Crohn's Support Network - CSN IS RELAUNCHING WITHIN THE NEXT COUPLE OF WEEKS!

In Autumn of 2009 I created an online support network for people, along with their loved ones, living with Crohn's Disease or another Inflammatory Bowel Disease (IBD). The reception was astonishing and we grew fast to have thousands of members from around the world!

You can join at the new address www.CrohnsSupportNetwork.com (CSN). JOINING IS FREE (we gratefully accept donations) BUT WE HAVE BEEN CLOSED TO NEW MEMBERS FOR SOME TIME! I AM EXTREMELY PLEASED TO ANNOUNCE WITHIN THE NEXT TWO WEEKS A REVAMPED CSN WILL BE OPEN TO THE MASSES!!

-Jason

An Update, a Return, and a THANK YOU!

Hello Everyone ...
I wanted to first off say thanks everyone for all the continued support, and kindness. It is the amazing people in my life (my amazing father, and incredible friends) who have helped keep me positive, and helped keep (if not increased) my strong drive to fight. Since discovering I was in end stage liver failure in Oct 2010 it has been a tough road of up's and down's. While being worked up for a liver transplant some issues, and eventually (finally) some diagnosis's happened. It became harder and harder to breathe so the doctors thought it was a syndrome related to liver failure. After many (MANY) procedures and tests it was discovered the nerve to my diaphragm (phrenic nerve ) was no longer working - causing a paralyzed diaphragm. This causes pressure on my lungs, and de-oxygenation from the diaphragm not allowing them to inflate properly. I am on constant oxygen along with an external breathing device called an AVAP machine. It pushes pressure into my body forcing the diaphragm up. It has a very delicate sensor in it that changes pressure depending on my breathing. I only have to use  it when I feel tight, short of breath, and always when I sleep. After three sleep studies the results were disturbing - showing I stopped breathing around 130 times a night. I was also never entering REM sleep causing extreme fatigue.
As time went by I started developing other symptoms of what seemed like nerve issues. I was getting contortions along with muscle seizures. They tested my leg which showed a great deal of abnormalities; an MRI was then performed of my lower back. The MRI showed an incredibly rare condition called Epidural Lipamatosis (EL). EL consists of many hard tissue masses which form in the body - but extremely rarely in the spinal region. The masses are crushing the nerves in my back from the T-12 (mid back) all the way down to my Thecal Sac (right where the spine ends at the hip/pelvis). Due to the nerve damage it became incredibly difficult to walk, since the nerves in my spine which control my legs can not support weight anymore w/o buckling. I have been wheel chair bound a few months now. I also moved into a wheel chair accessible apartment; something that has made my life much easier as I have access to everything.
The kicker unfortunately is due to the paralyzed diaphragm surgery of any kind is out of the picture. The transplant team and other doctors agree that being int-abated during surgery would lead to very bad results. I would either never have the tube removed, and in the case of the transplant not survive the surgery. I have been taking care of myself, and the doctors follow me closely via blood work and frequent check ups.
The time will eventually come where a serious decision will have to be made ...but I am nowhere near there right now. As I mentioned earlier I have good days and bad days ...but truly the good outweigh the bad. I refuse to roll over and give up which has helped keep me here. I am just grateful that through all of this I have some truly great experiences, and I know it could always be worse.
I have returned slowly to The Crohn's Disease Support Network (CDSN) on a regular basis...something I am very excited about. I also have been offered some truly amazing opportunities (more to come on this at a later date...once everything is cemented). It has been fantastic to return to CDSN! The warm responses have been incredibly humbling, sweet, kind, thoughtful and so much more!
I hope this message finds everyone well! I have rambled on for so long you probably all need a nap after reading this haha. Thank you again from every fiber in my body!
Always - Jason

What A Long Strange Trip It's Been ...

Hi everyone it's been a while since I've posted an update of what 's been going on. I hope everyone is doing well, and life is treating them right. In my last blog posted I mentioned an MRI of my lumbar indicated a rare condition called Epidural Lipomatosis. This is when masses form around the spine compressing it. In my case it is severely compressed from my T-12 down to my Thecal Sac (which is nearly completely compressed). The nerves are damaged to the point that the compression has effected the part of my spine that controls my leg muscles; my legs have become severely weakened and can no longer support weight. I have been wheelchair bound now for about 3-3.5 weeks. It was an incredibly fast change, but I am adjusting. It has actually made life easier because before the wheelchair I was using a walker, and basically dragging the lower half of my body. This was putting an immense amount of pressure on my back, and left foot - causing excruciating pain. The downside to all this is I need to now look for wheelchair accessible living. The condo I live in now I am restricted to the main floor - which only has one half bathroom. All the bedrooms and full baths are upstairs - while the washing/drying is downstairs. My dad and I are currently looking into places to live. On top of all that it just isn't safe where I am living now, plus my loved ones are concerned about my safety. My doctor also insisted on a nurse who comes to the house and monitors my health situations, since I have so many serious medical issues. I have also started physical therapy and occupational therapy so my muscles do not atrophy. It has been tough but the way I look at it is if I get better that would be amazing...if not then I adjust and life keeps moving forward; either way life must keep moving forward.

As far as the severe rigidity I was experiencing an Endocrinologist discovered my calcium levels were critically low, and my vitamin D was undetectable from a blood draw. Getting infusions and taking mega doses of supplements has incredibly helped. I hope to soon be on maintenance doses which I will probably be on forever. It is wonderful though to not feel like I am turning to stone. The muscle contortions and seizures though have continued. The doctors feels it is related to the nerve damage I have in my back, as most of the contortions are mostly lower body.

I know quite a few of you have been reaching out to people and asking how I am. I am incredibly touched and grateful - but please respect these people as they have a lot going on themselves. If anyone ever has any questions you can also always email me at CrohnsDiseaseSN@gmail.com It would greatly be appreciated if you take these methods instead of reaching out to others.

I can't think of anything else going on - but it definitely has been a long strange trip .... and my life has taken many changes in a short amount of time. I don't handle change well - so it has been challenging at times, but the support and outreach from many has absolutely made it a lot easier; I can't thank you all enough. I will update more as I reintegrate back into the normalcy of life, but it is going to be a slow process. I really am so grateful and wish everyone nothing but the best. More to come soon .... - J

The view from my hammock .... rough eh? :-P

How Can One Person Have So Many Medical Issues?

Well I have to say I'm very frustrated, a bit depressed, and honestly getting angry. As I broke down in my last blog of all the issues going on - yet another has popped up. I had am MRI of my lumbar (lower back) because of the findings the EMG indicated of my leg. The MRI definitively indicated a very rare disease called Epidural Lipomatosis (EL). EL is actually so rare there is hardly any info to be found on it via the internet. What is happening is a 1/4 of my spine (section T12 Vertebrae to Thecal Sac ) are masses of tumor like fatty tissue compressing the nerves and narrowing the Thecal Sac.  This is causing painful back pain, leg pain, and unfortunately weakness. The main treatment for this is spinal surgery - something I can't have due to my paralyzed diaphragm and liver failure. I see the neuro muscular doctor again on Tuesday May 21st, and then a spinal surgeon/specialist upon referral.

I truly am having a problem wrapping my head around all this. I just do not understand how ONE person can have so much fraking wrong with them; it seems like a big cosmic joke. My father and I are currently looking into an adjustable bed, a chair that rises up so I can get out of it, and home nursing care. I am also facing a motorized wheel chair, as the nerves and narrowing worsens from the masses. Eventually my legs will be so weak I won't be able to use them.

I know I've said it numerous times but thank you so much to everyone for the supportive, sweet, caring comments. The outpouring from people has truly been moving - and thoughtful. I will continue to make updates as I can. I say goodbye for now ... wishing everyone the best. -J

I Think The Right Word is RIDICULOUS!

Let me just start with thank you so much to everyone. The support I've received has been truly moving, and honestly a light during a kinda dark time. It all started with Crohn's Disease. As a lot of you know I've been dealing with Crohn's for 27yrs now. At some point during the last 4yrs I contracted Hepatitis B. - unknowing to myself and my GI at the time treating me. I had gone through most of the Crohn's meds at the time, and was put on Humira. A very important thing about Humira is - having Hepatitis B and being on Humira is BAD. The combo of the two caused my liver to fail and extensive Cirrhosis; a liver transplant was necessary. When you are a candidate for organ transplant they work you up from top to bottom. Any issues - even small ones - could become serious due to the surgery and medications...this was Oct 2010. For some reason I started developing breathing problems. It was incredibly difficult to take a breathe in. By May of 2011 I required Oxygen all the time. Initially it was assumed I had Hepatopulmonary Syndrome. - which is caused from the liver and cirrhosis. After countless tests and about eight months of basically wasted time, it turned out I DID NOT have Hepatopulmonary Syndrome! Fast forward to the last few months ... I had an EMG done of my diaphragm and found that the Phrenic Nerve which controls the diaphragm was fried ...dead ...fired its last brain message - it will never work again. Due to the diaphragm the prospect of a transplant went out the window. The reason transplant is not possible is they put a breathing tube in for surgery, and recovery. The doctors feel strongly that once the breathing tube is put in I would never come off of it...ever. Right now docs are monitoring my liver very closely, and crossing bridges when absolutely necessary.

I was referred to a neuro muscular specialist because the odds of the nerve issue being isolated to my phrenic nerve was very low. For some unknown reason I started getting extremely painful muscle contortions/seizures, double vision, and eventually rigidity. I literally felt as if I was turning to stone; any movement and wowzers did it hurt. The neuro muscular doctor ran an EMG of my leg, and took blood to check levels such as calcium, vitamin D, etc. The EMG findings fit best with Motor Neurone Disease or  Lumbosacral Radiculopathy.  I need an MRI of my spine...which is this Wednesday May 7th. The blood work was interesting - it showed my calcium was critically low, vitamin D was undetectable, severe anemia, and a specific hormone was extremely elevated (the normal range is 0-65 ...65 being high. Mine was 820 (the endocrinologist actually said she had never seen a number that high). The hormone that was elevated is called PTH. It happens to be created by 4 tiny glands inside the thyroid called Parathyroids. When calcium is out of wack the body they over produce the hormone PTH. Since my calcium was critically low I have what is called Primary Hyperparathyroidism. In 95% of cases surgery is done to remove the over active glands. BBBBBBBBBBBBBBBBBBBBBBBBBBBUT doctors are very hesitant to do ANY surgery on me because of the diaphragm. Along with the lovely low calcium I have osteoporosis along with renal-hypertension. Ridiculous isn't it?

To break it down:
1. Crohn's Disease
2. Liver Failure w/ Cirrhosis
3. Portal Hypertension
4. Hepatitis B
5 Primary Hyperparathyroidism
6. Renal Hypertension
7. Paralyzed Diaphragm
8. An undiagnosed neuro muscular disease (still running diagnostic testing)
9. Osteoporosis
10. Critical Vitamin Deficiencies
11. And a crack in the instep of my left foot

I am going to have to wrap this up for now - my hands are starting to cramp up. I wanted to touch base and let people know what is going on. and of course to thank the amazing support in my life! I would be completely lost and alone with out all the amazing loved ones. Regardless of what happens as well ...I won't stop fighting until I physically and mentally can't do it anymore ...and I don't see that happening anytime soon.

a VERY short update

Hi everyone - I saw the Neuro-Muscular specialist today; his name is Dr Robert W. Neel. I again got the luck of the draw - he is FANTASTIC. Not only was he incredibly thorough - but kind and compassionate. He genuinely wants to help, and figure out what is going on. He looked right in my eyes and said, "I am sorry this happened to you. I am going to do anything I can to help you, and work to improve your quality of life". I could tell he meant every single word.

First up is blood work, and getting me some comfort from the muscle spasms/contortions, and breathing issues. Working against the clock though as what ever the hell is going on it is progressing - fast. I will update more as I know things. A GINORMOUS thank you to Kelly and Patrick for taking care of CDSN, while being hugely supportive. Finally, thanks to all of you for the continued support and kindness ... it means more then any of you will ever know.

Where is Jason?

Well as a lot of you have noticed I've been kind of MIA from the wonderful world wide web. I have barely tweeted, posted a facebook update, or been active on CDSN. A lot has been going on, and I just haven't felt very social. I went to my liver transplant appointment to find out about listing, and the doctor explained why they aren't listing me. That is all I heard over and over as the doctor talked and explained why I wasn't being put on the organ transplant list. Apparently they didn't feel comfortable at the time with the Hepatopulmonary Syndrome diagnosis. I truly thought the doctors were full of shit. For at least half a year now, doctors have been telling me over and over that I have hepatopulminary syndrome - and the transplant doctors kept saying you don't. They sent me back to the pulmonary doctor to have yet another procedure. If I DIDN'T have hepatopulminary syndrome, and another issue, when they put the ventilator (breathing tube) in for the surgery (every patient has one)...that I would probably never come off of it. I was completely shocked! The procedure I had done is called a Pulmonary Function test. This showed how well and strong my lungs and respiratory system is - if it was not working right then I would be in serious trouble.

To my complete shock the procedure showed that in fact there were significant Neuromuscular abnormalities which the test flagged... and I DON'T have Hepatopulmonary Syndrome. Apparently my lungs were fantastic, but my diaphragm was not. It showed I had no trouble breathing out, but I couldn't breathe in because my diaphragm was only functioning around 21%. They set up a test called an EMG (similar to an EEG, EKG/ECG) but they stick an acupuncture type needle/probe into an area and listen to how well the nerves fired causing the area to properly work. The doctor put the probe into my abdominal muscle and I heard my muscle working, and nerves firing; I had no idea they could hear nerves and muscles working. The abdominal muscles sounded totally normal - which sounded a lot like static. The doctor stuck the needle into the diaphragm...nothing. It was pretty much completely silent; like someone turned the volume down. He told me to take in a deep breathe and it blipped maybe twice. Back in the abdominal muscle ...static - back in the diaphragm nothing. This essentially confirmed what the pulmonary function test indicated, a Neuromuscular disease (which there are 48 different kinds and which now has to be diagnosed.

Fortunately Cincinnati has the Neuro Muscular Institute - with some of the best doctors in the country. As soon has the doctor who performed the EMG filed his report the Institute would see me. I am very grateful that one of the doctors assistants is keeping an eye out for the report, and will call to get me scheduled as soon as it comes in.

I really am not one to be "whoa is me - life is terrible - person", and I am still not...but a part of me really just wonders how one person can have so much medical ailments hit them? From Crohn's Disease, to liver cirrhosis and failure, hepatitis B, and now a neuro muscular disease? The kicker really is - none of these are connected ... as in one caused the other. Yes - my liver got even more damaged because of the medication Humira and the combination of Humira ... but the Crohn's didn't cause either other issues.

I've been getting really bad muscle contractions and muscle seizures which are extremely painful. They've been in my legs, hip/back, and my hands. The spasms in my hand have made typing difficult. Besides just wanting not to discuss all this bullshit going on, the pain gets really bad when I get a muscle seizure. Thankfully they don't last long (90-180 secs, but I am talking 10/10 on the pain scale - and I virtually never say a 10.

That is what has been going on, and why I have been MIA lately. I really gotta thank Kelly and Patrick for taking care of CDSN. They have taken care of not just the site but the facebook group, and twitter account. I am a lucky guy to have them as administrators and friends, and even luckier to have Kelly in my life as someone I love very much.

I hope this answers a lot of peoples questions to what has been going on. I am very thankful and humbled by all the people who have asked if I am okay; it is very touching and helps a lot with keeping my spirits up. I am going to say goodnight, and sit back and relax. It's been a long day, and I need the rest. I hope everyone is well and life is treating them right. -J

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

Quick Update

Hi Everyone,
I wanted to write a real fast update! I am basically just waiting ... I switched liver doctors recently - because I was not happy with my old doctor. He would never answer questions, barely talk to me, and had the worst bed side manner. The new doctor I am seeing came highly recommended, and I really like him.

He has sent the paperwork out to Indiana University for the transplant evaluation team to contact me. I chose Indiana University (in Indianapolis, Indiana) because they are highly ranked among liver transplantation - and my doctor recommended them.

I've been in and out of the hospital a couple times since my last post do to fluid collection, and some breathing issues. It seems I've developed a syndrome in my lungs from the cirrhosis called Hepatopulmonary syndrome. This syndrome causes the veins of the lungs to broaden making it difficult for the lungs to fully expand. The only treatment for this is oxygen until after the transplant - the syndrome will(should) go away after.

That is where things stand ... I want to thank EVERYONE for all the incredible support and words of encouragement. They have helped more then anyone knows - they give me hope.

I hope this update finds everyone well (as can be) - and I'll write more soon! Jason

Here is a video from The Mayo Clinic discussing Hepatopulmonary syndrome

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.

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

Some info about me ...

Hello everyone! Just wanted to start off by thanking everyone who is apart of CDSN. I truly never imagined when creating this network, that people would actually find it. For years I lived my life with great friends, family - but never really knew anyone else with Crohn's Disease ...or other IBD's like UC.


I've had 4 abdominal surgeries, and over 20 rectal/anal surgeries from fistulas and abscesses. I was always sick starting around 4-5yrs old - but the doctors never knew what to look for. When I was 10 my appendix ruptured - the doctors thought this was the underlying issue the entire time. The reality being Crohn's destroyed my appendix. I was finally diagnosed in 1999 at age 19. I had my first resection in 2000 removing around 2ft, and recently had one to remove a large amount of bowel adhesion's in Aug of 2010. In between I had a fistula at the bottom of my belly button - which started leaking bowel fluid. Had to have my belly button tract removed in 2004 - called an umbilectomy. The 3 fistulas that caused 20-22 rectal/anal abscesses were finally removed in 2005. They couldn't remove them earlier (even with cipro and flagyl) because of constant infection. The abscesses were very deep - so I had to be put under for all of them while they were cut, drained, and packed.


Unfortunately it turns out I've been living with Hepatitis B for the last 2.5-3yrs - and no one knew. When I was on the Humira, it gave the hepatitis an opportunity to be more aggressive - and cause some serious damage. Since I went so long without treatment it is already in stage 3. This means a transplant is in my future. The disease has become chronic, and caused cirrhosis of the liver. Cirrhosis for those who don't know is damaged scar tissue that never regenerates. It can also be a source of bacteria and disease. My liver function is not great which causes my body to retain fluid. I've had 4 (soon to be 5) times a paracentisis - where they take a 14 gage needle and insert it into the abdomen and drain the fluid. The last time they drained 3.75 liters (each liter ways 1-1.5lbs). When they first diagnosed me in October of 2010 I was in the process of serious liver failure, and my right kidney was shutting down from the retained fluid. I was in the hospital for 8 days, released for 2 days and then had to return for 25 days! YES 25! Right now I'm not 100% sure what the future holds (but who really does?) ... I just plan to keep on fighting.


For me this is turning into an incredible experience. Before CDSN I had never created anything on the web - outside of my personal blog. Hearing the feedback from everyone has been humbling, cathartic, surprising, and truly life changing. I've made new friends who I can say fully understand. When I was diagnosed in 1999, after 14yrs of never knowing what was wrong. I was 19, a point when I was ready to finally embark on my life - to live. Needless to say, staying in University or holding down a job was challenging. Since I was a kid I always wanted to help people. I tried returning to University to be a social worker...I still only have 4 credits lol. Long story short ... I finally feel like I'm accomplishing something with my life; something to wake up for - helping people.

For way too long I lived my life with Crohn's Disease running it. I've been on disability for years, I rarely want to leave the house for numerous reasons - whether it be a bathroom, pain, nausea, fatigue, worry of infection, ...I could go on. I felt *and kinda still do, working on it!* that staying home is easier - when there is a wonderful world around me that I am barely taking advantage of. CDSN has started to help me re-enter my life; step out of limbo and start living again. I've kinda always been a relentless optimist; never going to let Crohn's the best of me. I am ready to start living again, one day at a time. I am tired of Crohn's ruining so many wonderful opportunities, and relationships...I am someone LIVING with Crohn's NOT someone SUFFERING from it.



Thank you everyone who has taken the time to read this...Together as a community, we can let the world know about Crohn's Disease- put faces and stories to a disease that far too long has only been something people have heard of, or know someone living with it, but truly doesn't understand it.


I am going to stop rambling now... best wishes to everyone.

Saw The Doctor Yesterday ...

I saw my Hepatologist (Liver Doc) yesterday and this is what I learned. My viral load (which means how many times the virus has replicated in my system) is very high at 110,000,000. The cirrhosis they saw is more extensive then they first thought. The doctor is starting me on a fairly powerful medication called Viread - originally approved by the FDA in 2001 to treat HIV patients, and in 2008 approved to treat Hepatitis B (HBV) patients

That is all I know right now ...I want to thank everyone for the incredible support! Thank you Thank you Thank you! As soon as I know more I will update.

All my best,
Jason.

1 Biopsy Back - 2 to Go!

I received the results of the first biopsy - the one they could do locally and not send out.

To no surprise came back positive for Hepatitis B. Unfortunately it also showed that the damage is moderate to extensive. It also appears that I definitely have had Hep B for 2.5-3yrs now as someone who first gets sick their numbers are very high - mine were low (which means I've had it for "x" period of time). The biopsy also confirmed the cirrhosis on the liver, which is also extensive.

The next step is the results of the 2 remaining biopsies to identify which strain of Hepatitis B I have - as some medications work better on certain strains and vice versa. The last biopsy is to rule out Liver Cancer which is something that chronic/advanced Hepatitis B can cause.

The goal of treatment is to keep the function of my liver better then it is, and to prevent the cirrhosis from spreading. Since I already have a fair amount of damage talks of a transplant have been discussed. I will know more after my next appointment which is on the 18th. The other two biopsies won't even be back until mid/late this week.

I am handling things slightly better - but still overwhelmed and scared. I know I have a lot of amazing people rallying for me ... which is incredible. I am very grateful for the simple comments and well wishes. I WILL FIGHT this damn disease - not going to roll over. The treatments available today are very promising - considering 10yrs ago there were NONE and it was essentially a death sentence. NOT ANYMORE!

All my best to everyone,
Jason