Wednesday, August 18, 2010

DMDer, the healthy one?

I just realized it was a year ago today that I last posted to this blog and nearly 2 years since I posted any original content. I think it is about time I started sharing again. A lot has happened since I last blogged from a change in nursing agencies to my starting classes through Liberty University online.

I have not had too many health changes in the last two years although there have been some. I now cannot eat much more than puréed foods. The foods I can eat without puréeing are soft foods like ice cream and cakes and other things. This is probably the biggest change.

Recently I have started to have edema/swelling in my left foot which given my weaker heart is obviously a concern. I had the same problem but not as severely about a year ago which was resolved by a change in blood pressure medication. Over the past several months I have had a little bit of dependent edema after sitting in my chair all day but it would go away by morning. Then about a month ago I had a lot of edema one night and it took at least a week to go away and even then it never completely left. And now I am writing this blog entry from my bed so I can have my feet elevated since a few hours after I got in my chair for the day my foot swelled up to the point where it was uncomfortable and my leg braces. I have an appointment with my cardiologist on Tuesday but will see if I can get in any earlier.

The biggest health changes going on are not even mine. Both of my parents have recently had their own problems. My mother recently had to have a pacemaker/defibrillator implanted. She couldn't breathe one morning and went to the emergency room. To make a long story short they found out she has a low ejection fraction of 15 which is extremely low (I have a low ejection fraction of 19).

After some investigating and a $8000 genetic blood workup come to find out the reason she is having these problems is from being a carrier of Duchenne Muscular Dystrophy. It is extremely rare but it can happen where the carrier will have the same or at least a similar deficiency in the production of the protein dystrophin as the person who actually has the disease.

Then this month my father was complaining about dizziness and just didn't feel right. So he went to the hospital and they discovered he had about four spots of blockage in his arteries. So they put in 2 long stints to correct the problem and he feels 100% better and seems to have more energy (not sure if that is a good thing or a bad thing :-)).

Who would have thought the one with muscular dystrophy and on a ventilator would be the healthy one in the family. I wish my returning blog post would have been a little lighter in content but such is life at times. The good news is all of this has happened with God and our lives. I honestly don't know how we would handle it otherwise. I hope to start blogging more regularly in the future. Stay tuned.

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