This word I like... We architect our life...
A song, a sigh... developing words that linger...
Through fields of green, through open eyes... It's for us to see.
Interanimate: To animate or inspire mutually

Friday, July 4, 2008

Day +177 Independence, Birthday, Overreacting

Happy Independence day! I hope everyone had a great day!

I wanted to let you know that yesterday was Dylan's 18th birthday. We have a new man in the house. We did whatever he wanted, which was to see a movie, eat out, and open presents with his family. Next weekend we will have a back yard party for him with his friends. Dylan is rapidly approaching 6 feet in height. His shoe size is bigger than mine and he has more hair on his legs than me. I still have him beat in hat size though! He is a senior in high school this year and has a real positive attitude about learning and education. He has been a wonderful help and inspiration to me this year. Good kid!

Yesterday I was happy to be able to report actual medical data on my progress. Going a month between doctor visits means that, if I am to post more than once a month, I have to write about the more subjective aspects of my recovery. One day I may collect enough of my thoughts to write something coherent about my 'mental' journey covering the past 6 months. Some of you have asked about this. However, I know such a post will be a great opportunity for me to ramble so I'm putting it off until I can compress into something of reasonable content and size.

Regarding 'overreacting', since yesterday I have been trying to find the right analogy for explaining the overreaction of a new immune system to a minor injury like a sunburn. So here it is. Imagine a convoy of heavily armed Blackwater contractors traveling through a busy marketplace in Sadr City and a firecracker goes off next to one of their vehicles... Yikes! I'll be staying in the shade!

Thursday, July 3, 2008

Day +176 Good Numbers, Phlebotomy

All my blood line counts are up from last month! See the blog page. Even my white cell counts are up a tenth. At today's appointment Dr. Andrey said the whites always come up slower because T-cells have to get 'educated' by the lymphatic system, Lymphatic U., so to speak. Dr. Andrey was very positive about my progress. He did say, for the first time, that he thinks I am definitely experiencing some minor, chronic, GVHD symptoms. These are: dry eyes, dry mouth, some facial rash, and some skin itching (without rashes). This means he wants to keep me on Tacrolimus for the time being. Supposedly, if I were not taking Tacrolimus, these GVHD symptoms would be more pronounced. These kind of symptoms generally disappear as the new immune system becomes accustomed to it's new surroundings. So I am to drink lots of fluids, use the 'Tears II' solution in my eyes from time to time, and occasionally employ the bamboo back scratcher that I obtained in a tropical drink years ago in Waikiki. The GVHD symptoms are very minor so I feel very lucky. However, even light symptoms are considered a problem because it does not take much to cause the new immune system to overreact in unpredictable ways. That is the reason SCT patients are told to stay out of the sun. A common sunburn can cause the new immune system to go bonkers, to start mistaking good skin cells for alien invaders. It's kind of a a tight rope for the first year after a SCT. The new immune system is kept mellow by the Tacrolimus and eventually learns to discern friends from foes on it's own.
My Ferritin level tested out at 3132 ng/mL. Normal range is 10 to 291. All those blood transfusions the last 2 years loaded up my system with iron (Fe). The body has no way of getting rid of iron once it enters the vascular system. The excess iron gets stored in places where it doesnt belong, eventually damaging organs. With my newly functioning red blood cell system able to make lots of blood now, the way they get rid of excess iron is to perform a phlebotomy, not to be confused with 'lobotomy' where they snip the connection between the prefrontal cortex and the rest of the brain. In the phlebotomy procedure a nurse inserts a needle into a vein in your arm and drains a quantity of blood. Starting today I will have this done weekly for around 16 weeks. Each pint of blood removed will eliminate 1/4 gram of iron. The blood, of course, is useless and cannot be donated. It is thrown away. How strange. I went from needing blood for 2 years to now needing to get rid of it. In 16 weeks I should lose around 4 grams of iron, bringing my Ferritin level down to normal. The 1 pint drained each week represents only about 6% of my circulating blood, so I will only feel slightly fatigued during the period. Not to worry, I am used to feeling much more fatigued because of the chronic anemia I experienced for more than 2 years.
With all your help and support I will continue to try to beat the odds and stick around a while longer! Thank You!