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...

Ever since my ATG Cyclosporine therapy in 1999 when my treatment nurse accidentally overdosed me on Prednisone Steroids (Gave me 1000 mg over 1 hour instead of 100 mg over 10 hours) I developed Avascular Necrosis in both my hips, and also had some cirrhosis in my liver. In order to be cleared for transplant, all my organs needed to be checked for fitness. 

Today in the time just after noon, a surgeon entered my neck and ran a probe down into my jugular and then into the main artery headed to my liver. Once in the liver they performed a biopsy from different locations in the liver, and then closed me up. 

GOOD News! My liver cirrhosis that I have been living with for over 10 years now, was not present in any of the liver biopsy samples. Thank you Juice Plus for that win!

My liver is now cleared and we can proceed testing the rest of my organs!

On the agenda for today?

An ultrasound test of my kidneys, liver, and heart.

Once we arrived at the hospital, all I remember is being stuck to myself everywhere by a slick blue gooeyness. The Ultrasound of my liver and kidneys went great. No signs of issues, and now we can check those of our list of obstacles in getting my transplant on time. 

My Echo, or EKG, was no big deal and showed that my heart is big, but now swollen, and operating normally with a small amount of backflow. I guess you'll have that from time to time.