Last But Not Least

In my last post I wrote at length about the CT scan I went through.  That feels like so long ago now, it's hard to believe tomorrow it will only be two weeks.  A few days after the scan I got a phone call from the hospital telling me I had been booked in for a Lung Function Test.  I went for that on Friday past, little over a week after the CT scan.

The tests carried out on my lungs were tiring but not to the same extent as the day I had the CT scans.  I was expecting a treadmill and a breathing tube, as that's the vision I always had in my head as to what this sort of thing involved but it was nothing of the sort.  It was quite relaxed actually.  The Doctor that took me through the tests was a very nice woman who put me at ease with mutual disdain for needles and assured me the procedure was non invasive which helped me relax.

The tests themselves were a little awkward.   They all involved a mouthpiece attached to a robotic arm with a computer controlling the airflow.  The first step was to measure normal breathing so I had to breathe through the mouthpiece for a while just to get a reading.  The second test was a spirometry test which measures how quickly air can get in and out of the lungs and also gives an idea of the size of the lungs.  That involved a very deep breath quickly, and pushed out quickly.  My results for the test indicated there was some restriction in breathing; on the screen you can see a loop which charts the intake and outflow of air, my loop wasn't fully formed and was a little flat on the outflow.  The test was repeated a few times to establish an average of the results.

After the spirometry test I had to do a similar test this time involving a tracer gas.  You breathe in deeply through the mouthpiece and hold your breath for about 8 seconds and then breathe out again; whilst breathing in, a certain amount of the tracer gas is added, and then measured when you exhale to determine how efficient the lungs are at filtering.

The next test was similar to the tracer gas test, this time an aerosol was released when breathing in, I felt some of this powder in my throat when breathing in, but it wasn't unpleasant.  After both of these tests you had to sit for several minutes to return to normal breathing.  Another test like the first was carried out, this time checking to see how long it took you to return to normal breathing after being exerted.

All in all, these were the least unpleasant tests I've had to do so far, the CT was by far the most unpleasant, with the blood tests being around the middle.

It's only been 4 days since the lung function test but I have spoken to my GP and my consultant has reviewed the results and they have settled on their diagnosis, I do have Sarcoidosis.

There's just one more thing to do and that's causing me some anxiety.  Due to the nature of Sarcoidosis, small growths occur called granulomas, these are a lot like tumours but they do not grow in size.  They form when the immune system tries to "quarantine" an infection by covering it in cells.  The key distinction is that tumours are abnormal growths in tissue, whereas granulomas are an overactive response by the immune system to an infection.

The two look very similar and it's important to differentiate, so I have one last test to do before they can safely rule out everything else.  In September I will have a Fibre Optic Bronchoscopy which involves a camera on a thin tube being inserted through the nose, down into the lungs.  During the procedure I will be sedated [thank fuck] and a biopsy of the tissue will be taken to verify they are granulomas not tumours.  The operation itself only takes around half an hour and will be done first thing in the morning [8:30am] but I will have to stay in the hospital for several hours afterwards until everything wears off.  Not gonna lie, really anxious about this one.  It's the last test, and the last chance for anything to go wrong.  I've been advised that everything in my results right now points to Sarcoidosis and it's very unlikely at this stage that it would be anything else, but the biopsy is still needed to make that definite.

There is some relief in knowing the diagnosis, of course this now paves the way to research everything about the disease in the knowledge that, this is what I have.  Google can be your best friend and your worst enemy at a time like this, and the sites I have read through so far have similar descriptions, but vary wildly in their prognoses.  The statistics aren't consistent either in terms of the percentages of people that have acute versus chronic [short term and long term] cases of the disease.  Some have said the acute version lasts 12 months, others 24, while the information on chronic varies from insistence that you have chronic since birth, to others saying it can be onset in the early 20s through to late 30s.  Sifting through all of the information is rather overwhelming.

I haven't actually seen or spoke to my consultant yet.  My GP has advised I may see the consultant after the operation in September, or I may have a follow up appointment made soon after.  In any case, going forward, the most likely treatment will be a course of steroids due to how far along my Sarcoidosis has progressed.  For most people who get it, the condition remedies itself eventually and doesn't need treating [as in the acute diagnosis] for some it does remain acute but does need treated due to the severity of the symptoms - so I may have severe acute Sarcoidosis - for others the condition become chronic, and treatment turns to condition management rather than an attempt at expediting recovery.  It's important to note here there is no "cure" there's no drug you can take to stop it or make it go away, the steroids I may be prescribed are to counteract the symptoms, not to remove the cause as the cause is unknown.

From what I have read the steroids that may be prescribed are called Prednisolone, although in some cases if the condition has progressed further then Methotrexate is prescribed - which isn't a steroid, it's an antimetabolite, which I gather is basically an immune suppressor, the intent being to weaken the immune system so it's reaction isn't as severe.  They both carry certain risks though and I may be prescribed other medications to counter some of the side affects which means more tablets.  I'm sick taking cocodamol as it is, I'm not sure how it's going to feel taking so many tablets everyday.  The one reassurance is that the steroids are the lesser of the two in that they are prescribed in 3-month blocks, and long term usage is discouraged as they can cause thinning of your bones so it would likely be the shorter course if they were prescribed.

I don't know what to expect going forward.  Right now the Bronchoscopy is occupying my mind the most, I have been told it shouldn't be painful though so that's one saving grace, although the information pack the hospital provided mentions local anesthetic via an oral spray, and a sedative via an IV which will mean another cannula, oh joy.  Also I'd avoid reading WebMD, the article on there about Bronchoscopy mentions possible complications and very nonchalant in adding "very small chance of death" to the list - that's totally not terrifying at all for someone who's just looking for information to feel less anxious about the whole thing, thanks WebMD.