Cardiac Update
This is not part of The Diagnosis, but I'm sure I'll incorporate it at some point. I wanted to document yesterday (well really the past few months) for myself, but also to have an easy thing to point to when anyone asks what's new with me.
I believe when promoting the last chapter of The Diagnosis (Matters of the Heart: the Second Part), I described it as "wrapping up the cardio portion of the story". Something in the back of my head told me not to phrase it that way, that I was tempting fate, and yet I did it anyway.
Friends, always listen to the back of your head. I am indeed not done with this cardiac mess.
Sometime starting last spring I started experiencing occasional shortness of breath along with some hard to define other symptoms and more pronounced fatigue. (I am a mostly functional human being, but I do require lengthy naps in the afternoon to be functional.) At the time, I chalked it up to seasonal allergies or the seasons changing. It is not uncommon for me to experience spells of exhaustion and have a couple of days where I don't feel well.
This was different. It didn't go away. In fact, the symptoms seemed to get worse.
I have been visiting my cardiologist for over fifteen years. In that time I have never experienced any of the symptoms he questions me about during my visits. Shortness of breath? No. Chest pains? No. Swelling? No. I was what you call an asymptomatic patient. Which is good! It means I was just placed in the "closely monitoring" category. Visits every six months, yearly tests. I even had a defibrillator placed five years ago for good measure. At the end of my appointments, Dr. Levy would always instruct that if I were to experience symptoms I should call his office immediately.
Wanting to be a good patient, but more importantly because the symptoms were scaring me, I made an appointment. We had not performed the yearly echocardiogram this year and I thought at least he could order that.
Dr. Levy was indeed concerned by my report. He ordered the echo, but wanted to also perform another stress test. Those of you who have kept up with my cardio story so far might recall that I would rather eat a bowl full of slugs than do another stress test. I made a face and on the fly suggested another option.
"Would it be possible to bypass the stress test and just jump straight to the cardiac catheterization?" I suggested this knowing that was the next step after stress testing.
He thought about it for exactly one second before nodding thoughtfully and saying, "yes, we could do that."
I had dodged that bullet.
Still though, a catheterization is no walk in the park. I've had them before and they are fine, but it takes up the whole day, AND the day of Ryan, who has to be there for transportation, company, and moral support. ALSO I made my dad come in the afternoon for company and moral support. And feeding of ice chips since I had to lie flat on my back after the procedure for 4 hours.
There was a slight inkling of worry in the back of my mind that they actually wouldn't find anything and I'd be back to square one with the not knowing what was wrong with me. It might sound absurd to want to find something wrong with your heart, but all of us that have had a mysterious ailment know it at least feels better to understand the source and to have a game plan.
Mystery was absolutely not the case here. The test showed I had some fluid backing up into my lungs thanks to my heart not functioning as well. This would explain the shortness of breath and occasional coughing fits. The game plan for this complication is to try and lower my dry weight at dialysis and make myself as dehydrated as possible so there is no fluid to back up. This is doable.
The other big problem is, the already damaged/diseased part of my heart (which in my case is the left descending artery, or as Dr. Levy helpfully described: the most important artery) looks even worse now.
So where does that leave me? More testing. We are not done. Next up is a PET scan to determine the health of the tissue around that artery and judge the possibility of surgery. Dr. Levy's concern in the past about attempting surgery (which he didn't want to try while I was feeling good and asymptomatic) was that he might make things worse. If you read between the lines of what he was telling us yesterday, things looked so bad now that he couldn't possibly make it worse. So surgery is now on the table.
Not great news, and I hate to be a downer, but I am glad that I'm not crazy and that there is a plan moving forward. As Ryan said in his pep talk during our post game review last night - this is what we do. This is just another hurdle and we'll get through it.
His use of the word "we" means the world to me. We are both going through this. We were both stressed out the past couple of weeks and were both completely wiped out last night. I might have a difficult journey ahead of me, but it reminded me that I am not alone, and that makes all the difference.
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