Heart Function Team Meeting

On Monday, December 15th I met with the full Heart Function Team. 

I have a nurse that acts as my point person (my constant), a pharmacist that reviews my medications and any concerns I may have with side effects and other potentially conflicting vitamins and substances, I met with a resident that knows my file inside and out, and I met with the team lead cardiologist who has the final say, checking the t's and i's to make sure everything is dotted and crossed off (not necessarily in that order).

Essentially it was a positive meeting.  A game plan for my medication and treatment was reviewed and established (prednisone taper begins Jan. 9th!!), an activity game plan was reviewed and established (green light within reason, arm still has 2 weeks of healing and I need to use common sense and be accessible to emergency crews as we learn my new limits), and a maintenance/monitoring game plan was imitated.

Monitoring:
The team is looking into the possibility of using MRI for monitoring despite the fact that my ICD may not be MRI friendly (they are delving deeper with the head of radiology to review my type of ICD.  Essentially its much easier for them to use MRI for ongoing monitoring since its easily accessible, no radiation and they have a baseline test to use for changes with my heart.  But, they are cautioning me that by going this route I may have some issues with my ICD.  Its seems that some ICD's are more MRI compatible than others.  While it sounds like mine isn't one of them there's some discrepancy on what "compatible" really means.   While none are really MRI safe (there's the risk the MRI can wreck the device) I get the sense that studies done on the ICD's have been flawed so the reality is that it may be perfectly ok for my ICD to have an MRI. 

What they will do is scan the device pre-MRI.  Then I'll have the MRI and following the procedure, my device will be scanned again to ensure it hasn't been impacted.  If it is compromised, I may be getting a new device sooner than later.   An unfortunate waste of $20,000 but the reality is that my other alternative is a PET scan, a scan that is really hard to get since the government limits the number of scans in a year.  So either I go "too long" without knowing what's happening to my heart, or the risk my ICD and know what's going on when they need to know. 

I'm ok with an extra surgery if needed if it means better monitoring (= longer life) and if it means I can avoid the radiation that is associated with the PET scan.  No use being cured of heart damage only to end up with cancer down the road.

We discussed other issues with the sarcoid, one being the success they have seen. I've been told that 80% of the time the prednisone will put the sarcoid into remission at least for a period. Then its simply a waiting/monitoring game for when it comes back and then we do it again.

I get the sense that there haven't been too many heart transplants for cardiac sarcoid (1-2 a year) vs ~ 15-20 cardiac sarcoid patients a year.  So fortunately its a small component and who knows how long they've battled sarcoid before needing a transplant. 

It is interesting that they did mention that cardiac sarcoid has seemed to increase in the last few years and their rationalization is that they've gotten better at detecting it.  In fact, the patient immediately following me was another cardiac sarcoid patient.  Not that I would wish this on anyone but the more that are impacted, the better they get at treating it.  And I feel this is a particularly important issue because the number of people I see who have been impacted by it are young.  This is not an old person's disease.  Most common age for diagnosis is between 20-40 years of age.  Even more heartbreaking is its not something that is anyone's fault.  Lifestyle does not make a difference. So you could have the healthiest lifestyle ever and still be impacted by this.

In fact, they tell me one of the reasons I'm still here is because of my healthy lifestyle.  So while its frustrating to do a lot of things "right" and still be facing a deadly disease, its comforting to know that healthy choices still have a positive and crucial impact.