Tuesday, March 10, 2015

Cardiology updates

Today, we had our cardiology appointments for both Shelbie and Sam.

As we drove down to the city, the kids were laughing, joking and seemed to be doing well.

Me...on the other hand was trying to keep up with my racing heart.  I think my heart actually made it to the clinic before I did...It was running fast!

I'm not sure why either...I pretty much knew what our two options were going to be and I have had weeks to mull it all over.

Starting with Sam, he has Pulmonary Arteriovenous  Malformation or, as I will now refer to it...Pulmonary AVM.  Basically, he has multiple holes in both lungs.   These 'lesions' are causing the increased pressure in his lungs and causing oxygenated blood to shunt into the wrong side of his heart. This is increasing the pressure in the right chamber of Sam's heart.

Unfortunately, there is no known cure for this disease and no treatment.  It is a progressive disease but it's anybody's guess how slow or fast it will progress.  I wasn't aware that it is a disease not just for the lungs.  It can attack the liver as well.  As far as we know, Sam's liver is okay but we will follow up with our Gastrointerologist for further evaluation.

Shelbie's is not so easy...not that Sam's is easy but now we know.  As he looked at Shelbie's echo study and EKG, He said, "Ahhh, the plot thickens!"

Yes it does!

Shelbie was confirmed to have a hole but he doesn't think this is responsible for her shortness of breath or chest pain.  He isn't entertaining the idea of fixing the hole.  At first I was flabbergasted!  If there's a hole, why not fix it?

Then, he reminded me that her bleeding disorder ITP would create a risky situation for surgery.  It would not be an easy surgery but involve a titanium piece that fits into the heart.  Given her other complicated health issues, it's just risky.  He and the medical studies recommend waiting until the first 'event' to fix it.  He believes that the fix is going to be more difficult and more dangerous than to leave it for awhile.

You can imagine how hard it was for Shelbie to hear this!  Wait until your first 'event'??  That's sort of like, waiting for the other shoe to drop...only worse...waiting for you heart to drop!  Not fun.  Crappy really!

She has the valve problems, as does Sam but he wants to wait a little longer on that and just watch them closely.

In the meantime, he wants to do several more tests on Shelbie like a stress test, a swallow study, more imaging...blah, blah, blah...basically, we will be hopping over the next few days and weeks.  The nurse gave me a full 8x11 sheet of paper with all my instructions on it for calling who, when to get it all scheduled.

We still have the pulmonology appointment for her coming up and at that time, we will probably start the process for testing her for Pulmonary AVM's.  As I took a little more time tonight to investigate our new diagnosis,  I read that AVM's can show up on a CT scan to look like nodules and calcifications!  Ugh...the image they showed even looked just like the image on Shelbie's lungs.

I'm a little anxious.
I'm a little sad.

Okay...really...a lot sad.   And I'm tired.  A lot tired.

Both the kids came unraveled as we left the clinic.  When Shelbie was taken away for a test, Sam said, "MOM!! This sounds serious!  What does this mean?  It's worse than just a hole in my heart!  They said I have holes in my lungs!!"

What do you say to that?  What?

Well, I said, "Sam.  What it means is that you carry on living your life the way you've always lived your life!  Get out there and do something great!  Make a difference.  Inspire yourself, inspire someone else.  Get busy doing good things with your life.  That's what it means!"

For now...that's all it means.   Now, we just have to believe it enough to do it.



Photobucket

No comments:

Post a Comment