October Update

So.

Today I went in for a couple of procedures that I have known were coming for a few months now. For those not up to date, I have long had cardiac issues stemming from my even longer-term kidney issues. For those who are up to date, forgive me for repeating myself a bit. 

Luckily until this year I have not had any symptoms. This spring I started feeling bad. 

Shortness of breath, a strange scratchy sensation in my chest, coughing, and just running on an even lower level of energy than usual. In July I had a left heart catheter. At that time my cardiologist determined that my lower left ventricle was working extra hard to keep blood out of the upper ventricle and by turn out of my lungs. This is referred to as Mitral Regurgitation.

The plan was for me to pull as much fluid as possible at dialysis to relieve some of the pressure in my heart. I did start feeling a bit better due to this action in the past couple of weeks, but we still needed to go back in and check that pressure under the best possible circumstances.

The first test I had performed today was a Transesophageal Echocardiogram. It's where they stick a transducer down your throat to look at your heart and lungs. For me this test was super easy. They use the same sedation as used for a colonoscopy, so the last thing I remember is the anesthesiologist instructing, "take a deep breath if you feel stinging through your IV."

This test would have been a breeze had it not been for a self-inflicted wound. They had strapped a plastic pulse oximeter snuggly to one of my left fingers and apparently before I had regained full consciousness I managed to scratch my left eyeball with the plastic. Cool.

Next was a right heart catheterization (to this point I had only had the left side catheterized) which would gauge the pressure of the heart (that "how hard is it working" question).

Afterwards, Dr. Levy came to talk to me and Ryan and my dad. Though the lower level of fluid in my body was apparent (we did our job on that front), the pressure in the heart had not changed. 

So what's next? 

The most recent treatment for Mitral Regurgitation is Transcatheter Mitral Valve Repair to basically clamp the valve so the opening is smaller. It's minimally invasive, not open heart surgery, but I would need to be in the hospital at least overnight.

This option seems very doable to me. I'm going in a week to the Mitral Valve clinic to see if I would be a good candidate.

What Dr. Levy said next, however, shook me to my core. If the Mitral Valve Clip doesn't help and I start to feel worse we would need to go straight to exploring a heart transplant.

He had no more tricks up his sleeve for someone like me with a weakening heart. I had thought somehow this option would be five steps and years down the line, if ever. Dr. Levy himself had never even mentioned it before.

I'm trying not to get ahead of things and take it one step at a time. Hopefully the valve repair will work. But on the other hand it can take years to get a heart transplant so you don't want to wait too long if you sense it will be needed.

So yeah, it's been an overwhelming day. I still can't see very well out of my left eye that I mauled, but it at least feels better.  Andre is giving me his full attention by demanding snuggles. And Ryan bought me a cheeseburger and chocolate shake on the way home (my cholesterol is very low, y'all, don't scream at me). 


*I'm sure there are 1000 mistakes in this post and there are parts that don't even make sense. I had a lot of sedatives today and my mind is spinning. I just wanted to get it out there because I know people have questions.


Comments

Jill said…
I will be thinking of you, Ryan, and Andre! sending love and rest.
Anonymous said…
Thank you for sharing the update, Jamie. We will see you soon. Until then, make sure Andre and Ryan provide ample milkshakes.

Nicole

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