Always Pursue a Second, Even a Third, Opinion

I had a scare – three years post open-heart surgery – a little over a year ago. Based on my local doctor’s evaluation of an echocardiogram, and my potpourri of symptoms, I was led to believe that I might have to have open-heart surgery all over again.

I had had successful open-heart surgery to repair my tricuspid valve along with a right-sided Maze procedure five years ago, in July 2003. What??? Surgery automatically all over again because of another valve issue?

I was in fact being misdiagnosed. This does happen more than we like to hear. In my case I have a repaired adult congenital heart, not a “normal” heart, and as — fortunately — my responsible cardiologist in Albuquerque, NM, urges me, it becomes worth it to travel to where the medical specialty experience is.

So before filing off to our local heart hospital for a mitral valve repair, I booked consultations both at the Cleveland Clinic (Cleveland, Ohio) and at the Mayo Clinic (Rochester, MN, where I had my original surgery). There, particularly at the Mayo Clinic, where they have an enormous track record treating congenital heart defects, it was confirmed I did not need MV surgery. My problem turned out to be an entirely different heart issue – for which I was, thankfully, treated with meds.

I write again today, as I stress in my book The Open Heart Companion: Preparation and Guidance for Open-Heart Surgery Recovery, to illustrate how important it is to get yourself a second – or perhaps even a third – opinion from a specialist for your particular heart’s challenge. Do not accept the first diagnosis you get just because “local” seems easier. It’s not easier compared to not needing surgery!

Here are two reader responses to last month’s topic,
Lingering Cognitive Challenges

From Alison Pierce Northfield, MA, with an invitation to communicate with her if you wish:

I had a surgical repair of my aorta seven years ago.  I am doing well although I am on a considerable amount of medication.  My chief complaint is considerable cognitive changes.  I read with interest your statement that lingering problems were more prevalent in older "survivors".  I was 51 when I had my dissection.  My problems were exacerbated by the fact that I "coded" on the table and was subsequently revived 3 times.  I might have had cognitive problems due to the "pump-head" theory but the impact was increased by oxygen deprivation during "codes".  I am aware of my "short falls" and try to compensate for them.  The saddest part of my condition is that I have very limited memories of my life and marriage with my first husband.  He died very unexpectedly in 1997 and we never had any children.  My current husband tries to fill in the gaps but he has no idea about my past life.  I digress.......my point is that it is not always "older" people that develop significant cognitive changes after "open-heart" surgery.  If anyone wants to contact me I am more than willing to communicate with them.  My e-mail address is alij@aol.com.

                                                                          — Alison Pierce

From Michael Arloski, Fort Collins, CO – hiking in the Rocky Mountain foothills on the two-year anniversary of his surgery:

A little over two weeks ago I was hiking by myself in the Rocky Mtn. foothills. I had on my heart rate monitor and was pacing myself to keep the rate down to a good exercise level. Suddenly I realized that it was March 29th...two years since my mitral valve repair surgery! I thought, "What a great place to be and what a great thing to be doing as I remember that day!" What a truly "long strange trip it's been"! (to quote The Grateful Dead). From time to time I'll read your book and it jogs my memory of what that experience two years ago (including the recovery time!) was like. I'll remember, "Oh yeah! Now I remember I had that problem." Things that my mind has comfortably allowed me to let slip from consciousness come back and really help me appreciate the present moment.

I've had some ups and downs...trouble with rapid HR (atrial flutter) that was repaired in January with a heart ablation . But, I am down to only one heart medication and off of the blood thinners (except plain old aspirin). I'm still having to work at the whole work/life balance thing, like all of us do, but have my priorities straight.

Even two years out, there are reminders that I'm still a "heart patient", but, like you like to name it, a "heart surgery thriver" as well.

                                        — Michael Arloski

Feedback Request

Please email me at Maggie@openheartcoach.com with your observations and experiences which will be informative to others for future issues of Heart to Heart.  Please include your name, city and state.  Please also tell me what else you would like to see covered in this monthly newsletter. Thank you!

 

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