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
