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
-Lab visit's to check blood counts
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.
BMT clinic visit with Dr. Perez
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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