12/10/13    3,427,200 Beats and Counting - and other results

As I reported previously, my heart went into sinus rhythm on November 6th, and it has stayed that way ever since.  That means at some point today I will pass 3.5 million heartbeats with no skips, wiggles, extras, or quivering jello in the atriums.  Just 3.5 million beats sounding as steady as the beat of your favorite song.  I followed up with the cardiologist a couple weeks ago, and the look on his face as he studied my sinus EKG was as though someone had just handed him a Rubik's cube.  Some confusion, some analysis, but no real understanding.  He told me he was sure I would have gone back into Afib.  He was happy for me, but very surprised.

I can tell when I'm in Afib and not.  But I was checking my pulse about every 10 minutes for the first few weeks.  I seem to check it now about once every few days.  My goal is to take my heart for granted again.  Take that the right way as you read it........I don't want to consciously think of my heart every minute of the day.  It needs to just be there in the background, doing its job quietly.

I've been just over two months on the vegan/plant-rich diet, and I've dumped about 20-25 lbs.  It shows and my energy level has improved a lot.  I still have another 20-50 lbs to go, and I say 20 to 50 more because I don't really know what my ideal weight is.  I played professional baseball at 250 and I was massive and strong, so I am not sure if I should be around that weight or less.  I am pretty sure that eating like this is going to just end up where it wants to end up.

I had an old friend from high school visit this week and he asked me how it's been going.  We went to a restaurant last night and it was right at the freezing point.  We enjoyed the evening together and with other friends, talking stories about the good old days, and when it was time to leave, I got up and walked to the car almost as though I never had this disease.  It was actually almost bizarre.  Hands in pockets walking hasn't been synonymous with me for some time.  But because it was cold, I tried.  No problem.  Someone walked in front of me.  I dodged and weaved.  No problem.

All throughout this disease I have had good days and bad days relative to my level of disability.  I don't really know how to rate it or rank those days, but I can make a general statement that it's generally been worsening with a few slightly less bad days.  I would rate my legs at somewhere around 20-30% of normal.  I can stand, walk with difficulty (and not much stamina).  I can't jog or run, or climb stairs without holding on.  Strolling completely wipes my legs out, but walking pushing a shopping cart through a store works pretty well.  Lately I have gone through more good days and I can feel way more stability in my legs, especially when I stand without holding on to things.  I have been able to put pants on by sitting in a chair, lifting my legs into the pant holes, then standing up out of the chair to pull them up without using my hands to stabilize myself.  I've got up off the couch around 50 times without using my hands.  I walk around in the house with a lot less scuffing of the left foot from foot drop.  I can walk down stairs gingerly and slowly but without holding on to the rail (maybe a bump or a grab here and there if it doesn't feel right).

And now the latest.  I haven't written about this before because I wasn't sure what to make of it.  In April this year, I got some kind of small bug and felt like I was going to get sick.  I didn't actually take any time off work or lay around in bed, and I really didn't get the sniffles or anything.  But my voice went hoarse.  I thought it was allergies, of course, and really didn't put much into it.  I went to see a doctor at about 3 months into it, and it turned out I had a partially paralyzed left vocal chord.  Could have been the virus, could have been scar tissue from the major surgery on my neck in 2011, or it could be related to the MS.  Or there is no explanation at all.

I went all through the summer with it hoarse and scratchy, into the fall, and I went to see him again about five weeks ago.  No improvement.  The doctor literally had no suggestions for me.  I was pretty deflated.  I sat in his exam chair, I slumped over, put my head down, and wept a bit.  This second appointment was before my heart came back, and I remember thinking how is it possible for a person to get MS, a disease that isn't well understood and certainly has no medical clarity on cause, treatment or cure, then get Afib, a second disease that has no medical clarity on cause, treatment or cure, and now a third?   I just thought about how many times I've gone to a doctor in the past 7-10 years with no good news.  Sure some were great.  I have well documented the CCSVI results I've had and some others, but my god.  I'd lost most of the use of my legs, my heart was working at 65% of normal efficiency and I was at risk for stroke and/or heart attack, and now my voice is going with no explanation?  How do I run a business and negotiate with people or walk projects or discipline employees or just function like a human if I can barely walk or barely talk?  What's next?

As much as I hate to admit it, I've had many talks with myself over the past few years about whether or not I'd see my 50th birthday.  This second appointment with the throat doc got me thinking once again I have little chance of making that.  It's a tough thing to reconcile......going from a professional athlete to a crippled guy with a 65% heart and no voice isn't the best feeling.

Long story short, my voice seems to have turned the corner.  Over the past few days, talking has been less effort and I have less hoarseness in the voice.  8 months and suddenly it decides to start improving.  Three doctor visits in the past month have yielded interesting and hopeful results.  Heart is working properly for the first time in 4 years.  Legs working better.  Voice improving.

Why?  I have a dog, I'm eating plants and not animal products, I'm seeing an energy healer, and I went to my 30th high school reunion.  I think these four things have somehow conspired to turning me around.  I wrote about being more hydrated a couple posts ago, and now my mind is clearer, no morning headaches, and so on.  It feels like I have re-programmed my body to heal instead of deteriorate.

I have a business partner who is a pretty perceptive guy, more to the intangible than the tangible.  He said I'll be jogging in two years.  I have a friend I work with who is helping me stay motivated with the food choices.  He says I'll be walking normally by May.  I don't know about either prediction.  Just wanted to document them in case.  I can't rule it out at this point.

11/12/13 The end of A-fib?

I am taking a chance here writing about this one because I am terrified of jinxing it.  My heart is in sinus rhythm.  There, I said it.  If it falls back to Afib, let’s just deal with it. 

If you go back a few entries in this blog – quite a few actually, you’ll see some writing about my heart and it going into Atrial Fibrillation.  I’ll spare you the hunt and give you the highlights.  About 4 years ago, right after hernia surgery #2, I had my first bout of A-fib.  I freaked out, went to the emergency room, got a pile of tests, and a beautiful nurse injected me with blood thinners.  The nurse’s shift ended, and I went to a hospital room to ponder what the hell was wrong with my life.  It naturally converted overnight, so I got out of the hospital the next morning and figured it was just a result of the surgery.

Over the next 3 months, it seemed anything sweet or sour kicked me back into Afib, as well as any heavy exercise like swimming.  And so began the annoying journey known as Paroxysmal Atrial Fibrillation.  Fancy word.  Translation: Anxiety Life Sentence.  “Don’t worry, Mike,” said the docs and nurses.  “Even though we know nothing about why people get this and have no solution, it probably won’t kill you so long as you stay on the appropriate anticoagulant medication.  Thousands of people have it.  Thousands.”

I realized right then and there I not only had one disease that nobody can fix, but now I had two.  The emotional yo-yo of being in and out of regular rhythm began, and this carried on for about two years, until one day I was in a sushi restaurant with a couple folks for lunch, and it popped out of rhythm once again.  I tilted my head like a curious dog, and thought to myself, “that one felt different.”  I had a feeling that it wasn’t going to convert, and two years later and two attempts to electronically cardiovert it, my atriums remained as a quivering pile of Jello.

Fast forward to about a few months ago when suddenly my hydration levels improved.  Then fast forward to about 5 weeks ago when I went to the plant-based diet.  I woke up one morning and I said to myself, “I’m almost 50.  I need to get my heart sorted out because if I don’t, I am going to start aging quickly.” 

As usual, I had to take action on my hunch.  TV commercials for long term medications were out.  I jumped on the phone and asked my doctor friends if I should start thinking about an ablation for my heart.  Yes, was the response.  An ablated heart in sinus rhythm is better than a non-ablated heart in Afib.  Ablated hearts don’t always stay in rhythm, though, so I needed some more answers.  I went to see an Afib specialist here in Las Vegas last week, and we scheduled me for a TEE and cardioversion.  The plan was to take a good look at the size and shape of my atriums and determine if I was ablation-worthy.  Doc specifically told me that he didn’t expect the cardioversion to work given I’ve been persistently chronic for two years, but it would give him good information about the ablation possibility. 

I went into the hospital two days later, and assumed the position I’ve become way too familiar with.  I knew of the anesthesiologist through another friend, and I asked him the proper way to administer propofyl.  IV was established, and soon I was wheeled into the Cath Lab and dosed gently into La-La land.  I woke up after what seemed like somewhere between eight hours and three months to the words, “Mike, Mike, Mike, wake up, you’re in recovery.  Your heart is in sinus rhythm.”  Turned out I was under the milk for about six minutes, they did the TEE, gave me a good jolt, and I converted first time.

WHAT??  I couldn’t believe it.  I had to be dreaming.  It was like someone reattached my hand after accidentally cutting it off two years prior.  I smiled, even giggled.  I couldn’t pull my fingers off of my throat, checking my pulse every ten seconds.  Then the worry set in.  I wondered if it would last……..my wife wondered too.  I woke up the next morning, after some 75,000 beats (amazing how many times our hearts beat when you really do the math), and I thought to myself....."This is different, I think this might stick."

I’ve been sinus since. Tomorrow will be a week.  I’ll follow up with the Doc on the 25^th, but as I sit now, I have more blood circulating through my body than I have in the past five years.  I found a new toy and I can’t put it down.  

If it does stick, that will be result #7 since becoming hydrated from seeing my healing therapist and going full vegan with the food.  Let's hope it's lucky #7, and there's some more where that came from.  

10/31/13 Eating Like a Horse, or maybe a cow

26 days ago I started a vegan diet.  To be clear, it's not for ethical purposes or animal treatment issues or the USDA being funded by the meat and dairy associations.  I know that exists and though I have an opinion on it, that isn't consistent with the purpose of my blog.  The purpose of this blog is to report on my condition, and share things that are working and things that aren't.  It's also to hold me accountable and keep a running tally of how this is all going.

A few weeks ago, I learned that the inner lining of the arterial and venous walls (known as the endothelium) can be damaged in some people who eat a meat and dairy rich diet.  I also found out that it can be repaired in some people by a plant-based diet.  Furthermore, I learned that living on a plant based diet can reduce inflammation and improve overall vascular health for some people.  Therefore, I surmised, if MS is rooted in a hypoxic or blood-depleted environment in the microveins inside the brain where the MS lesions exist (which is indeed what I believe), then the vegan or plant-based diet may be the answer.

So now I probably sound like a believer in Roy Swank, or perhaps a follower of some version of the Gerson theory.  I guess if it looks, sounds, and feels like a duck, it's probably a duck.

I have gone through various phases of dieting throughout my life.  I've never eaten an entirely garbage diet like fast foods all day every day, and I've also never eaten an entirely perfect diet (whatever that is), like apples and carrots.  I have noticed, though, whether I was eating generally well or eating generally poorly, I've never removed meat, eggs, milk, and cheese from the equation.  So now that I am isolating that, if there is indeed a link between vascular health, inflammation, and blood perfusion to the consumption of animal products or lack thereof, I will find out.

I have been coached and encouraged for awhile on doing this by a few people, but the problem has always been consistent motivation.   Who wants to eat flavorless grass all day?  And as the 16 year old son of my business partner put it, "I've come to realize that everything that tastes good is bad for you and everything that is healthy takes like crap."  The other problem is when you get right down to it, people who don't have any medical problems such as MS have all the answers, usually found on the latest Today show or a google article.

I've had about 90 meals since starting this out.  Of those 90, I had chicken wings the second day and some turkey lunchmeat the 4th day, and I went to a board meeting on the 8th day and ate a pile of Cheeseits and Kit Kats because it was there.  Otherwise, 0% animal products (unless it's in some ingredient I don't know about in something).  Finding places to eat and get a variety of plant based foods is not an easy chore.  Sure I downloaded some vegan apps, but for the most part I eat berry smoothies with fax seed and almond milk, sometimes Kashi cereal, for breakfast, a giant salad and soup from Whole Foods for lunch and late afternoon snack, and something at home like another salad for dinner.  I've found some Thai restaurants and a place called Veggie House that does some cool things to tofu, mushrooms, and veggies to trick me into thinking I'm eating meat.

Results so far?  Not what I'd expected.  I'm actually pleasantly surprised.
1) I am not craving meat, eggs, milk, cheese.  This one is strange.
2) I am gorging myself on veggies all day so I'm not hungry, thus finding my blood sugar doesn't seem to be spiking, causing that late afternoon sugar binge.  I feel satisfied most of the day.
3) Hummus farts have been spectacular.  Just amazing.  Length, volume, odor, office reaction.  All of these have been at least an 8.  Night time dutch oven with my wife has been a 10 a couple of times.
4) Energy has been pretty good and quite stable throughout the day.  Even riding the quad has been more enjoyable as I'm not so exhausted at the end.
5) And, yes, you knew this was coming, the poops have been legendary.  Regular as can be, too.
6) Last, it's delicious.  There are a lot of combinations to really make this a tasty deal.  That was a nice surprise too.

I think this is tying nicely into the hydration I reported earlier this month.  My wife reports I look smaller in the gut, which was seconded by another person last night.  I haven't weighed myself yet.  Waiting for some change in my pants and shorts as I've been pretty disappointed in my scale these days.  Hoping that thing will smarten up with all this......

The cooler weather has made walking a tad easier, so I've had a tendency to get up from my desk more often and take the dog for a walk around the shop.

Hopefully this plant life is going to help.  If nothing else it will tell me if I'm going to improve my vascular health and lose some weight.  Seems it probably isn't going to hurt.

10/8/13 Hydration

Thanks to a few friends and family, I have been reminded that my last blog entry was almost a year ago.  So, I haven’t died, I haven’t miraculously healed, but I can report I’m somewhere in between and it feels more like the latter.  I think my main tendency in writing this is to only report when real changes take place, good or bad.

All throughout the time I’ve had this disease, I could never really understand what was happening to me –or really why.  That’s nothing new to anyone with MS – the “could be, may be, might be” disease.  Drs. and I knew the Myelin was degrading, but there is no consensus of understanding of why.  I didn’t know if the disease was rooted in auto-immunity (current prevailing opinion) or was punishment for throwing rocks at squirrels as a kid.  But one thing I did know was that I was dehydrated.  I was always constipated, my throat always felt dry, and I drank a lot of water for really no reason as it just flowed right through me.  Lots of water in, lots of water out, still feeling dry.  Looking back, I wish I had some type of cellular hydrometer to measure and quantify my level of hydration, because I think it’s a crucial part of solving this puzzle.

In conjunction with these thoughts of hydration, I’ve been curious about WHY the CCSVI process worked.  What was going on inside the head?  The body? The cells?  Is it the iron molecules as Dr. Zamboni suggested in his studies, or did the body have a temporary (perhaps permanent) avenue to reinvigorate and introduce blood – or more blood - into our microveins?  I don’t think anybody really knows yet.  Many have offered up ideas and people really love to get the human body all tied up in knots complicating things to the millionth degree.  There are 40-60 known clinics around the country doing CCSVI procedures, and probably hundreds of vein care doctors who do it without advertising, all with varying degrees of success – and opinion.  The MS Society and many doctors think it doesn’t work with any degree of regularity, and say results, if any, are short-lived.  Even my success is seen as a failure in the medical community because I ended up re-clotting to the point where I lost my ability to be a surgical candidate on the left jugular any further.

Everyone agrees MS is a disease caused by lesion growth in the brain, but nobody seems to agree what the root cause is.  Many theories have emerged over the years, and blood flow, as one theory, has come and gone.  Prevailing thought on all the mainstream websites is that the disease is an auto-immune deficiency resulting from the body attacking itself.  Many of us who have this disease don’t believe that for a number of reasons, not the least of which is the failure to explain why no lesions in MS patients are below the shoulders.  The disease has been relegated to the back rooms of most neurology clinics and doctors’ offices because it’s the ugly stepchild disease that can’t be fixed or really treated properly.  Doctors throw medicines and drugs at it that have no more proof of efficacy than CCSVI.  In short, MS is a great big bowl of bad spaghetti and nobody knows why.  The extra bonus is they tell us we’re getting closer to finding the solution every day, but there doesn’t seem to be any proof of that either.

So back to hydration.  My theory for some time now has been that MS isn’t an autoimmune disease, and that CCSVI works (even if temporarily) because of blood perfusion.  The missing link, I am thinking, is hydration.  Not the feeling thirsty kind (although that would certainly kick in), but being hydrated at the cellular level.  The kind of hydration where your skin feels less dry and more pliable.  The kind of hydration where constipation is part of your past, where you hold a much higher volume of urine before having to empty, the kind where water consumption does something inside instead of flowing right through, and when you forget to drink water in the afternoon one day you don’t end up with a massive headache. 

Well, that’s exactly what’s happened for me.  After a few sessions of seeing a healing therapist, a woman about my age who has had an amazing gift for healing her whole life, I have become more hydrated, and I have several improvements in my condition to prove it. 

1)  I have never lost the ability to squat down like a catcher in a baseball game and stand back up, but I did lose the ability to do it without holding on to something.  I can now.  My legs have become stable enough to do that a few times in a row. I still have trouble walking any distance over a couple hundred feet, but I can usually go down stairs without holding on to anything.  Up is still tough.

2) Wet sneezes.  Ask anyone around our office.  I sneeze 20-30 times a day, and they are always 2-3 times per event and always dry.  I could sneeze at a dinner party right in someone’s face and they’d think the open window was letting in a breeze.  Until now.  Sneezing is down considerably, and much more productive.  Every time I sneeze now we have to get out the squeegees and wipe the windows down. 

3) My urinary volume has almost doubled.  I still don’t pump it out, it’s still urgent, etc., but it’s less frequent because the size of the bladder trigger has increased, substantially increasing the time between bathroom visits.  I now generally wake up once a night to urinate, occasionally two.  Imagine how that feels for sleep and waking up in the morning.  If you’ll recall, at my worst, I was going to the bathroom every 20-45 minutes, waking up exhausted every morning.

4) Morning headaches gone.  Yes, gone.  Everyone who works with me at our office knows I’ve spent the better part of an hour or two every morning for the past few years trying to get rid of a hangover-like feeling.  CCSVI initially did this too, by the way.

5)  Bowels as close to normal as I can imagine.  No constipation, no need to help things along like enemas or  Magnesium.  I just go to the bathroom regularly now.  I haven’t had an accident in a long time because I use my mornings to make sure I’ve emptied before going to appointments and I’m still so used to doing that I’ll probably never stop.

It’s a bit of a bummer writing about 5 improvements in my system, 3 of which involve disgusting bodily fluids.  So, I’m sorry.  Deal with it……I have to.  But If these aren’t indicators of a higher level of hydration, I don’t know what would be.  Anecdotal?  I suppose, since this isn’t a controlled study.  But these are measurable improvements that I, and others, can see. 

So, now the question is, have I crossed the line into a healing environment?  Is CCSVI a temporary alleviation of symptoms that allows a greater understanding of what’s happening?  Is the real issue circulation?  Is blood accessing the microscopic arteries and veins that supply the areas where we lucky MS people get lesions?

What this fees like to me is hydration is leading to an environment in which healing, ie, myelin regeneration, can take place.  We won’t know for a while because even in the perfect environment nerve cells are the slowest to grow.  So stay tuned.  I’m hoping to report some leg improvements in the near future.  I’ll just to keep it under a year this time.