I Have Marfan Syndrome

The Today Show did a piece on using hormones for kids who are short -

People with Marfan are also using hormones so that their kids won't be too tall.

Now, as I've said before, each family has to make their own decisions on what to do about their kids having Marfan... it's just that we don't know what growth hormones will do down the line! Even in this piece, they say that it's only been used for about 20 years, so we don't really know the long term effects of using them.

I would think that injecting outside hormones would affect your pituitary gland, which controls the normal flow of growth hormone in your body. I would like to see people who took the growth hormones 20 years ago today... do they have children? And how are their children doing? Do they have wieght issues? How is their heart doing?

It is really hard for me to accept the introduction of growth hormone to help your children be "normal" stature.  Isn't dealing with the world with your deficiencies part of growing up?

My cardiologist has always wanted my blood pressure to be about 90/60... but it's pretty much stayed constant at about 110/70, which I have felt is fine, since my heart hardly ever raced or skipped beats.

My cardiologist wants it so low so that there is less pressure on my heart and on my aorta as the blood gushes through.  With less pressure there is less stretching... and with less stretching, there is less of a chance for a dissection (tear in the wall).

However, in the past 5 days or so (basically since Halloween), my heart has really been racing... and my left kidney has started to hurt.  So I took my blood pressure in one of those machines at the super market.

I sat down, and relaxed a little, read the directions on how to use it (put your arm in, press button... pray to god), and waited for the results.  It came up with 140/72.  I've never seen that pressure for me before, so I did it again, and got the same result.

Okay, that was a Supermarket machine.  So, the next day I had a Chiropractor appointment (not exact days here folks, trying to make it easy to write and read), and I asked him to take my blood pressure.  After being adjusted, and resting for a little, he came up with 135/72.  And he did it twice.

So, that afternoon I took it again at our local pharmacists - 137/75... and he took it from both arms.

Okay, now I call my cardiologist.

Here's the thing, or the few things - I am currently taking Losartan, which is supposed to be a blood pressure medication.
Maybe it's stress?  But I actually haven't felt as stressed as in previous months.
But, you just had a new baby, that's stressfull isn't it? - Hmm... am I deluding myself into thinking that I'm not stressed about that?  But I've been stressed before... however, I've never taken my blood pressure except at the doctor visits.

And then it's a spiral - becuase I get stressed about having high blood pressure, and then I get pains in my left arm and in my chest, and my heart starts to constantly skip beats... and then... sigh... who knows...

Maybe I should force myself to meditate?

I have a new daughter!

Guess this means that I'm going to have to modify the description of this site to have 2 daughters with possible Marfan Syndrome.

I am very happy to have another child. She has my wife's hair color, and eye color... and facial features... and she has my long fingers.