Sunday, 19 August 2012

The Reason For All The Anxiety.... all down to Mr Creeps.

(This is going to be quite long, so you may want to go and get a cup of tea at this point)

Actually, that's a lie. It's down to poo. Dustmite poo to be precise. And pollen and pollution. And Mr Creep's physiological make up in his face and his immune system, but they are lesser things.

Dustmites - in your soft furnishings right now. Yummy.

Mr Creeps suffers from Allergic Rhinitis, which is like hayfever, but 50 million times worse*. It creates two reactions. The first is immediate and aggressive swelling in his olfactory system (nose and sinuses to us mere mortals), which only steroids can reduce enough to allow air through (ish). The second is for polyps to grow, thickening the walls of the sinuses and closing up the tiny little passages from sinus to nose, stopping the flow of mucus. It gets held in the sinus and goes rotten.

This is pretty close to what's happening with Mr Creeps right now

Doesn't that sound nice? And people wonder why he's short tempered.

Mr Creeps has large doses of steroids that he sticks up his nose (fluticasone) and pours down his throat (betamethasone). He regularly takes powerful penicillin to try and deal with the anaerobic (doesn't need air/light grow) bacteria, painkillers to try and keep the inflammation down and keep the headaches at bay, antihistamine every day, a huge range of supplements to keep his immune system on top form to avoid colds etc, and most recently he's had to take a powerful anti-fungal to try and kill the thrush infection from being on the steroids for so long.

Mr Creep's quality of life is pretty crap. He knows he has a loving family and everything he could ever need, but he can't enjoy it because he's always in pain and quite regularly ill. He can't sleep properly because he can't breathe properly. The steroids make him very emotional (we now have a punchbag in the conservatory to save the walls and doors) and they have made him gain weight. His tongue is swollen and sore from the thrush, but he has to be careful taking the anti-inflammatories as they make his stomach sore. He is depressed, tired, and very, very anxious about the next round of surgery.

This will be Round 3. Well, round 4 if you count the first time they tried to remove the polyps when he was 20 with some Lidocaine and what amounted to a pair of plyers. Oddly, he legged it. After that they discovered his immunity to certain anasthetics.

The official Round 1 came in 2002, when his polyps were so long they were nearly hanging out of his nose. The longest one was 2" long. What should have been a routine operation became a nightmare. 3 or 4 days after his op he began to 'spot' blood. Unfortunately, the consultant had flown away after Mr Creep's op. His colleague suggested we go to the nearest ENT clinic and let them have a look. On the 6th day Mr Creeps had a reasonably substantial nosebleed. Went to the hospital where they cauterised the inside of his nose. Yes, that IS as horrid as it sounds.

24 hours later, Mr Creeps nearly bled to death in our bathroom. Emergency services always think you're kidding when you tell them you're calling them because of a nosebleed. The paramedic who turned up in the car was really patronising until he came into the bathroom, then he was nothing but busy, busy, busy!

Round 2 was last year. The polyps had been building up again, and the sinusitis had been constant for about 18 months. The GP referred us and we duly went along to see the consultant. If we had known then, what we know now, we would have gone for an instant re-referral then. He was the most arrogant, awkward, dismissive, arseholes we had ever come across. We hated him from day one, but we were desperate, and assumed that if we went somewhere else it would be just the same. The only good thing that came out of it all was that Mr Creeps was allergy tested for the first time, which showed up the Dustmite allergy and a smaller pollen allergy.

Initially, the consultant cast a brief glance up Mr Creep's nose and told him that he didn't have any polyps. It was only when we pushed for a scan and it came back with a lot of white bits (matter) where there should have been black (hollow spaces), that he capitulated. He reluctantly put Mr Creeps in for surgery after suggesting the he should just live with it. Actually, to a degree - he was right, but he didn't offer us any alternatives or advice. That was it, and as 'living with it' was a nightmare, of course we opted for surgery.

During this time, we had repeatedly expressed our concerns about the bleeding, and as the wait was a good few months for surgery, suggested that the notes from the previous hospital got requested. We were turned down at every opportunity and the whole thing was dismissed.

After the op, it in the notes that the surgeon had actually had to do far more work than expected, including trimming down a a lot of internal scar tissue, and there were a lot more polyps than previously suggested. In fact, we couldn't even pick Mr Creeps up from day surgery til 7pm as he kept bleeding and they kept having to put the packs back in.

5 days later, his Dad and I took him to A&E, they transferred him back to ENT who kept him overnight and all the next day. They eventually let him home at 8pm having decided he wasn't going to bleed again. At 11.45pm I was screaming down the phone to the ambulance service that his ears were turning blue and he was starting to pass out.... Again.

The one abiding image (and I'm still sorry I didn't get a picture) was Mr Creeps lying on the bed in A&E with a big, bloody, perfect handprint on the side of his head, looking much like an extra from a Romero outtake.

He was transferred back to ENT where he stayed for another 2 weeks. In that time he had emergency surgery, by an amazing surgeon (who sadly, but understandably has buggered off to NZ), who not only tied off the artery behind his left eye, but also, while he was there, cleaned through his left hand sinuses (the job Mr Creeps went in for originally).

It took 6 weeks for Mr Creeps to be back on his feet. Even then he went back to work waaaay to early, and was then struck down by infection after infection. We finally educated ourselves and imported some suppliments to help boost Mr Creeps immunity, and reduce the swelling and the immune reaction. We also, got Mr Creeps to see a homeopath who has treated him to turn down his Dustmite reaction with amazing results.

By Christmas it became very apparent that while the left sinuses was in the best shape it's ever been, the right  sinuses were worse than ever. This time, we researched our ENT surgeons and went to see the lovely Mr Saunders privately.

He's was brilliant. He immediately looked up Mr Creeps nose with a camera (the FIRST time in 20 years - yes, really) prescribed Mr Creeps the right steroids, and booked him straight over to his NHS clinic on a 'emergency' basis for everything. He has taken the bleeding issue seriously, and referred us to Haematology who have taken about a pint of blood in the last two weeks. Our only hitch has been St Michael's Hospital's appointments clerk went sick and UBHT couldn't be arsed to find a proper temporary cover so the whole hospital's appointments were a complete mess. Didn't matter as we've been waiting on Haematology, and neither Mr Saunders or his counterpart are prepared to touch Mr Creeps with anything sharp until those results are in.

Mr Saunders is very interested in the success of the homeopathic treatment, and the cranial chiropractic treatments. He is also very interested in looking at stenting the pathways to the sinuses to keep them open. In fact, we've rarely encountered ANYONE (with a few notable exceptions - you know who you are) in the NHS with that type of forward thinking, pro-activeness we have encountered with him.

So, the op is on the 29th August, Haematology results dependent. They're keeping him overnight, which is fine. I want them to put him into an induced coma for two weeks through his danger zone (he could bleed at anytime), but apparently that's not the done thing so I will have to discuss something with the GP to try and help him with the anxiety.

Whatever happens, the recovery will be a long one. He's been ill for so long and there is so much for him to heal. Staying in Bristol is not an option for him, health wise. It's one of the worst cities in the UK for respiratory conditions. So, once Mr Creep's is fit enough to at least move, we're off to live by the sea.

*don't quote me on actual figures


  1. This has brought tears to my eyes. Poor Mr Creeps, I feel for him, I really do. It sounds absolutely horrid :( I truly hope the op is successful with as best recovery as possible.

    Where re you moving to? x

    1. Thanks

      South Coast. Not entirely sure where, but right by the sea. Nothing can be sorted til after we know how His Highness has had the op.

    2. Ahh ok. Just that my folks are wanting to sell there house but it's in Clacton, so out of your zone! Good luck x

  2. Sending you lots of love, as always.

    Neets x

  3. That is a hell of a lot to deal with. I hope the operation is successful.