Aside from body aches I’ve been feeling pretty ok lately.  I think I am on a mental high from all of the good heart news I received over the past couple of weeks.  I am in celebratory mode, feeling more confident and less fearful than I have in what seems like a lifetime.

In the back of my mind I still know how long I have to go. Every single day counts. The road to recovering has been filled with ups and downs, but for this moment I am savoring the upswing.

I decided to go to a BBQ yesterday.  I took some Tramadol for these terrible neck and back pains that I had been suffering through for days, and decided I would enjoy the day.  I am so happy I did this.

It’s gotten to the point where I’ve learned how to make things work for me.  BBQ?  I can’t eat so much of that fun BBQ stuff anymore, but I did have a yummy Turkey Burger (no bun of course).  And I even sipped some beer to get the taste of a cold one in the sun (trying not to feel guilty about that shhhh).

I work really hard on my body every single day, but after a day like yesterday I am reminded how important the other stuff is…  Life! Being social, being around good people, feeling like ME again.  It’s like finding a lost treasure.  I was so happy to just be out and talking.  That alone could keep me going for days feeling happy and well.  And the best part?  I don’t feel completely wrecked and tired today.  Not so long ago a day out meant the next two in bed.  Progress.  Aaaahhhh.

Taking it slow today because I don’t want to push it.  Going for a stroll around the hood.

I know it’s been a while since I’ve written.

Sometimes when I am feeling good I have a strong urge to stay away from my blog.  I like to imagine that for a short time I have no physical ailments and writing here reminds me of them.  Sure, it’s great to pretend but I always come back to reality eventually:  I have good days and bad days and that’s that.

As per usual there has been a lot of the ups and downs lately.  Maybe I wake up feeling great and then “bam” the meds kick in and I am drained, or naush, or cranky.  The steroids are a big pain in the ass at this point:  I am trying to ween off but can’t seem to get past 10 mg.  And then there’s the heart meds that lower my blood pressure to the point that I am walking around seeing white flashes for hours at a time.  It’s just the norm for me.

There’s a lot on my mind.  Haven’t been able to sleep because of something else that happened this week.  I can’t really get into it now because my brain will start buzzing all over again but it’s coming…  it’s all about this continued journey, and the “can of worms” we open when we really truly work on ourselves.

It’s been a year and a half of this journey to understand my body mind and spirit and let me tell you, there is always something new.  Humans and our relationships with our bodies are very complex and layered . I am still trying to understand what this is  all about and I get shaken up every now and then doing so.  It’s hard hard work.  I must say, I am exhausted.  Mentally craving a vacation from worry and fear and responsibility.

On Friday I asked my doc about options available to me re: stem cells or gene therapy.  My concerns are that sure, I am ok now but the truth is that my heart is damaged and it isn’t going to regenerate it’s own muscle in the way I need it to.  I want to be proactive!

Her answer?  I am “too healthy” (thanks, i guess but “healthy” is not a word that comes to mind when describing my current situation) to be considered for any of the gene therapy trials going on at Columbia presently. I guess right now these treatments are for no-option heart transplant patients.  People who cannot even walk around.

She also added that I will have a hard time finding a study that would accept me because of my collagen vascular disease.  My interpretation is that I have far too much going on besides my heart issues and they don’t want to mess with something that NOBODY seems to understand.  It’s such a mystery. They still do not truly know what caused my heart to scar like this.

So then, where do I stand?  Who will work with me?  Do we wait until something bad happens?  This is my problem with US medicine.  It is not proactive, or preventative.

I am on a constant search to save my heart yet I have yet to find anyone that can help with this direct problem….  it’s been all about maintanence which is fine, but I need progress!  I need a ticker that is going to beat strong for the next 70 plus years!  ( Oh yes, I plan to live until I am 100).

Just got a call from my heart failure doc at Columbia with Friday’s test results.

From my echocardiogram:  My heart is unchanged from last year.  Structurally it looks the same, my Left Ventricle EF (amount it contracts) is 35- 40%.  Better than 15% for sure but I was kind of hoping it would be better.  I’ve still got my scar tissue, covering three quarters of my heart muscle.

I must say I am relieved.  “Unchanged” is better than “Worse”.  Although I would be lying if I didn’t say I was hoping for some miracle and my heart would be completely back to normal like “oh Lauren, we totally made a mistake there is no scar tissue”.  Haha funny.

It’s all good.  I am still on a high from completing that stress test.  Now I can do some light cardio this summer:  swimming or biking ONLY.  And lots of walking.

So I made it through my stress test.  I actually completed it!  I definitely could not do that exactly a year ago.  I am so so proud.  Feel great about this accomplishment. Major for me.

I got my heart rate up to 116 and they were able to read my full capacity (all while monitoring my breathing, my heart rate, my pulse, my pacemaker, etc).  I could even go longer from a breathing standpoint… I had to stop because of my legs.  I am not exactly in the greatest work out condition and they tire easily.

This gives me so much confidence.

I am so anxious to get the rest of my results.  I will get a phone call on Monday to see what my echocardiogram shows.  That is the true test to see what my heart is looking like these days.  I want to know what’s up with the scar tissue, and if my EF (the amount my left ventricle contracts) has improved.  It will tell us a lot….  hopefully my heart walls are moving again.

I wait for Monday’s results.

Yay!  Happy Friday.

That’s what’s up for tomorrow morning.  I head up to Columbia first thing and I expect to be there for hours.

It’s a big HEART day tomorrow.  We’ll find out lots of information.  I am nervous.  I hate the stress test.  They plug my nose (because I get a pulmonary stress test) and I have to breathe through a tube while I do a cardio work out (something I have not done in about a year and a half). Ay.

Wish me luck.  Updates tomorrow.  And it’s gonna be gooood news. I know because it has to be.

Tonight I have reached a new level of grossing myself out/scaring myself silly before bedtime.  I am so nauseous from my online adventure that I just had to get up and make tea.

I don’t know why I do this.  I know it’s completely ridiculous, but at least three nights a week I find myself on the computer in bed reading all sorts of medical literature.

When I can’t sleep I google things that I am diagnosed with or things that I may diagnose myself with at any given moment.  It is a strange addiction, my only way of controlling the uncontrollable.

I google alert, and google search, and peruse medical communities and blogs.  It’s my poison.

I came across the blog of a cardiologist/EP (cardiologist that deals with pacemaker/ defibrillators) and I read his post on the pacemaker implantation itself.  You see, every five to seven years I must get my pacemaker changed because the battery does not last forever.  This is what I have to look forward to:

“But cutting a pacemaker from someone’s chest is no easy feat, especially when a pen knife is used. That’s because the pacemaker generator and leads become encased in a fibrous shell that firmly anchors the device in place. This fibrous shell begins to take shape shortly after the pacemaker implant as the body works to isolate the foreign body from the surrounding tissues. The the formation of the typically shimmering scar-like pocket occurs over several months time. When devices are not touched for years, the pocket can even become calcified: a so-called “porcelain pocket” that can be particularly challenging to remove the device when battery changes are needed.”

via Dr. Wes

Yup, that’s happening in my chest.  My chest!  I still cannot believe it is in there!!! Filled with a packet of scar tissue!  Ugh.  Vom dot com.

So… is this how it’s going to be this week?

I see rain every single day for NYC.  I wake up and just feel awful.  I had to force myself out of bed just now.  And so begins my game of … do I take a Tramdaol or do I wait until I am at the point of torture?  Hmmm.

Get it together already weather.

I am the crankiest person to live with right now.  Yesterday I was feeling extra nervous (for Friday’s tests) and super uncomfortable.  Couldn’t get comfortable at all.  That makes for a very bitchy Lauren. How can you be nice when you feel like every muscle in your body was run over by a truck?

Sitting here thinking about my week ahead.

Although it is five days away, I have been nervous about Friday May 8th for quite some time now.

On Friday I go to Columbia for a full heart check up:  echocardiogram, doctor visit, and a stress test.

It has been four months since I have been to the heart doctor and even longer since they’ve really looked at my heart through an echo.  The last time I tried to take a stress test (last year at this time) I panicked, and could not.  I freaked out.

I am scared of a cardio workout.  It may seem silly, but I feel like if my heart beats fast something bad may happen.  It is a total mental obstacle that I have to get over but it’s just so hard.   I can only walk these days.  I do not climb stairs or run, so I haven’t really worked my heart out and I do not know what it is capable of.  We are going to find out…

I know that my heart is getting better.  I can feel it.  The last time I had an echo my EF (ejection fraction) was 35%.  Normal is 50-65% .  I am hoping we get some great news.  Actually, I know we will.  I just have to stop thinking about it!

It started yesterday and I spent 3/4 of my day in bed.  Then I moved to the couch.  I was uncomfortable the entire day…

This morning I woke up a thousand times worse.  Head was pounding, my body feels like I have a 200 lb wet blanket on top.  It’s terrible.  Everything hurts.  This weather is THE WORST.  I know everything is inflamed inside, I can feel it.  I just wish the humid, damp rain would go away already.  I can’t move.

So cranky.  About to take a Tramadol because I really can’t fight the pain any longer.