Seriously

I tried "warning" the GI dept. about my A1AD so that the Nurse Practioner I was seeing could read up on it, yet it fell on deaf ears. They just assured me that if she didn't know about A1AD she would ask the doctors. And I'm seeing her why? Blah. So my appt. rolls around and I go in to see NP B. She's got a bad attitude from the start, yet I don't care...I'm just hoping she's gonna surprise me and tell me what the next step is in finding out how bad my liver is. Instead when I tell her I have A1AD she tells me, "That's a lung disease. We don't treat the lungs. You'll have to see a Pulmonologist instead." Oh yeah...here we go. I correct her and explain that A1AD can indeed affect the liver. She agrees but has to put a little "but that's EXTREMELY rare" on the end of it. Not really and does it matter? I mean if you have a patient that is A1AD, has had elevated liver enzymes for over a year, has an enlarged liver, and has tested negative for all the obvious diseases that cause liver damage does it matter if the only thing that makes sense is rare? I may be the only case she sees yet that won't change that if the Alpha-1 is causing this that it is what it is. I digress.

The moronic statements continues as she asks me about heartburn/GERD and what I'm taking for it. When she asks if I take the Prilosec w/food I tell her "No. I don't have an appetite in the morning anymore. Been that way for at least a couple of months and that's not like me." She launches into a dramatic, somewhat freaked out lecture about how I HAVE to eat. Uh...yeah, I would, if I wear hungry and not nauseous. The next words out of her mouth still have me angry and shocked. "How long have you been anorexic for?" Seriously. I was dumbfounded. First, I wear a size 8--sometimes a 6 if I go to Old Navy (love that)--and weigh roughly 135. Second, when I was in high school I had a nasty rumor spread about me that I was anorexic because I weighed 98 lbs. and the girl didn't like me. I wasn't anorexic then (I had a kickass metabolism and was very, very active) and I sure as hell am not anorexic now. The only words I could form were, "Excuse me?" and she sighed heavily and said, "Okay fine then...how long have you been without an appetite." NP B. is a real gem, I tell ya what. I later asked my dad (a nurse) if anorexic has a different clinical term that I didn't know about. He said it means not taking in proper nutrition to sustain life. Still not connecting me not having an appetite in the morning to not sustaining my life. I've tried, there are no dots.

Then NP B. had to say over and over again about how she didn't have ANY of my records and therefore couldn't do ANYTHING for me. No matter how many times I explained that my blood tests and CT scans were all done at either the hospital or the actual clinic I was sitting in at that very moment, she refused to hear me. Other doctors from the same clinic had accessed my records as had docs from outside the clinic. They had no problems. Yet I guess this was too much for NP B. to handle. She did give me a "physical" though. Lasted all of 2 mins. I think. The woman barely pushed on my side and proclaimed that she "couldn't even feel" my liver. Again, funny given that two other doctors felt my liver quite easily although they did push harder. Maybe that was the issue. (insert sarcastic smiley here)

I told NP B. that I was extremely exhausted, had quite a bit of pain and uncomfortableness in my right side, was very bloated, and had "brain fog." Her diagnosis? Unrelated to my liver. Remember, according to her there was nothing wrong with my liver as the ONE test result she could access wasn't high enough for her (but it was indeed elevated) and she couldn't feel my liver. The bloating? Oh that's from dairy. Ya know, that 1 cup of cappuccino a day I drink...yeah, that's it. Or my medicine that I've been on for over a year and never had bloating like this. Totally! No way is it because my liver is failing. The rest of the symptoms she had no answer for yet assured me she didn't think they were caused by my liver.

Taken from the American Liver Foundation website: "Alpha-1 may also appear in late childhood or adulthood and be detected because of fatigue, poor appetite, swelling of the abdomen and legs or abnormal liver tests." Now call me an idiot but why is it that I know more about liver failure than a GI Nurse Practioner? One of the other major symptoms is diarrhea. TMI folks, yet this was one of my very first symptoms that started two years ago. The GI folks think/thought it was IBS despite not having any issues before and it starting suddenly. I've also been having the big "d" again although I've been on medicine for it for a year and a half. I gotta think it's not a good sign.

NP B. did tell me to up my medicine (Questran) after she looked at my eyes. I had my dad look at them and he said there was a bit of jaundice there. Questran is commonly prescribed for jaundice (I was put on it to control "d" after my gall bladder surgery), so we can only assume that if I wasn't on it then I would be as yellow as the sun. I don't have any plans to see if this is true, though. Other than that, she said she'd look over my test results and then call me to go get more labwork done. Total.Waste.Of.Time.

Friday I called to see what I could do to get an appt. with an actual doctor. One who is, coincidentally enough, both a GI and a Hepatologist (liver specialist). Turns out NP B. already spoke with him after my appt. last week. No word on what was said or what, if anything, the plan is for me. Instead I got to find out that Dr. H. is booked until Sept. I practically begged the girl stating that I am getting worse and don't think it would be smart for me to wait that long. She was very sweet and put in an email to Dr. H. in hopes that he'll squeeze me in soon. I guess we'll see how it goes.

I don't think I posted about my follow-up visit w/Dr. B. I actually saw his PA whom I like. I am considered G6PD (Glucose-6 Phosphate Dehydrogenase) Deficient. They want me to start taking Sulfasalazine and try taking the Gabapentin again--though not at the same time. We need to watch for side effects. With the G6PDD there is a chance I could be thrown into Hemolytic Anemia. That would be bad. So I have standing orders for routine blood tests to monitor me. Hopefully this will help my achy joints/muscles with no allergic reactions and/or side effects. The PA tried to pin Dr. B. down for a diagnosis for me yet he said he wasn't ready to "pigeonhole" me just yet. :oD Irregardless he does think I have either Undifferentiated Spondylarthropy and/or Undifferentiated Connective Tissue Disorder. Arthritis...that's all I know. I haven't started the Sulfasalazine yet as I want Ryan to be home w/me in case I have a bad reaction to it. Plus this weekend was so crazy that I didn't want to take it and end up w/horrible stomach cramps, bad "d," or whatever. Hopefully I can try it out on Tues. I would love to be off the Percocet w/all the liver stuff. I'm still at 1 to 1 1/2 pills a day, which is really good considering, yet I've noticed that I'm almost having to take the 1 1/2 pills a day instead of half to one. I don't like it. I know the docs would be "oh seriously, that's nothing!" but I don't like it. Ya gotta do what ya gotta do, I know. And I wouldn't take them if it didn't feel like my freaking legs were being beaten.

I am so ready for some good health.