Windsurfing, surfing, Maui, The Gorge, and random rants.

Sunday, September 18, 2011

I don't need easy, I just need possible (part I)

A lot of stuff has happened to me since my last post. Stuff of the "Oh Shit!!" major life changing kind. The fact is, I probably should be dead right now. That I'm not, and I'm writing this, and in fact feeling pretty decent while doing so is a freaking miracle. I'm going to tell the whole story here (in parts), though it might be somewhat long and occasionally filled with arcane medical details. But hopefully this might also be mildly entertaining and maybe a touch informative for some of my two  three readers. And after these posts are finished I hope to return to my usual topics such as windsurfing and girls in bikinis. Looking forward to that!

Now the two three of you who have been reading along might recall that I had typhus last December on Maui. I was very sick at the time, but when treated promptly and correctly - as I was - Maui variety endemic typhus is not necessarily a big deal. However the way my symptoms came on so abruptly was very strange in and of itself, and maybe that should have been a clue that something more was going down. I first noticed things were not quite right while out surfing one fine tropical morning at Hookipa. I paddled out, caught a wave, and then returned to the line up. Almost as soon as I sat back on my board I felt a very sudden and hard pounding pulse in my chest and neck that did not let up even after sitting for a few minutes. I also felt some pain in my gut and was a bit light headed. I seriously thought I was having a heart attack right there on my board! I didn't want to freak Julia out, so I told her I was feeling a touch of heartburn and promptly paddled back through  the reef and to the beach. While sitting there, trying to relax and hopefully feel better, all kinds of scary thoughts went through my mind. Heart attack? Stroke? Aneurysm? While these dire scenarios bounced around, my logical side tried to rule each out as improbable and ridiculous for someone of my age and good health.  Meanwhile my pounding pulse had somewhat subsided though I continued to feel very weak.

That night the pain in my gut only increased, and my heart rate went up as did my temperature. I basically laid on the couch sweating. After an uncomfortable night of fever nightmares, I went to the Kihei medical center where they did an EKG which was totally normal. Everything else was also normal except that my WBC and temperature were both raised. They correctly diagnosed that I had some weird infection of unknown origins. The sudden onset of symptoms seemed strange but not necessarily alarming. They advised me to go home and see if things ease up - basically take two aspirins and call them in the morning. Which I did - very encouraged that at least I wasn't having a heart attack. But by that evening my temperature had spiked to 103 and I felt like shit (otherwise known as "malaise"). We called the clinic and they prescribed a ten day course of doxycycline, which was about $1 at Costco. I was very skeptical that this cheap old antibiotic would do anything useful. But over the next two weeks my symptoms gradually eased, though the uncomfortable feeling that my heart was beating harder than before never went completely away. This "bounding pulse" was very noticeable in my abdomen, where I could actually see each beat rise and fall.

After my treatment was completed I returned to the clinic and, despite feeling pretty well overall, was concerned by this strong pulse that was still going on. The attending physician again wisely decided to run additional tests for various strange and exotic tropical diseases. She also suggested that I get a cat-scan (CT) to see what was up with my bouncing abdomen. This would rule out unlikely conditions such as an aortic aneurysm (AA) for one thing. But I didn't do the CT for a couple reasons. One was that I was clearly getting better at this point and I was also convinced there was no way someone as awesome as me could have anything as dire as an AA. An AA is an extremely dangerous condition that usually causes crippling pain in the back and abdomen. Patients with AA are typically much older with several additional serious health issues, such as diabetes, obesity, life long heavy smokers, etc. And they often can barely get out of bed, let alone windsurf and dance the Macarena all night long. So this was clearly not me! I also didn't like getting hit with any extra radiation (though most modern CT's have greatly reduced the amount, but still). Additionally I consulted with my brother-in-law who is a cardiologist at Dartmouth-Hitchcock Medical Center and he thought my symptoms were way too mild and my overall health much too good to have an AA. His thought was that a skinny fit guy like me coming off a serious infection might show an increased pulse for a while (and all those who directly examined me later thought the exact same thing) . And maybe I always had this big pulse but only noticed it now because I was paying such close attention? Anyway I decided to bail on the CT. As it turned out this arbitrary decision eventually worked out very much in my favor but it could have easily turned into an epic disaster - such is life and blind luck.

About a week after my final visit to the clinic I was still feeling a bit off, but otherwise OK so we returned to our fairly rigorous but oh so fun lifestyle of surfing and windsurfing every possible day. I then got a message from the clinic that my blood test came back with a "very interesting result". Immediately I knew I must have had typhus which was the only test that was going to take more then a couple days, as it's only done in Oahu. Maui usually gets about 50 or so cases of typhus a year - it's rare but definitely not unheard of. Yet no one I knew, including many who had spent their entire lives on Maui, had ever caught it. Guess I'm just the lucky one!  It's usually spread by flea bites and typically infects cane field workers (working hard everyday for your dark & stormy). However cats can also spread it, and we lived very close to both cane fields and a couple of friendly felines that roamed the property and were irresistibly cute - ignoring them was not an option. Besides that hundreds of feral cats also rule over Kanaha (they are the true residents) and I would often walk through their poo domain while carrying my kit barefoot. The truth is I'll never know where I caught it, but the good news is the magic bullet for typhus just so happens to be doxycycline, which I had already taken. Yeah (and I now had life long immunity to boot)! The Kihei clinic doctor had this suspicion right off the bat so I got to give her big credit for making the right diagnoses with not much info.  Now I was already well cured at this point and to me this very neatly explained all my weird symptoms. Well almost....

We spent the rest of the spring on Maui playing in the surf, windsurfing, riding our bikes, hiking and basically enjoying the spoils of living in paradise (and I continued to work my full time gig as a software engineer but that's not so bad). Everything was great except for a few minor issues. One was I caught pneumonia in March. Probably not a big deal, but I'd never caught pneumonia in my life and this kicked my ass like it's never been kicked for a few weeks. The other was that I never quite regained all of my strength, and the feeling that my heart was beating harder then normal was still with me. One example of this is when I needed a rescue at the end of a giant winter swell day at Kanaha (which had been awesome fun right up to that point). My universal broke so I had to swim under some gnarly 20 ft plus waves while trying to hold onto my precious gear and breathe at the same time. After Giampaolo very kindly helped me back to the beach I was so completely and totally exhausted that I felt like a total wus. My heart was pounding a mad beat and just resting on the beach like a ship wreck survivor was all I could manage at that point. But beyond these minor incidents we continued what seemed like a charmed life of awesome surfing and windsurfing right up to our return to Hood River and the gorge.

And all in all, this summer at the gorge - once it finally started that is - was good times as well. Yes we had the coolest spring/early summer ever, and the first few times I launched from the dark Hatchery rocks into the cold and turbulent Columbia felt pretty damn harsh. But the swell was unbelievably huge which made it equally unbelievably fun. Definitely a far cry from the tropical conditions we had just left on Maui but hey - variety is nice! I still felt a bit weaker then normal, but a huge hatch day in "june-uary" can be rough on anyone. Also my first few mountain bike rides of the summer were super challenging. I remember huffing and puffing up post canyon convinced I would never make it to family man (only half way up). I got there but sucked so bad!  But generally the rides got easier and I was certain it was just a matter of pushing myself harder and getting back into shape. And there was that awesome long stretch of 3.7 days in early August which were among the most fun I ever. I'm not sure if gorge conditions ever get sweeter than that!  And about this time I finally got around to scheduling my physical with my primary doctor, Dr Malcolm McAninch at Greenfield Health (GFH) in Portland.  Mal is a super friendly and very personable PCP, the kind that you actually look forward to seeing for a checkup.

And now for an  important public service announcement. I happen to work for a small software company in Portland called Kryptiq that provides, among many other useful products, a secure messaging service that allows patients to send a message directly to their doctor and receive back a response typically within a few hours - and often in just a few minutes. Imagine being able to text your provider any medical question and set up all your appointments this way - it's super convenient! And so it has been a super cool experience to use the very product that I help to develop (for the past eight years) in the real world as I've gone down this twisting path.  Once you get used to this you will most definitely wish that every doctor and clinic used this instead of the phone tag system of insanity. Or even worse - sending all labs and appointments by the ancient dead tree scroll method. Which might as well be smoke signals from my perspective. Here's a real example of how this helped me - I first setup all my appointments by email (probably while hanging out at the hatch).  Then I had all my required  lab work done right here in HR and Mal at GFH (in Portland) emailed back my (mostly excellent) results in less time than it took me to ride home. I was able to view my labs right on my phone so I immediately knew that all was well in the blood dept. This is how it should always be!

Anyway, I had my checkup and we talked about my mild feeling that I never quite returned to tip-top shape after the typhus. He listened to my heart for a long time and was concerned that I might have a slight murmur (leaky valve). To be safe, he did an EKG right there, which again was normal. However he wanted me to follow up with a cardiologist and make sure nothing else major was screwed up. I agreed and this happened a week later (two weeks ago). The cardiologist, Dr David Shreoder (Providence), could also hear a murmur and the pulse in my abdomen was indeed somewhat harder then normal. However it still didn't seem that big of a deal. I was lean & fit, fairly young, very good looking very active and not experiencing any pain or other symptoms that usually indicate a major problem. We discussed getting an echocardiogram (or echo - basically an ultrasound of the heart) but it didn't seem absolutely necessary so I left with the feeling that all was well. However David called me back a couple of days later after researching typhus (it's mostly unknown in Oregon so few docs here know much about it) and realized that it could potentially damage the heart and/or cause other bad mojo. In truth he also had an instinct that something wasn't right when I left his office and so he wanted to convince me to really do the echo. And good thing that he did! We set up the echo for last Monday 9/12 - a week before we were to fly to Maui. My feeling was they would likely discover a small murmur which would not require any special treatment, meaning it would basically amount to nothing. Still just getting it out of the way and out of my mind would be nice.

Last weekend Julia was out of town and it was also the hottest weekend of the entire summer by far here (which already seems long ago). I decided to spend my free time playing as hard as possible - after all the Gorge is my gym! On Friday I rode my bike down to the water front and rented a SUP which I paddled around Wells Island, stopping on the way to pick some huge and juicy blackberries. I returned to the beach and jumped on my bike, riding over to the marina park which I ran around 8 times (guessing this to be three miles or so). Then I hopped back on the bike and rode up Indian Creek trail to the heights and took a round about path back through downtown HR and eventually home. I called this my gorge mini triathlon.

On Saturday I rode from my house to the historic Old Columbia Highway and through the very beautiful Mosier tunnels and into Mosier itself. From there I rode the Mosier pioneer cemetery trail which I had only briefly hiked before. Taking advantage of my track standing skills, which I just learned in the past year (had never even tried before and you know what - it was so easy! Kind of like throwing loops). I cleaned the initial steep switch backs which led on to a very scenic and unexpected waterfall hidden in a narrow cleft in the Umatilla lava flows of long ago. It was about 97 or so this afternoon and cliff diving into the pool was very tempting. But several folks were already in it so I simply returned home the same way. Up the trail I passed a wedding party performing their ceremony right in the opening of the tunnels. I really wish I had a camera with me as the view from inside the tunnel of the silhouetted wedding party was so cool! (the above equivalent photo courtesey of Tyler Roemer Photography). Despite the intense heat I thought it was a pretty easy ride - about 16 miles round trip.

On Sunday I was determined to go even harder. My plan was to do the complete "Hospital Hill" ride on the Washington side of the gorge. This climbs about 2k straight up from the town of White Salmon and reaches it's highest point near the top of Bowdoin Mountain. This rewards the big grunt up with one of the best views in the gorge - looking directly west about 20 miles down the Columbia along with a clear view of Mt Hood. It's also a very popular spot for para gliders as the summit "bench" is about 3K feet directly above the river below and the Hood River water front. Ironically this trail has some extremly steep and technical sections with the appropriate names of  "Cardiac Arrest" and "Triple Bypass". And on this particular day I did them all! I did screw up by leaving much later on the ride than I should have. Being on the hotter side of the gorge, certain exposed sections of the trail can be ten degrees hotter then downtown HR, and on this Sunday the HR high temperature was 97. Yikes again! What might have saved me literally is that I had to leave before completing the entire loop (though I had done the hardest sections by this point) to drive to PDX and pick up Julia. And again I felt pretty beat up by this ride but it was only my second HH ride of the summer and also one of the hottest. So all in all I thought I did pretty well during the entire gorge marathon weekend. I picked up Julia and the next day woke up feeling nice and refreshed for my morning echo at Hood River Memorial.

I was anticipating this to be a fairly routine exam and HRM being close, though straight up a very steep hill from our house, I decided to take the leg powered vehicle and headed up. I was shocked that there were no bike racks in front of the hospital - I mean what, patients can't ride bikes to their exams? In Hood River of all places??  That seemed very odd to me for some reason. Anyhoo, I got there a half hour early as directed and was handed five sheets of forms to fill out. But I did all this on my last visit?

OK I have another pet peeve and again one which my company's products help to solve. Medical records should be electronically stored and always available to the patient via a secure online application.  And the patient can then allow these records to be automatically sent to other providers and for referrals, so every time I step into a different doctor's office I don't have to fill out my entire medical history in triplicate by memory with a barely functional leaking bic pen. And then have all those forms stuffed into some random drawer or sent to China for all I know. I mean come on... what if I was very sick, and/or I can't remember everything that ever happened to me anymore (especially now) or if I make a serious mistake - like oops, forgot about that one antibiotic allergy. It's crazy that so much of our otherwise fine medical system rests on this antiquated system of record keeping (again dead tree scrolls).  How many people get screwed up because some paper was lost, or misplaced or critical fact forgotttem on the tenth re-recording?  Well fortunately for me Greenfield Health uses our very nice software so all my info was in fact already available to HRM. Yes!

Now I didn't have to fill out five dreary forms and instead spent my extra 30 minutes of life browsing last years issue of Obscure Professional Technical Review. The echo cardiogram procedure seemed unremarkable to me. I chatted with the technician (Andy Filer) who was very cool and calm, talking mostly about life in San Diego and surfing La Jolla. Occasionally I would hear a swish swish sound and get a glance of what looked like a very pissed off jelly fish. When we were all done and I was ready to jump back on the bike to ride home Andy suddenly became very serious. "I need you to stay here. Please don't go anywhere. And I need the name of the doctor who referred you." Who is actually on vacation right at this moment, but he said never mind all that - just whatever I did I was not to leave that room.

Now this was more then a little bit worrisome. Like maybe my murmur was bigger than I thought?  But the situation got way more tense when he came back in a few minutes and calmly but very seriously said "I don't want you to get too concerned.  But I need to take you to ER right now".  I walked down with him more or less in silence.  I knew there was nothing more that he could tell me and I was totally stunned.  In the ER I  knew some of the staff - this being Hood River we all windsurf together of course.  It didn't help to see the very worried looks on their faces.  I texted Julia the following:

Me: After the echo they brought me to the ER! 12:22 PM
Me: Not sure what's up but it can't be good 12:23 PM

She texted right back that she was on the way. Now they brought in an ER doctor, Karen O'Neil, who started asking questions.  "Did I have any pain?  Was I sure I didn't have any pain?  Was I really really sure I didn't have any pain, like in my back or legs?"  "No, No, No! I feel fine" was all I could respond.  They listened to my heart and asked me what caused me to get an echo done that day. I gave them a brief recap, being sure to mention the typhus incident on Maui. One nurse, Ruthie Cleary (who was so very sweet and calming), had lived much of her life on the Big Island and never knew anyone who had typhus. Weird! By this time Julia showed up and I told her that I didn't know what was up yet.  We were both very scared.  The brought in an X-ray machine and zapped my chest.  A couple minutes later they repeated the process. Then Julia heard that they were sending me to Portland Providence for emergency aortic aneurysm surgery!

This was basically my worse fear coming true. Thankfully I couldn't recall all the finer details and basic shit that an AA involved, but I knew it was very very deep. I was still scared - very - but at this point I realized that my past life was potentially over.  I no longer had any control over the ensuing events that were quickly engulfing me. I could only hope that a life spent living healthy and well up to that point would somehow offer me some protection, like a token from a witch doctor that I could hold over my head in the hope that it might part a raging storm. I didn't cry, I didn't beg to any particular deity to spare me now. I figured whoever or whatever tugged the strings had already rolled the dice.  The deal was done and at this point it was simply a matter of showing our hands.  I hoped someone was bluffing but I doubted it.  In fact the news was only going to get a lot worse.

Meanwhile the current debate in the ER was whether to life flight me or take the ambulance.  They soon decided on the ambulance.  I didn't know the significance at the time, but this was the first tiny hint that something might possibly be tilting in my favor. As they wheeled me away on the stretcher I told Julia not to worry.  Actually I was very worried about her. In a lot of ways it's easier to simply die than to be on the other side and deal with all the emotions, and a lifetime of sadness and regret.  The other thought going through my mind right then was that we probably weren't going to be on that flight back to Maui in one week.  And picking up all our shiny new Goya sails.  Damn!

Go to part II.


gary boates said...

Ben, You bugger making us wait! What if you die?? Hopefully for all of our sakes you had better stay awhile:) Are you just trying to up your readership and sell Goya adverts?

I googled: huge pulse in abdominal aorta and came up with AAA - first hit.

If this be the case in your instance - so serious! I hope not but I am really pleased to hear that it was discovered! AAA, the silent killer - in that 1 out of 250 males over the age of 50 die from AAA every year!

You are lucky it was discovered though. And this is precisely why we go to Maui every year (or more for some;)

Take care and in six weeks come out - we can help you guys get from the airport etc. Julia can sail and we will take turns watching you!!!

And no stink eye when I chase those damn cats away!

Thoughts are with you both, g

Janice said...

I am sorry you had to go through this and I am very glad you came through ok and can share your story. Looking forward to reading part two...

ace said...

dude! i think you were protected by the gods you sacrificed oh so many bowls to!

it was awesome to see your post about strolling around the event site!


rebecca said...

can't wait for part 2...hugs and love from one of your devoted readers. think I'm #3 ;-)

Annette 2 said...

So, why was it good not to have had the CT in Maui? Wouldn't AA have been detected earlier? Ok, I will wait for chapter two. Back to work I go.

Love, A

(Ben) Jamin Jones said...

Hey sis! I will fully answer your excellent question in the next exciting chapter, which I'm working on right now. I don't want to leave any spoilers in the comments for my other two - no three! - followers. But I **can** send you an email with an explanation.

Annette 2 said...

I like your spoiler email and am faxing, yes, sigh, my doctor now to request an ECG. James The Younger will work on scheduling one, too. Poor Corinne is on her own until she returns from Winterland in Syracuse.

Anonymous said...

Hey Ben, glad you're doing well. From the string of comments, it sounds like Rich's family. It's an excellent cliff hanger, and I can't wait to find out if you needed to ask for rope to finish the job.
All the Best,

Anonymous said...

Hey Ben,
So anything exciting happening in your life?? I have always liked your writing style -- you even blog so well about crap that really hurts! Look forward to Part 2 and, even more, to seeing both you and Julia back on Maui. My thoughts are with you for that "super speedy" recovery.
Marc Miller
P.S. Looks like from the comments section alone that your readership is growing, as long as you don't ask for any handouts.....

Annette 2 said...

Ok, another question, when my friend, Jonathan Gorrie (when I write his name, he don't seem so dead) died of an aortic aneurysm, people came out of the woodwork with stories of people they had heard of who had an AA and died. All were young, healthy, active and none had symptoms, how is it that extreme abdominal or back pain is a symptom? Why abdominal pounding pulse?
Ok, I'll go read the AA article. Be right back....

(Ben) Jamin Jones said...

Hey Sis - my understanding is a **dissecting** aorta aneurysm, which means the internal layers of the aorta is starting to separate, usually produces excruciating pain if it doesn't kill you first. But you can have a plain old aneurysm that doesn't dissect and instead simply bursts and kills you without much prior symptoms. I probably should have died way before it ever got to this point. And that it did and I had no pain freaked everyone out. The theory is I was in such great shape my body somehow compensated and I could still go biking etc. Weird and scary! --b

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