Monday, December 17, 2018

On My Mind



I started this blog when I thought I was recovered from my recently diagnosed cardiac issues, not realizing that this kind of thing is never...healed...just managed.

For new readers a recap:

In Feb 2008 my brother, at the tender age of 51, fell over dead from a massive heart attack.  When asked by the coroner if this was common in my family I replied that someone always seemed to be falling off their perch and I was advised to immediately get 'checked out'.

I made an appointment with my family doctor who immediately put me on Lipitor (statins) and blood pressure medication.

Unfortunately I appear to be either allergic to, or cannot tolerate, statins (the effect is the same - they make me deathly ill) and much adverse effects later, I found myself in March in emergency with not chest pains as such, but feeling like I had an elephant standing on my chest.

I was incredibly fortunate in that my doctor sent me immediately (do not pass go, do not collect $200) to emergency.  I was even more fortunate in that the attending doctor who saw me in emergency believed that I had cardiac issues and scheduled me for a stress test.

Because the three times I went to emergency afterwards with feeling ill and chest 'pain'?  I was told I was having a panic attack and not a heart attack.  One doctor told me I had an esophageal problem, not a heart problem.

In the end the stress test 'proved' I had cardiac blockages and on May 9, 2008 (our wedding anniversary as it happened) I was having stents installed.

But!  I had not (yet) had a heart attack.

Life went on, and I carried on taking Lipitor feeling more and more ill until the day I could not force myself to take the two pills (I was on maximum dose at this point).

Much angst followed with my doctor insisting I had to take some form of cholesterol reducing medication and every single one of them causing me all sorts of grief.

Eventually I just flat out refused to take anything.

As part of my 'recovery' after the angioplasty I saw the cardiac nurse and we went through a rather exhaustive questionnaire to determine if my lifestyle needed to be 'improved'.  At the end the nurse sat there, tapping her pen on the desk, shook her head and said "You were doing everything right."  Then why did I wind up here, I asked.  She looked at me and said "You can't fight genetics."

Several years followed and other health issues arrived (getting old is not for sissies) and suddenly I was once again having shortness of breath on exertion and fatigue.  To be truthful the fatigue had never really gone away although it had been less for a while.  But now it very suddenly was getting worse.  I went from being able to walk up four flights of stairs in October to barely two in December.

I requested a referral to a specialist but once again an ECG showed my heart was 'fine' - no sign of a heart attack.  I insisted on the referral but since I seemed to be 'fine' there wasn't any particular hurry to get me in.

Eventually I got an appointment and explained to the specialist what was going on only to be told I was getting old and out of shape.

I pushed for a stress test based on my history of blockages and eventually I got the test.  Which I failed entirely.  No surprise to me - huge shock to the doctor.

Instead of attending Complex Weavers, I was on the table in Vancouver having another angiogram, being told that yes, I have blockages but none of them were particularly 'bad'.  The doctor at the bedside running the wires told me I was fine, there was one last test to run, then they'd get me ready to go home and I could carry on with my life because I was fine.

Cue the test, which took all of a couple of seconds and then doctor says "Oooohhhh.  You need by-pass surgery."

I turned my head to look at him and said "That's not what I wanted to hear."  He looked down at me and replied "No one does."

I asked about stents and he said that the blockages were too close to junctions of main arteries and the stents would then block the main arteries and cause lots of problems.  He said the blockages were ostial in nature (very close to a sharp bend) and therefore were acting as through they were much worse than the 60% blockage they were showing as.  Surgery was my only option.

They then referred me to a surgeon.

I went home, looked up what 'ostial blockages' were so that I understood what was going on, looked up my surgeon and found out he was head of cardiac research at UBC, had pioneered a surgical procedure which would allow him to do the by-pass surgery without putting the patient on a heart-lung machine, and even though I would have to wait some months, decided to just take it easy and wait.

When I was doing intake for the surgery, the anesthesiologist observed with some surprise that I had not had a heart attack.  I told him I wanted to keep it that way.  That I had a strong heart but crappy plumbing.  He assured me that the surgeon was a very good plumber.

The nurses I saw were all very supportive of my having the surgeon I did, every one of them saying he was very good, so I was glad I'd waited.

The moral of the story is this:  some people do not have the 'classic' heart disease symptoms.  They don't always have the chest pain, the radiating pain down the left arm.  They are not always unfit and living unhealthy lifestyles.  Sometimes it is genetic and presents in other ways.

I was having pretty 'classic' female cardiac symptoms, BUT SO WAS MY BROTHER.   I am quite convinced that all those family members who died from massive cardiac issues all had the same ostial nature blockages, both the females and the males.

My symptoms?  Fatigue.  Shortness of breath on exertion but also?  My fingernails had turned a kind of lavender colour, even the whites.  And so had my brothers - a thing I noticed the Christmas preceding his collapse at work.

I am now taking a new medication that is not related to statins in any way.  It is controlling my cholesterol levels and I am hoping that it will continue to work and not present me with any adverse effects beyond what I am currently having, which while annoying are livable.

Not sure why this seemed important today but here it is.

3 comments:

Rhonda from Baddeck said...

I'm glad you persisted and that the doctors finally listened to you. Hearing about your experience is sure to help someone - whether personally or when they hear someone else describing their symptoms. We (especially women) need to trust ourselves when something feels "out of whack" with our bodies.

Lynn Smetko said...

Glad you persisted and are here to tell us about it.

Louisa said...

If just one person reading this gets their symptoms checked out, it was totally worth writing. Stay as well as you can! Hugs,,,