National Health Shambles

Tags

aspergillus, chronic eosinophilic pneumonia, National Health Service, Pneumonia

Between us my partner and I were in A&E FIVE times this week, and I walked out twice in disgust.

I was scheduled to have three daily infusions of 1g methylprednisolone.  On Thursday I turned up as instructed at 9.15; the infusion started at 10.45! Why? Because the drugs weren’t ready!

The physio finally turned up at 11.15, just as the drip was finishing so I told her to get lost. More politely than that, but I said I’d been there 2 hours and I was leaving, she could come back tomorrow.

Then I had to correct the duty doctor’s prescription because she’d written down 30mg/d oral prednisolone to follow for 1 week, then 20mg/d, whereas I knew it should be 30mg/d, then 25mg/d, then 20mg.  What hope a poor little befuddled old lady?

Plus when I went to pharmacy they of course immediately asked me what other drugs I was on.  Now what’s that all about?  I’ve just handed them a hospital prescription, written by a hospital doctor, authorised by a consultant.  Do they not think any potential drug interactions have already been assessed?  And, again, what hope does some poor little old feller, 90 squillion years old, deaf as a post and even dodderier have of even knowing what drugs he’s on, let alone the dosages?!

Friday morning went pretty well!

Saturday morning I turned up again at 9.15 to once more find the drugs weren’t ready. So I said, well, I can stay till 10.15, then I’m leaving. So at 10.30, with no drugs in sight, I removed my cannula and walked out, with them all flapping like mad and trying to persuade me to stay. I said they could explain to my consultant why I’d received 2/3 of the drugs I should have had!

So that’s one more letter of complaint to add to my growing list. Including how they ignored me for over an hour last Saturday night when I went in unable to draw breath because I was coughing so violently in an attempt to hawk up a gob of the gunk clogging my lung.

It’s desperate, isn’t it?

Him?  Oh, he’d just been stooopid.  Been nagging him for days to grit the drive.  So, yep, he slips on the ice on the drive and splits his head open on the wall!  Came home looking like a very forlorn Peter Pudsey.

Chronic eosinophilic pneumonia

Looks like I have my diagnosis now: chronic eosinophilic pneumonia, with aspergillus fumigatus fungus. I suspect the fungus, along wth Sjogren’s, is the cause. And, do you know, I printed out notes on CEP two years ago when they told me I had ‘pneumonia’ and it just didn’t ring true. When will I ever learn to trust my instincts and press my case?!

Treatment of course is high-dose steroids, starting with 3 days IV methylprednisolone, then oral steroids starting with 30mg/day for a week. Deep joy. So obesity, headaches, sleeplessness and even more bone density loss here we come! The assumption is I’ll be on low-dose steroids for ever. No way! Too awful to contemplate. Will speak to my lovely naturopathic doctor soon and find an alternative.

GOOD news is I should start to feel massively better very soon.

Aspergillus

Tags

APS, aspergillus, Sjogren's Syndrome

Newsflash in from consultant is that they have found some aspergillus in my samples.  Nasty little bugger, that.  Don’t know yet what strain of aspergillus or whether it’s a chronic invasive type or a fungal ball (aspergilloma).  Treatments don’t look like much fun either: antifungals and/or immunosuppressants, possibly even surgery though that runs the risk of spreading the fungus further – not recommended.

Aspergillus is readily found on plants, trees and fallen leaves. Given that my house backs on to woods and my garden is always knee-deep in fallen leaves, that’s obviously a major risk factor.  I also have damp in the wall by my head where I sleep so will clearly have to get something done about that sooner rather than later.

Oh goodee.  What fun lies ahead.  At least I’m making a little progress in terms of finding out what’s going on, but it is likely to still be some time before they figure out what to do about it and meanwhile I have to deal with chronic coughing, shortness of breath and general physical and mental fatigue – trrific! www.aspergillus.org.uk/

Bronchoscopy

Tags

APS, Fungal infection, Lungs, shortness of breath, Sjogren's Syndrome, Vasculitis

It’s been an ‘interesting’ few days!

I had a bronchoscopy under GA last Wednesday.  I should have been ‘out’ for about 4 minutes – it took over an hour!  First, they couldn’t intubate me (can’t imagine why – I’ve never had much trouble getting things down my throat before :-)).  Then one tube wasn’t big enough to take the telescope, so they had to change to a bigger one.  Then, biggest biggie, they couldn’t get into my right lung at all cos they found the right main bronchus was completely blocked with some hideous, black, sticky gunk.  They tried to suction it out with the flexible scope, then had to change to a rigid scope (good thing I’d insisted on a GA, then, they wouldn’t have been able to get a rigid scope down me conscious) to try with that.  Still couldn’t remove any significant amount of the gunk.

So there it sits. And I await analyses and probably further pokings and probings – and not of a pleasurable kind!

Current thinking so far is it might be fungal, e.g. aspergillus – which wouldn’t be good news.   I’m wondering about mycoplasma pneumoniae – which I definitely had once before and is known to lurk indefinitely.  Could be a form of vasculitis.

Went home that evening and lay about pretty much all day Thursday feeling rather sledgehammered and with a fiendishly sore throat – funny that!  Also my guts were bloated and sore, I was constipated, but peeing constantly, though never completely emptying my bladder.  All the fluids they pumped into me, no doubt.  Deep joys.

On Saturday I was well enough to go out for a girly lunch and in the evening P and I went to an early showing of ‘Quartet’.  I ate a dark chocolate truffle at one point and suddenly started convulsive coughing, which I just about managed to get under control.  When we got home I had a neat vodka and that really kicked things off!  Was coughing so violently I genuinely thought I’d choke/suffocate.  So off we trogged to A&E.  Bad move.  Note to self – if ever in need of urgent medical attention, call an ambulance.  That way you are guaranteed at least a modicum of immediate medical attention!

I was in triage within about 20 minutes, which wasn’t too bad.  Then proceeded to have the mother of all coughing fits while the idiot nurse looked on gormlessly.  I was convinced I was about to die.  But actually fortunately managed to hawk up a great plug of gunk.  UNfortunately, I swallowed it.  I think I was so desperate to breathe, I couldn’t stop to produce a sample.  Nor was I offered any kind of receptacle.  Not a biggie, anyhow, as they’ve already sent off a load of samples for analysis.

The nurse took me through to a cubicle and left me.  And that was it!  Not a peep, not a glance from a single soul for the next hour!  Sent Peter to check on progress, to be told that there were 10 people ahead of me.  At midnight.  Terrific.  So we came home again.

Since then I’ve had relatively mild coughing fits and have had to use Benylin to get to sleep and stay asleep at night.  Now my ribs hurt!

Interesting medical discovery – it would seem that an infusion of a cocktail of dark chocolate and neat vodka would be a highly effective way to cut through the crap in my lungs!!  I could cope with that!

Respiratory physician

Tags

APS, Clexane, shortness of breath, Vasculitis

Wow, what a difference a day makes!  Dr Jennifer Graves is a rare breed indeed: warm, caring, sympathetic, knowledgeable and thorough!  Who knew such creatures existed?

Immediate upshot is that I will have a bronchoscopy under GA next week, at the Spire hospital in Tunbridge Wells.  Plus an XRay and a raft of blood tests.

At this stage she strongly suspects an autoimmune process.  Though it is conceivable I’ve got some weird underlying infection, even reactivated dormant TB (that my mother had when I was born).  She is doing a load of allergy tests – that Wanker Webster should have done when he discovered my IgE was sky-high at something like 984, instead of the normal 300 or so.  I am going to have to complain about that man at some point.  Right now, though, I need my energy for me.

Dr Graves tried to persuade me to have the bronchoscopy sedated, with Midazolam, but was sympathetic to my phobia about tubes and didn’t bully me about having the GA.

She agreed with me about so many things.  Such as it having been a jolly good idea of mine to try to have the bladder biopsy and the bronchoscopy done at the same time.  Didn’t happen – Wanker Webster again.  Combined with NHS.  Which I’m now dubbing National Health Shambles or National Health Scandal.  Am sure I’ll come up with a few more fitting monikers over time!  Dr G also agreed that the insistence on differentiating all the various AI disorders like APS, Sjogren’s, Lupus and Vasculitis is unhelpful and unnecessary.  They all overlap so much, why don’t we just have a lable like Autoimmune Disorder?  They could possibly be subdivided into, say, connective tissue disorders, arthritic disorders, intestinal disorders, but no further than that.

I have stopped the Clexane because it didn’t seem to be making much difference for one thing, and because, try as I might with icing and slow injection etc., I was getting hideous blobby bruising – not attractive.  Plus I came to strongly suspect that it’s the chest issues that are causing my symptoms, rather than clotting.  But we’ll see once this has all been investigated.

Bad news is that, if this is all autoimmune, I’ll probably need heavier-duty immunosuppressants, such as cyclophosphamide – a chemotherapy drug that can cause hair loss (amongst other ‘delights’, but it’s the hair loss that would bother me most – in fact, it would be unacceptable).

Dr G quite spontaneously mentioned vasculitis, which had wafted across my mind at times recently.  When I looked up the symptoms, I tick virtually every box!  Would be good to have a definite diagnosis.  But treatment options don’t look fun – see above.

I found it interesting that a respiratory physician should be so knowledgeable about AI conditions.  Unlike Wanker Webster :-(.   But thank goodness she is, and I happened to stumble across her!

Private appointment with respiratory physician

Tags

APS, atelectasis, shortness of breath, Sjogren's Syndrome

Woke up this morning feeling so shit I thought ‘this can’t go on’, but wasn’t sure what to do: phone GP and ask to speak to duty doc?; go straight to A&E?; hang on till appointment with Jutting on Friday?; just ask duty GP to at least request an urgent Xray?

In the end I decided to look up Jennifer Graves’ private secretary and rang to ask if they had by any chance already received a referral letter from Jutting.  Yeah – FAT chance!  But she asked if I wanted to make an appointment.  I dithered but asked when that might be and when I was told tomorrow morning (!!!!) I jumped at it!

EIGHT BLOODY MONTHS I’ve had these symptoms and STILL BLOODY WAITING for the NHS to do something, ANYBLOODYTHING!

Let’s hope she’s approachable and competent, that she knows about APS/Sjogrens, and that this gets things moving.

I really do need to be able to breathe.  It’s definitely desirable!

Clexane Report

Day 3 of Clexane injections and jury’s still out.

I’ve just woken up at 4.30pm from a 2.5 hours sleep. Feeling all thick-headed and at risk of a migraine.

Overnight after first Clexane injection on Friday my head cleared and I got rid of that ‘drunken’ feeling.  Chest cleared too and instead of being tight and wheezy, I started coughing which, perversely, was good!  Loosened mucus and I could breathe.

Still feel very tired.  And I can’t say the brain has improved any, not so’s you’d notice anyhow!  Still virtually forgetting my own name, where I’ve put things, forgetting to buy things even when they’re on the list that I’ve miraculously remembered to bring with me!  Typing is still rubbish.  Yadayadayadayada…

What’s going on NOW?

Weird new symptoms

So what are all these weird new symptoms???  I can’t breathe – that’s been going on for months.  I’m ridiculously tired, tho wired.  And I just feel spaced out, disconnected somehow, and like my brain – no, rewind, I don’t have a brain any more – my head is full of cotton wool and treacle.  Great combo!  So … do I have another chest infection? or am I clotting? or is it that the long-term steroids are running out?

Took 5mg prednisolone this morning, just to see.  Though if I’ve got an infection, that wouldn’t have been clever!

Seeing GP on Friday.  Can I wait that long??  Should I take myself off to A&E?

I’d like to get the scrip for Clexane and start that – but don’t want to until after I’ve had the dental implant – and can’t do that until about two weeks after I’ve stopped whitening my teeth – and I’ve only just started, so the implant’s probably a good month off.

Eeeesh, what to do eh?

And I want to go to Lucy’s 40th birthday party tomorrow night – even tho I feel rubbish.  Grrrr.

Tooth Whitening

Interesting.  Started Tuesday 1st January.  Put w-a-y too much gloop into the trays and so had terribly painful front upper teeth on Wednesday.  Finally spotted there’s a nozzle in with the syringes that you need to attach after you’ve removed the cap.  That took some figuring out too – instructions could be clearer!  Aaaah, now I see.  So now it’s possible to put the instructed tiny drop of gel in each tooth mould to be whitened.  So on Wednesday night I left out the painful teeth and yesterday they were fine.  But then the bottom front teeth played up – gawd!  So last night I left those out, but included the top front teeth.  Though I’m not now adding gloop to the moulds for the veneer or temporary crown – no point, since they won’t absorb any of it anyhow.  This morning everything seemed fine but around late morning the bottom fronts started playing up again – after a yummy hot chocolate actually.  I can actually see the gum line is a little red and inflamed there.  OK, so I’ll leave those out again tonight.

The crown is starting to worry me as it’s already looking rather dingy in comparison with the other teeth.  Have emailed Harman to ask what, if anything, can be done about that.  Or do I just talk with my lips over my teeth for the next month?  Not a good look!

Theodore

Went for chemo again today.  Preliminary blood tests showed his neutrophils are low again at 2.92.  Last time they were 4.something, and we’ve stopped felimazole since then so maybe it isn’t that knocking his neutrophils out?  Seemed to have high eosinophils too – which I thought were indications of allergy.  And something called MCHC, mean cell haemoglobin concentration, or iron deficiency anaemia.  I guess Culverden are going to have to talk to Gerry at Northdowns and take it from there.   Gerry said we should review Theodore’s chemo after a year anyway, and next session would be a year – wow, what a star!  Imagine him seeing another Christmas with us and having made it into another new year.