John's Update

Several people have asked me how John is doing or what the full story is, so for those of you who have not heard, here it is:

In April, John was diagnosed with a really rare blood disorder called TTP...only 4 out of a million people get it, and they don't even know how you get it. They have seen cases in people who have just gotten over a bad infection, but other than that, they don't know why it starts. It causes your body to basically attack itself, decreasing the number of platelets you have in your blood, so you can begin to have spontaneous internal bleeding, neurological problems, and eventually death if untreated.

Thank goodness, I think we caught John's early. About 30 years ago, this disease was 90% fatal, but then they discovered a treatment called plasma pheresis, where they hook you up to a machine that takes out all your blood and separates out the plasma and gives you new, donor plasma, and now it is 90% curable. The plasma contains all the damaged blood cells that cause the problems.

Anyway, we were fighting for 7 months to get John well. We were driving down to Emory Hospital in Atlanta for treatment. They started him out with plasma pheresis because his platelets were 7,000. The average person has 150,000 - 450,000 platelets. He was having flu-like symptons, but without the cold...he had chills, fever, headaches, and achy skin. It helped his blood get back to normal, but then after a little while, his numbers began dropping again.

After trying the plasma pheresis about 15 times, we had to move on to a drug to try and fix his blood. It also did not work. Then, we tried plasma pheresis again, and he had bad reactions to it and could not continue it. Next, we tried Rituxan, and it finally worked! We had read really good things about it on the internet, and people who had it said it is a miracle drug....and it is!!

So, John is finally well after 7 months. He now goes to Emory every 3 weeks for follow-up bloodwork, just to make sure his blood is staying normal. There are two numbers that they check...platelets and LDH. As of last Friday, his LDH was normal for the first time in about 3 months!! So, that is great news. His platelets started getting normal after he finished his Rituxan treatments about a month ago.

Life is finally getting back to normal!! Now, I promise the rest of the posts will be fun and cheery...although, this does have a good ending to it. :)