It's been a mess trying to get this appointment for Sam lined out.  They had us booked for a Friday afternoon appointment but I was so upset when I found out it was going to be with the same Cardiac Electrophysiologist that Spencer has.  I am not super happy with him.   When I hung up the phone with the nurse, I immediately felt anxious.
A short while later, she called me back to say that doctor decided he couldn't be in clinic on Friday so she wanted to switch us to someone else but first she had to get all the docs to review his chart and decide if they would take us on...and get permission from the doc we had our first appointment from to switch teams.  What is that all about?  I thought we lived in a 'free' country...or something like that.
Late this afternoon, the nurse confirmed that one other doctor agreed to take Sam's case.  I'm still not feeling very settled.  I hate new doctors.  I hate the rehashing of history.  I hate the getting use to bedside manners.  I hate it all.

I am so tired of the run around with these heart issues.  Our Cardiac docs have not been very good at listening or considering all the issues the kids have.  They have been narrow minded and only thought of the kids as 'healthy', run of the mill, young adults. This results in stupid comments like, "Well, Lance Armstrong has a low heart rate."  They like to think that a low heart rate in a young man is a sign of an active, healthy, athletic person.  My kids are young and fairly active but no where near elite athletes and as far from healthy as one can venture.

There are so many serious points to consider...My kids have short telomeres.  Telomeres protect the ends of the Chromosomes.  They also have many clinical symptoms of Mitochondrial disease. The mitochondria gives energy to the cells, especially the muscles...the heart!  I'm not sure what the repercussions would be in putting a pacemaker in a heart that is dying due to short telomeres or mitochondrial issues that don't provide enough energy to the heart cells.  It may actually end up overworking the heart and increasing problems and not solving the bradycardia at all!

Then to add to the mix of puzzling thoughts, his Chiari Malformation in his brain that can actually be the cause of bradycardia due to increase cranial pressure.  So, if we put a pacemaker in and disregard his brain problems, we aren't going to fix anything! I feel like we aren't going to have answers anytime soon.  In my perfect world, we need to take a closer look at what is happening with his brain before we make any decision on his heart.  And then there is his liver...Ugh!! I can hardly wrap my mind around everything that is happening to us this week.

It's complicated and I only know enough to know that I need to be very concerned.  I really, really hope this doctor knows enough to actually do the right thing.  I am praying that I like him.  I am praying that I like him so much, I can switch Spencer over to him and we can start making progress with Spencer and his heart.

At work, one of Sam's bosses has really taken him under his wing.  He invites him to go boating with his family.  Recently, his boss was diagnosed with a heart problem and is wearing a heart monitor around until he has his pacemaker consult this week in Utah too!!  What are the odds?  Of course, Sam says nothing to anyone about what he is dealing with, except his good friend that works with him.  Tonight, his boss was talking to him and Sam brought up his heart monitor and then told him that he is going for a pacemaker consult too.  His boss was floored when found out all the problems Sam has.  I'm so glad he has an open mind...I have worried that if they find out how bad off Sam's organs are, they wouldn't let him work there.   At least I hope the guy has an open mind.  It does seem like it is one thing they have bonded over.  We'll see.

The strangest thing happened to me today...I met a man who is here in town, visiting from Texas.  He recently retired as a contractor for NASA as a software programmer for the astronaut program! He is here to complete part of his bucket list and see the Total Solar Eclipse.  He has even volunteered to help the city during that time.  One thing led to another and he ended up coming for dinner! Yikes!!  I get myself in the strangest situations.  I rarely invite people I know to my house, let alone for dinner! He is a fascinating man.  I spent over two hours talking to him about God, prayer, revelation, religion, poetry, music... After dinner, he served the dessert and then did the dishes!  Washed them by hand even.   I'm still trying to figure out how all that happened!  More on that story when we get through this heart stuff!

If nothing else, this blog is stranger than any fiction book you will read!



  1. That sounds like an awesome new friend! You know, maybe just print out paragraphs 4 & 5 of this post and make the doctor read it before you even talk during the visit!


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