More than you need to know about it, really

It wasn’t appendicitis.  My appendix was inflamed and we took it out (that’s what I do these days), but my surgeon thought it might have just been caught in the crossfire of the other issue.  Pathology later confirmed there was never any appendicitis.

It was acute small bowel volvulus: in pretty terms, when your small intestine ties itself in a bow and (as you can imagine) stops working after that.  A volvulus in and of itself is not uncommon; however, volvulvus of the small intestine (something occasionally seen in infants or young children as a birth defect) is extremely rare in adults.  So uncommon, in fact, that the studies on the issue show only a handful of cases every year, and there are only a couple studies I could find on it at all, quite frankly.

Because it’s so rare, the question of the hour is why did it happen to me?  Or, in medical terms, was this primary or secondary small bowel volvulus (i.e., did this happen on its own or did something cause this to happen)?  The obvious trigger is my hysterectomy — in fact, in the most recent study I could find, which identified 35 cases of acute small bowel volvulus in adults over a ten year span, 23 of those cases had had prior abdominal surgery.  However, in those cases, the cause of the volvulus was obvious: postoperative adhesions.

I had no adhesions.  I had no nicks, leaks, adhesions, or other obvious signs that something was amiss.  And I am pretty convinced, based on everything my surgeon had to say, that he checked thoroughly.  “Absolutely none,” he said emphatically in his quasi-German accent.

As for primary acute small bowel volvulus, because it is so rare, they have no idea what causes it.

But as I said when I thought it was appendicitis, could I be that unlucky?  The two surgeries surely have to be related in some way, even if it isn’t obvious.

Whether it was primary or secondary — and for the sake of my sanity I am assuming secondary — I will undergo a number of tests, including repeat scans, beginning in a few weeks when I have healed enough to see if we can learn anything else about why this happened.

Is it likely to occur again in the future?  Not necessarily — in the study I referenced above, three of the 35 patients had this happen more than once; however that was not explored further, and there really isn’t a reason to assume this would happen again, aside from the fact that we don’t have a reason why it occurred in the first place.

The one thing that is certain, though, is that in any case, immediate surgery is critical, and I am grateful that my CT scan showed enough junk and inflammation (even if it didn’t actually show them what was wrong) to get them to move quickly toward surgery. And as I mentioned in my previous post, the doctor on call in the ER was very firm that surgery was urgent (if only to deal with my ruptured-not ruptured appendix).

Pics in order:
1. surgery one, 1 day post-op (three total incisions inc. belly button);
2. surgery one, 3 weeks post-op;
3. surgery two, 1 week post-op, and 6.5 weeks from surgery one (one long incision, still taped, and one shorter incision exactly along my star tattoo — my surgeon was quite pleased with his creativity on that one).

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So now it’s back to recovery, though this one is much more difficult than the last.  Not all laparoscopic surgeries are alike, apparently.  I’m one week post-op and still struggle to get up and down, walk much, and move around.  I still feel shortness of breath and nausea when I first start walking, and if I sneeze or cough… well, I may as well be ripping my stitches out.  But I do feel some improvement (slowwwww improvement), and I am confident I’ll be able to go for some walks by the weekend — at least get out of the house!

I have another six weeks of restrictions (if we’re being honest, “at least 6 weeks” may be more what my surgeon said), which means, of course, no paddling, but also none of the other things I was looking forward to — like picking up the kids and swimming in the pool with them.  In April, I had planned a trip — a reward for getting through the other surgery! — to NC to paddle with the #1 female paddler in the world who is flying in from New Zealand.  It was only for a night, but I had a nice hotel room, and I was so looking forward to it.  I canceled it already — on Monday, when I was exactly 6 weeks out from my first surgery and had big exclamation marks on my calendar indicating the end of recovery.  That definitely hurt a bit.

But here we go again.  Hopefully by this time next week, my mornings will be recovery walks on the beach and sea glass in my pockets.  And maybe this time around, I won’t need winter coats and hats.

The Second Surgery

The kids had been sick for three days — fevers, stomachaches, one very random burst of vomit from Guy — so I assumed I had the stomach bug, too. I was queasy, thirsty, didn’t feel right. I fell asleep at lunchtime, picked the kids up from daycare early, and was happy to come back and rest on the couch with them that evening.  I went to bed still queasy, but otherwise fine.  Just a stomach bug.

That was a week ago.

That night, around 11, I woke up to a stabbing pain along my right side and waves of nausea that would have sent me scrambling, except that I could barely move against the painful spasms in my abdomen. The night was a long blur of moving back and forth between the bed and the bathroom, trying to find relief from the pain or the nausea (both seemed too optimistic), but neither came.  When it was time to get ready for work, I just shook my head at G, and curled back into a ball of misery.

It wasn’t long after he left that I realized something was wrong, and it might not just be a stomach bug.  The pain on my right side was becoming more acute.  If I hadn’t just had surgery, I said to my parents on the way to the emergency room, I would say it was my appendix — but surely I couldn’t be that unlucky?

The emergency room was a long, drawn-out nightmare. They had no beds available when we got there, so G (who had turned around on his way to work and met us there) and I waited in a small room — the pain for me was becoming intolerable at that point, and he was feeling helpless to do anything.  But finally, a bed opened up, and I don’t really have a good sense of time after that.  We got there early in the morning and the next actual time I remember is 8:30 pm when I was awake after surgery.

In between that was a lot of pain, a lot of nausea, and very little relief honestly.  At some point in the afternoon (mid-day? I don’t know), I had a CT scan.  It wasn’t long after that that the nurse came back into our room.  “Appendicitis,” she said.  I asked her to repeat herself.  All I heard was “another surgery.”  G said, “We should have taken that out last time.”

But the doctor came in and explained that actually they couldn’t see the appendix at all.  There was too much inflammation in that area on the scan.  There also appeared to be pockets of air.  His guess was that it had already ruptured.  At any rate, quick surgery was necessary.  He contemplated sending me to a university hospital but felt the wait would be too long, and he was also very confident in the surgeon on call (who several of the nurses said was the best surgeon they had, for what that is worth).

The issue of the serum sickness was a tricky one — obviously I haven’t yet identified what caused it last time because who knew I’d need that information less than three weeks later.  I still had all the paperwork on serum sickness from NIH and other sources printed out in my backpack, which I shared with the surgeon and the anesthesiologist.  Finally, after lots of conversation about it and a call to my GP, they agreed to switch one of the agents being used for general anesthesia, give me a strong dose of pre-op prednisone, and follow that up with antihistamines for the length of my hospital stay.  Agreeing to those terms, I finally signed the consent form for general anesthesia outside the OR and was asleep before the ink was dry.

The next thing I remember was G by my side that night.

“Did the doctor talk to you after surgery?” he asked.  “Did he tell you what it really was?”

 

Just keep swimming

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It has been more than three weeks since surgery, a little over halfway through my doctor-prescribed surgical recovery and restrictions.  So far as I can tell, my recovery from the surgery itself seems perfect.  I can see the light at the end of the tunnel when my restrictions will fall away, and I am desperate to get back on my board and stretch out the muscles that tighten a little more each day.

The serum sickness is still there with aches during the day that stay manageable so long as I keep moving around.  But in the late afternoon/early evening, the pain starts to settle back in like an old friend.  By the end of the evening, my back, my knees, my ankles, my wrists last night — but that one was new — all feel shredded.  My doctor prescribed weeks more of steroids and painkillers, but I am not interested in those.  Luckily my resolve to not fill those prescriptions is stronger during the day when the pharmacies are open.  I question the decision every night when I can no longer walk without pain, but then I wake up the next morning, again thinking it’s going to be a better day.

There isn’t so much online in terms of anecdotes about serum sickness — and I think it’s likely an issue of the fact that no really gets diagnosed with serum sickness.  It’s a guess when all the other obvious things — like rheumatoid arthritis, lupus, etc — get ruled out and nothing more makes sense.  What there are a lot of, however, are stories of shared symptoms, pain that comes back at night, and a discouraging time-frame that makes me think I am in this for the long haul.

So I’m ignoring the aches and pains as best I can, and I’ve got my eye on all the things that will get better and will change as I get deeper into my recovery — like my restriction on swimming, which makes G the designated swim parent right now.  Normally that wouldn’t be an issue — Guy usually spends all his pool time in the shallow end by the fountains, where I can easily play referee, but on our last trip this past weekend, he was all about all of the pool — including all of the slides.

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But just look at the sheer happiness on Guy’s face hanging out in the deep end with Daddy:

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I think his fountain days are done.

 

Sunrises and Healing

I saw the sunrise today. It started out like this.

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And then gradually got a little lighter, a little brighter.

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Until finally the sun appeared on the horizon and squeezed in for just a moment before it slipped behind the clouds for the rest of the day.

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My dawn outings began as the only time to paddle that didn’t interfere entirely with family life and our day. In the summer, when it’s light enough out that I can get on the water exceptionally early, I can even manage to slip back inside the house on certain days before Nell wakes up.  (Guy is always up.)

But now, dawn is my favorite time.  I love the sunrise — I can’t count how many I had the privilege of seeing in 2016.  I love paddling toward the light, witnessing the colors, and watching the night give way to morning.

I am not on the water right now.  I am sidelined for 4-6 weeks depending on who you talk to (me or a doctor), but the one thing I didn’t want to lose during this recovery window is my time with the sunrise.  So since I’m not paddling there, I am walking there.

A shot of the pre-dawn light earlier this week.

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I never wrote about the surgery or shared anything here in the lead-up to it primarily because it all happened very fast and it all happened over the holidays. In fact, the call that I got from my doctor explaining that the surgery would be a bit more intensive than we thought came while we were at the airport on the way home from Florida.

(If you’re not in the mood to read a surgery story, feel free to skip down to the beach pictures below!  I won’t mind, really.)

It started as a lot of pain that came in waves throughout 2016.  Pain so severe on some days that I couldn’t walk.  The bad days became more frequent, and the good days became less good, until there was never really a day when I was without discomfort.  I told my doctor in December that I thought something was wrong, and just before Christmas, I had an ultrasound that found a tumor that would need to come out, taking one ovary with it.

I had a follow-up MRI (also known as the most expensive procedure ever) between Christmas and New Year’s which confirmed the tumor and also showed that my uterus was sick (unrelated to the tumor).

So, about a month after finding all that out — last Monday — I had surgery to remove the tumor, during which I also had a hysterectomy and an oophorectomy and kicked in my tubes for good measure.  (Going in? Take it all!)

The surgery went really well. There were two major concerns going into it: that I would have too much scar tissue from my c-sections that they wouldn’t be able to perform the surgery laparoscopically and I would need full open abdominal surgery; and that they wouldn’t be  able to save my second ovary, which would have put me into medical menopause.  But neither of those things happened, and so for the last week I’ve been focused on recovery.

I really had no idea what to expect from the laparoscopic surgery.  One of my most vivid memories from my c-sections is of the first time I tried to stand up after Nell’s birth. Moving upright felt like my insides were ripping apart, and I’ve never forgotten that sensation — that awful moment when your body feels like it’s doing unreal things. I had expected something similar, but to a lesser degree, from this surgery, but I was really surprised at how different it was.

Admittedly, it took a while to get pain management under control after the procedure. My blood pressure and heart rate were too low for them to be able to start on the prescription painkillers, and there were several hours post-surgery that were almost unbearable.  But once we got on top of things, all I could think was that I needed to get up.  The bed was making every part of me ache, and I was in a near panic wanting to get up.  I hadn’t been cleared to get up until the following morning, but around 9pm that night, I begged the nurse to call my surgeon and get permission to start moving around, and doing so provided so much relief.  And I was so scared for that first time I sat upright — thinking of my c-sections and the pain in that moment — and it was absolutely fine.

It’s been a week now.  The worst of the pain early on was from the trapped air in my shoulders, which my pre-op nurse warned me about (but which no one could have fully warned me about because OMG, the pain).  But I tried to find a balance between staying active and resting, and within five days, I could no longer feel air in my upper body.

While I wouldn’t say recovery has been painful, it’s hard.  I still get tired easily, I can feel when I overdo it, and I need to lay down for portions of the day to give my body a rest.  Sitting at my desk for too long or standing for too long causes a painful pressure that I can only relieve by laying flat, which is about all I want to do by the end of the day.  But I am definitely getting better.  The incision sites themselves still hurt when they are touched or something brushes against them, so I am limited right now to sweat pants that sit below the incisions.  I am working from home this week and next to recover and regain my strength and my stamina.  I couldn’t wear a single pair of work pants comfortably right now, and I definitely couldn’t walk a mile from the parking garage to my office carrying my laptop and other work stuff.  Hopefully, by the time I return, none of that is an issue!

In the meantime, I am going to try and be the best recoverer I can be!  That means walking slowly twice a day on the beach, which is fabulous for my sea glass collection.  These four handfuls were from my first two days home.  Being slow has its benefits!

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It means walking to the sunrise instead of paddling to it.

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And it means staying off the water for now.  Admittedly, it’s been hard — we’ve had unusually warm days coupled with low winds (who knew that was even a thing around here!) and the flattest water.  I asked G whether there is a lesson to learn in the fact that almost all of my winter paddling was done on cold, windy days during small craft advisories, and as soon as I am off the water, it’s warm and calm.  He looked at me like I was nuts.

Those aren’t waves; they’re rollers coming in from barge traffic.

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Although, if we’re going to have a stretch of calm, glassy water, I am glad it is now, when I am fresh enough in my recovery that I don’t have a single thought to try and paddle.

Random picture of a very small lion’s mane jellyfish I took the other day on my walk. 

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However, in a few weeks, when my resolve is less steady, then let the seas rage!