Marfan Syndrome


I have mentioned it before.....Marfan Syndrome. Hubby was diagnosed in the mid-70s as a child and, for the most part, hasnt had many serious issues related to Marfan's. Well, there was the mitral valve prolapse that he lives with and the staph infection on his heart during college and I shouldn't forget the aortic dissection almost 4 years ago.

And now, retinal detachment.

For the past few weeks, Hubby has been complaining that the vision in his right eye was getting worse. At first, we thought it was that he needed a new prescription so he made an appointment at the optometrist and told them he had Marfan Syndrome. Retinal detachment is more common in Marfan patients than in the normal population so it was a concern from the begiining (so it cataracts but since Hubby's lenses were removed, no risk there for him!). Well, 5 weeks later when the doctor finally had an appointment open, the diagnosis is a retina that is hanging on by a small section. The spaces created from the detached areas are full of cysts.

Surgery is scheduled for Thursday morning. Out of work for at least a week and driving is still TBD (though he says he will be able to drive just fine after surgery!).

My biggest fear (and I think his as well) is the risks of this particular surgery. The doctor, who has done surgery on Marfan patients many times, is a good doc. He is experienced, confident, and seems to be pretty detailed. However, there is no way to tell at this point, until the doctor is in surgery, if he can save the vision in Hubby's right eye. That is my fear; that I will be sitting in the waiting room, flipping through magazines when the doc comes out to tell me he couldnt save the vision. Sure, you have 2 eyes but I just cant imagine only seeing out of one side of your head! What life changes will we have to make? What does it mean long term for his other eye?

Again, so many questions and so few answers.


Bri said...

Sending good vibes - good vibes - good vibes ~~~~~~

What's a little thing like eye surgery when you've been through heart surgery?!?!

We love you "Hubby"!!!

Melissa said...

That is scary. I will be thinking good thoughts for you both.

-L said...

We heard about this last night. I will be thinking good thoughts! And if you need someone to sit in the waiting room with you on Thursday PLEASE let me know. I'll sneak out of work for a few hours.

Bri said...

Just another note - the pirate trend is H.O.T. this year - Bill could pull off the pirate eye patch thing!


kbfixit said...

We're all pulling for you. Let us know if there's anything we can do.

- kb

KatieJoeandGrace said...

I'm sure everything went fine, but let us know! I'll be praying for him, for all of you!