Wednesday, February 29, 2012

....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

Thursday, February 16, 2012

Two Good Doctors In A Row AND An Award...Am I Dreaming?

I have to say I've never had much luck with doctors - so the fact I've had two great doctors in a row now is really refreshing! I saw the specialist Dr Dortin wanted me to see. His name is Dr Sadia Benzaquen at The University of Cincinnati Pulmonary Department. He is a specialist in his field, and recently moved to Cincinnati after years of working in Chicago. He happens to be the only doctor in Cincinnati that does an invasive bronchoscopy - the test Dr Dortin wanted me to have. This involves being put to sleep while a scope is inserted into the lung to look around. They also use other devices such as a tiny ultrasound machine to get precise medium sized biopsies of the lung. These biopsies are larger then a regular biopsy - but not as large as a surgical biopsy. The whole procedure took 20-30mins and was very successful. The point of this was to rule out definitively any infection in the lung (viral, bacterial, or fungal) that would prevent the liver transplant from happening. If there was something growing in my lungs and they do the transplant - which requires strong immune suppressants after the surgery to prevent organ rejection - there would be virtually nothing to prevent the infection from spreading dangerously, possibly leading to fatal results.

A week after the procedure I met with the specialist to go over everything. As he suspected, and stressed this during the first visit, he STRONGLY felt that what they are seeing in the CT scan was not causing my desaturation/hypoxemia requiring the use of constant use of oxygen. He stressed repeatedly that (like the other doctors have suspected) I have Hepatopulmonary Syndrome. I have all the symptoms and characteristics of the syndrome - and actually found out that in 10% of the patients they have problems locating/seeing a shunt (a big indicator of the syndrome). Hepatopulmonary Syndrome is a relatively new syndrome in the medical community over the last 15yrs - which causes a broadening of the veins in the lungs. This broadening causes tightness, shortness of breath, desaturation/hypoxemia. The only treatment being the use of oxygen - while the only cure is a liver transplant. The syndrome is caused by cirrhosis and liver failure - both of which I have. Ironically they think the Crohn's Disease is causing the issues they are seeing in my lungs (something rare that can occur with Crohn's patients), but has been documented and proven. Due to the liver failure I am extremely limited medication wise as a lot of the medications have an effect on the liver. I can only take Pentasa/Asacol for the Crohn's - which unfortunately does nothing for me. Therefore the Crohn's kinda as free run of my body right now, but this would not cause the breathing issues I am experiencing.

Another great thing is he had no issues writing a report to the transplant team with his diagnosis of Hepatopulmonary Syndrome! This is a big deal because the way transplants work is by a score called MELD (Model for End-Stage Liver Disease). There are certain exceptions the transplant team can ask for from UNOS (United Network for Organ Sharing) when listing someone for an organ - one being Hepatopulmonary Syndrome. This would take my MELD score up to a 22 (the MELD range goes from 6-40) - a 22 would mean a new organ in under a year which is rather fast when it comes to waiting for a whole new organ. To help get the score of 22 the transplant team requested that the shunt tests be performed YET AGAIN - which can only help if they can see one (sometimes they are incredibly tiny so it can take a few times, and the right set of eyes). On the 23rd I return to University of Cincinnati for (another) 10min walking test, a lung perfusion scan, an echo-cardiogram with bubble study, and a pulmonary shunt study. NONE of these tests are invasive so it's really no skin off my back - and if they can finally see a damn shunt it would only help. I return to the doctor on the 29th (happy leap year) to go over the results of these tests before I return to the transplant team on March 6th.
That is where things stand right now regarding transplant. I really hope that the transplant team is able to list me with no issues from UNOS regarding the diagnosis with no shunt. All I can do is wait, and think positively that they will so everything can progress at a faster rate then it has been. I've already been waiting long BUT I refuse to give up hope.
On an exciting separate note January 31st I found out some incredibly exciting and humbling news. I found out in December I had been nominated for a 1st annual WEGO Health Activist Award in the category of Health Activist Hero for 2011. This was such an honor - and I truly mean that. Just being recognized by the health community, and my peers was amazing - I honestly never thought I had an actual chance in hell of winning. WELL ..... (to my complete shock) I won! I couldn't believe it ...(and still can't haha). I want to thank everyone who nominated me in the first place - and a BIG thanks to everyone at WEGO Health! They are an amazing organization that empowers and works with the top 10% of Health Activists to work on bettering health activism on a global scale. There is more information at the bottom of my blog (a badge and a 30 second video they produced for the awards presentation). I hope I can continue to help others - and live up to the title they so generously have honored me with.

Even through all this frustration of the transplant experience .... GOOD THINGS can (and have) happened. I hope everyone is well, and the first 1.5 months of 2012 have been good. If you are still awake after reading this - I give you props! haha. That's all for now! Till next time ... J