I've joined several boards on here: initially PMR because that's what was diagnosed first, then the Lung board because after I saw the rheumatologist in January this year for the first time he said he'd like to try me on methotrexate but wanted a clear chest x-ray first - and that's when the fun really started.
The x-ray revealed 2 growths: a 4cm growth in my right lung, and a slightly smaller on eon my right kidney. The kidney was soon discounted as benign and I was told that I'd just be kept an eye on (which reminds me, it's coming up to 6 months since the ultrasound).
The lung, however, was more problematic: I was put straight on the cancer pathway (despite not knowing whether or not it was malignant) and over the next 2 months and various CT/PET-CT/Bronchoscopy they still couldn't confirm so whilst a needle guided CT was recommended the waiting list for that was longer than an operation, so on day 72 at the beginning of April after the x-ray the top lobe of my right lung, together with a major artery, was removed. Normal time to be in hospital is 4-7 days. Due to the steroids it took me 10 days to get discharged. I'd had an air leak (for those of a certain age, I sounded like Orville the Duck for 4 days) and despite a drain there was still liquid sloshing around.
I'd also had to taper fast from 30mg to 10mg, although as I was called in early I'd only got to 12.5mg. 6 weeks after the op I had to increase the dosage back up to 15mg and now (4 months post-op) I'm about to go down to 9mg on Monday.
I'm not due to see the rheumatologist until late September, although they are available on the phone.
I went to the doctors with a couple of little niggles a couple of weeks ago, the one causing me the most concern was a droopy eyelid which I'd had since the operation on my lung. Just after the operation, it looked as though I'd had a stroke. The doctor quickly diagnosed it as Horner's Syndrome and wrote to the consultant and I was called in for an unexpected chest clinic appointment on Thursday.
As per usual, there were problems at that hospital. I really haven't been impressed so far - the operation was actually carried out at another hospital with a chest/thoracic specialty and the doctors come down to my local hospital once a week. After arriving slightly early for my appointment and waiting for 35 minutes, the registrar came out and said that I should have been sent for an x-ray so off I trotted and was back in the department in 20 minutes. Called straight in - I still have fluid in the apial space at the top of my lung but it's decreasing. He was going to discharge me - until I mentioned that I'd already got a November appointment and the doctor's letter re my eye. He examined it, and confirmed the diagnosis - a droopy eyelid, less reaction to light and a small pupil as well as painfully dry eye (and less sweating on that side of the face, although I haven't actually noticed that!)
The bad news: it's incurable. The doctor thought it might have been caused by the operation, the registrar thinks it's probably the epidural (they had to have a couple of goes at getting that in).
So another department joins the list: I'm being sent for another CT because it'll show the nerve damage, and also to opthamology. He thinks they'll probably try botox.
So from being a reasonably active 68 year old with few health problems (a bit of osteo arthritis and osteopaenia) I'm now under rheumatology, chest, opthamology, and urology.
I haven't worked since the start of April (no I haven't retired yet) and haven't shot a music gig (my main hobby and love) since last October because I can't lift a full frame camera. In fact, I've just sold all my camera gear and bought a much smaller camera that can still change lenses.
We do have VERY dark humour, not usually suitable for public consumption...
GCA came out of the blue!
Dizzy? Not breathless but..
CT-Scan of Chest, Updates
Has Anyone Ever Used Methotrexate In Lieu of Pred?
Just when I thought I had had everything....
