Wednesday, January 7, 2015

Better than fiction

Are you getting sick of the drama from over here?

I am.  I am so sick of the chaos and drama.  Sick.  It has completely consumed every day, every thought, every thing.

First thing Monday, I called our Pulmonologist to get him to weigh in on Sam's bubble echo study.  Of course, I already had the report but I needed him to tell me so we could get the next test scheduled.

I was floored when the nurse called to tell me that Sam's test was "100% Normal."

"Really?" I asked. "100% Normal?  I have a copy of the report right in front of me and it is far from 100% normal.  His heart is riddled with abnormalities.  How is that normal?"

"You have a copy of the report?"

"Yes.  I went and picked it up from the lab last week."

"Oh.  Well, I'm just relaying what the doctor told me."

"Well, that just doesn't make any sense."

She got pretty angry after that and asked, "What is it you want from us?"

Are you kidding me?  What kind of professional addresses a patient like that?

"What I want is to talk to the doctor himself."  I said in an actually kind tone.

Of course, I got the rigmarole that he's so busy, blah, blah, blah...

As soon as I hung up the phone, I called to our doctor in Seattle.  In ten minutes, I spoke to the doctor's head nurse and had a meeting set up between our Immunologist and Hematologist for this morning, Wednesday.  These are two of the most well know doctors in their field, highly respected and I get through to them in 10 min.

Our Seattle doc actually called me Tuesday night but I was at work and didn't hear it ring.

This morning, the pulmonologist called me.  Again, he said the test was normal.  Again, I questioned his definition of normal.  I will spare you the dialogue but basically he admitted that Sam's heart is not going in a good direction and yes, there are some problems but he felt that I worry too much about my kids and he didn't think I needed to worry about this.  Then he said, "Do you really want to put your son through this?"

Here's a news flash!!!  How about if you just let me decide what I will worry about and what I won't!  And let me worry about what Sam is going to go through!

Anger doesn't even come close to describing my feelings.  I asked about the increased pressure in his heart and he said, that yes, it was kind of serious and if it goes up just one more point then we have some real problems to deal with.

Nice, how we go from, 'this kid needs surgery asap' to 'everything is 100% normal' to 'one more point and we have some real problems'  Unbelievable!  I couldn't make this up if I tried!

He still refuses to give me a cardiac referral but did say that we need to follow him closely and repeat the tests in 6-12 months.

Later today, I was able to connect with Seattle and she said that this is not surprising really and the heart and lungs can be real serious issues for kids with DC.  She said that we really do need to do the additional testing to better define the abnormalities.  She even suggested that we come to Seattle next week and she will get us into a cardiologist and pulmonologist there.

I am not keen on winter driving and spending all that money, so we decided that I will try to get a referral from our family doctor and have a consultation with a cardiologist.  If he is not receptive then we will head out to Seattle as soon as possible.

While I'm feeling slightly better that someone finally listened to my concerns and we have a plan in place to follow up, I am saddened that our Doctor in Seattle said that things might start getting complicated.

Dyskeratosis Congenita is a disease of the telomeres.  The telomeres protect the chromosomes from getting damaged.  As the telomeres get shorter and shorter because of the disease, then organs begin to fail, cancer starts showing up and it can be very complex and complicated.

I really pray that we are just in a bumpy spot and this is not a true set back of disease.  I hope we have a few more good years before things really start deteriorating but, as always, we will continually try to keep our will aligned with God's.

Looking back to a month ago, I can't believe how quickly things went south.

The bottom line is, there may not be a solution to these heart problems.  They are pretty extensive, mild at this point so that's good.  Still...it's sad and disheartening.


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