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Feeling better after getting my morning dose of packed red blood cells!
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.
Today was a very important visit with the head of my transplant team, Dr. Perez. We are going to go over the findings from my visit to the National Institute of Health (NIH) and talk about the schedule for my transplant in the next two weeks. We will also be getting news back about my visit to the Thorasic Oncologist, Dr. Kaszuba, and his findings concerning the state of my lungs. There is some concern because my Oxygen Transport level was much lower than expected. This means that for every breath I take, I'm only getting about 1/3 of the oxygen transferring into my blood vs. a healthy individual. I will edit this post after the visit.

Well, we got some more bad news today, which puts us on a losing streak for this week. Dr. Kaszuba confirmed that my lungs are not functional as normal because over the last few years I have developed Chronic Pulmonary Fibrosis. This would normally have put me off the BMT transplant list, but because I don't have any other treatment options, I agreed to go forward with significant risks. The chance that I will develop Graft-Versus-Host Disease in my lungs is now much higher than before. This is a deadly complication that can present itself within a few day, weeks, or even years, but you won't know until it's too late.Not the best news, but we're moving forward anyway.

The second bit of bad news was actually confirmed a few days before this visit, but we were waiting to find out more about the treatment options available. I have a very rare case of having a modified form of DNA called Telomere Disease. We now know that this underlying disease was most likely passed down from my biological father, who died at an early age of Pulmonary Fibrosis. Telomere disease was also a contributing factor in my eye's hemorrhaging and my liver developing cryogenic cirrhosis back in 2005. There is current only one treatment for Telomere Disease, and that involves the injection of a synthesized hormone called Telomerase. Telomerase helps actually repair Telomere's, and can also excite the DNA into growing NEW Telomeres. 

Ok, thanks for the science lesson right? Moving on....

Dr. Perez also informed us that there is a bit of a hold up getting in touch with my donor... this could be a SERIOUS issue if the donor backs out at the last second. Please don't sign up to be a donor just for your brother or nephew or whoever. Sign up to give bone marrow to anyone who needs it. At this point in my treatment, I either DO (get the transplant), or I DIE (which is not an option).
So if you have signed up to be a donor in the past, don't back out if someone needs you. You will literally save another life from having it's flame extinguished. Consider this: There's a gun cocked and loaded to the patients's head, and saying NO releases the trigger. Don't kill bone marrow patients by saying NO! Now I've said my peace on that. I'll keep everyone updated on this status for sure.

Now onto the next week:

We will be waiting to find out if the donor can be contacted and convinced to do the transplant. We have a whole week full of diagnostics and procedures to go through.

-Scope of Kidneys
-Endoscopy of stomach
-Blood Transfusions
-Dr. Visit's
-Lab visit's to check blood counts
X-Ray of a lungs with Pulmonary Fibrosis
Example of using Telomerase to Extend Telomere length
Start this clip at 14:32 to skip her boring story about a bike trip she took. This is a very descriptive presentation on Telomere's and aging, as well as the negative effects of loosing Telomerase. This is a long video, sorry.
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)
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!