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Come out today for the Second Annual Kiting Tampa Bay kite festival on Treasure Island, Fl
For more information visit WWW.KITINGTAMPABAY.COM
It's about 12:30 am. I'm bleeding heavily and have to rush to the Direct Referral Center (DRC) at Moffitt Cancer Center. I'm panicked, there's a lot of blood. My platelets are low, and I could be bleeding internally faster than I'm bleeding externally. More updates Later.
My platelet's fell far. Bleeding hasn't stopped. I'm lucky that the staff in the DRC were on the ball. They gave me a total of 16 unit's of platelet's and two unit's of Packed Red Cells to help replenish the blood that's been lost. It's going to be a waiting game now to see what happens, but it's 4am now and I'm exhausted and must sleep. Goodnight my friends, I hope to speak to you again soon.
BMT clinic visit with Dr. Perez
Right now we are waiting to see the doctor about a possible kidney infection that could cause a delay in my transplant.
Post Visit: I have been scheduled to have a procedure done the week of the 21'st to have my kidneys and bladder scoped. That sounds about as fun as letting someone poor honey over me and releasing killer bees nearby.
I suppose it's just another bridge I have to cross to get to the ultimate goal of transplant. Besides, a kidney infection would kill me after my chemo and radiation. Let's not take any chances with that shall we?
Today we received some bad news...
Today Dr. Tomlin confirmed the suspicions of the staff at The National Institute of Health (NIH) in Bethesda, MD, that I have a very rare underlying genetic abnormality called TELOMERE DISEASE. This strange and highly rare disease duplicates your Telomere's at a rate of 2x-?x, which determine how fast you age by duplicating down to Zero, which is when you die. This disease is also known to cause Aplastic Anemia, Pulmonary Fibrosis, and brain damage. The NIH has recently started a study on those who have Telomere Disease, and I will most likely be participating as long as another complication doesn't stop me from doing so.
Dr. Tomlin informed me that compared to a normal 30 year old man, which I am 30, but not normal :-), my Telomere Length Was Substantially lower. That means that my Telomere's are duplicating much faster than they should. Depending on how quickly they are loosing genetics and getting closer to the end of their 0 day. Soon, as my Telomere's are counted correctly, I will know the approximate date of my death, Day 0.
Here's a better way to phrase it from Wikipedia "DNA sequences are lost every time a cell/DNA replicates until the loss reaches a critical level, at which point cell division ends." CODE: When cell division ends, anyone with the disease just ceases to live. Just like that... the clock runs out. It makes you want to switch to a whole foods and healthier diet, doesn't it?
So now we just have to wait and see what affect this is going to have on how my doctor's at Moffitt continue with my transplant. I'm assuming my Head of Transplant Team, Dr. Perez, can find a solution, or figure out what complications could be caused and work around them. Only time will tell. My next appointment with her at Moffitt is October 25,2012.
Unless something happens in the mean time... I'll write more then...
Sometimes there just seems like no end to the suffering some of us have to bear. But I would rather bear it myself, than a child, or a pregnant mother, or someone who it might just be too overwhelming for them to handle. I know I can handle it, no matter the end. I've been through all this before. I'll keep fighting until my last Telomere burns off in a single flick of God's mighty finger, and I'll be released from this human body to wander the galaxy as something other than human, but a spirit indeed.
My day started off this morning at 6:00 am ET, which you can tell I wasn't too happy with. However, it had to happen. Brook and I went to the Moffitt Cancer Center and arrived in the Bone Marrow Transplant clinic. Let's see what my blood results are for today? Crappy. Crappy Crappy & Crappier. So my physician ordered 8 units of platelets to bring my counts up from 11k to 96k. The reason for all this you may ask? Teeth. I have several teeth that have been damaged by different medications, my long lasting anemia, and from erosion from my more frequent bouts of trying to set some sort of record for most vomitous person of the year.
Today I'm getting three teeth pulled, with more to come on Friday. Why you may ask? Because in order to be completely safe and ensure that no infections could enter my blood stream through cracked or badly eroded teeth, any tooth that looks like it might cause problems must be pulled to reduce my risk of infection during my BMT. There's no other ways around it. If I got a tooth infection while my immune system was destroyed, I would die in a matter of hours. It's just not worth the risk.
After my dental appointment, I didn't want to do anything but sleep, so that's what I am doing. Goodnight!
Jeremiah Ilges - 15 Years of suffering with Aplastic Anemia - A Medical Trial and Tribulation culminating into a final fight for survival and a war against the healthcare crisis in America