3/30/11 The Doctor Parade

Spring Training........a much better thing
to do this time of year
Since I was having so many challenges after coming home from the hospital in February, I decided I should go see a local doctor to check on a few things.  The challenges include still not properly absorbing water which makes me feel dehydrated, my eyes dried out, and constipated all the time.  These, of course, on top of the inability to walk properly, having the bathroom problems, and my new great thrill in life, a heart that goes in an out of rhythm whenever it feels like it.  Sure, sitting here writing about it and anyone reading it seems to minimize the situation, but living with this crap, every minute of every day, is a joke.

And so a trip to the family doctor.  Discuss, review, assess, and draw blood.  Lab results a week later and another visit, then a referral to a caner clinic.  Nobody tells you the cancer clinic is also the hemotologist, which I was referred to because my platelets suddenly decided to go low.  After leaning out my shorts, I met with her yesterday.  This was a treat.  I tell her about my CCSVI experience and the idea that MS may be related to the incomplete return of blood way from the brain, and she listens with some interest.  I tell her about my A-fib and she listens.  I tell her I have no idea why I am visiting her, and that I figure there's a 99% chance that she'll have blood drawn but have no idea why my platelets are low.  I ask if it could be related to injuries while on Coumadin.  Nope.

Any chance it's the Coumadin/Heparin combination as my doctor friend suggested?  No.  Any chance it's from residual medications from the hospital?  No.  Any chance it's related to all the nonsense I'm going through?  No.  Just no.  No idea.  As usual, no idea.  15 years of medical training and she scorns the CCSVI as a possible link to MS, but she has no idea why my platelets are low.  The story of my medical life.  They have names for everything, but no cause and no cure, and the scorn for anything new is rampant.  There's certainly a billing code for the visit, but nothing for me.  Funny how as a contractor when I don't have the solution or have complications the customer demands a discount or refuses to pay altogether, then wants to sue me and report me to the the contractor's board, and takes out a full page ad in the newspaper and every local TV about what an awful person I am.

Then there's Dr. Arata.  I sent him an email last week asking about my Doppler results and what was next.  My left jugular has re-stenosed again, likely clotting, and he got the info last week.  I sent him an email on Wednesday and he hadn't replied by Friday, so I figured he was busy as usual.  Then I got a reply on Sunday morning with an apology for the delay.  Three days is hardly a delay in medicine.  Hundreds of MS patients a week calling his office, and he emails me on a Sunday morning with an apology and a plan.  The nerve..........

Anyway, the plan is to get my INR level of the Coumadin up to therapeutic levels consistently, then go back in and do another Venogram/Angio.  Why does this make sense?  The Lovenox I was on before did nothing, and all the hospital meds weren't isolated.  Now the Coumadin is isolated and measurable.  The clotting is only in the left jugular and is moderate, not fully occluded.  This is progress.

It seems so close yet so far.  I want to feel like I did in October after the surgery round 1.  Like a human, not a case.  I had measurable results, improved symptoms, and hope.  Since then, it's been a steady stream of bad news, but now I see measurable progress again.  Hope.

I wish this could go faster.  The waiting is the toughest part.

3/18/11 Am I supposed to be getting better?

Someone asked me yesterday how I was doing.  All things considered, I was doing ok, so my reply was "Average, which is a lot better than it's been all week."

I got up this morning to go swimming, the sixth time in the past 2 weeks (Mon, Wed, Fri each week), and it was like someone lit a firecracker inside me during the night.  I was in a state of disbelief at how many thing could be hurting or not working right.  I'll run down the list:

1) Temple vein pain was a 6-7 out of 10
2) Heart was out of rhythm.  I don't think it was A-fib, but it just wasn't normal
3) Both shoulders were tight
4) Ribs on the left side were in agony
5) Breathing a little tough
6) Legs were really weak

Otherwise, I was fine.  In fairness to the blog, my shoulders and ribs hurt mostly because I had a few falls on the motorcycle last weekend.  Not big falls like you'd see on supercross on TV, but tipovers on a tough terrain change that I lost my momentum on and had no legs to catch the fall.

So, instead of jumping into the pool and beginning the warm up, I struggled down the ladder and eased in, then worked my way into whatever stroke I could manage.  I warmed up in about 5 minutes, and then tried to do the workout as best I could.  I normally (I hope normally anyway....and that this isn't the new norm) swim in the 4th lane which is the fastest of the novice and intermediate swimmers.  The other 4 or 5 lanes are for the fish and sea otters in our group.  This week I have been swimming in the first and second lane because I am so beat up.  My times have gone from a 1:30 average interval for a 100 yard set to over 2:00, so I'm going slower than slow.  At this rate, I might be on track to set a world record for going the slowest and actually calling it forward motion, but that's another story.

When it was over at 7:00, I got over to the ladder and did my best to haul out onto the deck.  I felt a bit like a Sea Lion hauling out on the beach, and as I sat down on the bench to dry off and dress, I watched as the fish and sea otters leaped out of the pool into their clothes in a single motion.  I thought about how just a year and a half ago I was doing that and thought about how doggone weak I've become.  I took my 10-15 minutes to dry off and dress as everyone else flitted off to work, and I hobbled to my car to drink the hot tea I had prepared earlier this morning.

Once seated in my car, I caught my breath somewhat and headed home.  I guess I'm in denial, disbelief, or whatever you want to call it.  I just can't believe how incredibly difficult the basic functions of life have become these past few weeks.  More importantly, I can't even imagine what might be ahead.  Some days I feel like I am on the verge of recovery and soon this whole nightmare will be behind me, and some days I feel like I have one foot on the grave and the other on the proverbial banana peel.

I look at photos and videos of when I used to play baseball, or look at my old baseball cards, and it seems so real yet so unreal.  I know that was me, but I can't imagine how I ever did it.  I can't remember how to run, jog, or even walk normally for any length of time.  It's just so bizarre.  I feel young, I think I can do something, but when I get up to go do it, it's like the prison guard comes by and chops my legs off for insubordination.  And then makes me have to go to the bathroom without giving me a cup.

I have grounded myself from flying, and haven't flown since November or December last year when I was feeling awesome after the CCSVI surgery.  My medical expires March 31, and I have an appointment down at the Mayo Clinic in April to get the bi-annual MRI's and annual meeting with Dr. Wingerchuck.  The past few years I was excited to go to the appointment because I was doing so well, but this year I am fearing some kind of disciplinary sermon might be forthcoming because CCSVI isn't something a hardcore neurologist seems to believe in yet.  I guess time will tell on how that goes.

I want to get back to doing things like this
I also need to get the Doppler done to check my blood flow in the jugular veins.  I am a little nervous on this too....if the veins are shut down again I have more hospital time ahead of me but would help explain the lack of real improvement.  But if they are all clear I have to somehow figure out what is next.  Do I get a break on this at some point?  Is there a chance I'll have all open veins, get off the blood thinners and start to recover?  I hope so, and so long as I know there is a chance, that's how I'll proceed.

3/3/11 The Roller Coaster

After working last week in sweatpants to ease the pressure on all the wounds and scars, I was able to go for a motorcycle ride on Saturday and Sunday.  I'm a novice rider and I don't jump or go blazing through the jungle.  I ride along trails to find places with great views or places to eat that I wouldn't otherwise find or be able to get to.  Dr. Arata told me to really take it easy if I was going to ride, and said he'd prefer I didn't do it at all, so I went with two friends again....one to pave the trail and look for problem areas, and one behind me in case I fell.

We had a lot of fun.  It was a little rainy (rare here in Vegas), and we went out of Boulder City toward the Hoover Dam.  It was a rocky trail, so the rain didn't really wash it out or make it too muddy.  Traction was good and we had a great time.

My heart was in rhythm all weekend too, and it's amazing how different I feel when it's in vs out.  I felt alive on the bike, both days.  I felt capable, worthy, and human.  I didn't feel like the guy who just spent 240 hours lying around in various hospital beds wondering where my life was headed.

I accidentally had a little too much fun on Sunday on the bike,and inadvertently upset my family by failing to return home in time to do some other things together.  I felt bad about doing that, as these are the people who take care of me, but while I was on the ride, I felt like for those 2 hours nobody really needed to take care of me.  And that part felt good.  I came home and we made up by going out to dinner and a movie together, and we're also heading to Phoenix this weekend to watch some spring training baseball.  Supposed to make 80 degrees down there this weekend.

So feeling great as the work week began, I wore jeans to the office to look like the construction company owner I am.  The office folks all noticed and asked how I was doing.  I was smiling after a nice weekend of feeling good, and we went about our work day.  After work, my partner and I went to dinner and I had a salad and water, which is pretty much all I eat in restaurants for dinner.  I went home, still feeling good, and went to bed, only to wake up with my heart in A-fib again.  It was a little strange, as Kathy had asked about how my heart was doing and right up to that point I was doing well.

Heart was out of rhythm for Tuesday and a little bit of Wednesday.  I worked, went to appointments, and did what I could, but that reduction in cardiac output really takes a bite out of my ability to concentrate for extended periods, and I found myself quite tired at the end of each day.  As I write this now, it's back in sinus rhythm, so I feel great again.

The master cleanse was cut short this time around because I felt I needed a full compliment of nutrition to recover from the hospital.  I'm using an iPhone app to monitor my calories in and out, and that seems to help with the weight in making food choices.  Kathy, of course, did some more research on the causes and controls of A-fib, and the latest discovery is the causal relationship between calcium and potassium/ magnesium levels.  We started taking more potassium and magnesium, so we're hopeful that we will see some evidence over time of this.  The idea of an ablation or living on arythmia medications is as horrible a thought as living on the MS medications I have avoided like the plague.

So the roller coaster continues.  Some days I feel great and alive, and others I feel like my heart is popping out of my chest, causing all kinds of anxiety and fear about how long I can go on like this.  My legs don't have much stamina, but they do feel like my gait is more normal when I am walking on fresh legs.  I figure it's going to take another 4 to 8 weeks to recover from the hospital stay and get the Coumadin out of my body so that we can determine if all my veins are open.  Once that happens, I can really then better determine if the CCSVI vein opening is having any effect on my MS condition.  I think it is, but it's really hard to say at this point.