Hello everyone,
I have been a lurker for quite some time, I have recently diagnosed with Pulmonary Fibrosis associated with Lupus.
My story getting this far is probably very very similar to all of you, I started feeling really odd in 2004 after a huge period of stress, muscles hurt, joints hurt etc etc, I worked 16 hours a day 7 days a week ( Bakery owner) and was soo tired. I figured it was the work load and soldiered on.
In 2006, we sold that darned Bakery and for a about a year I didn't work at all. The aches and pains eased off and I really then thought it was the work load. Then in 2007 I started to feel very short of breath when watching TV. Just late afternoons, the kind of short of breath that makes you need to take a BIG breath to catch up. Over the coming months and years...that was the least of my problems.
Soon after this I was displaying typical hormonal (perimenopausal) issues, hair falling out, dry itchy skin, problems with my cycle, bladder problems and I developed for the first time in my life what I thought where allergies. The "allergies" got so bad I finally took myself to the Doctors in 2008. Dr ran a pull and complete allergy panel, guess what, no allergies to anything! The only red flag was an eosinophil count of 870. Dr said "well you are allergic to something, we just don't know what" End of consultation, a pat on the head and out the door.
It was here I took this into my own hands.
I started researching this high Eosinophil thing. Surprise surprise... Autoimmune problems. ( My Mother has Lupus and a Sister with Fibro) I switched Doctors hoping to get one that may run further tests.
After much searching I finally found a wonderful PCP who hearing my family history of AI problems agreed that I needed bloodwork. All the tests run and again all that came back was the eosinophils at a high. Meanwhile none of my symptoms have gone away.
In december of 2008 I had horrific back pain that came on all of a sudden sending me running to the Doctor again, the pain was terrible, hot searing and electrical. Dr sent me off immediately for a spine xray, which of course came back normal but with mild arthritis. Sent off with vicodin and endured this for a further 2 weeks till Dr suggested a Gyno as she suspected fibroids or cysts. ...this is a big post sorry guys!
Okay...so. An appointment is made with a Gyn, had to wait 4 weeks to get to see him. My back pain continues. Once I get to see him finally I explain about my back and after examination he tells me I indead do have fibroids and ovarian cysts and orders sonograms. These results confirm and we discuss a hysterectomy along with a bladder proceedure to alieviate that problem all at once. The 1st surgery is sheduled, the bladder proceedure went off with out a hitch, a 15 minute proceedure not requiring chest xrays. I recover well from that and my back pain is better.
The hysterectomy is sheduled for 6 weeks later. Soon after scheduling a new pain appeared, MUCH MUCH worse than the back pain the same KIND of pain but in my left rib cage. This pain kept me up night after night until again I ran to the PCP. This time she thinks shingles only I have no blisters, or maybe a broken rib after all I had been coughing my kidneys up since having a seasonal cold 3 months prior. Off for another xray this. Results, no broken ribs but major inflamation in both lungs. PCP is clueless suspects a mild pneumonia and sends me home with more vicodin. 2 nights later the pain was soo bad that I thought I would surely die. Back to the PCP who then decided to send me for a CT scan. As I am now getting close to Hysterectomy date a copy of my chest xray and CT scan where sent to the Gyn as pre surgery requirements also.
The ct scan results of course came back with a whole LIST of things that could be wrong, PCP decides it is indeed a pneumonia and that s that.
Now the Gyn has a copy of all this, I get a call from his assistant 48 hours prior to surgery that because of my xray and ct scan results my surgery has been cancelled pending a Pulmonologist clearance. AHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!
The drama continues. I can go on and on ( I already have) but now am going to cut to the chase. Pulmonologist see's CT scan. Veto's the surgery. Sends me for Pulmonary function tests, a bucket of blood work and starts me on a course of prednisone. Blood work comes back with high ana. sed rate. crp. CT scan shows diffuse intersitial fibrosis, pulmonary function tests come back with restrictive pattern, Pulmonologist agrees that this is definately an AI issue given my family history and refers me onto be shared with a Rheumy. At the end of the day and months and months later, half my blood has been put in vials, I have hacked and coughed, cried and worried, I have a diagnosis and am being treated.
Pulmonary fibrosis secondary to lupus. treatment Colchicine 100mg per day, CellCept 1000mg per day, prednisone 40 mg per day, prescription prilosec, calcium and vit D. Prognosis.... So long as we can get the inflammation in check, instead of expiring in 3 to 5 I might make it 7 or so. I am 48. 2 beautiful grown children, a little granddaughter who I have only seen once (I live in the US and my entire family is in Australia) I am so darned depressed about this whole thing, I have told my parents and siblings about it but I am struggling so hard with telling my children, I have to get home to them, I think this is a face to face thing, now I am trying to get everything together for yet another international move all while trying to hold a fulltime job so as I keep my health insurance current for fear of not having medication................. My husband is dealing with this very very hard, he is so sweet to me and looks after me but i can be a real bear when I am down.
Thanks for reading everyone. 