Obstructive Sleep Apnoea

…..Take this online test to see what you score, and whether you might be at risk from Obstructive Sleep Apnoea.…

Click Here to take their Pictorial Epworth Sleepiness test.

The British Lung Foundation are running the test. I’m just interested to see how other asthmatics/chronic lungers score.

I do not have OSA, but do desaturate overnight so sleep with 3L O2. I scored 7. Julian scored 2. I am not a great night time sleeper but could easily drop off, most places, anytime during the day. I was relieved to find out I am only mildly at risk!

I’d be interested to hear how you all scored.

…..Please do take the test and post your score in the comments below!…..

A Non Specific Virus Strikes Me (AGAIN!)

….and specifically of the nausea, vomiting, stomach like water and head exploding type….

Oh, and did I mention the fever?

So our trip to Charing Cross Hospital on Monday for Julian’s biggie Endocrinology consultation had me picking up more than I bargained for. I guess two tube trains, two buses and 4 hours of trudging from multiple rooms to pharmacies to blood tests around a huge hospital is way too much to ask of my immune system which is already semi knocked out by the steroids.

Plus I have an Achilles stomach.

And by that, I mean my stomach does not function in the way an ordinary person’s does-I get very stomach sick very easily. Maybe it’s the whole gluten intolerance thing or the whole I’m a migraine sufferer thing, or just that my stomach is weaker than normal and if there’s a bug in the air, I’m going to get it.

….and here’s a picture especially for ‘Tasha!

I actually haven’t had full on definite Norovirus since December 2008, and when I picked that up it was following a trip to RBH-so ok, tubes, hospitals and the general public throwing germs at me. But I have had countless scouring out stomach upsets/bugs/ or really, Non Specific Viruses. And the last one was only 2 weeks ago.

And I’ve currently got another one.

So this is now my 2nd day very much in bed armed with the alcohol hand gel, antibacterial wet wipes and bleach sprays in the bathroom I am using. Julian never gets my bugs, it’s just a ‘me’ thing-but I am a germophobe and a cleanaholic at the best of times, which makes it even more unfair that I’ve picked up another bug. Luckily the doglet can’t catch human germs, (or so the Vet said!)

And I feel just rotten. It’s the headache that floors me. The nausea can be controlled once I’ve stopped physically projectile chucking up. The stomach can have doses of ‘revolting but pink’ pepto bismol thrown at it, and I just have to wait for my body to fight the lurgy and regain some semblance of order in my digestive system and recover from the extreme weakness and horrid, horrid malaise.

If it wasn’t for my iPhone I would lose touch with the world. So Ok, today I am semi lying on the spare bed with my compter, but yesterday I could barely lift my head off the pillow, and hardly answered or sent texts/tweets as I was sleeping so much and my eyes just hurt. Sleep heals. I am very short of sleep as my lungs have been twitching alot at night recently.

And the most worrying thing about having yet another sick bug is that I absolutely have to keep my meds down, especially the steroids, and jokingly, my antisickness tablets-which even I can puke up, so I challenge any chemo patient taking metaclopramide to stay nausea free on them!

Interestingly, my last bloods at RBH in February showed that my white cell count is low, at 0.9, and they wanted my GP to keep an eye on things. I guess this is probably another steroid side effect, and is surely the reason I pick up so many of these bugs.

….Plus the fact that public transport, hospitals and schools are all whacking great germ factories and on Monday and Tuesday I’d ticked off visiting the whole list. So really, did I have a chance?!….

Sofa Slumbering!

…..It seems that every night, without fail, Anna-Bell and I konk out on the sofa for a nap that usually lasts about 2 hours!….

And whilst this snoring is going on (the dog not me!) Julian catches up with watching backlog episodes of Deal or or Deal (enough to send anybody to sleep) and plays around with his Nikon and macro!

It’s not just because I have a dog to cuddle that I fall asleep the second dinner is over, it’s just that my body works so hard to get through the day on half a normal person’s lungs, that everything is really twice as much effort and I go through life permanently shattered. It has unfortunately been getting steadily worse, this need of mine to sleep at a moment’s notice, although I really do not sleep well in bed at night. Crazy! And yes, I do have lower oxygen levels in my body which drains me, and yes, I do sleep at night with oxygen so perhaps I should be wearing it when I’m sleeping in the evening too-something Julian goes on and on about to me!

In the Autumn/Winter when I was so sick before Christmas, I spent weeks upstairs in bed, needing those duvet days of total R and R, TV, snacks and chicken soup. But in January, at exactly the same time as getting Anna-Bell, we also got two new sofas for our TV room, one of which is a sofa bed ((canny move there, Sus!))

So instead of napping upstairs, or going to bed early like any sensible person would do, we all curl up on the big black leather sofa with the warm, furry throws-bought with the dog in mind!

I do feel sorry for Julian. We used to have a great little social life-the odd meal out: the odd drink at the pub which is walking distance for a healthy guy. Now I feel we are pinned in by my chronic and constant exhaustion. We do occasionally go out for a drive after dinner. Something that was fun over Christmas to see the lights and the snow. Now we put the Puppy to bed (she sure needs her sleep too,) and we pile in the warm merc. I love these night drives, but I’m always on the verge of drooping eyelids as we ogle the big houses on the private estate in Northwood!

Of course it’s really nice to get the occasional take-out but I do miss odd meals out. Although the economy has sure put paid to that too! I’m really hoping I can improve my level of fitness to something a bit better than hibernation now that Spring has sprung. I am back enjoying my swimming at the Club-wretched rib pain and asthma permitting, and I want to enjoy the longer days and lighter evenings instead of feeling, (and sadly, I do feel this), that I am sleeping my life away.

So OK, I haven’t been at all well, actually J hasn’t either. It’s truly been a bummer of a winter.

…..But we have new sofas and a new puppy to cuddle, so, you know, I might just continue this sofa slumbering, until the weather really warms up, and so what!……

Brompton Blitz and Baselines

UPDATED at end: Friday Morning: Blood Results!

….Yesterday I had a big review session at the hospital, well, me, Julian and these complicated lungs of mine….

I had been dreading the day, and right up to when we were about to leave at 8am I was still toying with the idea of just cancelling out and going to school as usual instead. Heck knows why I get myself so stewed up about a day at that hospital, where I’m surrounded by just about the most caring Drs there are there.

If the truth be known, my favourite Dr left a year ago, and since then I have lost seemingly lost out on the personal touch caring approach that they always had-that little extra ‘how does this affect your life question?’ means so much to me.

I have a great email and phone relationship with a particular member of my Consultant’s Team, but we have never met in clinic as she didn’t work  Wednesdays. But she now does and yesterday I saw her for a 45 mins consult, and she was just about as thorough and kind and lovely as I could only previously have imagined. She also works right hand with my Consultant and kept popping in and out to talk to him and decided the way forward. These are some of our conversation results:

• She understands I am becoming quite demoralized by things and how I need a tweak here and there, without having to miss more school.
• We have therefore found a way of switching me to Dr Menzies-Gow’s Monday morning clinic-I think it’s an Asthma and Cough clinic, which will definitely suit me at the moment!
• We need to re-chart my baselines, off meds, and repeat a myriad of testing some of which I haven’t had done for several years.
• I need to redo by sleep study-she wonders whether I am on too much O2 overnight-I do sometimes manage without it, actually. But apparently my cough could mean I am becoming slightly apnoeic.
• We need to reasses my diet-particulalry now the GP has put the fear of God in me about my cholesterol level and I’m dropping lbs again.
• I need to learn better ways of coughing and clearing my lungs without pulling rib muscles all the time!
• We need to balance my dose of Aminophylline so that it doesn’t affect my migraines so badly.
• I need a repeat Dexa scan, and a lung CT again-but I’m concerned about  this amount of nuking!
• I need the full LF tests done off meds and she now knows how I feel about the ear slitting blood gases so I am going to have the arterial one instead.
• I am going to work at my conditioning and try and get back in to my swimming, like I was managing 2 years ago. Unless I give it my best shot I wont really know if it is time, new Puppy or lungs holding me back!
• Plus I can reduce my Pred back down to baseline, starting Friday-can’t wait-they think my lungs are currently ok enough to crack this 10mg level again!

Anyway, for sure there is more. The day was traumatic emotionally as the whole time I was there I had memories of dear Bex in the back of my mind. Enough to draw tears on several occasions.

I collected a stack load of forms for tests and bookings and future appointments and the knowledge that I am going to have to come in for a few days as a block booking to do all these tests and find my new baselines-but I’ve said, only on a Monday or Tuesday!

So lovely Suzie is writing to my GP about all my concerns and what needs to be done. And she is also telling my Doc that I need to stay on Mucodyne-my GP had previously told me it was addictive and she had reservations about this! Apparently it’s the minute quantity of alcohol in it and not the drug. Considering the thickness and quantity of phlegm I’m still coughing up everyday I need to stay with it. I gave her a delicious sample-ack indeed!

So I’m trying the capsules now three times a day rather than the liquid. Good old RBH gave me a massive quantity too so I don’t have an immediate hassle getting more drugs out of my Doc at home. Zzzz!

And after 2 follow up phone calls when we got back yesterday afternoon, I’m now just awaiting my Aminophylline and Pred levels from yesterday’s blood work. I’ll be happy when I’ve got the closure on that lot of appointments.

….And I guess I’m now just waiting  X number of weeks for my bed booking! Ack….

UPDATE: I was phoned on Thursday morning by Suzie, to say my Potassium level had shown up as very low (2.9) and I needed to see my GP for a 2 week potassium supplement and another test. She also said they appear to have lost my Aminophylline result so I need to get that tested asap. My Pred test result was still in the cooker so to speak!

It just goes On and On!

….Yep. You guessed it-The Cough….

I still have it. I wish I could report something a tad more postive, but I have been coughing solidly now, for 2 whole weeks.

The flu symptoms have gone, I feel much better in myself, but, as is my winter norm, the cough has proved itself to be a malingerer. I know exactly why I haven’t yet been able to get rid of it. My PEF and FEV1 are too low to be able to mange a decent lung clearing cough. I hardly shift any air to shift the mucus. When I get a cough like this it tends to hang around a long time after the infection has cleared. I think I am no longer producing such mucky lung junk, but the urge is still incessant, and, is perhaps worse than when my cough was at it’s thickest and most choking. I still have another week of antibiotics to take though.

However, I hereby sing the praises of my bottle of Mucodyne (Carbocisteine). It really does seemingly dissolve and thin the mucus and it seems to be coming up of it’s own free will, if only I could produce enough expiration to shift the lower muck out!

There is so much to learn about having bad lungs, far more than merely not being able to take a decent breath or exhale properly without a wheeze. I truly feel like a CFer at the moment. To think people with that illness endure this cough day in day out all year long. I give my heart to them. I’m burned out after a fortnight.

Yes, tearfully, completely and utterly totally exhausted. My ability to sleep has gone from normal bad, asthma-wise, to nigh on diabolical, cough-wise. I seem to be gauging my daily verve and spirit on how many times I have woken up in paroxysms of choking the previous night. And Julian too is being badly affected by this. He has to wake up and slap my back repeatedly until the coughing fit subsides.

It’s been particularly awkward at school these past 3 days, as of course I’ve had to cope when I am virtually choking mid lesson, and have scared a few kids in the process. Not a nice situation to be in. It’s also shockingly embarrassing for me.

I AM getting better. And I keep repeating this, like something akin to a mantra. Yes, I AM improving. But something I have never been good at, is patience. I also feel it’s wrong to moan and drone on about it like a stuck record. I’m sure you’re all sick and tired of hearing me moan about this cough and how sick and tried I am! People have been so kind in their wellwishes, on here, on FB and on Twitter. But oh dear. It is so very wearing. This cough just goes on and on.

Positively-If I’d had a penny these two weeks for every time I have moaned about this darn cough, then I wouldn’t be needing to buy a lottery ticket.

I apologise.

….But I reckon I’ll be back at the Drs on Monday morning! (or, I’m praying it will have gone by then!)….

Gross Green Gloop!

….Breathe a sigh of relief, this is not going to be a post  about lung  junk!….

*****Warning: Consult your Doctor before taking standard OTC cold remedies*****

I am currently suffering from a thick chesty coughy coldy thing. Lovely, not, and I feel especially rotten as school has been exhausting and I am not used to having colds as I so rarely get them. All I wanted was one night where I didn’t cough all night and keep J awake as he is now turning himself around from his week long night shift.

So he gave me a dose of the above OTC remedy. Well, he tried to make me drink it, but I practically gagged half of it up as it was so revolting, and wretched and spat the other half out after I had semi swallowed it. My list of things I positively will not eat now stands at two (the other being lychees!)

Let’s just say, I made a massive mistake. This stuff proved to be way too strong for little lightweight me-and I’d probably had less than a child’s dose of it.

I went to bed and felt myself drifting-not in and out of sleep, but more like in and out of consciousness. My whole body felt like lead. I could barely move my heavy limbs, and my fingers and toes felt numb. Several times I realised that I wasn’t even breathing as I was becoming apnoeic, and took great gasps of air in.

Yes it stopped me coughing, but it almost felt like it was going to stop me existing. Ok, so I exaggerate, but it was a nasty side effect, none the less, in the depths of the night.

I woke up from my slumber stupor at 1.30am and tried to get out of bed, I simply couldn’t move, there was no way I could shift my heavy lead like body. Good job I was not in dire need of the bathroom! At this point I also noticed that the O2 cannula was not on my face anymore. And in 5 months of sleeping with O2 on I have never once had this happen. So back into sleep I fell. Only to wake again at 6.30am, minus the cannula again, gasping, bursting for the toilet and not knowing where I was or which way was up. Somehow though, I did haul myself up off the bed. The nearest bathroom is the ensuite. I couldn’t find it. I stumbled into J’s office. Stumbled back across the landing completely tangled in oxygen tubing to the main bathroom, but couldn’t remember how to turn the light on. Eventually found myself downstairs (!) and made it to that bathroom.

I have no idea why I twice managed to rip the cannula off my face in the night. And the list of ingredients does not suggest that this stuff is going to have the same effect as Propofol, but I seemed to react badly to it. I would be interested in hearing if any of you have ever experienced anything similar to my night after the  dose of dodgy Gross Green Gloop!

A good night’s sleep, no. I eventually shifted my lump of self from bed at 9.30am when my Sister rang, and maybe talking to her helped me get the oxygen back in my system as I had a clanging headache and felt very very ‘post anaesthetic woozy’!

….Tonight I will have a standard dose of Simple Linctus, or Manuka Honey and lemon!….

12 of 12: August 2010

….So here follows my 12 photos taken during today, the 12th day of the month of August. Not quite a usual day as we are on vacation in the Californian Desert….

I’ll also do my best to not include too many swimming pool, food and margarita shots-yes-I’ll try-but I can’t guarantee it!

1) I woke up early, around 6am, but only because my Sister texted me from the UK! My morning ritual here in our hotel suite is to walk into the bathroom and switch off/disconnect E.T. my POC. As I sleep with oxygen we always put him in another room so we don’t hear the hum and click he makes. The bathroom is large, cool and a perfect distance for my 25ft long cannula!

2) I then switched the kettle on and started another morning ritual here. That of emailing the Family our daily photos and expedition jaunts. Yesterday we went to Idyllwild. You might like to read about it here on my blog and here on my 365.

Then I went out and about with my iPhone and took the following photos of local things of interest down the Palm Springs Strip.

3) This is the fountain and bronze statue of Sonny Bono, the one time Mayor of this city.

4) Another Fountain: This/these are outside the little museum downtown. We have always loved this spot. It is right opposite our favorite Mexican restaurant.

5) Whoever Miss Cornelia was, she apparently lived here in this house-now a local landmark and a living museum. Kind of ‘Little House on the Prairie’ meets Palm Springs.

6) LG’s Prime Steakhouse. My adopted big brother and our best friend, Chip, works here. Really good juicy fat American steaks! Am I sounding like an advert for the joint?!

7) Looking down the bottom end of the Strip (Palm Canyon Drive)

8 ) Elvis’s Star. It is on the pavement outside the old Palm Springs library. Did you know Elvis and Priscilla had their honeymoon in Palm Springs? You can still take a tour round the old house, in fact I think it has an open house this weekend.

9) This is the water wall in the newly renovated Hyatt Regency Suites hotel where we stay. It is behind the jacuzzi and makes a lovely backdrop especially when lit up at night.

10) Thursday night is Street Fayre night. Palm Canyon is closed off and becomes a myriad of stalls, farmers goods, musicians and food tastings. We love it and go every Thursday when we’re here. I particularly enjoy the free jerky tasters.

11) We thought this was hilarious-the temperature was still over 100F at 7.50pm and this poor stall owner was roasting his kettle corn in an enormous scalding cauldron, complete with a full face visor and leather gauntlets!

12) Dinner at the Chop House, at the end of the Strip and the  end of the Street Fayre. These were our pre-dinner drinks! Sorry-I couldn’t refuse one margarita (and beer) picture!

….Of course the noticeable difference for me this month is that my location is Palm Springs, California!

If you’d like to read other bloggers’ 12 of 12′s, go to Chad Darnell’s Blog….

Desert Updates!

….Thought this would be interesting for me to trackback to, at least!….

• Pari Neb:  is totally behaving himself after my pre-vacation panic over his on/off switch’s reliability!
• Swimming: I am keeping it up by doing a daily 40 minute swim at about the same tempo= approx 1 km
• SATS: They’re seeming to be better, but I am dropping them after exercise-However, I definitely feel less SOB
• PFs: I’ve so far more than flirted with the green zone-almost managed a 90% yesterday. Improving!
• Walking: I’m trotting around in my usual slow/stop manner but with more energy and less cramps
• Sleeping: Definitely sleeping well here-the bed is enormous and unreal in it’s supreme comfort!
• Music-ing: I’m itching to play the grand piano in the lobby. Do you think if I whack out a Titanic rendition the Manager will give us another beautiful bottle of wine?!

….See how the desert is so good for me, and this is after just 4 whole days!….

Sunny, Stingy!

….This is what I looked at whilst lounging on a raft in the pool, yesterday!….

Unfortunately, just as I was nodding off for a nap, one of the many desert critters decided to nibble my foot. It got thwhacked by J and promptly died-a wretched wasp!

Luckily for me, it did not sting me in a particuarly thin skinned place, and the bite only swelled up a tiny bit, whilst stinging to high heaven. Also luckily for me I am not at all alergic to wasp or bee stings, unlike my Mother! Plus, with a decent amount of Pred permanently in my system, it didn’t get a chance to cause any sort of a reaction!

Best treatment for wasp stings has been found to be a big frozen strawberry margarita-certainly numbed the pain!

But we had great fun with our friends who we will see more of today-going up to the spa at Desert Hot Springs. J and I are still very much in necessary relaxation mode and apart from a trip to Cabazon (the factory stores), on Wednesday, are still acclimatizing.

My lungs are working hard to degunk. I have a filthy cough at the moment. This always happens for a few days then things settle down. I have used my oxygen more in the evenings and overnight of course, although I managed to really drop my SATS swimming yesterday (86%) so I’m going to need to monitor that more-but I generally don’t take my monitor with me when swimming at home, so it might be my norm. My PFs are up-I have managed another 312 just now. I have also found my need to neb is already less. But again, I can never get lazy there, must always be prepared and have Baby Omron with me!

….So far, so good. The weather is ‘cooling’ for the weekend, it’ll be mild at about 108F, they’re saying!….

Desert Sun Time!

….All is well, we are here and settled….

This was the plane we flew out on yesterday, from Heathrow to Los Angeles.

Security at LHR was a breeze-didn’t even have to show my paperwork this time-they just swabbed my POC and the wheelchair, and we were through.

It was a good flight-a little bumpy at times with the jet stream, but United looked after us, well me, brilliantly. I felt  pretty bleugh towards the end of the flight but I had manage to doze/semi sleep for most of it to conserve energy and make the best use of the howling gale in my nose from the airline oxygen set up!

Our second flight from LA to Palm Springs was a turbulent 35 minutes of being buffeted as the cooler coastal air hit the high hot desert thermals. Mum and Dad call this plane “Lawn Mower Airlines” We think it was more “Pneumatic Drill meets Kamikaze Pilot Airlines” Much more up and down then Space Mountain. Sick bags at the ready!

We stepped off the rickety prop plane onto baking tar mac with an air temp of 112F.

Grabbed our luggage, leapt in our hire car (large microwave, having been sitting in the sun all day at the airport) and drove the 5 minutes to our hotel.

We feel we are home now. This is our spiritual home. We hope our friends staying in our house in London will be enjoying our home there whilst their decorating is done, as much as we are loving our time here.

So after a meal and meeting up with our friends last night, then a good but shortish night’s sleep due to the jet lag, we have woken up ready for the day and our adventures in God’s own Californian Desert Sauna!

And I will leave you with this video of why we love this place so much. Just look at that view!

….Going to give my lungs and my cough a bit of a workout now in the pool-need a swim and a good stretch out….