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.