Quarterly Update – July 2013

One of the realities of my Life With Sarcoidosis, and the accompanying conditions it brought along (heart failure, pulmonary hypertension and an implanted defibrillator), are the constant doctor appointments with different specialists and the lab tests that come along with them.

At one time, I was finding myself going to a different doctor or a lab every week, and although my life is with sarcoidosis, sarcoidosis was becoming my life. So I decided to change that by organizing my appointments and lab work all in one week.

Unless I have an issue going on, my doctors all want to see me every three months, and my AICD (defibrillator) is also interrogated every three months (my defibrillator automatically transmits an update to my electrophysiologist -don’t you love technology?). Instead of making appointments at different times, I decided to time all my appointments around my ICD interrogation, which happens the first Tuesday of every third month, and last week was the magical time where all the appointments and tests come together.

So here is my medical update:

ICD Interrogation & Cardiologist

In April, at my last interrogation, my ICD reported that I had 792 tachycardia episodes in the three months prior. That sent everyone into a bit of a panic, but it all was just that my heart has gotten so much stronger that the ICD was thinking the strong heart beats were double beats. In other words, my ICD was hearing an echo, and thinking my heart was beating twice as fast as it really was. Luckily it never shocked me. My electrophysio doctor had the Medtronic rep on call adjust my ICD so it was not so sensitive.

This week, the report said I had 2 AT/AF incidents on a different days, but they were all under a minute in duration. Otherwise, no issues. My battery is now at 2.83V, and my ICD will need to be changed when the battery gets to 2.62V. So my calculations is that I will probably change the ICD in another three or four years at this current rate.

When my ICD reported those incidents three months ago, my cardiologist put me on a medication called Diltiazem to control the arrhythmias. I developed terrible stomach cramps and some constipation with that mediation, and my arrhythmia were really false positives, so now I am off of it. Yea! One medication gone.

Sarcoidosis Specialist

In December I had the flu and my PFT numbers in January were down and so my sarcoidosis doctor placed me on a new inhaler called. In April my numbers were back up and now this time they were back down. So it seems the Spirva wasn’t doing anything for me and i also developed slow urine flow, a side effect of Spiriva, so I am now off of that medication too. Double yea!!

Had my CBC blood test also and all my numbers are exactly in the middle, just perfect.

So all in all I am doing well. I am stable. I can relax for another three months before I have all those tests again. Well, except for my knothole liver tests.

3 Comments Add yours

  1. It’s good to know that you’re doing ok. Good job!!! 🙂


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