....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

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

It's been some time ...

Hi everyone sorry I haven't written an update in some time. I hope that everyone had a nice remaining winter - even though it still feels like winter in some areas - I'm glad spring is here!

I wanted to start off by thanking the website http://www.nursingschools.net/blog/2011/05/the-40-best-blogs-for-crohns-support for featuring this blog in their top 40. I mentioned to the site that it truly is a humbling honor to be recognized with the 39 other blogs/resources. It inspired me to give an update ... also it's 7:00am and I maybe got 3 hours of sleep.

A general update: Switched hepatology doctors this past month. The doctor who diagnosed me and, became my doctor just because I was in the hospital he happened to be on rounds. He was incredibly frustrating in he never gave answers or explanations to many issues going on with my body. All my father and I could really get out of him was that my viral load was going down (which is great btw in the hep b area). After my last hospital trip - which was futile - enough was enough. Through recommendations met with a new doctor and so far things are going well.

My liver function is the big issue right now. The new doctor took blood work, and I'm sure is going to run some tests to see what state the cirrhosis is in and if its spread. I have been having a lot of issues with edema (retaining fluid) causing my legs and stomach to swell. It's gotten to the point where my feet are very numb, it's challenging to walk, drive, and other activities because it creepily feels like I have no feet. I also have an amazing appreciation for pregnant woman as my belly is very distended and hard. I still can't believe it can stretch as much as it has! I've also started experiencing confusion, shaking of the body ...sometimes to the point you would think I am shivering after jumping into an ice cold lake yet I'm not cold, hard to eat cause I feel so full from all the fluid, dizziness, and nausea/vomiting. We'll see what this new doc has up his sleeve.

I had a port-a-cath (great info on wikipedia with images)installed on Thursday April 28th. For those who don't know a port-a-cath is a somewhat permanent central line. It is implanted under the skin (normally below the collarbone) and is accessible for IV usage, blood draws, CT contrast - etc. I have horrible time getting an IV and blood draws due to my veins being very small and overused through the years. The port can stay in for over 5 years, and I can't even feel it's there - truly amazing.

Crohn's disease wise apparently the last upper scope showed a reddening and thickening of the stomach lining. A lower scope showed the same reddening and thickening in my colon. Since having the scar tissue and adhesion's removed in August 2010 has really made an improvement for the most part in the Crohn's area - just need to get this damn liver under control. CDSN is doing well! We celebrated 1.5yrs on March 24th, 2010 and as of today have 1,138 members. I still can't believe how it is growing, and the kickass people who make up the community.

Alright this is much longer then I had anticipated so going to cut it off. I hope all are well, and a big thanks to those who take the time to read my tiny corner of the interweb =P

All my best,
J

My Thoughts - An Update

Hi! I haven't written a blog in a few weeks now. I've been preparing gathering medical records and what not for my appointment with my new GI on Feb 8th. I am optimistic about seeing him, as he comes highly recommended from my counselor/social worker.

My health has been it's ever joyful Crohn's joy - HA. I have to say though, being off Humira has actually helped me in feeling back to "normal" for me. The dehydration issues I was having are gone - as is the insomnia. Dehydration was causing other fun complications - which have all passed. I am always feel run down, but on Humira I felt even more so. I am a firm believer though that just because a medicine doesn't work for ONE person - doesn't mean it's a bad medicine. For all those taking Humira - I don't think it's a bad drug ...just wasn't right for me.

CDSN everyday amazes me! From the members and their stories, the content being shared - the pictures and videos, the support being offered from one member to the next. My hope for CDSN is becoming a reality - to aid people whose lives have been effected by Crohn's and to spread as much awareness possible for Crohn's Disease and IBD in general. I know I've said it many times, but truly I am so humbled by the feedback, comments, and response that CDSN has generated. There are MILLIONS of websites - I never imagined people would find and respond so positively...THANK YOU! People helping people...education...awareness ...that IS CDSN and it wouldn't be what it is w/o all the members.

As 2010 continues I hope to continue with my goals of helping and awareness also to end the question "What is Crohn's Disease?" THE WORLD WILL KNOW! I have some very simple ideas for spreading awareness - the first being a Crohn's Disease "Trending Topic" day on Twitter. I will of course update when more information is laid out.

CDSN has reached 341 members in just over 4 months on January 24th, 2010. Crohn's Disease Support Network - CDSN
The CDSN FaceBook Group has reached almost 225 members!
Lastly, the CDSN Twitter Account @CrohnsDiseaseSN is just about to cross 1000 members!

THANK YOU EVERYONE FOR ALL THE CROHN'S DISEASE SUPPORT, AWARENESS, AND TAKING THE TIME TO READ MY BLOG :)

OK - I will stop rambling now - All my best to everyone, Jason