Thursday, April 24, 2014

Plan's awry.... a copy and paste from the OTHER blog

So, my plan was to go to the cardiologist, as I'm supposed to go yearly anyway, and to ask him to take me off the carvedilol...as I didn't believe I needed to be on it anyway.  Now, to give a you an idea of that appointment...and the events that followed...leading up to tomorrow's T.E.E. (which I will get to), let me explain a small chain of events that led to this point.  Or maybe.. not so small chain of events.

The day I saw the cardiologist I'd forgotten to take my carvedilol, and by the time I'd made my appt that afternoon... my bp was pretty elevated.  But still, I planned on asking him to remove me off the medication and to explain why, that the fatigue/exhaustion, unbelievable breathlessness/gasping for air, etc. was made worse by the drug.  He wasn't convinced and wanted me to continue taking it and wanted to put me on an event monitor to see what was going on with my heart.

I believe it was less than two weeks with the monitor, or right about two weeks, I received a call from my cardio's nurse asking me to come in that Thursday (last Thursday) because the monitoring company had picked up something on the monitor and the dr wanted to discuss it with me and talk about medications.  Now, I'd pushed the button a few times, though not every time I felt something (as I should have), but I didn't realize that the folks monitoring me via satellite were actually monitoring me every minute, wether I pushed the button or not.  I had an echo scheduled with my cardio's technician, whom he trusted more than my former GP's tech (which I agreed with totally), so that thursday I went in for the echo and to talk to the cardio doc about what they'd found.

Thursday.  Diagnosis: A Fib (Atrial Fibrillation).  One of the most dangerous arrhythmias anyone can have.  All this time I thought those simple 'palpitations' were just that... palpitations.  They weren't.  They were my heart going into a dangerous pattern of A Fib.

Now we know why I had the mini stroke (TIA) last April.  Mystery solved!

The carvedilol was actually keeping my A Fib from going into long episodes as they had in the past (up to an hour at times), keeping them in short bursts lasting from less than a minute to up to about 15 minutes.  That's a good thing.  But I have to remain on carvedilol.

I not only have to remain on carvedilol, but I now have to have an ACE inhibitor added, as well as a "big guns" blood thinner.... for the rest of my life.

Cardio doc says that this is a dangerous situation because my BP is unstable and goes up and down.  High one minute, too low the next.  My HR also varies between extremely low, to normal.  Carvedilol is also a high bp medicine, but it has to be taken twice a day and in a TIMELY fashion, and I found out a couple of times just short the half-life of this stuff is...the first time being the day I forgot to take it before going to the cardio appt.   The second time.....

This past saturday... I dared to sleep in.  By the time I got up and had my ShakeOlogy breakfast... I was somewhere in the area of about 5 hours late taking the carvedilol.  I have to keep a BP log now, at least 2 readings a day, more if I have symptoms that I feel I need to check my BP in relation to.  I took my pre-medication reading...

Hypertensive Crisis


163/132  (61 bpm) This is a stage 4 hypertensive crisis that would normally send people to the ER or calling an ambulance to avoid a stroke.  Being new to this, I simply took my carvedilol and waited.  11 minutes later my BP was 105/71 (45 bpm).  That second reading was actually low, and my HR was extremely slow.  These wide swings are what my cardiologist was talking about, and it has only somewhat to do with the carvedilol, of which I'm on a very low dose.  But these swings occur throughout the day no matter what. Though with proper timing of the heart/bp meds there's less of these swings.  Problem is... when my HR drops very low, the regurgitation becomes even worse.

Moderate to Severe Mitral Valve Regurgitation and Increased Pulmonary Hypertension?

Last year when I was in the hospital the MV Regurgitation was at the "Moderate" level, which is considered a 'careful watch and wait' mode to see if symptoms increase, stay the same, etc.  When my new cardiologist received the records from Mobile Infirmary, however, he found that the written records stated "moderate to severe," which he said 'puzzled' him.  He explained that severe regurgitation usually presented with right side heart enlargement.  My dimensions are normal (thank God).  But, if it's bordering on severe, that could be an issue in which action may be required to stop it from reaching the severe stage.

He stated that because of my symptoms they needed to take a closer look to make a more accurate assessment of the regurgitation and to try and find the cause, such as mitral valve problem (prolapse, etc), and the only way to get a closer and more accurate look is to do a T. E. E. (Transesophogeal Echocardiogram).  In other words, to do an echocardiogram from inside the esophagus, because you can get closer to the heart that way..and get a better view.  I will be under for this procedure, of course.  :)

Pulmonary Hypertension... kind of spooky.

One year ago during an echo, I was told there was elevated pressure in my heart, meaning I had mild pulmonary hypertension.  In some people, mild cases often stay mild (depending on the cause).  When I spoke about this to my cardiologist on the first visit, he said... "You probably do have PH!  With the heart arrhythmia, high BP swings, mitral valve regurge..."  Well geez! lol  He's pretty blunt, but.. he's an awesome cardiologist, so I didn't mind that.  He's aggressive and leaves no stone unturned.  So anyway.....

Normally the pressure should be less than 25 but is now at 41.  Laying down makes me gasp for air.  Taking a shower or bath makes me gasp for air.  I just picked up one of my ferrets...and am gasping for air as if I'd run a marathon.  No fun.

I had a colonoscopy yesterday (because I'm 52), and the best part of that was.... the nurse putting the oxygen hose under my nose.  I wasn't expecting to feel so good when she did that.  It was so telling.

Today.... (Tuesday 4/22/2014)

Kind of a tough day.  I feel a lot of pressure in my chest, faint fluttery sensations, super dizzy, can't breathe well, head hurts, and I'm so tired.  Did one load of laundry... and I've had it.

I've been avoiding talking about any of this, even as I've dealt with it over the months...as it's gotten worse.  I'd been convincing myself it was this or that, blamed it on needing vitamins, needing my hormones balanced (which is being taken care of anyway), needing better nutrition (which I'm getting GREAT nutrition), then I blamed it on carvedilol... as it just got worse and worse.  I thought, if I just didn't talk about it.... ever.

Well, not talking about it sure didn't help.  Thinking it was nothing didn't help.  And thinking it was just my imagination didn't help.  In fact, my cardiologist showed me the EKG strips on the computer from the monitor and showed me what the A Fib looked like.  It's real.  And it's dangerous.  In fact he said "This is extremely dangerous."

I look back at all the stuff I ignored, shrugged off, because I didn't have insurance and no other doctor would take that next step and look into it....

I recall one episode last year when I was at Winn Dixie in Mobile.  I was in the check-out lane and my heart started with the 'palpitations.'  Normally I can count the beats, which range from 160-180 BPM.  This time...they were SO fast I couldn't count them.  I missed so many trying to count and counted to 200 and gave up.  It lasted some 25 minutes or so and stopped on its own.  Everything hurt  by the time I got to my car.  I feel like I'd climbed a mountain, running, with someone beating me with a baseball bat the entire way.  I was so tired by the time it was done.

I knew I needed a cardiologist, that I didn't want to just allow my GP (at the time) to prescribe carvedilol and have his in-house tech do echoes on me without my seeing a cardiologist.  That inner voice EVER SINGLE DAY keep SCREAMING at me to INSIST on a referral NOW.  It wouldn't let up.  That voice would keep me awake at night, and it would be the first thing I'd think about when I'd wake up.  I thought maybe it was because I believed I needed off the carvedilol.  I'd told T about this and he said I should just tell Dr. E that I needed a referral.  Period.  So I did.

I had multiple episodes one week, about 4-5 about 1 1/2 days.  During the day, sitting down doing nothing, laying down trying to sleep, and even once.. that woke me up during sleep.  I thought maybe it was the prednisone I was on.  Maybe it was just a bad week for my heart.  Don't know.  Either way, I knew I had to do something.  Glad I did.

Tomorrow's procedure.... (tomorrow being 4/23/2014)

I go in at 9:30am for the T. E. E. and the procedure is to take place at approximately 11:30a.  I'm not scared.  But I'm a little grossed out that they're putting something down my throat. lol  They're going to give me propofol, and I don't have any adverse reactions to that (as I found out yesterday), so I'll be out of it.  I'm also a little bummed that I can't watch.  I love to watch the echoes I have, so this is one little bummer about this particular procedure.

What do I expect?....

I guess I suspect they'll find my regurge is moderate.  I trust that the doctor is correct in that if my regurge is severe that I would have issues with enlargement of the right side of my heart, and... I don't.  So I think it's going to be okay in that respect.  I also doubt that the mitral valve is having any serious issues, because they don't seem to SEE it on the previous echoes.  But then, maybe there's another issue other than prolapse that can cause this?  In previous echoes they've found moderate regurgitation WITHOUT seeing the valve prolapsing?  Weird, if you ask me.  Oh well, I'm not the cardiologist.

So.... I guess, I've had my workout on this laptop for the moment.  Seriously, you've no idea what it takes out of me to do this, especially on days like this.  Ugh. lol


Laterz, taterz! :)

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