Still Unknown

Mar 26, 2018

By: Nikki

Year Condition Began: 2017


For about a week I was having a dry cough/asthma flare up that I first went to our local urgent care(my regular GP was out the country for the next month) on June 28th, and they diagnosed me w. cough and acute bronchitis which they treated with a breathing treatment and sent home with antibiotics. The NP I was being treated by wanted to do a chest xray b.c she knew something wasn't quite right and I had a high heart rate and slight fever, but other stats were relatively normal but wasn't able to b.c no tech available. After that dose of meds I still wasn't feeling well so I went back to the urgent care (after I got off work on July 6th) and that Dr. assed that It was my asthma wasn't being taken care of well enough so she increased my daily inhaler RX and started me on Singular Which I felt wasn't quite right but b.c I still had same symptoms as week before. Another week went by and by that following Thurs, July 13th I worked my shift and was feeling very sluggish and having some shortness of breath and that night extreme pain started and I was having trouble breathing even more so the next morning I went back the urgent care first thing the next morning and after a Chest x ray they saw that I had fluid on my lungs and something else they couldn't identify. I was then sent to have a CT of my lungs in which I was sent to the ER immediately afterwards where I was admitted to the hospital. At the hospital they treated me with IV antibiotics did a Bronchoscopy. A few days later I was released with a diagnosis of Pneumonia. Sent home w. Prednisone and to another CT in a month.. after that CT I was put on prednisone again for 10 days.. and then not follow up for 3mos.. FFwd to Nov, where I started having this weird swelling of one my eyes.. My reg eye dr couldn't figure it out so I went to my GP, by that point a little mass was visible and he immediately said it was a stye... so he said try these antibiotic drops and it should clear up in a few days if not see an ophthalmologist.. well went to one and they were like no not a sty but hmm try these prednisone drops... well nope that didn't work either so he says see a neuro ophthalmologist.. (Couldn’t get an appt for another month plus) so I have my CT a few weeks later and my lung dr said its flared up again so this time for a Surgical open Biopsy..

On the 9th of dec(Sat) I left work early not feeling well, the next day I went to Urgent Care(luckly ours is open on sundays) and was told that I had double Pneumonia due to the lung mass I was diagnosed with in July. I stayed home til the following Wed being treated w. a steroid shot and antibiotics. I felt better but I never truly got my strength back.. On Dec 23 (sat) I left work early not feeling well. By Christmas night my breathing had worsened and I was starting to have chest pain, so I went to the ER where they did chest xray confirming the Pneumonia had gotten worse and took blood and saw that I was anemic. With that and I was having small runs of sinus tachycardia they transferred/admitted me to Spartanburg Regional Hospital. I was treated with IV antibiotics and steroids and Oxygen. I was released on December 29th home to recuperate from that so I could be health to have a Surgical Lung Biopsy (VATS) scheduled two weeks later, to determine what kind of Lung mass I have the keeps causing Pneumonia. I’m told my recovery for this is 1-2 weeks due having a chest tube insertion. FFwd 2 weeks later and I have my surgical biopsy... omg chest tube pain... worst pain ever... So only results so far is that Its something w. blood vessels in my lungs (which could explain the anemia) (which the results my surgeon had) but then my lung dr says still don't know what it is and he took some more blood but he said its prob COT/BOOP or some sort of connective tissue disease..
At my 3mo followup appt at my lung drt told me that my ANA? blood test was positive and extremely elevated. I was told the next step now is to see a rheumatologist/works w. autoimmune diseases.. I haven't been diagnosed with Wegener's just yet but on my blood result report that my gp shared w. me it was a possible diagnosis but basically other test are needed.. But from the research that I have done on my symptoms compared to those of wegeners is very similar.. Sadly as of right now Im having to wait another 2.5 months for my rheumatology appt.. Meanwhile I am having a similar flair up of a swollen eye like I did back in November but this time its my left

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