So much for breathing

As I posted earlier, I've been having trouble with shortness of breath, and my chest being a tad tight. I was managing, though. Then this weekend I baked some cookies and noticed that I was really struggling to breathe. Felt like I had a weight on my chest and nothing I did could give me enough air. I don't know if it was the warm, moist air or what, yet something set it off. I probably should've gone to the urgent care or ER then, yet I kept hoping it would go away on it's own. That night I had some difficulty sleeping and by Sun. it hadn't let up. I was still dizzy and having the pins and needles in my head issues as well. Luckily the urgent care is right down the road and open on Sundays. I told Ryan I was going to go down there to be looked at just to be safe and headed off. When I arrived and told them what I was there to be seen for, they sent a nurse out right away to take my pulse ox. Despite my breathing being so shallow, my pulse ox was at 100%--yay! After a short wait they took me back, did the exam, and the doctor said I "looked infected" after he checked my nose and throat. He didn't go into it anymore than that, nor did he prescribe me anything, so not sure what all is going on there. They gave me a breathing treatment (Albuterol in a nebulizer), which is something I've never had before. I did, however, remember how Albuterol gives you the jitters. I used an inhaler for the exercise induced asthma when I was a kid up until HS. I stopped because I hated the way it made me feel. Very much like a hypoglycemic attack...and those suck. The side effects from this breathing treatment hit me pretty hard. It lasted well over an hour or two--which could be due to my liver not processing things as quick as it should. The doc gave me a prescription for the inhaler which I have yet to fill. I'm researching to try and find one with less side effects. I don't think my body handles steroids so well. My heart was racing and I had symptoms of high blood pressure again. Thankfully it worked! Although my chest is still tight and the shortness of breath is still there, I don't feel as if I'm fighting for air. In the end it was worth all of the crappy side effects. Now if I can just get the pulmonologist to bump me up already...

GI Specialists Strike Two

Last week I called Dr. N at OHSU to discuss my prognosis and ask a couple of questions. I was a tad concerned given the articles I had been reading about NASH seemed to suggest that I had a 1 in 5 chance of developing cirrhosis in 5-10 yrs. While I understand that no one knows how this will all play out, and/or if it will turn to cirrhosis for sure, I was curious to see what Dr. N thought based off of things thus far.

The phone conversation started off nicely enough. I told him that I wanted to know what he thought my prognosis was and he said that typically "this" (re: NASH) takes decades to progress to cirrhosis. For him he was more concerned about the possibility of me developing Diabetes. (As an aside here--I don't understand why he thinks I am Insulin Resistant given he said they NEVER see it coincide with Hypoglycemia. I explained that I was diagnosed as Hypoglycemic when I was younger, yet that seemed to go in one ear and out the other.) I told him about the article I had been emailed regarding MZ Alphas having their NASH exacerbated due to their MZ status...bad idea. After that things quickly deteriorated. From our first meeting Dr. N had seemed put off and very skeptical about the Alpha-1 support lists that I belong to. When I had mentioned some of the information I had learned about Alpha-1 regarding MZ Alphas and liver transplants, he asked where I had found "these people." As if it never occurred to him that there are such lists and groups in existence. I thought that was beyond odd but was willing to overlook it so long as he showed he had an open mind and was willing to even listen to what I had to say--even if it came from my "imaginary friends." (insert rolling eye icon here, please)

Somehow the topic of my liver hurting came up. Despite him telling me in the face-to-face appt. about the bag surrounding the liver, how it's typical for it to hurt as the liver enlarges, and whatnot, he backtracked. Said that he didn't think my upper right quadrant pain was from my liver. Dr. N said he thought I had Fibromyalgia. I'm sorry...I had no idea he was a rheumatologist as well! I then informed him that I had already been tested for, and cleared of, Fibromyalgia. In fact, my rheumy, and two orthos were quite confident that I have spondylarthropy--possibly Ankylosing Spondylitis. Then Dr. N did the typical arrogant, white coat, asshole thing to do. He pulled the rug out from underneath me despite not having ANY of my lab tests, chart notes, doctor's reports, etc. He told me that he wanted to "be real honest" with me...that I had "a lot going on--5 things, in fact" and that he didn't think I had any of them.

Spondylarthropy? No way.
Bile salt diarrhea from having my gall bladder removed? Absolutely not. (nevermind that the medicine I'm on for it ONLY works if you have bile salt diarrhea--otherwise it does nothing)
Alpha-1 Antitrypsin Deficiency? I don't have it!
(Not sure what the other two things are, but I guess I don't have those either)

So like...I'm all cured then, right? I mean, if I don't have any of those things then there is absofuckinglutely nothing wrong with me! SWEET! I can stop taking the Questran, stop taking the Percocet for the pain, and just go back to being normal. He's a freaking GENIUS!!

Needless to say, when I hung up the phone I was in tears. This man made me feel like I was the biggest freakin' idiot on the planet. He made diagnoses and took other already made diagnoses away from me without having the first shred of evidence to back any of it up. The only medical records he had available were my Alpha-1 results, my liver biopsy, and some of my liver enzyme tests. That's it. No CT's, no xrays, no specific bloodwork, nothing that points to what the doctor's I've already seen say. Doctor's that are HIGHLY respected in their fields. What is that saying? When we ASSume things we make an ASS out of U and ME. Yeah...he made an ass out of himself and an ass out of me. I was an ass to think this doctor had the desire to truly get to the bottom of things and to give me good care. Dr. N made an ass out of himself by just being an ass.

I am once again looking for a competent, liver specialist, that will not treat me like I'm an idiot, nor a piece of shit. Someone that actually knows of which they speak. A doctor that will LOOK at ALL of my medical records and hell, maybe even CONVERSE with the doctors I've seen, and then make the diagnosis. I have no problems accepting that I don't have A1AD liver disease--at least not at this point in time. But obviously something is going on and that needs to be watched. And please do not tell me that I don't have stomach issues thanks to the missing gall bladder. Believe me, I have tried to stop that nasty, gritty medicine with a positive "I no longer need this!!" frame of mind many times to no avail. I would love, love, love to not have to rely on any medicine...especially this one...but the medicine does its job because my body obviously needs it. And please stop telling me I do not have Alpha-1. From everything I have read and been told, if your Alpha-1 levels are routinely low, and you have at least one deficient gene, then you are considered A1AD. I DO have A1AD. If you tell me I don't I will instantly know you are not the doctor for me. It does not matter if my liver is not affected by it, or if my lungs are still fine. Alpha-1 is a part of my health regardless of if it's affecting me at this time or not. One more thing...if you are a GASTROENTEROLOGIST then please keep the diagnoses to your specialty. Leave the rheumotological stuff to the rheumatologists. Thank you.