....The Results Are In!

I saw the amazing Dr Benzaquen for my follow up appointment to discuss the results of the 4 procedures I had performed last week. After multiple Echo-Cardio Grams, 2 perfusion lung tests, 2 walking tests, and 2 pulmonary shunt tests the results came back .............................. POSITIVE! They FOUND the shunt they have been looking for! This officially diagnoses me with Hepatopulmonary Syndrome, and when I am listed for transplant the team will be able to ask for a MELD Score of 22 (out of 40); this means being much higher on the transplant waiting list. FINALLY after months of tests, procedures, waiting, FINALLY they got what they needed. I was so taken aback from the emotions I started crying; tears of joy.

I return to the transplant team on March 5th, 2012, and will finalize everything for them to go to UNOS and get me properly listed. I of course will give an update after my appointment with them. Thank you to EVERYONE for all the support I've been receiving. I truly can't thank everyone enough for the amazing amount of kindness.

One person I especially want to thank is Stacey Kohl (the founder of Warm Giving). Warm Giving recently added another necklace to their items! A stunning Iolite stone necklace designed by the phenomenal Rachel Miriam (who generously has designed and makes the CDSN Signature Bracelets). I am also thrilled for because the website Velvet Red TV has featured items on their site; including the Iolite stone necklace. This is exciting for CDSN and the Crohn's Disease community because it means some pretty big awareness. Velvet Red has a rather large outreach!

I also want to thank the most beautiful woman in all of Australia - the amazing Kelly Daroschak. For all those who don't know Kelly is an administrator for CDSN, and also my girlfriend - who I love dearly. Her constant support and understanding is beyond amazing. I truly am the luckiest guy in the world; she is astoundingly wonderful!

Well that really is all for now. I have some exciting projects in the works - one coming up very soon with Sara Ringer from A Girl With Guts! I can't wait to share it with everyone, we are almost done finalizing everything.

I hope everyone reading this is well, a BIG thanks to everyone who takes the time to read my ramblings ...I mean posts :) Till next time! - Jason

Dr Drops a Major Bomb ...

I saw my new doctor again this past Friday for a followup from blood-work, and my recent trip to the hospital. As we were talking my father brings up the question/topic again of a liver transplant - and his feelings. He said I need to start planning for one. he recommended 4 places where he has sent patients, and have had good experiences. He suggested: Indianapolis, Ohio State University, The Cleveland Clinic, and The Mayo Clinic. After deciding where I want to go, will need to travel there to be evaluated by the transplant team. They go by factors - one major being something called a MELD score. MELD stands for Model for End-Stage Liver Disease. Right now my MELD score is about 15/16, and anything over 20 is dangerous. Even if the hepatitis B viral load drops, the damage (cirrhosis) has been done.

Needless to say I am scared, overwhelmed, frustrated, and confused. What ever the future holds I have a long battle ahead of me - something I plan on fighting. I truly hope I have the strength.