The Summing Up:

May 31, 2010

….This is the last day of my POC trial….

Tomorrow we all make the decision:

Therefore, in summary.

I have slept better-longer and more deeply. I have not snored. I have not woken up air hungry and gasping for a neb, I have instead, chosen to simply take some puffs before drifting back off to sleep.

I have seen no detrimental effect to the pulse dose with my often being a night time mouth breather.

I have woken with more energy and if anything, stronger muscles which have enabled me to cough and clear my lungs better. My PFs have risen by as much as 30% post neb.

I have not suffered from a single random cluster headache or woken with a single CO2 headache, and these have plagued me on and off for years.

I have also not had a bad bout of airtrapping and I truly feel I have been emptying my lungs better overall.

(I do not know why this is, but hey!)

Luckily though, my nose does not seem to have become dry and sore like I usually find with constant O2 in hospital or on the plane. I have some saline Ayr gel, but have not needed to use it because it is a pulse dose machine.

I have been totally compliant with using it in the way instructed because I have so genuinely found it beneficial.

Overall, I have had 5 green readings post neb in a row. My waking SATS have been 96/97% after a night sleeping on 2L oxygen.

My general SATS are around 92%, plus or minus 2% so this is a fantastic and worthy increase and I feel so much better.

Julian has noticed I am sleeping more soundly, and not restlessly tossing and turning. He has also noticed I have not suffered any night sweats or sticky head syndrome which have been a constant with me for several years. He also says I have a noticeably increased amount of  energy in the mornings compared with a week ago.

….I think the Jury will not need to be out for long in reaching tomorrow’s verdict!….


The Musical Madness of Eurovision

May 30, 2010

….this annual extravaganza requires a Public Health Warning….

(Taking a moment out of my blogging about my POC, oxygen and asthma to fill you in on last night!)

Well, what can I say about the Eurovision Song Contest?……IMAO…..

25 Nations across Europe and other countries thrown in who we Europeans don’t actually consider to be a part of Europe, for that, and possibly the only major Nations missing be the USA, Australia and Canada!

Several pulled out due to economic hardships. Praise the Lord, I hear you say!

We were thriled to come last but upset we didn’t actually get ‘Nil Points’

A disappointingly large number of ‘good’ songs that I could still sing now!

The statutory ‘pitch invasion’ early on which gave Spain a second chance of performing at the end!

A miserable number of weirdos. Where were the singing monsters and transvestite drag groups this year?

Where were the dancing Kosaks in a Norwegian song (the singer of which turned out to be a Russian)-Oh sorry, that one won it last year and probably went down as the best winer ever in my book!

We usually have a few dancing Grannies and OAPs but all Euro could muster up this year was the oldeset perfomer ever on stage playing a Bedoin Oboe! So, no fire eaters, knife throwers and the like!

The German winner (yes, German-hello political voters, erm, aren’t Germany rather big in the Euro market atm?) had released her single and it had already gone Platinum. Ok, so like, How? It was pants and so was she-and at the end she appeared rather ‘high’ on more than ventolin inhalers, I suspect. Nice American accent, for the record, was that the American contribution to the Euro Song contest, LOL!

People liked the Danish song. My Mother-in-Law voted for it.

We voted for Iceland-I liked the song and yes, long live the volcano that has caused us so much crap recently!

But even our new Tory voters couldn’t get the UK any further up the leader board than Bottom! Perhaps it is because we have made such a point of avoiding Europe. There is rather obviously this body of water between us and the mainland. We are not essentially therefore ‘connected’. Oh dear, how sad, never mind!

The single most hilarious effort of the evening for me was the Israeli entry. The only thing missing from it was a bucket for the poor bloke singing in unpronounceable Hebrew (which requires and inamorous amount of glottal stopping) to spit his phlegm into. Oh dear. Next year try the english translation!

I had a great deal of difficulty in not laughing myself into an attack and we had to keep switching over to let my lungs and heart rate recover.

There could have been 5 or so winners. So the seemingly one horse race of the Germans was even more bizarre-they’d obviously been practising with their beach towels.

If you’re interested-you could find the songs on You Tube. Have a listen to Iceland, Ireland, Armenia, Denmark, and Azerbaijan.

And check out the French entry, Terrible and a bit overly porno. Oh dear, will the French ever learn!

I suggest you ignore the UK entry. Can’t even remember the title-although the bloke was sweet enough-like a young, skinny version of my baby brother. Didn’t help him one bit though!

….Ah, Eurovision. Can’t wait til next year now!….

A No Brainer?

May 28, 2010

…..this is a quickie postette to say…..

Why oh why had I put it off for so long? I have been poo-pooing everybody’s advice that I need to sleep with Oxygen and I have been adamant that I didn’t. Yet after my 1st two experimental trial nights, I am like a whole new rejuvenated person.

Old without O2 Sus: My body has to fight so hard to oxygenate, my lungs get so tight, I wake time and time again, wander round the house, take a breathing treatment, get a drink, go back to sleep, repeat the process, and get up in the morning feeling like I hadn’t been to bed or hadn’t slept, dark rings around my eyes, and this thick muzzy sinusy headache. OK so I have a PND, but hey!

New with O2 Sus: Boing, zing, zippity do-dah! That was me leaping out of bed. Well, as much as I can with a pair of temperamental bellows and a rather dodgy back!

Immediately I checked my SATS and….

That’s a heart rate of 87 and O2 SATS of 97% Wowee! (P.S. The Bio sculpture nail gel is totally  fine and has been checked and approved by my Docs, and I am never made to remove it in hospital, LOL!)

So I phoned J at work (on a Night shift) to tell him the news. Then I loaded up my morning nebs (5mg Ventolin and 500mcg Atrovent), and….

Ditto the Wowee! a mind blowing PF of 325 and even better, GREEN! I have green zoned it once since returning from Palm Springs in April-and that was…, yep…, YESTERDAY!

That’s a PF increase from 242 to 325 this morning and a SATS increase from 92-97% overnight.

…..Yep, I reckon it’s a no brainer-but I’m still waiting til Tuesday for definite!….

POC Trial

May 27, 2010

….Last night I started my trial of sleeping with Oxygen and using a POC….

A Portable Oxygen Concentrator is a machine that ‘makes’ oxygen at 93% out of room air (21% oxygen)

This is the modern day equivalent of all those tanks and cylinders of gaseous O2 and LOX.

I am doing a trial because it has been suggested by my Team that I should be sleeping with O2. And coupled with the fact that I have a  very temperamental back weakness, the weight of those cylinders has meant that I have not been entirely compliant with using my O2 when out and about. I also utterly refuse to wheel it behind me.

This is what was delivered to me yesterday afternoon: Yes, a lot of jumbled wires and chargers, car charger, battery belt charger, carry case and the rest. But it was so simple to assemble and charged in 3 hours. I will get 6.5hrs out of it on 2L pulse dose.

I am trialling the Airsep Freestyle The world’s smallest, lightest POC and absolutely perfect for me for travelling.

I am keeping a list of questions and notes to discuss on Tuesday when I will make the decision. In fact I feel I haven’t slept very much last night because it is so quiet I sort of kept half an eye on the flashing green lights as it pulsed. Tonight I will run it from the ensuite so I am not so tempted to stare at it.

Just look at how tiny it is compared with the Pari travel neb. It weights 2kg (4.4lbs) Lighter than a Lady’s handbag these days.

And another picture of them side on so you can see how the two size up:

Like with all things new I am feeling a bit in two minds-a tad reticent. But my statistics this morning were unheard of for me. I did not use any extra nebs last night. I woke with a PF of 271 which is high yellow for me and with SATS of 97% which never happens unless I’m on major O2 for a long time.

The decision will be made over the long weekend.

….I’ll post the answer on Tuesday!….

Flying high with Oxygen

May 25, 2010

….I wish I could just book a flight and jump straight on that plane….

Those of us who travel with any kind of an illness have to pay time and thought to the whole packing process.

How many meds do we use, how many might we need on our worst days, how many extras should we pack, and have we got the all important documentation to allow us to break the 100ml rule?

Well I do all of the above in a rather extreme version-I have a whole carry on medication suitcase that the airline waive as I am a Special Needs passenger, plus I have the hassle of arranging Holiday Oxygen and Airline Oxygen just in order to be able to fly.

All my drugs require documentation form the Hospital which needs to be rewritten every 6 months!

I have known for 3 years that I desaturate in the airline cabin far worse than I do on the ground. Usually I am functioning on about 92% SATS and this drops into the 80s if I am more mobile than stationary, so, gardening, vacuuming, or indeed,swimming. I can cope, sort of, but I am prescribed supplementary O2 at home or when out and about.

I used to wear my O2 everyday at school until they got me my little scootie and I now whizz around far less breathless and without my O2 on. So, a little blue here and there, a bit puffier than I should be lungwise and I can generally sit down rest a bit and recover, albeit to about 95% with time.

This is not the case on a plane. I require 3L of constant Oxygen, unlike the pulse dose set up that I use when on terra firma. I have to arrange for all of this through my Doctors, through the airline medical desk, and in the case of Holiday Oxygen, through my oxygen provider here and in California. This all adds so much stress to booking and flying on any plane. We only ever fly United as I have found that they look after my needs the best-some airlines only provide pulse dose O2 some only provide a certain flow rate etc, plus I have been a life long UA frequent flier and we use their miles a lot

The process goes something like this:

Ring United-book flights but notify them of my needs-ie, requires airline oxygen and a wheelchair.

((NB: Regardless of what seats you book you will always be put in 8A+B in BC and 20 A+B in EP!))

Download Oxygen request form. (And soon I will also need to download the Request to use a POC form)

About 6 weeks before we fly, fill in the form with my GPs requests and leave with GP for signing and stamping. (This is usually where she loses it, as in the case of April 2010!)

About a week before we fly, collect form from GP and pay for her signature!

Give form to J to fax from his office to the UA medical desk. (In my previous experiences, most Doctor’s receptionists do not a) know how to fax overseas and b) actually do not know how to fax!)

Then WAIT! If I haven’t heard form the UA Medical desk within a day or so I’ll ring them in which case they have to plough through the faxes to find mine to tell me it is all approved and set up. Also, I will generally receive several phone calls reminding me that the airline O2 has to paid for per leg-great that’s $125 per plane and we get 3 planes a trip. This always feels like discrimination against disabled people or persons requiring O2 just to live a normal life. Aargh!

So All Set? Nope!

Upon check-in, remember to check with the desk clerk that the O2 has been ordered and is all in place. It takes about 90 mins for them to set it up. So no late checking in here!

Then: Arrange pre-boarding, ie I can board with the crew so J can set me up with the O2 and stow our baggage seeing as the airline O2 is two enormous cylinders which take up the 2 overhead bins above our seats. He then can talk to the Purser about me and arrange for my being able to neb during take off and during the flight. Take off  is when the planes suck in the very worst air.

I guess then once I am plugged in with my own cannula (as the UA ones are really stiff and hurt my nose on an eleven hour flight) then we are all set!

Incidentally: Seeing as I am always wearing O2 when we leave  home, as I cannot walk those airport distances etc without it, I have  to arrange to leave my tank at Red Carpet Club. This has become our routine now and something that AirProducts do for me.

I have not yet arranged for AirProducts to bring me a tank to the airport at LAX though as although I feel absolutely dreadful when I get off the plane, I can usually  hold out until we get to Palm Springs, where my big brother has collected them and brought them to the hotel for us. This routine works for me in my situation. However it will be changing slightly possibly next flight in August as I am now going to increase to 4L on the plane and may also be getting a POC, in which case a lot of hassle will be saved by not requiring the services of AirProducts at either end. Apparently California are stopping supplying gaseous oxygen and everybody is being switched to LOX. I have never used liquid oxygen and in the heat etc I don’t know how I will be with it so I’d rather skip that process and get a POC instead!

It’s all such a stress that does feel more than a tad unfair when we hit some spanner in the works somewhere along the line!

….See, I said I could never just ‘jump’ on a plane. What a rigmarole!….

Beating the Evil Pollen Particles

May 24, 2010

…My car is covered in a blanket of fine yellow pollen…

Q: Mary, Mary, quite contrary, how does your garden grow?

A: It’s mainly a rose garden-we got rid of the huge grasses that spread the EPPs around!

If the EPPs are sticking to the very shiny surface of my lovely Merc, then heaven help me-that means they’re sticking to every surface in my house too-well, they would if I would so much as let them.

There are ways of beating the pollen. Most of which are common sense to those of us with allergies, but I thought it good to share a few more. Some may be Old Wives Tales to you guys but having practised what I preached, I believe they work to a greater extent. These are the ‘non prescribed’ methods. I guess you’re already taking a variety of Allegra, Flonase, Telfast, Clarityn, Nasonex etc !

On a personal note, it helps if you know what seasonal pollens you are allergic too. I have Birch and Horse Chestnut oral allergy syndrome-this also means I don’t eat apples or kiwi as my mouth itches and swells. My worst summer allergies are Rape and Wheat grasses (I have a Gliadin allergy) I used to live in the countryside, surrounded by huge yellow fields of Rape. I suffered intensely from the worst summer asthma through my 20s. Then I moved back to London and improved for a time.

So apart from the usual ‘take a shower as soon as you come in from outside’, ‘change to contact lenses’ (this has always helped me as my eyes start up as soon as I take mine out in the evening), here is my recipe book of anti pollen ideas:

1) Try not to open windows at the beginning and end of the day, especially if there is a breeze outside: As the pollen rises/falls it will just get blown in.

2) However, if like me you are an ‘air hungry’ asthmatic, invest in very fine mesh net curtains and wash them weekly. This is what I am currently doing. If you really need the cool fresh air-open all the internal doors and use bowls of ice in front of fans to cool your room air.

3) If you have an aircon system use Hepa filters. Invest in a Dyson allergy vacuum, again with Hepa filters. We now have two. One specifically for the car! Wash the filters monthly and maintain them as per the manufacturer. I have been so much better since we switched from a regular bag hoover to Dysons.

(( Incidentally-we also had an extra pollen filter fitted to the Merc-some manufacturers can do this. So we have a double pollen filtration system and a charcoal filter. We never open the windows in the car and always wipe down the dash and use the mini Dyson))

4) Damp dust daily-especially the surfaces around your bed. If there is dust, at this time of year there will be EPPs in it too. Get rid of them both with a wet cloth. I also use those anti static dusters but find they still just flick it from surface to surface.

5) Wash floors/wipe TVs. All the static places will collect the pollen too-for me I even wipe my piano keys. I’m bound to scratch my nose or rub my eyes at some point during practising!

So those are the common sense methods that help me considerably and most asthmatics/hay fever sufferers generally put into practice.

However, did you know….

1) Vaseline inserted with a cotton bud inside your nostrils will help ‘catch’ the pollen so that you don’t inhale it into your respiratory system. I use Ayr-a special saline gel for oxygen users it helps keep my nose hydrated as well as catching the pollen.

2) Beetroot Juice!

Yep! Boil up some red beets and snort the liquid-up your nose one side at a time. If you’re having a terrible time with a  pouring allergic nose, this may sound gross and a tad bizarre, but I promise you, beetroot is one of nature’s superfoods and it works!

3) If you don’t fancy having a faint pink tinge to your shnozz, try doing it with saline. How many of you have noticed your nose gets better when you’re swimming in the ocean?

4) I use a Pari nasal irrigation kit (see the top picture) and their nasal salt solution (Montesol) to wash my sinuses out daily-sometimes twice a day. It has a really soothing effect, and helps thin/lessen the nasal discharge. You can buy these sorts of things OTT although mine came from the hospital.

Sadly, all of these things take time, the one thing most of us don’t have much of. But if you try a combination of any of the above hopefully you’ll find what helps you out.

….But if you can’t beat the pollen, try a space helmet instead….

The Blog is Back!

May 21, 2010

…I didn’t disappear, I’ve been talking to you all on Twitter!…

My Lung Life Lurgyiness and Manic Mozartian Musicness have just overtaken my ability to blog regularly. But people have been on at me to get back to blogging and so here goes!

This is the list of blogposts I should have written-invisible blog posts for the moment-until I do write them. And the plan is for you to pick what you would like me to write about-not so much Blog Food-more a Blog Recipe Book. Should help me get back on my blogging feet and for you to be filled in with the last 2+ month’s ‘life in the days of”

1) A Holiday with Oxygen. From flights to hotels. It’s complicated!

2) Desert Down Time-Sand Storms and Volcanic Ash clouds!

3) More Muscle Problems. This week’s struggle with a pulled muscle in my back and  in semi-spasm and lungs that griped in sympathy!

4) Fit to Fly? Charting my recent experience of Body Plethysmography, ABGs and the diagnosis.

5) Air Trapping or a load of Trapped Air?

6) Evil Pollen Particles and the ways I try to beat them!

7) Living with Coeliac. How to eat GF (or not) all too often in my case.

So come on, Guys, you’ve prodded me to get back in to it. I’m open to offers with what you want me to write about.

I’ll continue to update my swimming and lung stats and sidebar stuff and I’ll update my musical projects with what I’m rehearsing as well as what I’m teaching.

…it’s nice to be back!…