Re: Keep me in mind
 

omigosh you sound wonderful! I am so happy that things are turning out so well for you. It's so amazing that your ailments prior to transfusion are gone..just like that...ain't science/medicine fabulous?
keep on truckin and let us know how things are...

Re: Keep me in mind
 

Keeping on keeping on.

Going home for a long weekend tomorrow and back to NYC on Sunday late.

Less than a month I get to go home to stay and continue to recover for another 9 months or so....

Get to watch the kids play softball tomorrow night. Last day of school. One of them officially pulled all A's for the year - something she set out to do. The other one had all A's and one B - always social studies. I don't think she likes that one....

Re: Keep me in mind
 

Oh, I have been remiss in keeping you posted.

Right after they sent me home (July11) I started to develop and awful headache. It turns out my toxoplasmosis, which generally affects the retina (which is why I have a blind eye) andfor which I am now generally on a medication to keep it from recurring, came back. I had to be off the preventative medication for a bit and it grabbed its opportunity. This time it settled in my brain, causing a load of pain and swelling of the brain that came close to killing me. BAck to the hospital in isolation for the two longest weeks of my life.

The good news is we are almost doen with the treatment and I'll go back on the preventative and they are optimistic about the future. And I'm back home.

Still heave months to go on teh blood front but things are doing what they are supposed to do.

Re: Keep me in mind
 

It has been such an incredibly long haul for you. I wish you nothing but the best from here on :)

Re: Keep me in mind
 

Being home will make a big difference - what a time you've had.
Take care and keep us posted..

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Hang in there man - we're all thinking of you...

Peace be with you,

Bill :)

Re: Keep me in mind
 

Well, this has been a long time coming, but here we go...

When we last left our hero he'd barely escaped the second hospital trip...

Well, the news is I'm back on the right medication to keep the toxoplasmosis at bay. For way more information than you need to know about this try http://www.theatlantic.com/magazine/...urce=FB1013_03

Meanwhile on the blood front news is generally good but one insanely frustrating exception. All your usual measures are goo - red cells, white cells, hemoglobin, platelets. The problem is my t cells and b cells. They are lagging way behind and these are what really runs the immune system. T cells detect things that shouldn't be there and somehow communicate this to the b cells which create the proper antigen. My b cells are low but getting there. My t cells are awful.

The result of all this is that 2-1/2 years down the road I'm still considered disabled (In January of 16 I'll go from disabled to Social Security but that's just a technicality. I'm out of the work force and bound to stay this way). I have a bunch of restrictions of which I follow most. Can't swim or walk in the woods. I'm supposed to have all meat cooked well but that's a terrible thing to do to beef.

All that said, I feel fine other than being bored silly. Never realized how much social activity went on at work. Out of about a dozen patients who were my circle of friends while recovering at Hope Lodge NYC for four months there are only three still standing. I'm close with the one and keep in touch with the other. I suspect I'll live to be an old Steve.

All of this I owe to a guy named Carl in Kiel, WI who got himself in the bone marrow data base and happened to be one of only 3 perfect matches in the world-wide data base. Have met him a couple of times and we stay in touch.

For any of you under 60 (leaves me out but they don't want mine anyway) go to marrow.org and they will send you a test kit - just a q tip to do a cheek swab with and send it back in the provided return box. The odds are 300-1 you'll never get called but if you do you can save a life. That's what Carl, who had been a complete stranger, did for me. I know there are more than 3 people with a 10 for 10 HLA (what they check for match compatibility) out there. They just aren't in the data bank.

And if called, they take stem cells NOT actual marrow!

There's more but that should be plenty for now.

Re: Keep me in mind
 

Hey, just an update. I'm still not quite to the goal of being 100% back but am rounding third and heading for home.

I'll know a little more in a week but I'm betting on around Christmas.

The only thing driving me nuts now is this is the fourth summer with not being allowed in the water. I live 5 miles from the ocean and the water is in the upper 70s. Were it not for the sharks and Portuguese Mans of Wars hanging out (which comes with the unusually warm water) I'd take my chances and not tell doc. But if the head to airlift me with a shark on my leg I don't think I could face doc....