Foggy Birthday Party!

…..Yesterday we had an incredible day of thick, cold fog…..

We went to visit my Sister in Esher as it was Oliver’s birthday, and I tried to take photos coming round the M25 whilst J was driving-but you could barely make out the dot matrix boards. The Christmas lights in Ruislip were seemingly invisible as the cloud was really down to ground level.

One of my dear friends, Michelle put this picture online a few days ago and I asked to borrow it.

It gives a really good indication of how fog can affect me. Although we did celebrate Oli-Will’s birthday and managed a very foggy walk around my Sister’s estate.

And then last night, as quickly as the fog had appeared, it went! When we went out again at 8pm to pick up some pizza express salads, it was largely gone. Not soon enough though, given the havoc it played with my lungs particularly in the late afternoon as darkness fell. But a bolus dose of Pred and the air con running on dehumidify all night long has now largely fixed things again for me!

…..And yes, sometimes it is ok to just sit and breathe, particularly if it is really foggy outside!…..

 

 

AB’s Allergy Attack (07/11/11)

…..Who’d have thought our Doglet would end up like this, 45 mins after her annual booster shot…..

Monday 7th November: Injection at 1.10pm. Anaphylactic reaction at 2.00pm

It’s sure looking like she is resembling her Mummy more than ever. And thank God that I saw her face and knew exactly what was happening to her, and that J was able to rush us all back to the vet in 3 minutes. This was only the second dog they had seen with this reaction at the practice and all 4 vets came in to witness AB’s impression of a Sharpei. Thankfully her tongue was normal as was her heart rate and breathing. We were praised for our swift action.

And so our baby dog received IV steroids, IV antihistamine and some sub cut shots of the stuff too.

It started to show visible signs of all going down in about 2 hours and by the evening she was exhausted, but eating us out of house and home thanks to the steroids! And her little pointy nose was nearly all back!

She was re-checked by the vet at 9pm and given instruction for further 1mg doses of piriton and pred if necessary.

How quickly these animals recover from such a nasty episode. Survival of the fittest, I suppose.

…..I’m more than grateful for my own experience with exactly the same allergy, in knowing exactly how quickly we had to react and for Cathy, our wonderful vet in acting so quickly, and not even charging us…..

 

Red v White (Pred of course!)

…..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…..

Airless Indian Summer

…..Its currently hotter here than in Hawaii!…..

And whilst it isn’t hot by some people’s standards, namely my friends in Palm Springs, where it is still in triple digits, our 84F is certainly out of the ordinary-about 18F above average.

We are currently having a really hot Indian Summer spell. They’re even talking  about it reaching 90F later in October! But of course, I keep getting AirTexts about the moderate air pollution levels that are also hanging around.

It has certainly hit my lungs at school, particularly yesterday. I had to indicate to my classroom assistant to instruct my class to clear up after lunch and she had to dismiss them for me as I simply couldn’t breathe. I always teach with the door open, but with no fresh air coming in it was like sauna meets steam room, and apparently we have air con? My lungs love dry desert heat but hate England’s almost Flordian humidity. I wouldn’t go as far as saying I have an invisible illness anymore, it’s rather obvious I clearly can’t breathe at the moment. The guy who came to fix the blind yesterday tea time commented on my asthma “are you really ok?” “that’s the worst I’ve heard anybody?” He must have asked me 5 times if I was ok. But I really was gasping and had just pulled out the sofa bed so he could get to the window easily. Shucks!

Thank the Lord we forked out for our full house air con system this summer. Julian is on Nights and has his bedroom set to 20C which is perfect for him sleeping in the south facing brick front of the house. He has had no idea of the melting pot going on outside all day.

So after multiple extra nebs, a bit of added physio as I was really inflamed and producing more mucous yesterday afternoon (sorry), and a bolus dose of Pred last night, I am ready, I hope, to face a long hot gruelling airless and no doubt very breathless day at school.

All I can do is dose up, and take it very slowly. And keep as many doors open as I can in the educational greenhouse I teach in.

…..Going to be a hot airless weekend out there too…..

The Prednisone Song

…..I guess we can all relate to this one!…..

…..Kind of odd she doesn’t mention in the song that this stuff actually saves lives!…..

 

We’ve all got Hay Fever!

…..All 3 of us are sneezing, even little Anna-Bell!…..

It seems the dreaded summer allergy season has hit Tow Towers all at the same time. Julian and I have got the same symptoms and Anna-Bell keeps sneezing like you wouldn’t believe when she goes in the garden to play!

The pressure is high but we have had no rain so the pollutants and pollen have become down right nasty here. Julian and I have both got these non stop muzzy heads, and sinus pressure and aching ears, plus of course, the sneeziness and wheeziness in my case and itchiness in all our eyes, A-B’s included.

I guess it’s a case of keep on doing the old adages, close those open windows at dusk when it all comes down, wash those net curtains weekly, shower off after being outside, don’t wear outdoor clothes laying down on the bed for a nap (very guilty), and stay out of the outdoors at the worst pollen forecast times.

We are both on Nasonex and A-B is having her eyes bathed with cold water when they get really watery. It doesn’t seem to bother her, but how would she tell me if she also had The Headache?!

It’s been such a glorious summer so far, and neither of us suffer that badly although I have noticed my SATS have dropped and I am currently really feeling much more huffy puffy than I was, so my chest is a bit off it’s recent good norm. I’m almost down to baseline Pred but don’t want to do that last 5mg drop yet as every time I plan it I have a chesty attack and get reminded I probably need more. It’s just a number so I’m not going to beat myself up over one extra red tablet!

…..So I’m off to wash my eyes out again-typing this in the garden has been a challenge too!…..

An afternoon of Tests!

…..So Tuesday afternoon was spent up at the Royal Brompton Hospital having Tests….

Firstly: I had to have my DEXA scan redone as it is 2.5 years since the last one. The amount of Prednisolone I am on permanently and the amount my usage increases during exacerbations deems it necessary to have these scans. My last one showed 29% loss in my lumbar spine and 15% in my hips. I am on Calcium, D3 and Fossamax long term too so I hope this loss has been stabilised.

Funnily enough, it was a job to find comfortable loose fitting summer clothing that had absolutely not metal in it!

Secondly: I had to do some up to date full Lung Function tests. We are aiming to find where my baseline is these days. I had been instructed no Seretide 500 (Advair) this morning and wasn’t allowed a neb for 4 hrs beforehand. Originally we were going to get me in and do it off meds but it was deemed too risky in the light of recent lung infections and asthma episodes. I’d been feeling pretty air trappy all night and was quite uncomfortable but I absolutely gave it my best blows as I am eager to find what is happening to my lungs too. I will get the results next Monday in clinic. It was torture. I got so tired and the glass box was totally stuffy and airless. They finished with regular Spiro and I’m not joking, my technique was crap. They tried everything to get me to do a decent huff but I was just totally malco-ordinated by this stage-an hour of tests left me shattered.

Here I am in the room doing the tests, and in that horrid glass box!

Gosh. So after the scanning, blowing and travelling I am pretty whacked out. And I’ve got school now. And I’m already not feeling that great.

…..I await all results, eagerly-I actually have the envelopes but they are sealed-d’oh!…..

Bad timing lurgy!

….So my cold went South….

Such an annoyance. I’ve kept J awake and he’s been on an exhausting Late shift for a few days. I’m hoping I haven’t passed this to Anna-Bell who has been sneezing A-LOT (mind you, the whole world has hayfever atm!) People are running out of sympathy and disbelieving me when I say I have a ‘rotten cold’ as they are all trying to tell me it’s ‘hayfever’.

S-O-R-R-Y! I know my lungs and I’ve had more than my fair share of lurgies to know this ain’t just a seasonal sneezing thing. Plus I have been running a temperature all week-very, very unlike me.

It’s the Easter Holiday weekend and with Easter being so late this year it’s pants that I’m feeling so rough right when I need to be “all batteries recharged” and ready for school again on Wednesday. I suspect much of this is to do with the fact that with ABs op I have been living off of adrenaline for the last few weeks, and was flat out exhausted from the end of term but didn’t really get to recover from that before we were dealing with our doglet. Never mind.

So it’s Action Stations here. I’m having to fire the “Added on Extras” to my regular “Anti Asthma Arsenal” now.

• Whacking the Pred up to 40mg from NOW!
• Whacking the emergency Antibiotics from NOW too!
• Doing 20mins of Autogenic Draining twice a day (very boring and uncomfortable and exhausting)
• Nebbing the 7% hypertonic saline that my Physio prescribed on Tuesday twice a day.
• Sinus Douching twice a day with Montesol (hefty saline and Dexpanthenol)
• Taking my Carbocisteine 3 times a day from now on, with the extra dose being the liquid form at lunchtime.

I knew this would happen. My Physio on Tuesday said to me I was crackling and sounded really nasal and I knew on Tuesday I had a cold. And like all  gravity, it went South.

And we have a smog alert over much of the UK at the moment, so what chance have I got of shaking this off easily?

….Bad timing lurgy or what?….

Dial-a-Dietician!

….Or maybe that should be “Natter with a Nutritionist!”….

So it was 9:30 AM on my birthday morning and I was just thinking about getting ready before my coffee party and my Parents arriving, and the phone rang. Turned out it was one of the Dieticians from the Royal Brompton Hospital phoning me for a ‘then and there’ consultation. She started by asking me my date of birth so I said “today” and that sort of made her laugh she asked if I could bare to have a phone consultation on my birthday and I said “yes”! She understood that is virtually impossible for me to get to a clinic appointment at the moment. They only hold Dietetics clinics once a month on a Thursday morning and that’s no good because of course I am always working.

So she asked me lots of questions about what I eat and my typical breakfast, lunch, dinner, snacks, drinks etc, and she tried to calculate quickly how much I eating calorie-wise, fats-wise and with my height and weight what might bmi is.  Apparently it is around 16 which is really much too low. She then suggested that I need about an extra thousand calories a day on top of my normal food intake, but I just don’t have the appetite or stomach space to eat that much more and therefore I need to replace this with supplemental feeding. This is what I have been doing for the last 5 to 6 years although for the last three months I have been off my feeds because I have been trying to reduce my cholesterol and concentrating on eating low-fat

Whilst this has been beneficial in reducing my cholesterol from 6.99 to 5.14, it has also reduced by weight by about 5 kg. We went through all the things that I should be eating ie more of the good fats like monounsaturated fats, olive oil, rapeseed oil almonds and walnuts. And the things that I used to eat on a high fat diet before I realised my cholesterol was bad, such as butter, whole milk and the saturated fats. I do like and eat a lot of oily fish fresh tuna, salmon, and I’m now going to try and have sardines and I’ve been told to have as much honey, jam and sugar as I can because that is good calories but no fat.

And at last I can have my supplements re-added to my prescription and therefore my diet. I used to have Scandishakes and Ensure Plus milkshakes but they have a lot of fat in them so I’m now going to have Ensure Plus Juce-lemon and lime flavour as that is my favourite.

They are pure carb calories and sugar calories but no fat and I am going to be having two a day of those between meals. We are also going to take away my Pro Cal shot as that is all fat, and replace it with  three shots of Polycal Liquid which will give me 270kcal per 100mls.  

If I have three shots of that a day it will give me an extra 300 calories and the two  Ensure Plus Juces will give me another 660 cal so that is very nearly the extra 1000 calories that I need. 

So why do I need all these extra calories unlike everybody else when I’m on long term Pred? And, as you know, I’m the opposite of overweight. Plus I’m not exactly over active either- in fact I’m pretty sedentry at home in my own environment and I also ride around on Scootie at school as I cannot walk large distances because I get so short of breath.

So why am I burning all these calories?

Well, My body seems to react in the opposite way when I’m on Pred. The drug seems to cause me to have a diminished appetite.  and I actually prefer to eat things like salad to biscuits and cakes anyway. However I have a bad cough I have coughed  constantly for about the last six or seven years and because I cough so much and my cough is always a productive one, I am burning up a great deal of energy and calories just coughing and producing sputum. 

Have you ever wondered why severe COPDers are often very thin?

Well that’s me. That’s my lungs. That’s where I do fit the mould. 

The steroids have also caused a degree of myopathy-muscle weakness and wasting, so my body has changed for the thinner not the fatter. 

I wish it would all go away but of course it’s not going to. I’ve enjoyed eating more normally for 3 months, bit I’m looking pretty darn scrawny now. 

And my dietician thinks I’m probably one of the people with a predisposition to high cholesterol unless I can stick to eating the right things. Hence the fact that I can’t just go back on my High Fat butter dairy ice cream regime.

We will test my cholesterol again in another 3 months after starting the new supplements. Hopefully I will gain and maintain a little weight. That in turn will improve my Lung Function and immunity to germs. I seem to have gone down with every bug going recently because I’ve just got no reserve. 

….But first my Dietician has to write to my GP telling her all this, and that she’ll need to prescribe my supplements. I hope this happens without there being a spanner in the works!!….

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?!….