thinking that this makes some sort of statement about my parenting. Nobody would accuse children of being poor excuses for kids because they can’t manage to keep their clothes off the floor, or turn the lights off when they leave a room.

A flashpoint in this whole schematic is, and I am not being dramatic, granola.

Years ago, I came down with an edict that We Don’t Eat Cereal Every Day. It’s expensive (here) and a fair bit of sugar for the beginning of the day (Cheerios have given way to a combination of Cheerios + sugary Cheerios +  Honey Bunches of Oats). Alternative days involved yogurts and cottage cheese or leftover pancakes or fruit or “no, it’s not a cereal day so have something else.” A while ago I started making granola as an alternative. It’s expensive to put together (nuts, peanut butter, maple syrup), but makes a lot of servings. It’s sweet and carby but also protein and whole grains, so please let me have my fantasy  of Good Mothering, ok?

It also creates a lot of sticky dishes, and I have panic attacks when the kids leave soggy leftovers because WASTEFUL and also the dishwasher will never clean that properly unless you RINSE?

I have taught my children how to make this granola; they know where the recipe is. It’s not hard. But somehow they’re never motivated to make it, just to ask me to make it, and to ask me at 6:15 in the morning (currently, this time is before sunrise) why I didn’t make it last night after they went to bed?

NB: Children ages 12 and 14 never go to bed. Actually, that’s not quite true; the 12-year-old will go to bed an hour Before Never, but he is not happy about it, you know?

Yes, they have long school days. Yes, they have to travel to school. But they also have enough hours to sit and be served before I beg them to lend me a hand for 30 seconds or five minutes. I am almost sure this is normal, but wow, is this going to drive me over the edge.

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Put on your seatbelt and stop touching your sibling.

Then my husband eats bowls of this granola for snack. After dinner. And cannot understand my fury. I feel petty and small, yet unmoved. It is the granola of my discontent.

With apologies to David Lebovitz, who is innocent in all of this. You too, can bring this contentious recipe into your life! Here.

* True story: Just today, I asked my daughter to do about six minutes worth of dishes while I was at the pool. “Sure,” she said, staring intently at her phone.
“Are you going to manage to do them before I get back from the pool?”
“I don’t know.” **
Which, I mean, points for honesty.

** She did not. But did them when I asked her to, again, upon my return from the pool. “Did you make granola?” she inquired, inspecting the many bowls in the sink.
“Yes, I did.”
“Oh, good.”
“It is for breakfast.”

Two bits later

Two bits is a quarter, get it? A quarter of a year? Three months?

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Anyway!

The kidney formerly known as my left kidney has been in its current location now for three months. It feels like a long time ago, to be honest.

Despite feeling that my recovery was too slow, it really wasn’t; in the grand scheme of things, six to eight weeks is…not that much.

The only place I don’t feel normal is in Pilates class, which is two (or three) hours out of 168 per week. So…not bad. I’ve definitely been knocked down a peg there, which is a little bit of an emotional struggle for me – to have to “lose” some of what I had earned over 3 1/2 years. I know it’s only three months, but I feel so “regular” elsewhere in my life. Even there, compared to six weeks ago – when I started back with a couple of private lessons – it’s incredible that I can do any of these things again just from showing up and doing the work and pushing a little further each time. But certain exercises make me feel like my incisions are lighting up – not in a bad way, just sort of like a car warning light. Just direct your attention to your abs and don’t do anything dumb.

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What I can’t get over are the “you’re a hero” conversations, which thankfully are decreasing as I’ve been out and about in the world. These are kind of no-win, because:

a) I am not, in my estimation
b) this often leads to other awkward revelations, like when people say they could never do that…what do I say here? Either you have a legit reason (you’re not healthy enough, you can’t afford the time off of work/life) or you don’t (I am really not one to judge though; it is a lot for most people to wrap their heads around)
c) this leads questions about the recipient, who is doing just ok – it’s not a miracle for him, but one part of a very complex treatment puzzle that is still being worked out

My kidney clinic follow-up in is two weeks. I did labs for it today, and I am kind of afraid to check them. I feel fine; I don’t have incision problems or extreme fatigue or pain, so part of me would like to remain ignorant of my blood panel and kidney function. But that’s not how it goes now.

I don’t have any words of wisdom, other than I still think more people should do this. The waiting lists are too long; people are suffering and dying while waiting; donors don’t have to be exceptional or in perfect condition to do it.

I was recently tipped off to a podcast about a kidney donation, and I identified so much with the donor. Unlike her, it wasn’t on a “bucket list” for me (I don’t have one), but just the idea that you have the capability to help and you do it with temporary mild-moderate inconvenience and think more people should. Listen here (it’s three parts, plus a follow-up). Someone in my Facebook group for living kidney donors said she signed up after hearing this podcast, so if anyone has been inspired by my blathering, I would really love to know – you’d make my quarter.

 

Danger Zone

I am doing a lot better than I was three weeks ago.

But I’m still not 100%.

Exhaustion creeps in from time to time. In particular when I forget that I recently had surgery. Sometimes, I’ll get a quick flash of pain along one my scars. It’s all very Harry Potter except I can’t speak to snakes (sad about that) and don’t have a blond kid trying to take me out on a broomstick (not sad about that).

What I am is in, as I put it, the danger zone.

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There have been my own little baby milestones to feeling better. Being able to sleep on my usual side in bed – this was a huge one for me, since at around three weeks after the surgery I lost the ability to sleep on my back. (Also: Being able to roll over in bed without feeling like my insides were rearranging.) Being able to put together an entire Shabbat meal without feeling like I needed to take a nap in the middle. Being able to host people again. Going swimming without negative consequences. Having a personalized Pilates lesson to assess what I could do.

I feel well enough to behave absolutely normally, but if I do that I am probably going to be sorry.

I feel well enough, in theory, to lift that 5 liter bottle of laundry detergent at the grocery store, until I actually do it and realize that it was a mistake. For the record, my children were with me at the store, but they were in line while I had gone to chase down another item.

I feel well enough to swim, but then after 500m I realize I’m on my pre-surgery pace and have dull pains for hours afterwards. Oops. (I started out really slowly, at only 25% of my normal distance. But then I went swimming almost every day for a week, and then this happened.)

So the difference between 90%/95% and 100% is more than I might have thought. Clearly I need more supervision. Or just maybe more couch time and potentially a return to the concept of naps. Luckily, school is starting and at the very least I will spend less time and energy shouting. (That returned much sooner than anything else. One does what one has to!)

7 weeks and 2 days. Still creeping back. I’ve got this.

 

 

Humble Pie

Recovering from surgery has been more difficult than I anticipated.

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You can’t always get what you want

Mostly because of unrealistic expectations and mismatched comparisons. The biggest rabbit hole I fell down was that kidney donation recovery would be similar to a normal (low transverse) C-section recovery. I mean, yes, in that you have abdominal surgery and the attendant issues with things like getting out of bed and pain in similar places, but no – the residual gas pains, bloating, full-torso discomfort and extraordinary fatigue have been only with this surgery. So for maybe 7-10 days, while I was on the good meds, the aftermath felt similar, but then things wildly diverged.

A baby to tend to, while exhausting, is also a great distraction. While at home, now, the days have been long and relatively quiet – although getting my kids off screens and doing chores always causes some noise – so 2 weeks felt longer than 2 weeks, and 3 weeks felt longer than 3 weeks.

“Why am I not better?” I would demand of my husband every other night.

“Why are you not understanding this?” he would counter.

But apparently, the standard 6 to 8 week recovery is really A Thing – because the first couple of them seem to be dealing with just the leftover surgical process (helium inside you! fluids! manhandling of your insides!). Then your organs resettle, your skin knits back together. It’s a little gross unless you’re a medical professional, to be honest.

I was, I don’t know, arrogant? Unrealistic? I thought that being in good shape – I try to exercise five times a week – would somehow help me bounce back faster. But it turns out that surgical trauma doesn’t really take stock of how you were BEFORE, just whoa those are some holes in your body (inside and out), so let’s rearrange everything and see how it goes.

Now, I also feel like I am getting conflicting instructions – namely REST REST REST constantly and also WALK AROUND TO GET BETTER. These two things can’t really be achieved at the same time.

I can drive again, which means that I can errand. The mall is air-conditioned, so I will try to maybe come up with an errand per day in order to tool around for 15 minutes in a cool space. Then come back and sit in my rocking chair. Balance. Or something.

A friend who has said she wants to donate a kidney in the future has already told me not to talk about the pain, thinking I will scare people off. But I don’t want to blow smoke.

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This doesn’t help anyone

I don’t want people to think they’ll feel better in three weeks when it takes double or triple that. People should readily accept meals and chores and help and favors for at least a month, instead of thinking that two weeks will be enough. (I thought I wouldn’t need a third shabbat catered by friends and acquaintences. I didn’t, exactly, but not because I cooked – rather I spent Friday night in the ER, making sure I didn’t have a pulmonary embolism, while my kids unexpectedly were fed and housed by friends. But now we have uneaten Shabbat food for days!)

The important thing is, my regrets are along the lines of “I should have been more realistic in my plans” or “I am sorry my kids are having a boring summer with a mom who can’t really do things.” But I don’t regret donating. Not for one second.

This is the end. The beginning is herePart 2  Part 3  Part 4

During the psychological interrogations, one of the questions they are keen to ask prospective donors is: What if your donation is a failure? What if the recipient’s operation isn’t a success from the get-go? What if your organ is rejected by their body? How would you feel? Meaning: What if this big, risky effort on your part ultimately means nothing?

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Sometimes you don’t know until you’ve already arrived.

My answer in these interviews was always the same. I would be disappointed for him, obviously – the point of this undertaking is to improve his health – but as far as I’m concerned, I am doing all I can. And it’s a one-shot deal; I am fully cognizant I cannot do this again.

I put a huge amount of trust in the expertise of the transplant team. Not only for their surgical skills on the day of the big move, but for their assessments leading up to it. I had been warned when I “entered” the program that the doctors might decide that my kidney was better suited for someone else – someone more gravely ill, someone with a better tissue match, a child (I am relatively petite). But after all was said and done, I was told that the pursuit of my original match, the man behind the newspaper ad, was fine – I was a good fit for him. (Irony alert – he’s quite tall.)

In the crucible of the hospital, my recipient and I slept three rooms apart. Our partners constantly ran into each other in the hallway, swapped news, offered to bring each other food from the cafe downstairs. (I am going to hazard a guess that in America, this does not happen for altruistic donors and their recipients.)

So, you know, since we are now entirely bound up in another family – I am happy to report that things, cautiously, look good. (We get texts from his partner almost every day.)

His creatinine fell almost immediately. (This is very good.)
His hemoglobin is on the rise. (Anemia is associated with low kidney function.)
The period for acute rejection passed quietly.

(Althought it is only partially true that I don’t feel responsible for what happens. While the nephrologists are fine-tuning his meds today, I wonder if I have eaten too many gummy bears. This week. After the transplant.)

I am thrilled that he is feeling better and can leave behind the thrice-weekly grind of hospital dialysis.

My entire goal was to help someone live his life better by facilitating better health. I am lucky in a lot of ways – financially secure and in solid relationships – but I know that my health is the bedrock for everything I want to do in my life.

If I want to travel, I can save up money and vacation time and arrange it and go – worst case, I’ll need some vaccinations or antibiotics.

My health and Taxman’s health never prevented us from having children. (Our brush with infertility in the early aughts was never explained and was ultimately resolved without intervention.)

I am truly free to choose a multitude of paths. Because I am a healthy person.

Why wouldn’t I want to share that with another human being? Even if I didn’t know him before?

I don’t think this makes me a hero. I don’t feel like I “saved” him. I know that kidney donation isn’t forever. It is, when successful, a long-term treatment option for kidney disease. I hope that this will give him years of good health and allow him to do, really, whatever he wants – get a new job, travel the world, have a child, anything.

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Don’t get me wrong, I feel very gratified that he is recovering successfully and things appear to be on the right track. But he still has a long road until things are “normal” for him – as normal as they can be, considering he will be immunosuppressed for as long as he’s got a “guest” organ. (By the way, I must make it clear that this new kidney of his isn’t mine. As soon as it was out of my body it ceased to belong to me – I cannot view it as my kidney in a new location or anything like that. It was a gift and now it’s his, the end. Even if I still feel some weird sort of responsibility for how it behaves. Yes, I am a bundle of contradictions.)

What feels miraculous to me is the science behind this. Organ transplants! Who knew? Tissue matching! Anti-rejection meds! And it’s been happening long enough, as I told the panel in my vaada, that long-term studies can now tell me my risks for 30 years from now.

So that’s my kidney donation story. Six months of testing and pestering, unloading my frustrations in therapy and in one of my private Facebook groups and on my ever-patient husband, who did an excellent job of compartmentalizing his own anxiety as I chased down this unusual pursuit.

I feel both changed and unchanged. For the moment, I can adequately drop the “I am not doing enough to earn my place on Earth” that I so often feel haunted by. I am not making life better for tens or hundreds or thousands of people, but just the one (and everyone whose life touches his) – this, however, has the makings of “enough.” Dredging up a mournful stance for Tisha B’av, never easy for me, was supremely difficult this year.

I would say “don’t try this at home, kids,” except the opposite. I really want to encourage people to consider being a living kidney donor. There aren’t enough kidneys for all the patients who need them. Long-term prospects for dialysis are grim. Too many people die waiting for a kidney.

Could you be someone’s match?

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For an adorable story about kidney donation plus good insight as to how you can really turn someone’s life around, listen to this Death, Sex, & Money episode.

For general information about living kidney donation, check out the National Kidney Foundation.

Jewish organizations that facilitate kidney donation (Jews, as an ethnic group, are among the least willing to be organ donors):

Israel
United States

If you’re willing to be a post-death organ donor but haven’t signed up, please consider registering today:

Israel
United States or your state DMV

Up until now:
Test of body
Test of psyche
Test of patience 

So there I went, trundling into the hospital again with my huge suitcase (pillow, robe, towel, toiletries, clothes, book, knitting – I did not use most of these things) and snack bag (I figured Taxman was going to need a lot of snacks, not just me).

Things went much more smoothly this time; I actually got a hospital bracelet, had some preliminary checks (bp, temp, blood draw). I had to recite my teudat zehut (national identity number) every five seconds.

I was pretty relaxed, all things considered. I got a room, and my sherpa (Taxman) brought all my stuff. We met my roommates, who despite both being kidney recipients were agog that I was going to donate one. (Isn’t that…how it works?)

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Take this one.

I curled up on the bed with my knitting and got yelled at by a nurse – the beds are only for patients. I waved my bracelet at her, and she apologized. My surgeon, Doron (apparently first names are de rigeur at this hospital – my anesthesia pre-op check before the July 3 fiasco was done by Eran, and the anesthesiologist who kept me alive during the surgery introduced himself as Eitan…adorbs), came by to explain the procedure, again. But this time added that I needed to sign consent for blood products – they were going to have a cross match just for me on hand, just in case – and explained that they were going to take my left kidney. I apparently have uncommon anatomy – most living donors give their right – but my blood vessels were longer and more accessible on the left, so there you go. Doron drew a stylized arrow on my lower left abdomen with a Sharpie and saw himself out.

It was time for me to start being a hospital patient. I had to shower with some antiseptic, and it was confusing to figure out what exactly I had to wash with what, and where, and when. I managed, somehow, but felt foolish. I got an infusion port and some fluids. Then before I knew it, Ofer the orderly appeared with my surgical gown and a bed on wheels. Awkwardly, our congregational rabbi appeared at the same time and wanted to chat and offer his good wishes…at the same time that I was supposed to be literally naked under a sheet. Oh, well, ok.

Taxman helped me into the gown – getting rid of my bra now that I had tubes out of my arm was a TRICK AND A HALF – and then I was there, on the wheelie bed, with Ofer. Taxman got to trot alongside all the way to pre-op, and hung around while I kept sending whatsapps to people who thought I was already unconscious, so that was fun.

At a certain point, another man in scrubs pushed my bed out to a hidden set of elevators, and we went up. I was greeted by Yudit, a nurse, who brought me to the OR, where Eitan surely said some things (I don’t remember), and I was attached to the bed (it was narrow!) in various ways.

….THREE HOURS PASS….

I woke up in recovery. Or, that is, my mind snapped to attention and was racing, but I didn’t feel capable of forming physical words when a doctor in the recovery room asked how I was. Ofer appeared again to wheel me back, but the doctor didn’t like something going on with me (my pulse rate? my color?), and I was infused with something.

I catnapped in five-minute increments for probably an hour. Ofer returned, at long last, and I was feeling normal enough to make a cheesy joke to him – pa’am shlishit glida.

I got back to my bed, where poor Taxman had to watch me have a sleepless night – my legs were in compression “braces” that got vented every 90 seconds to enhance blood flow. Plus a blood pressure cuff. Plus a pulse-ox. I got what I assume were a ton of pain meds, but not a wink. No sleep for the post-surgical….

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Fussy sleepers don’t do well with all this garbage attached. Ask me how I know.

The next day I felt really terrible – nauseated and exhausted. I begged the nurses to leave in my catheter for a few more hours so I could stay in bed. They did, but also insisted that I sit in a chair, so I was nauseated and exhausted while sitting. Hours 12-24 post-surgery are ones I would be glad to forget, although I got a dose of Zofran, and that was quite nice. (I have to interject here and say that the nursing care I got was really amazing. The staff was dedicated transplant nurses, nobody from other departments, and to a person they were great. It was also like a Benetton ad – over the course of my 72 hours in the hospital I was attended by Rabia, who wore a hijab; Moriah, who covered her hair in the style of a modern Orthodox married woman; and Jacob, who wore a huge crucifix and worked on Friday; plus Avital, whose first language was probably Russian, Mazal, Ornit, Alona, and others.)

Thirty-six hours after the surgery, I lost all my infusions. Doron came by to tell me that I was now responsible for hydrating myself, and I should have clear urine, so drink a lot, and I should start eating. Hahaha! I drank a lot, and peed nearly constantly because I couldn’t bring myself to eat anything – though I held a pretzel stick and a cookie and gesticulated with them at various points. But the trips to the bathroom kept me walking, which is also an important post-surgical thing. I finally was feeling well enough to sleep, so I cycled through nap-drink-walk-pee for most of the day. By the end of it, I was feeling almost human again, except for having literally no appetite. I managed to get outside a couple of times, and have some brief visits with friends. Almost human.

The expectation was that I would go home on the 3rd day after the surgery, and so it was. I was released, bloated with medical grade helium and nursing a torso’s worth (ok, just 3) of laparoscopic “stab wounds,” clutching a bottle of Benefiber and a prescription for opioid-coated acetaminophen. (NSAIDs are, due to having only one kidney, verboten from here on out.)

I was reunited with my kids. We spent Shabbat in Jerusalem with Taxman’s parents, where I finally ate real food (that is, I wanted to eat and successfully did).

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Like this, but with matza balls

But this probably isn’t what you want to know. You want to know what it feels like to save another person.

For that, you’re going to have to stick around.