Just when you thought it was safe....

So, as you can tell from my various activities--riding strong in Pelotonia, hiking  and white water rafting in the Cascades, racing in cyclocross--my health has been pretty good lately.  But....there's been this issue that has caused me some concern and been a source of worry for my husband, who's an ICU nurse.  When I exercise, my heart rate has been about 20 beats per minute higher on average and at max compared to when I got sick.  On long, hard bike rides, I've had extended periods of time during which my heart rate was above my max HR.  And, I've had some near fainting spells during particularly difficult times.

I did the responsible thing (shocking, yes?) and consulted with my hematologist.  Yes, it seems odd to consult with a hematologist on a cardiac issue but I assume all issues are due to the effects of the amyloidosis or treatment so I start with Dr. Efebera.  She referred me to a cardiologist at Ohio State Ragavendra Baliga, MD.  I met with him September 17 and, like every other physician I've encountered at Ohio State, I was impressed with his knowledge, friendliness and balanced perspective.  I loved his icebreaker question.  He asked me, "What are you famous for?"  I answered, "Kicking Amyloidosis' butt and being a data geek."  (Confirmation came that same week when Pelotonia tweeted out a link to my story in The James magazine-- https://twitter.com/Pelotonia/status/647018183652737024 and Teradata Partners posted an interview with me talking about how we select sessions for the conference-- http://www.teradata-partners.com/blog/post/global-compelling-stories-value ) After reviewing my history, he ordered some tests--a cardiac MRI and a VO2 stress test.

I've had a cardiac MRI before.  You get an IV to deliver the contrast, you get loaded into the MRI machine and you spend about an hour following instructions of when to breathe and when not to, and listening to noises that sound to me what an apoclyptic robot war would sound like.  The VO2 stress test is the usual stress test--walking then running on a treadmill with ever increasing pace and incline--WITH a mask over your face and your nose pinched shut so they can measure how your body uses oxygen.

First, the good news....the VO2 test shows that I'm in pretty good shape.  I performed at 138% of what is expected for someone of my age and gender.  Dr. Baliga says he never sees anyone over 100%...well, he's a cardiologist treating advanced and complex cases.  Logic says his patient population won't be filled with folks who have high cardiovascular function.  He told me my VO2 max was 36...and then he told me that Michael Phelps' was 71.  My rose-colored glasses helped me see that halfway to Michael Phelps for a 53-year-old woman wasn't too bad.

The bad news is that the MRI showed some thickening of the pericardium, that's the fibrous sac that contains the heart.  It also showed some enlargement of the atria, the top chambers of the heart.  These are not the chambers that pump the blood out, they're the ones that receive blood from the body and the lungs.  Their walls are thinner than the lower chambers, the ventricles, that do the pumping.  

The MRI report said there was evidence of "constrictive physiology" which means the thickened pericardium, the sac that holds the heart, could be pressing in on the heart and constricting it's function.  Like a balloon, when you squeeze on one part, it causes another part to enlarge.  That may be why my atria are enlarged.

So, Dr. Baliga wants me to undergo a cardiac catheterization to measure the pressure in my chambers....to know whether my heart is constricted.  Initially, I wasn't a big fan of the idea.  When I asked my standard question regarding any major test, "How will the results change my treatment or management of my disease?"  The answer, as so many things when managing a complex disease, wasn't as straightforward as I would have liked.  Bottom line is, it could rule out this constrictive physiology and show the heart isn't constricted and this isn't something we need to monitor and manage over time.  Or it could show that this is a problem that we need to monitor and this would give us a very thorough set of baseline data so we could pick up changes and know when to start treating it....through surgery by cutting a window in the pericardium.  Eeek! 

Dr. Baliga called Amyloidosis an outlier disease because there's not a lot of proven treatment approaches once you get beyond the basics of the disease.  And he said I'm an outlier within the Amyloidosis patient population so there's no literature on how to deal with my situation...everything is anecdotal.  The good thing is, he trained at Boston which is one of the centers of excellence in Amyloidosis and has a colleague there who he will consult on my case after he gets the results from the catheterization.  

As I was texting with my nurse practitioner Tammy about whether to have the cath, she strongly recommended it saying, "This is your heart, we don't want it broken."  I said, "A ruptured atrium sounds kinda serious" and she said, in her usual understated manner, "Ya think?"

So, on October 28, I'll have a cardiac catheterization done by a cardiologist specifically chosen by Dr. Baliga because, as his nurse comfortingly (?) noted, he has a lot of experience with patients with heart failure.  And then we'll see if I have an additional problem to monitor or not.  I was thinking about how well things had been going over the last year and it made me think of the tag line from Jaws 2....

But, I'm going to "stay in the water."  Between now and then I have two cyclocross races, a trip to Nashville for an Amyloidosis Gala and patient meeting, a trip to Anaheim for the Teradata Partners conference including a doing a presentation called "Curve Busters: Looking for a 'Dare to Be Great' Situation" (with my friend Dean Furness who became a paraplegic from a farm accident a year before I was diagnosed), a Frank Turner concert in LA the night the conference ends and dinner with my friends Reid and Bethy, a party with my Pelotonia team, leading my church's pledge drive as chair of the Stewardship Committee, organizing weekend food kits my church is providing for 75 students on free lunch at a nearby elementary, starting a new mentoring relationship with a 6th grader at Champion Middle School, watching some Gator football, doing some exercising and yoga, keeping the day job, wife-ing a little for Al and Mom-ing a little for Claire.  

No time to worry.  God has given me the grace to deal with what is, and not worry about what might be.  

Keep on keepin' on my friends!!