Happy Hallowe’en Weekend!

October 29, 2011

…..Well, all things here have gone Hallowe’en bonkers too! Something else we have to thank the US of A for!….

So my friends, readers and family, have a great Holiday Weekend. Please be safe with your young ones out Trick or Treating. I have a stack of candy ready to give out so please don’t flour bomb our nice shiny new black cars.


Anna-Bell says:

“B E W A R E   O F   T H E   S C A R Y   C H I H U A H U A!”

…..And if a black cat crosses your path, don’t forget to make a wish!…..


Rachael Wakefield RIP

October 27, 2011

…..The lung disease community lost another bright advocate, patient, transplant recipient, and above all, friend, yesterday…..

Rachael was only 23.

I knew Rachy in person since 2005. We had been in the Royal Brompton Hospital several times together. Me with my extreme asthma and Rachy with her ILD (interstitial lung disease).

Several times when I was quarantined due to MRSA she left chocolate bars and notes for me outside my door. We became good friends whist ‘in’ and regular online friends on Facebook whilst ‘out’.

Her extent of lung disease was complicated and extreme. My asthma is humbling in comparison. She underwent a double lung transplant but suffered complications and rejection. It bought her another year and a half, but for the last 3 weeks we have known Rachy was gravely ill and awaiting her stairway to heaven.

She is up there now, breathing freely and deeply, out of pain, out of suffering and smiling from one side of her face to the other. There was no greater advocate than Rachy for organ donation. If we could all do one thing to make her life worth it, it would be to sign the organ donation register. It only takes a minute. Please sign your register, whatever country you are from.

The UK one is here: Please Register NOW!

Rachael’s life was Anything But Ordinary. Her blog can still be accessed. It truly is moving reading. Her epitaph should be her own words: “I’ve been through more in my  23 years of life than I care to even admit”

…..Rest in Peace, Rachael. You are the brightest star shining in those new Angel Wings. We will all miss that cheeky smile…..

Bunged up Bubbles!

October 26, 2011

…..This is one for Home O2 users who use a Bubble Humidifier…..

  1. Don’t use tap water
  2. Change/thoroughly wash/scrub out the bottle weekly
  3. Check the O2 flow rate is exact.
Yesterday afternoon, I had to call out the O2 Engineer. Julian discovered my O2 concentrator wasn’t giving out the right amount and the flow rate I’d been breathing the night before last actually wouldn’t go above 1LPM. Disaster. It made me think was this the reason as to why I have been feeling so rotten every morning for more than the last week. Maybe what I thought were CO2 headaches were in fact lack of O2 headaches, like I used to get before I went onto overnight O2.
The long and short of it was that I hadn’t been changing the bubble humidifier bottle and I had been using tap water in it.
Two No-No’s!
So the tubing in the bottle was lime scaled up, and the flow rate was radically decreased due to the bunged-up bubble humidifier tube.
We also checked the O2 tubing (50ft round the top of the house) wasn’t kinked, and it was all fine. So the solution was easy!
  1. Change Bubble humidifier for a shiny brand new one (see mine above!)
  2. Put distilled water in it
  3. Tell Susannah off!
  4. Provide Susannah with distilled water and a bunch of new bubble humidifiers.
  5. Lecture Susannah about not doing this again!
…..And the result-A good night’s sleep on the correct flow rate and waking up without a headache!…..!

Celebrating Jonny’s Birthday

October 25, 2011

…..A great day was had by all on Sunday at  Elbury…..

We all gathered (a week late) to celebrate Jonny’s 27th birthday. My parents were fresh back from California and my sister and I were happy not to be worrying about school this week as we are now both on half term.

It was beautiful weather and we had lots of fun and a lovely walk over the common in the afternoon.

…..And everybody got a lovely cuddle with Anna-Bell!…..

Ciggies for Wheezies?

October 20, 2011

…..I can’t quite believe this poster! And I’m not entirely sure I’m supposed to!…..


Whilst, I whole heartedly love watching TV Series such as the BBC’s Victorian Pharmacy, I don’t remember having seen such a cure advocated or advertised. If only asthma cigarettes were truely a cure! There’d no doubt be a lot less wheezy smokers or COPD sufferers out there. And at a time when everybody is advocating a ‘smoke free’ lifestyle too.

I particularly love the ‘Not recommended for children under 6’ line!

I suppose back in the Victorian times children did pick up the habit very young. Oh Well, that’s history!

…..I hasten to add though, that I think I have got wind that this poster was a spoof from a campaign in the 1970s. You may even know the truth behind this? Interesting talking point though!…..

‘Mugged’ of air by Mist and Fog!

October 17, 2011

…..We woke up to a right pea souper yesterday….

Of course, the temperamental bellows knew what was out there even with the curtains drawn and every window in the house shut. I guess it comes in through the CO2 vents in the windows! AB wasn’t amused either-she sneezed when I took her out at 5.45am. We had to get up early. I was driving J to work at 7am-something which turned into rather an adventure in such horrid driving conditions. I had to get out the manual for his car as I didn’t know how to switch the fog lights on!

And all the way to the BBC, the lungs were protesting so. J sounded like a record getting stuck “You need a neb”  and “Promise me you’ll have a neb as soon as you are home” turned into “Make that a double neb, please!”

Actually when I did get home a little after 8am, I ended up on a triple neb whammy, a double ventolin plus an atrovent and then a super seven percent saline one and a spot of gunk clearing physio.

Fog is my worst enemy.

Forget Floridian Humidity, which in itself finishes me off, Fog is evil, with a capital E.

I may have done my good deed for the day in driving J to work to help him, but silly me, I didn’t exactly help my lungs in time. And then spent the day in bed, accompanied by my mini Furry Fajita who herself does not appear to like the Fog either.

It did lift mid afternoon-my friend Tasha saw to that by single handedly blowing it away, all the way from Holland 🙂 😉

Today the fog is lesser this morning-but I took the time to wrap a scarf around my face before I entered into the great beyond to water the dog at 7.30am. Thus doing a wonderful impression of a burkha woman.

I’ve had a rather broken night-up twice for nebs. Oh how these little barometers do annoy me so. I’m in for a bit of a duvet day again here, no doubt.

….Reckon the time of year has arrived to dig out all the scarves and gloves!…..

Red v White (Pred of course!)

October 15, 2011

…..I am shocked to find this out today…..

A friend has just alerted to me that red Pred is no longer being prescribed in the UK and we are all to be given white, ie, non enteric coated pred tablets.

On the one occasion I have been forced to take white rather than red Pred- ((when I had a prescription mix up in hospital)), I suffered such excruciating stomach cramps on it that even a quadruple dose of Nexium did nothing. I am so shocked to read that as part of the NHS’s cost cutting we are all going to be switched to the horrid white monster pills instead of the red coated ones.

I quote: “Red Enteric Coated Prednisolone tablets currently cost £8.69 for 28 tablets of the 5mg strength, but the uncoated tablets currently cost £1.03 for 28 tablets of the 5mg strength. The current financial climate means we have to look at every area to ensure value for money without compromising the care and treatment we provide to patients.”

Well if my Dr now abides by these rules and goes ahead and makes me take red not white Pred, then my care and treatment will be compromised, not to mention how much more Nexium I am going to be needing!

They are also saying that the red enteric coating prevents complete absorption of the drug. What? So why had this only been discovered? Many, many tablets come with enteric coatings, not just Pred.

I quote: “There is evidence that has shown that prednisolone enteric-coated tablets (like the ones you are taking) do not absorb as well into the bloodstream as ‘normal’ uncoated prednisolone tablets. In certain medical conditions it is really important to have sufficient levels of drug in the bloodstream to allow that medical condition to be controlled consistently. In the past it was suggested that the E/C tablets protected the gut from indigestion, peptic ulcers and perforation. However, to date there is a lack of evidence to suggest they provide any more protection than the uncoated tablets.”

I can forsee myself having a battle next week when I re-order my monthly script. I am currently having stomach issues on 50mg of enteric coated Pred, try giving me the plain white ones and my poor tummy will be screaming blue murder.

…..Ho hum: And Oh how I dislike change, of any sort…..