Week Six and Final Virtual Visit with Surgeon!

Hello all!  Today Glen, Katie, and I met with Dr. Kaneko via Zoom at our kitchen table.  He confirmed what we already knew; that although I am still recovering, I am progressing extremely well.  This reflects considerable progress from a FB post I made at week 4 when we hung five Christmas wreaths on the house with bows that took me three days to complete.  I had intended to write a blog post then, but lacked the energy to get it done.  This is what I said two weeks ago, to all who kindly cheered me on:

“Thanks so much folks! I am doing great, but truth be told, it will be another couple of months before I am really up to speed. It took me three days to get the darn bows on the five wreaths, but I did it. I am behind in painting, but hope to start in the next few days. This slo-mo life is all normal after six hours of OH surgery. It is all good, and I remain incredibly happy and grateful and celebrate every day! Thanks for your support!”

Today, I was able to report a significant increase in my energy levels.  I can walk a mile and a third on the flat quite easily, but I get breathless going up hills.  I learned that going up hills is fine, but pausing and refreshing as I go up the hills is the right approach.  I expressed concern that my blood pressure and pulse rate on average were a bit higher than before the surgery although last night it was 127/75 with a pulse rate of 85bpm.  Dr. Kaneko confirmed that this is normal, because my heart can “do more now” and with a thoughtful, carefully paced exercise program, it should return to pre-surgery levels.  I now have now have no exercise restrictions but must build on successes steadily over time as I increase cardio duration and strength training.  Most of all I must listen carefully to my body.  Hooray! 

Dr. Kaneko knows he can trust me with this, because it was “listening to my body” that brought me to him.  Earlier in the summer, I had followed advice to go to another world famous institution located in another part of the country.  After a two day, 14 hour road trip (because air travel was inadvisable due to COVID 19) we arrived, and I had all of the baseline tests I had previously had in Bangor done all over again because this institution only trusts its own testing.  The tests, some of which were not as in depth and therefore less accurate than those I had previously had undergone in Bangor, showed that I had MVR at 3.3 (on the 1-minimal to 4-severe scale).  However, I was puzzled because 3.3 was the level where I tested in the summer of 2019 when one cardiologist said I should “get the repair done as soon as practible.” I didn’t because a follow up TEE test in Bangor had shown I was 2.9, and watchful waiting was OK.  Then, in July 2020, the repeat TEE, also done in Bangor, showed I was “almost at 4 and close to needing a replacement valve.”  Therefore, you can imagine my surprise when the imaging cardiologist (I never even saw the surgeon) said, “Come back in 6-9 months.”  When I started to delve further he cut me off saying, “Look, why don’t you just look at the glass as half full?  You do not want surgery before you must have it.  Things can happen during surgery!”  His ominous tone stunned and quieted me.  In the following weeks, I sent follow up questions citing studies that showed early intervention resulted in better outcomes and more longevity.  He finally admitted that it was not a question of whether I needed surgery but when.  He did say if I really wanted, he could arrange for “elective surgery,” which felt as if I were discussing a rhinoplasty and not mandatory heart surgery.  Clearly, the first institution was not a good fit for me.  I was grateful when my doctors in Bangor arranged for a second opinion with Dr. Kaneko.  As described in previous blogs, Dr. Kaneko’s forthright, informative style was an instant “click” for Glen and me.

I mention the foregoing, not to disrespect a highly regarded institution that has played an important role in saving many lives, but to point out the importance of listening to one’s inner body voice.  Much of medicine remains subjective, even test interpretation.  Sadly, it is also a bit political at certain times and places.  If things are not adding up, it is up to you to firmly but respectfully be your own advocate.  I am so glad I “persisted” as Dr. Kaneko reiterated again today that my MVR was more severe than the imaging showed and I really needed the surgery.  Had I put it off, he said my heart, including other valves would have been damaged further.  Remember, your body is your best friend. Treat it well!

This may be my last blog post on my heart valve surgery.  If I have anything further that might be useful to someone looking at MVR repair, I may add it in an Epilogue, but I think I am well on the road to a full recovery.  I am always available to anyone undergoing this surgery.  I was helped by a woman who wrote a blog in 2016, and will do the same for anyone else.  Feel free to reach out to me at jeandeighan@gmail.com.  This is intense stuff, but I am proof positive that there are good people out there will the skills and heart ready to help.  Most importantly, I am evidence that some good things did happen in the year 2020.  So!, Keep smiling, be safe, and stay well!