Hey everyone... just a short message to say I am fighting hard. Things are going better at Moffitt and I am focusing on just getting better and eating, getting fluids balanced and getting healthier. Thanks for everyone's love and support. Everything you are doing to help us is overwhelming and I can't tell you how much we appreciate the prayers, thoughts, and energy. I miss seeing everyone, it's lonely in here sometimes, and the best thing to do is just stay positive and that's what I'm trying to do. Brook is always here to help and my three little babies are always a heavy motivation. I can't tell you what it's like to miss your kids so much, but I know once this transplant, and all related viruses are resolved, I will be able to see them and play with them like a healthy dad should.
I just want to say how much we really still need to the support of all our friends, family, and those in our circle of love, the geeks and the planners and designers and all of us guys and gals who love the tech! Thank you so much for anything and everything you are, and have been doing to help us. It's really rough sometimes, and thanks for letting us know we have your love and support. I hope to see all you guys and gals someday soon. Another Harry Brelsford bash in the future I'm sure! I love all you guys and gals. I'm keeping the fight on. Thanks for everything and for the great minds I have had the pleasure to meet and hope to meet someday soon.
Here's the medical scoop:
Transplant is now fully engrafted.
Fighting off Virus HPPV6 and BK. Dr's are giving me the strongest antibiotics on the planet I'm sure, but these viruses are rough to fight. It's a daily struggle, but it's going to be worth it someday.I just know it.
Thank you to my bone marrow donor, wherever you are. Thank you to my friends, and to everyone who is , and or will, help us, and I hope everyone has a great week.
Brook and Jeremiah waiting to see Dr. Lockhart at the Moffitt Genitourinary Oncology Clinic
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?
Three-dimensional molecular structure of a telomere (G-quadruplex).
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.
Human chromosomes (grey) capped by telomeres (white)
Today my wife and I traveled almost 1800 miles to visit the National Institute of Health in Bethesda, MD. We were invited to become part of a study based on a newly recognized genetic disorder called Telomere Disease. The NIH had scheduled us weeks in advance for a Bone Marrow Biopsy to look for signs that I might have Telomere Disease
When we first arrived, we were asked to step out of our vehicles while 4-6 guards searched our vehicle top to bottom inside and out. We watched this process as we were searched and then asked to verify our identity so we could be given a visitors pass. The facility was highly secure! At least I knew I wouldn't be getting a sneak attack by anyone the day we were there.
After we arrived, we waited and waited and were finally seen by a preliminary team of professionals, including Dr. Tomlin and Dr. Perez to discuss the disease, the way it can affect people, the signs and symptoms, and much else. The next step was then to take me upstairs for the Bone Marrow Biopsy. Brook and I both followed the nurse escorting us to the biopsy procedure area. Brook had decided to watch after much prodding from me, a decision I would later regret.
Once I was laying flat on my back, the smallest most petite woman in the room gives me local anesthetic and then starts abruptly pressing the drill into my bone on the right side of my hip. I was having an internal freakout. Not a normal freakout, but a major meltdown freakout. This tiny little Dr. could not manage to even get the needle started into the bone. She scraped, and pounded, and put all she had into twisting and turning, but did nothing more than make me want to escape. Finally after 15-20 minutes of grueling, intense, drilling, the main physician steps in and takes the needle from her and then he spends another 15 minutes getting down deep enough into my bone to collect a sample. Did you know that local anesthesia does nothing for the pain inside your bones? Well it doesn't. I felt every excruciating pain from the time that they entered the bone to the finish. By the end could see why they do such a thorough search for weapons... :-)
Then everyone who had gathered for the show dispersed and we were left alone getting sutured up. That was it. That was the big party we drove 1800 miles for? It was not the best visit to a Dr I've ever had. The Telomere research team was amazing and knew what they were doing. The Dr in training who weighed 90 pounds needs to realize that she's just not built to do a biopsy on a 200lb man, and the primary Dr. looking over her should have been intelligent enough to know that and spare me.
Just my opinion if anyone is listening...