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.

Putting it into perspective

Let's be honest here. When I started this blog I never meant for anyone I knew to find it, let alone read it. Oh sure I knew strangers might stumble across it, yet I also figured that if they did it would be because they had typed something into their search engine that brought them to my site to begin with. Ergo it was quite possible that 1.) the things I am blogging about might actually inform them of something they may be struggling with, and/or 2.) may make said person realize they are not alone in whatever hidden illness battle they might be waging. But as time went by I had a few people wanting updates on me and given one of my friends had already found this blog (hey Beth, my fellow yarn hoor--what up?!!), I thought it couldn't hurt to share it with a select few. Now, I can count on one hand the number of people I've let into this inner circle of mine. Each time I give out the link to this blog I always feel a bit hesitant. This is a place that I consider very private. I am not one to bitch about my health as incessantly as I do here, especially not to my friends, but this is my one outlet to do so. Of course, if my friends ask me questions I will answer them, however I often don't get into a lot of detail and/or let them know what it's really like. There's no reason for this except that I don't want to bore anyone with the gory details nor make it seem like these illnesses are my life. Because they aren't. I have no qualms sharing with anyone certain aspects of what I have. To me, knowledge is power. By sharing I am potentially helping someone figure out why their ALT's and AST's are high. Or that lung problem that seems to run in their family? Maybe that's A1AD. The bone pain they're dealing with? I get it...I deal w/it too. So why would I not want everyone to know about this blog? Simple. I get that I come across here as if A1AD and arthritis are my LIFE. My ONLY life. And that couldn't be further from the truth. Yes, I have focused on it a lot (i.e. this blog) by researching, reading, seeing specialists, and going through the motions. Yet I am many other things than just a person with hidden illnesses. I am a wife. A mother. A dog owner. A friend. A knitter. A photographer. A website designer. A coffee lover. A cook. A lover of movies. A book reader. A writer. And the list can go on and on. I have three other blogs in addition to this one. I have a knitting blog, a photography blog, and my blog on my MySpace page. Each one shows a different facet of my life and yet none of them define who I truly am.

People who know me understand this. They know that while I may talk about my problems when they ask how things are going, that I am not all consumed by it. It is not who I am. It's just a part of who I am. Just as the other things I listed above make up the person that is me--A1AD, G6PD, Arthritis, etc. are all just pieces that help form a whole. The illnesses are nothing I can get rid of. Nothing I can ignore. Nothing I can truly change no matter what I do. They just simply...are. Believe me, I've tried. And at times I still try. I would love nothing more than to go back to my days of no pain, no bone crushing fatigue, no worrying about when my liver or lungs are going to fail me completely, no drugs, no nothing but good health. I can't count how many times I have pushed myself pretending to be something I no longer am and paid for it dearly. Yet I will always be that person. I will always do everything within my power to lead as normal of a life as I can. But with this I have learned that I can't do it all. That is not a bad thing. I have also learned that I have to prioritize my life. Again, this is good. As much as I loved my wedding & event decorating company when I bought it, I started to resent it towards the end. Working as hard as I did had serious consequences on my body and I had to admit this to myself, and let it go. We could've kept the business. We could've kept on, me pushing myself, Ryan and my dad working two jobs, the kids losing out on weekends, but we certainly COULD have kept doing it. I just didn't want to. And there was no point to it. So I let it go. I prioritized my life and put my family and my health first. These illnesses forced me to do it. There was no sticking my head in the sand and pretending they didn't exist. My body refused to allow that to happen. Instead of fighting it I decided to listen. That is not always easy. Not when listening means accepting that your life will never again be the way it was. Yet I have been here before. When I got pregnant...when I had my son...when I got married...when we had our daughter...moved to Oregon...and so forth. Each time my life changed, sometimes dramatically, and each change had it's own challenges and rewards. With them I grew wiser, stronger, and learned a lot. As crazy as it sounds, what I have gone through over the past two years has taught me quite a bit. It's forced me to be more patient, to be more understanding, and to take better care of myself. Conversely it has also taken away certain parts of myself that I loved, albeit took for granted, and made my question how I can continue to go through life in the shape I'm in now. It has made me feel alone. Very alone. Writing about it here as given me an outlet to get all the things I keep from people on the outside world out of my inner bottle. This blog allows me to look back and recall what symptoms I've had, when my last flare up was, if there is any common thread between flares, what drugs I've been on, and anything else that deals with the craziness that is my life. I do not share a lot of other things that go on in my life simply because I have never felt that this was the blog to do so in. Nor have I talked a lot about my health issues on my other blogs. It may come up at times, in small amounts, but to me my other blogs serve a different purpose. At times they cross, as is a given, yet each one serves it's created intention--for me to share whatever the blog is about with other people.

Last night I did the finger stick test for the Alpha-1 Phenotype test. Part of the paperwork had a long questionnaire regarding your feelings about health, tests, and whatnot. One of the questions had to do with preferring to know if you have this deficiency vs. not knowing. I, of course, prefer to know. It gives me a sense of control in an otherwise uncontrolled situation. I can learn about it, find doctors that actually know about it, and possibly prolong my liver and lungs longer than I could if I didn't know about it. By acknowledging it I am also agreeing to get in the drivers seat and take over. Sometimes I will be in the passenger seat...going along for the ride...but sometimes I'll be taking the lead and taking steps to better my health. Would I love to go along for the rest of my life and deny that I have A1AD or arthritis or any of my other weird disorders? Of course I would! Especially if it worked. Unfortunately it doesn't. So I will continue to share my journey and what I learn along the way on here despite my misgivings and thoughts of completely deleting this entire blog for fear of giving the wrong impression that I am allowing these things to control my life. The last thing I want readers to think is that I sit around all day and night feeling sorry for myself, not living my life, and ONLY thinking about my health. That couldn't be further from the truth. Despite being in constant pain and having a black cloud above my head (i.e. the fear that my liver will conk out at any given time), I am doing my best to keep pushing, keep battling, and enjoying what I have around me. I have good days and I have bad days. And although I talk about not much else than my health on this blog, rest assured that I am doing so for a reason! ;o)

NASH

Last Wed. I made the trek across the river to OHSU's G.I. clinic. The building itself was quite large and a little strange to maneuver around. I had already gotten lost along the way and was flustered, but the cherry on top was when I went to check in and got the, "Didn't they call you?" greeting. Turns out Dr. Z had a family emergency and they had tried to call me. They didn't have my new home number however they did have my cell phone and I never received a call on that. Luckily they had set me up to see another doctor. I filled out a form, got called back, weighed, vitals taken, and then waited patiently. Dr. N came in and greeted me warmly. He had already looked over my chart--not sure what info they all had on me--but needed the results of my liver biopsy. Gotta love my bigass binder of medical paperwork. I pulled it out, let him read it, he nodded, and handed it back to me. I was asked what my main concern was for the day. This was a first! I told him that I was obviously concerned about my liver issues and wanted to know what he thought was causing it. He, too, does not think I have Alpha-1 Liver disease and said he's never run across an MZ patient that was seriously ill. Now I "know" of some MZ's who have already had a transplant or are waiting for one and informed him of such. He seemed surprised and said he'd love to actually talk to him--I guess from a research stand point it interested him. Still, Dr. N guessed that these MZ's who've had serious liver disease actually had underlying, undiagnosed liver issues (such as NASH) and that when their doctor couldn't figure out the cause of the inflamed liver, saw the low levels of Alpha-1, and hence made the diagnosis of A1AD liver disease. Not so sure that's the case, honestly. Especially not after "talking" to them this weekend. I should say that he did state on more the one occasion that he could be wrong which was good to hear. Better that then, "No way it could ever be this!!" Dr. N says he believes I have NASH - Non-Alcoholic Steatohepatitis. When compared to A1AD liver disease there are some similarities such as not being able to stop the progression of the disease and not knowing how bad your liver will get. In people such as myself (i.e. not overweight, not a drinker, and not diabetic) they are wondering if it isn't a genetic condition like A1AD. There is also a chance I could develop diabetes given I most likely have insulin resistance (or so says Dr. N). In reading more about that condition it does coincide w/my hypoglycemia problems. I don't think my insulin levels have ever been checked so no way to know for sure at this point. I was told that so long as I stay on a fairly healthy diet I will most likely not develop diabetes. Of course there's no way to know for sure. :o/

For now the approach is for me to have blood tests at least twice a year. Dr. N said he could almost guarantee me that my AST's and ALT's would go back up. Apparently that is the M.O. of NASH. The levels wax and wane but aren't always indicative of damage being done. On the contrary, actually--which is really frightening--but they are seeing patients who have never had raised liver enzymes end up needing transplants from this disease. Definitely a "silent liver killer." I'll be seen at least once a year, maybe more often, and be watched. I was given an article about the correlation between MZ Alphas and the effect it has on folks w/NASH and Hep C. It seems that being just an MZ worsens the NASH or Hep C. Double whammy!

We discussed a few other things, things that either are no biggy and/or I can't recall at this present time. If I remember them and they seem pertinent then I'll add them later. For now the new diagnosis brings my total of crazy ass things that are wrong with me (and actually diagnosed) to: SIX. Go me.

Lung wise I've been a lot more wheezy, short of breath, and feeling run down. I thought for sure I was coming down w/a head cold given my symptoms but either it was the shortest head cold ever, or it's something else. I do know that the previous owners of the house we're in had cats, so that could be aggravating things as I'm very allergic to cats. Or it could just be me adjusting to the wet/damp/moldiness that is Portland. I have a tentative appt. w/Dr. B (pulmo at OHSU) scheduled for Feb. '08. Crappy. I may get moved up after I send him my Alpha-1 stuff, chest xray, and breathing test from forever ago. I also plan to write him a letter and let him know how bad things have gotten. Definitely not horrendous or anything, but I'm not liking how I'm feeling. Dr. N seems to think that w/an Alpha-1 level of 71 that I should be just fine. Once again I was told that this is quite low for an MZ. Maybe I'm actually an SZ. Need to do that damn finger prick phenotype test for the love of gawd!! Hopefully I can get in sooner and update once that happens.

Arthritis has taken on a whole new meaning in this type of weather. Luckily it has been wonderful here!! I keep waiting for that to change, the sun to go away, the gray to roll in, the rain to come, and to feel the true meaning of living west of the Cascades. And yet I've been in more pain despite the mild days. Achy bones for sure!

Head splitting open/fullness thing has gotten better from the last time I blogged, but it's still there. Seems that as soon as I start to think it's gone I do something that requires quite a bit of physical effort and bam...it's back. The fact that it does seem to be happening less is hopeful.

On a more happier note, we are loving it thus far in Portland! We do miss our friends and my dad, but overall I think we made the right decision. The kids are adjusting well at school, Ryan likes his job (even though he's only been there for two days), and I'm learning how to get around our little neck of the woods. Lexi and Kya are handling the stairs much better than we thought they would. Kya isn't impressed by having the office as their "bedroom" instead of sleeping in crates. Weirdo. Lexi loves it, but they both wake us up at night when they move around a lot as the office is right above our bedroom. We have discovered the wonders of Ikea and are hooked now. Bought brand new bedroom furniture for our bedroom and both the kiddos' rooms. Soooo cheap and yet it's heavy, feels expensive, and looks great! I think it will take Ryan at least a year to recover from putting it all together, though. ;o) It's been hard not to eat out every night w/all the restaurants to choose from. I can't say that we've had crappy food yet (knock on wood). I can't wait to show those of you planning a visit out/up here all around our favorite haunts! For now...it's late...I'm exhausted and off to bed!