IBD Commercial Contest

A Girl with Guts & CDSN Presents: The IBD Commercial Contest!

The IBD Commercial Contest is a video contest for those living with an IBD. If you’ve seen the current “Living with Crohn’s Disease” commercials odds are like most of the IBD community you find them annoying, depressing, and insulting. They are made by big pharmaceutical companies, and make living with Crohn’s seem like all patients deal with is fatigue and diarrhea.
The goal of this contest is to shine a light on what living with Crohn’s or another IBD (such as Ulcerative Colitis) is REALLY like! The videos can be funny, serious. musical, animated – anything you want to do (please no obscene language or sexual images/nudity). There is no minimum time length, but please do not make them longer then 60 seconds. After your video commercial is completed submit this application to either CrohnsDiseaseSN@gmail.com or agirlwithguts@gmail.com, and you will be given the login information for the You Tube Channel www.youtube.com/ibdcc2012 where people can watch and vote on your commercial.
The contest is going to span 45 days: March 8th – April 8th for creating/uploading, and April 9th – April 23rd for the voting process. This gives you 1 month to make and upload your commercial – and 2 weeks for the voting process. The general public will have an opportunity to vote (so let your friends/family know!), and a panel of five judges will make up the rest of the voting process.
The winning videos and creators will be featured on A Girl with Guts (www.agirlwithguts.tumblr.com), and The Crohn’s Disease Support Network –CDSN (www.crohnsdiseasesn.com).

PRIZES:
1st place will be awarded: a $30.00 Amazon Gift Card, a Crohn’s Disease/Ulcerative Colitis – IBD rubber bracelet, and a personal customized badge/graphic for your blog or website.
2nd place will be awarded: a $20.00 Amazon Gift Card, a Crohn’s Disease/Ulcerative Colitis – IBD rubber bracelet, and a personal customized badge/graphic for your blog or website.
3rd place will be awarded a $10.00 Amazon Gift Card, a Crohn’s Disease/Ulcerative Colitis – IBD rubber bracelet, and a personal customized badge/graphic for your blog or website.

This is your chance to put those awful commercials to shame – while spreading awareness at the same time!

Good-luck everyone and HAVE FUN!
Sara Ringer: A Girl with Guts Founder
Jason Leitman: CDSN Founder

Application:
IBD Commercial Contest Application:


Full Name: ____________________________________


Age (Must be 18 or older to participate): _________________


Contact Info: _______________________________


Website: __________________________________________


Location: _________________________________


Diagnosed IBD: ________________________________


Brief Description of Your Commercial:

....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

Thank You Dr Dortin!

OK it has been months since I have updated my blog ...mostly because I have been WAITING AND WAITING on doctors. After I got the results from the CT and Walking Test (which I posted under the previous post "Stomach and Liver and Lungs OH MY") I literally waited almost 6 weeks for the doctor who performed these tests to get back to me with what was next. She had mentioned doing a surgical biopsy but NEVER heard anything from her office about scheduling one. I even called and tried to find out what was going on but she never bothered to return a phone call.

This was RIDICULOUS so it was decided to forget her and see a new Pulmonologist. A very close friend of the family referred me to Dr J David Dortin. They got me in to see him rather fast and he was AMAZING. Showed up at the appointment and the day before he had spent around an hour doing research on my case - going through my record - and writing notes. When I met him for the first time I didn't have to spend time going over my past history; he already knew it! I was incredibly impressed by this - as no other doctor has ever done this before that I have seen. He spent an hour explaining things and going over what he wanted to do. Instead of repeating tests that previous doctors kept doing he ordered two tests I'd never had before.

One test was a lung test in nuclear medicine where I had to inhale this gas called Xenon through a mask while a machine imaged my lungs from every angle - 360 degrees! The machine then sucked out the gas from my lungs over 6 minutes so there was no residue (though I do have to carry a piece of paper in my wallet for 3 months because I can set off metal detectors lol - oh the things the body gets subjected to). After the gas was removed they inject a contrast directly in a vein called TC99-M and they took more images.

The second test I had that day was called a nuclear CT - it is exactly like a regular CT scan just using different contrast.

I returned to Dr Dortin today for the results. Well the results showed that the growths in my lungs had gotten worse. A thorough comparison was performed and the inflammation area in my right lung was noticeably worse. Since my body is so fragile right now do to my liver - a surgical biopsy can be somewhat dangerous. Dr Dortin is sending me to a specialist to do what is called an invasive bronchoscopy. I had a regular bronchoscopy done in November, 2011 and it was inconclusive. This hopefully will give some definitive answers w/o having to put my body through a surgical procedure. When I had my teeth extracted 3 weeks ago two of the sites didn't clot/stop bleeding for 24hrs - it would be a bad idea to do something more invasive right now.

I should have the date of the invasive bronch scheduled by the end of this week. Dr Dortin said if I had not heard anything from the specialist to call him, and he would personally call and have it taken care of! I LOVE THIS DOCTOR!!!

In the mean time I am still on oxygen 24/7 and waiting .... ALSO until it is resolved exactly what is going on in my lungs there is no way the transplant team will even consider a transplant. Since my immune system will be compromised after the transplant there is a potential that what is in my lungs could become fatal with an extremely compromised immune system. I am just glad that they are FINALLY being very proactive and not sitting on their asses.

Well that is what has been going on .... I want to thank everyone who is following my blog and takes the time to read it! I hope you are all well - and 2012 is treating you right.

Post to come Tuesday!

UPDATE: I decided to postpone the post. I see my doctor on Tuesday and I will have test results. I figured it makes sense to post then instead of posting today - when I will have more answers on Tuesday!

This is lame ...but I promise to write a post this weekend!!!! So here is a post promising a post haha =P

Stomach, Liver, and Lungs - OH MY!

My name is Jason Leitman I am 31yrs old from Cincinnati, OH. I have been living with Crohn's Disease for just over 26yrs now, and unfortunately recently a year ago found out I am in end stage liver failure.

I contracted hepatitis B sometime over the last 3yrs - the kicker being docs are almost positive it's from one of the many hospital stays/surgeries I've had; it only takes one person to not follow protocol and break the sterile field. I was put on the medication Humira to treat Crohn's (no one - including myself knowing I had hep b) and the combination of the two caused liver failure and extensive cirrhosis. I had surgery in Aug, 2010 to remove scar tissue and adhesion's in my bowel from past resections - and between the recovery, anesthesia, and medications (mostly for pain) it was the icing (or should I say Ascities) on the cake. I filled up with so much fluid called Ascities (bacterial filled nasty fluid that normally gets filtered by the liver, but when it fails builds up in the bowel) and my incision ripped....and the fluid was spraying out of me. I was rushed to the hospital where a paracentisis (they take a large boar needle and insert it into the bowel...hook up to suction and drain what they can) removed they remaining fluid (there was just about 2.5 liters of fluid left that time...after spraying out easily 3 liters).

I was in the hospital for 32 days, and they worked me up figuring out what was going on - finding the failure, cirrhosis, portal hypertension (hypertension of the portal vein in the liver), and a pulmonary condition called Hepatopulminary syndrome (broadening of the veins in the lungs making it hard to breathe).I wear 2.5 liters of oxygen 24/7 until after transplant (will take a year for the lungs to go back to normal).

Unfortunately I need a full liver - so have to wait until a match is found from a recently deceased person. The transplant team I am working with at The University of Cincinnati has been incredible. I refuse to give up, roll over and just let this get the best of me. I will fight until I have nothing left into me. The support from people on The Crohn's Disease Support Network - CDSN, friends, family, and new friends I've met on twitter have all been amazingly remarkable.

The non profit Warm Giving has commissioned two stunning necklaces from Rachel Miriam - a jeweler to help pay for the cost of post transplant that medicare/medicaid won't pick up (one is made of a light blue Chalcedony stone Necklace 1, and the other emerald quartz necklace 2 with a 14k gold chunk chain. and the other emerald quartz necklace 2 with a 14k gold chunk chain. Lastly another designer Marcia Moran designed these beautiful Earrings. They are also organizing a benefit dinner this winter in Los Angeles - I am beyond grateful (and extremely humbled).

While being worked up for listing - they ran what is called a high resolution CT scan of my heart to get a calcium score (they put you through a BATTERY of tests from MANY different departments to make sure the body can handle such a major surgery. After heart - liver is the most serious type of transplant). During the scan fortunately they caught a portion of my right lung in the imaging. The kicker is ...they found something called Tree and Bud Pattern Growth. This could be many thing from a fungal infection, viral, bacterial, pulmonary disease, or the worst cancer. They had me meet with a pulmonologist pretty much immediately, and they are working on getting o the bottom of what is going on. They seemed to have ruled out fungal, bacterial, and viral ...so hopefully it is just a pulmonary disease; there is a LONG LIST of diseases which can cause the growths. Here are some pictures of my lungs with arrows pointing to the tree and bud and nodules/masses. The nodules are the round spots and are 4-6mm in diameter.
Until they get to the bottom of what is at the bottom of what is growing they can't transplant me out of potential dangers. WELL that is everything going on right now ... Thanks everyone who takes the time to read this...and even respond. Like I said I refuse to give up ..I WILL keep on fighting.

UPDATE:
I had a walking test done - and finally got the results. Here are photos of what it showed, and the report from the doctor - here are the results:

They strap sensors to my wrist, and forehead then took me off oxygen. I walked from 1 cone to another. Where it says SP02 is the percentage of oxygen in my blood. Normal is 98% or higher; I got down to 81% and they had to add 4 liters of oxygen to continue. I still never got to normal. If anyone doesn't understand the "requires 4L of 02 to maintain 02 sats of 88%" means with 4 liters of constant oxygen the highest avg I got to was 88% oxygen in my blood. That is a fair amount of oxygen .... and still at 88. When 98% or higher is normal.

VERY short update

Well ....I travel to Indianapolis today for my first meeting with the Liver transplant team tomorrow morning at Indiana University. I am rather excited and anxious ....but moving forward in some aspect is wonderful. I've somewhat felt I've been in Limbo; so this is nice. As soon as I know information I will update. I should get a lot of answers and make some progress towards getting a new liver tomorrow. Wish me luck! I hope you are all well - Jason