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

Monday, September 26, 2011

Possible (part III)

This is the final chapter (for now) concerning my recent scary and unexpected adventures in the medical world. If you haven't read the first part please start there.

It took the surgeons approximately 90 minutes to scrub me down, stick in all the various catheters, extra IV's, central lines, get me under full anesthesia, and set up the respirator before the actual incisions began at 2:45pm. Julia was given a pager for updates and she wandered down to the main lobby to wait out the long hours. I'm not going to disclose the full details of the operation itself because I was in la-la land and have no idea. I kind of like it that way. [ update - actually I got the exceptionally complex full op report and it's kind of cool to see exactly what was done. See it all here) Suffice it to say a lot of messy and uncomfortable things were happening to my body over the next 6-7 hours. However Julia has two brothers on the east coast who are doctors and she kept them updated via text messages over the next 14 hours as I went from surgery to recovery:

2:48 PM [ Julia was paged that the surgery was underway ]
3:56 PM (family) Is ben's aortic valve bicuspid?
3:57 PM (Julia) Yep. Rick says that often causes an aneurysm.
3:58 PM (family) Oh. I was wondering why he would develop an aneurysm because he has always seemed so healthy and interested in diet and exercise
4:00 PM (Julia) He was born with it. Over time the pressure of the flow causes the tear.
4:11 PM (family) Yes. I was thinking it was like getting struck by lightning. At least there is an explanation.
4:14 PM (family) Do u have an idea of how long the surgery will take?
4:14 PM (Julia) 4 to six hours. Started 2:48

By 8:08pm, the procedure itself was complete and I was taken off the bypass so they could restart my heart and check for any leaks (just like any good plumber should do). Julia was paged accordingly and she returned to the CICU lounge to wait for Dr Kirker and his update.

8:08 PM (Julia) Off bypass. Should hear soon from md

About an hour later Dr Kirker came out of OR and spoke to Julia about the operation. Which in a nut shell was a huge success - most especially because he was able to repair my valve  (it's still a bicuspid, but now a working one, yeah!). Julia asked him how he did that and he responded that it was too complex to explain.  He also told her that I didn't need any extra blood during the entire operation, which is highly unusual for such a long and complex open heart procedure.

9:31 PM - (Julia) Out of or. Md saved his valve, replaced ascending and placed stent into descending. Next step: check for bleeding. Get him to wake up. I'll see him soon.

About an hour after this Boyd, the CICU nurse, brought Julia to see me in my room. I was still on a ventilator and occasionally shivering from the after effects of the anesthesia. Julia spoke in my ear and gave me a million kisses. Boyd pointed out that I had lots of movements, such as in my arms and legs and once I tried to get something out of my eye (there was antibiotic gel in them) and these were very encouraging cognitive signs for a good recovery.   My catheter was constantly dripping which meant my kidney's were going good.  Everything was as positive as it could be at this point.

Julia then returned to the CICU lounge and tried to sleep while Boyd continued to bring me slowly out of anesthesia and back into the real world. This process continued into the morning.  Around 5:30am Boyd spotted Julia in the hall and gave her a signal to come into the CICU.  He was smiling.

My first memories occurred around this time. There must have been a period where I was semi-conscious and that time frame seems like a vague dream. But I clearly recall seeing Julia come into my room.   I smiled and said "Hi Baby!".  I was so happy to see her!  I then remember asking if they saved my valve and she told me yes.  This is like waking up on Christmas morning and immediately finding the two most important gifts that you wanted so bad right in your hands.  Julia said I was almost euphoric.  And hungry. So very hungry!

By this time, around 6:30am,  I was propped up in my chair and Julia fed me two bowls of jello and a sorbet, constantly warning me not to eat too fast.  But they were so good! I joked that there must be a secret ingredient in the jello that makes you want more - a line from the movie "So I married an Axe Murderer" that Julia and I often quote. After this I started to feel some pain so the new nurse, Marie, gave me a shot so I could sleep. Julia gave her family an update.

8:25 AM - (Julia) Tubes coming out! He's eating jello and loving it
8:26 AM - (family) Amazing!! Great news
8:27 AM - Some pain when he transferred from chair to bed, so he got meds 
8:29 AM - (family) Of course that is hard. But out of bed, eatng, breathing on his own, hungry, all good signs! 

Julia also sent an email to my sibs with similar news: Breathing tube out!  He's up in a chair!  Hungry!  Amazing!  Thank God"

At this point my recovery began in earnest.  Various tubes were pulled out starting with the catheter.  I ate soup.  Later Dr Kirker visited and said I was doing great and that he was impressed.  By the afternoon I was able to transfer out of CICU and walked on my own to the new room.  Turkey and gravy for dinner.  I remember thinking that could have been my last meal ever and was so glad it wasn't.

On Thursday Dr Kirker visited again and thought that, due to the 40% leakage which I had before, it was entirely possible I might feel stronger once I was fully healed.  He also suggested that I might be discharged as early as Friday which would be some kind of record, but I preferred Saturday because my pain meds were still pretty heavy.  He thought that made better sense and was still plenty fast for any open heart recovery.  He had another interesting comment for me.  I wasn't the youngest patient who had had this surgery, but I was definitely the fittest.  Before leaving he told me he was soon headed east for vacation and would out for a few weeks.  I recall thinking how lucky I was that all this occurred while he was still in Oregon. Just a few days can make such a difference in your life.  I don't believe in fate, but....

On Friday Julia's brother -  the cardiologist in New England - told her that I had officially become a boring cardiac case.  I was able to walk up and down stairs without much difficulty.  In fact one of Dr Kirker's partners, Dr Ott, had to catch me in the stairwell and joked that he was now tired.  He warned me that my greatest challenge was not to push myself too hard in the next few weeks.  My sternum was still split in half and required 6-8 weeks to fully heal.  I had to be very careful not to lift anything over 8 pounds.  And he had one further warning.  Many patients experience major depression after returning home from heart surgery as they deal with new physical limitations and their bodies cope with the stress of such a large healing process.  Hormones are reduced and protein is redirected from the exoskeleton to areas that are healing.  He wasn't the first person to tell me this and I was willing to believe this could very well happen.  Though as of right now every day has only been better, sometimes way better, than the last. And I intend to keep it that way!

I had one minor set back Friday afternoon, though looking back it was kind of funny how it went down.  All cardiac surgery patients are wired to heart monitors and there's a room with technicians who keep an eye around the clock for any funky heart business.  Our first visitors had just left and I was munching on a sandwich while our nurse was in the room chatting with us.  I swallowed a bite and was talking when I felt my heart take a few noticeably harder beats, but it didn't seem too concerning.  At that moment the nurse got a page - "is room 42 OK?"  That was my room!  The nurse replied she was there and everything seemed fine.  She walked over and listened to my chest and said "hey your heart is beating a bit fast".  Her pager beeped a second time "room 42 is in A-fib!!". Julia and I looked at each other in shock and surprise. I suddenly felt very tense and now I really did feel my heart pounding!  At nearly the same time we heard steps running down the hall and approaching our room.  I half expected a team of doctors to rush in with large needles and a defibrillator charging up ready to give me the big shock.  Instead a lady pushing a food cart flew by our room - running a little late on the lunch delivery I guess?

Meanwhile our nurse didn't seem too concerned.  An A-fib (Atrial fibrillation)  is a paricular type of cardiac arrhythmia that is very common after open heart surgery or whenever the heart has been cut or traumatized.  In fact they always have anti-A-fib medication (protocol) ready to go in these cases as it's practically standard procedure to occur once ot twice during post-op.  So I moved to my bed and took some calming breaths while she hooked up a bag of anti-A-fib juice into my IV drip. My heart already seemed slower and about ten minutes later our nurse was paged that I was out of A-fib. Whew!  I was worried that this might impact our Saturday discharge but everything was good from there on.

Early Saturday afternoon I walked out of the hospital and  into Julia's waiting arms.  We high-fived and hugged each other.  I could not believe that only four days ago I was facing such an uncertain and scary future. We drove back to Hood River and once there I recalled riding my bike up to HRM last Monday so certain I would be back in just an hour. In our waiting mail was the Netflix rental "Soul Surfer".  Funny - that has been in our queue all summer and it just shows up now. Weird coincidence (cue Twilight Zone theme). Every surfer probably knows the story - Bethany Hamilton has her arm bitten off by a shark while surfing her home waters in Kauai.  Later in the movie she tells her dad she wants to not just surf  again but also compete.  He tells her "honey, it's not going to be easy".  And she replies, "Dad, I don't want easy, I just want possible."  Possible is all I can ask for as well.

Sunday, September 25, 2011

Possible (part II)

If you haven't read part I please start there.

It was just before being wheeled toward the ambulance that I heard the name of the surgeon who would soon be operating on me - Dr Eric Kirker of The Oregon Clinic. I quickly brought up his bio on my trusty Samsung Charge. I was surprised by how young Dr Kirker was - not that that's a bad thing. Younger surgeons are often trained in newer techniques so this didn't bother me at all.  If I had searched a bit further I might have seen this story on Eric. But even if I had seen the article, I couldn't have known the significance and the how it would soon directly impact me. Eric is one of the very few cardiac surgeons anywhere capable of repairing, instead of simply replacing, a damaged aortic valve.  That he practices close enough at the Oregon Clinic and was available to operate on me was a very lucky break.  He left for vacation just a few days after my surgery.

On the ride in I was imagining that I had a simple bubble or weakening in a small part of the aorta vessel, which could be fixed with the equivalent of a tire patch.  That didn't seem so bad to me.  I joked with the EMR guys about how much I really wanted that helicopter ride.  The said the slow way was always the best way. I must have been a boring ride for them as I only had a single IV line delivering a blood pressure reducer, and otherwise was pretty good.  I brought up a navigator app on my droid (I'm such a geek) so I could follow our progress into Providence Portland Medical Center where the surgery was to take place. I also tried to read some mindless (Stephanie Plum) ebook using the Kindle reader so I didn't have to think much.  Meanwhile Julia had to run around HRM hospital and grab my abandoned bike and then drive home and pack clothes and everything else for both of us for an unknown length of time in Portland, and then chase the ambulance into the big city.  That she managed all that, and did so extremely well with such emotional pressure is incredible.  I'm sure I would rather be in my shoes facing the surgery then in her's not knowing what was going to happen.  OK I need to take a deep breath now...

We arrived at Providence and I was rolled into the ER reception area.  Everyone looked extremely calm, almost bored.  I joked that this was not at all what I was expecting.  I wanted to see doctors running around screaming "Stat, stat!", IV lines flying, blood dripping, and bodies being shocked back to life.  This was clearly not happening.  Everyone laughed. After a few minutes I saw a group of men approaching and immediately recognized Dr Kirker.  He introduced himself and I told him I had already seen his bio.  He thought that was funny.  The next stop was the cat-scan (CT).  This wasn't so funny.  The CT itself is no big deal.  I already had an IV line into which they could easily inject a solution to make my blood show better on the images.  I noticed this on the final pass when my body felt like it was being heated from the inside.  Kind of like being slowly cooked in a microwave I uncomfortably imagined, but the sensation only lasted a minute or so.  I was wheeled out to meet Dr Kirker and the un-fun part really started.

To be easier I'll go with first names.  Eric had a serious look and his eyes were a touch tired.  Later I found out he had been up most of the previous night performing a similar operation to what I was to undergo.  So this is what Eric told me.  I had a 7.6cm dissecting aortic aneurysm.  Dissecting means the internal layers of the aorta are starting to pull apart - in surfing terms it means my aorta was de-laminating (which is usually when you throw away that old board).  The aorta is typically between 3-4 cm as it leaves the heart.  Anything over 4cm is a concern.  6cm is a medical emergency requiring immediate surgery to repair. Many people suffer a rupture and unfortunate sudden death before they get to that point.  Mine was 7.6cm (during the later surgery they actually measured it at 8cm).

It got worse.

The aneurysm had torn open my aortic valve which was subsequently damaged.  The damage caused 40% of the blood pumped by my heart to escape back through the damaged valve and into the left ventricle. Meaning my heart had to pump 40% harder to deliver the equivalent blood. Well that at least nicely explains being a touch tired on some of those long uphill rides!

And it got worse.

The dissection of the aorta continued through the ascending curve and into the descending aorta.  And all the way past my kidneys and to the leg branch.  The only good news was my kidneys appeared to be somehow undamaged despite all of this.  The aneurysm resulted from a fairly common birth defect:  I was born with a bicuspid valve, which has only two flaps instead of the usual and preferred three.  Two flaps put more pressure on the aorta and subsequently can lead to an aneurysm such as this. (so at least it wasn't my bacchanalian lifestyle that caused all my problems).

Whoa!

Eric was looking me straight in the eye and continued. "This is very serious, as serious as it gets.  The survival rate from an operation like this is typically around 50%, but in your case being so fit and stable, which is a very good sign, I'm thinking only a 5% chance of death.  And a 2% chance of a stroke.  I'm going to try and repair your valve.  You're young and very active so this is important.  But if I can't repair the valve, it has to be replaced it with an artificial valve and you need to make a decision.  I can use a bio-mechanical valve which usually needs to be replaced every ten years or so, and that requires another significant surgery. Or I can use a mechanical valve which should last your lifetime.  However mechanical valves require you to stay on blood thinners for the rest of your life, and this can  impact your active lifestyle.

Whoa again!

It's difficult for me to recall  at this moment exactly what I was thinking just then, or if I was thinking at all. I wanted to ask if I still had a tiny chance of returning to my former active lifestyle but that seemed like far too much to hope for. It seemed increasingly likely that simply being alive might be my most optimistic scenario. Things had happened so fast that reality hadn't fully sunk in.  The idea of having a surgery every ten years did not appeal to me.  I told Eric I would choose the mechanical valve. He agreed with that and told me the surgery would happen tomorrow (Tuesday 9/13) at 1pm. This would give him a chance to get a good rest and have all the necessary materials on hand, such as the mechanical valve and sufficient blood.  Again I seemed stable so he didn't see this as a big risk and it improved my outcome. I was happy to hear that, so we shook hands and Eric left.

In part I, I mentioned that I was lucky the aneurysm wasn't discovered on Maui even though it's typically best to catch any disease as early as possible.  It now seems likely that the typhus infection had put more stress on my heart and hastened the dissection process,  but by itself did not cause the aneurysm.  So when I had the typhus its possible I already had a significant aneurysm.  And the problem with that is you cannot fly with such a condition.  Emergency surgery would typically be performed by a non-specialist who would use only the safest and most expedient techniques.  Meaning I would not have had a surgeon as skilled as Eric  and  replacing my valve would be the only option.  Of course in the meantime I could have easily died so many different times as we surfed and windsurfed all winter and spring on the north shore of Maui. Not too mention the summer of mountain biking and windsurfing the gorge. Somehow it seems that my body compensated for everything and allowed me to continue these intense activities as if little was going on.  Everyone is still scratching their heads over that.

I also mentioned that riding the ambulance was a positive sign.  A life flight would have meant the surgery needed to be performed immediately and with less preparation.  And I'm not sure if Eric was available to perform such an immediate critical operation that day, and so again repairing the valve might not have been possible.  Andy, the echo tech, had directly contacted Aly Rahimtoola, a Cardiologist at Providence, who evaluated the images and then went out of his way to personally contact Eric, knowing he was the only surgeon capable of providing the best outcome for me. Aly had also contacted Karen O'Neil the ER doc at HRM and between them decided I was likely to survive an ambulance ride - being very stable - and therefore the surgery could be performed at a more optimal time. (Later I found out that patients with such an extreme aneurysm are often dead within the hour, but again my vitals were all good). All these decisions turned out to be the best for me, but I understand how often the easiest and safest route is taken.  It's always a tough call whether to choose safety or a more aggressive though risky procedure that might provide a better long term outlook.  I do know that right now as I write this I am forever grateful that the riskier path was taken.

But all that had already occurred in the background, and all I knew at the moment was that I was being taken to CICU to wait for surgery.  Around 4pm Julia got to my room. We hugged and she joined me on my bed. I must have put my mind into some kind of zen state because details are a bit fuzzy.  I recall ordering my "last meal" of turkey with mashed potatoes and gravy (wasn't bad, this became "the usual" for dinner).  We watched some MNFB and I remember thinking how as a boy football was everything to me.  Now not so much (of course windsurfing and surfing had really stepped up). I took one of the first sleeping pills of my life. The nurses changed, I got a little suppository to clean me out before surgery (fun!), and Julia stayed with me until they kicked her out at 2:30am (the nurses let her stay until I fell asleep).

Julia spent the night on the couches of the CICU lounge and was right back with me by 8am.  My nurse (one nurse per patient in CICU) came over and explained to me what was going to happen post surgery.  Right now I had one IV delivering saline and the blood pressure reducer (my goal was under 120 and I was pretty close).  In a nutshell she told me I was going to have a lot more tubes going in and out.  A lot more.  Julia and I stayed together on the bed until the anesthesiologist came into my room at 1:15 and said they were ready to begin.  I turned to Julia and told her to please not worry, that I was going to be fine, and that I loved her.  I did believe that my physical shape was going to help so I had some faith.  I told her I would see her soon and they rolled me toward OR.  I remember seeing the surgeons scrubbing and they gave me the injection to put me to sleep.  I was feeling warm and comfy as everything faded to black...

Go to part III.

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.
Copyright © 2011 Jamin Jones, All rights reserved.