Time for a medical update. Yesterday, I went to the pulmonologist for the first time. In a way, going to this appointment was sad. I had a quick pulmonology function test right before my hysterectomy in June of 2007, but that's all of the treatment I've gotten for my lungs since being diagnosed with Hermansky-Pudlak Syndrome. I've known from the being that pulmonary fibrosis is a part of HPS, however, the GI issues have consumed my time, energy, and attention the last few years. And honestly, I just did not want to face the pulmonary fibrosis diagnosis. It's a nasty and complicated symptom of HPS.
So, I finally went to yesterday's appointment with some apprehension. And I'm glad everything went well, relatively speaking. The pulmonologist appears experienced and personable. I did have one test with the nurse before the doctor entered the room, though. She held a round tube that measured my lung force as I blew into the tube. In other words, I was supposed to take a deep breath, hold the breath, and then blow as hard as possible into the tube. I tried the test three different times and then the nurse recorded the best score. The normal range for this particular lung force test is anywhere from three hundred to six hundred. My best score was three hundred and fifty, but that was blowing with all of my might. I have a follow-up appointment the first week of October, where I'll have new PFTs conducted and another consult with the pulmonologist.
Today, I went to the gastroenterologist before my harp lesson. I'm so thasnkful for a GI doctor that listens, asks pertinent questions, is willing to think outside of the box, and consults me before deciding the best cousrse of treatment. After hearing additional information regarding the on-going esophogus and throat pain, the GI doctor sent me home with samples of a "brand new" drug that is supposed to work quicker and better than Nexium.
At one point, my GI doctor said, "Tell me how your throat really feels inside. Is the pain smooth, thick, sharp, or dull?" I told him that the "pain" was thick, similar to the feeling you have in your throat just before coughing. Another way to describe is the feeling you have in your throat after eating or drinking dairy products like a milkshake. Only, I have that thick feeling so much of the time that it's difficult to swallow. I used to take my morning medications with just a few swallows of liquid. Recently, I've needed one to two cups of liquid, and even then, I'm not totally sure the medicines are going to stay down.
So after conveying all of this infomration, the GI doctor recommended an "out of the box" treament in addition to the new drug. He said, "Drink warm decaiffenated herbal tea just before eating". He said the tea should "break up" the mucus as well as loosen my throat and esophogus muscles. My GI doctor believes the mucus is a combination of allergies, reflux, and ceroid (a waxy-like substance known to exist in humans with HPS). I'm supposed to try these new treatments for ten days before following up with my gastroenterologist.
