Good evening, friends! First of all, I have to say that I am SO sorry that it has taken me so long to write an update. Spring is notoriously crazy and busy around the Hoyhtya household, and with me not knowing how I'll feel on a day to day basis, it makes things even more crazy. Fortunately, I have had more good days than bad the past couple of weeks. This has really been a huge blessing since I am the party planner of the household (and I tend to like to throw a party!) and Isabelle's birthday party was the 6th and Aunna's is a slumber party this coming Friday (pray for me! ;).
Anyway, I know I left you all hanging, and again I apologize. Besides life being crazy, I just didn't get what I was hoping to get out of the rheumatologist (as in, a diagnosis!), and I needed time to process and regroup. I'm trying to figure out how to explain this all in a way that it will make sense. We know that the symptoms that I have been having and the particular organ involvement/blood irregularities are all signs of Lupus. There is a list of 11 diagnostic criteria that is followed in order to identify that a person has Lupus. You have to have at least 4 out of the 11 criteria to be diagnosed. Well, for some reason, the rheumatologist that I was seeing said that he wasn't going to take into account any of my labs from the hospital or directly after, that he would only diagnose based on my labs that were done at my original appointment with him. This really boggled our minds as we knew I was coming out of a flare and that my labs of course would most likely be normal, or at least close to it, and of course they were. This doctor gave me a copy of the diagnostic criteria at my original appointment. It specifically says that you have to have these very specific abnormal labs, at least twice, to be diagnosed, which I have had those same specific EXTREMELY abnormal labs way more than twice! So anyway, since my labs were normal the day that he saw me, he said he couldn't diagnose me with Lupus, therefor couldn't treat me for Lupus, and sent me on my way with only a diagnosis of Fibromyalgia which he admitted was not the only thing going on (OBVIOUSLY). Please don't get me wrong here, it's not like I WANT to have Lupus. But upon going over the diagnostic criteria, it seemed so obvious to us that it was most likely the culprit here! Which was very frustrating because Lupus is very serious and I shouldn't be sitting here untreated, especially when I have major organs involved (like many with Lupus do)! Whew, I think you can probably feel my frustration at this point...
SO anyway, I had an appointment with my primary doctor last Thursday to have all of my labs checked again (blood count, liver function, peripheral smear [for abnormal cancer cells, have to keep checking I guess], B12 level, iron level, folate level, and possibly more, I can't remember!), and to talk about my rheum. appt. Well, I came prepared with the information that he gave me and my doctor and I went over it together. She thought it was ridiculous that he didn't review or consider all of my previous abnormal labs. As we went over the diagnostic criteria together for Lupus, I have 7 out of the 11 criteria (remember you need FOUR to be diagnosed). She then gave me a diagnosis of Lupus herself, HOWEVER, we aren't starting any treatment until I see a rheumatologist that knows her stuff! About a month ago, we had discussed a stellar rheumatologist in Oklahoma City that specializes in Lupus. However, I already had my appointment set with this other guy (who was the only rheum. in Tulsa in our insurance network, that's why I had to see HIM), so we agreed to give this guy a try first. Well, been there, done that, and now I'm being referred to this other woman that I'm REALLY hoping will take me. She works at the research hospital and you have to be diagnosed with Lupus already, then referred, apply, and be accepted! Everything has been set in motion so PRAY that she accepts me as a patient, because I really need to see an excellent specialist to get me headed the right direction for treatment!
Now on to more news, I had my appointment with the GI specialist this past Friday (yes, two days in a row of doctors!). She was super nice and knowledgeable, hooray! My doctor sent me to her since my liver has been enlarged and my enzymes elevated, because of my B12, iron and folate deficiencies, as well as some other symptoms. After going over everything, she wanted me to have a CAT scan of my liver, as well as an endoscopy with biopsies. My CAT scan is tomorrow already at 2:30! They said to expect to be there until 4:00, yikes. I also can't have any solid foods after 10:30 tomorrow. My endoscopy is scheduled for May 2nd at 10:30, and the doctor said to expect to be at the hospital for about 3 hours. While they are checking things out in there, they are also going to take some biopsies for testing. I then have my follow up appointment on May 16th.
Whew, this has turned into a novel, but now you are all up to speed! If you could continue to remember these days and tests coming up in your prayers, as well as pray that I am accepted by the Lupus specialist in OKC, I would greatly appreciate it! Thank you so much for your continued prayers and support!
No comments:
Post a Comment