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