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…..

 

Rachael Wakefield RIP

…..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!

…..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!…..!

Can Chihuahuas help ‘Heal’ Asthma?

….Well, I guess everybody here knows we now have our longed for Chihuahua….

But I’ve been totally bowled over by the amount of information-well, heresay mainly, or folk lore if you like, that I’ve been reading lately, saying that Chihuahuas can actually help ‘heal’ people with asthma.

Sounds completely intriguing for somebody like me who suffers to such an extent with asthmatic lung disease, and I hasten to add, this was not why we wanted a Chihuahua and actually, I’d never heard any of these reports before now!

Whilst there is of course NO MEDICAL OR SCIENTIFIC EVIDENCE to support such claims, we have had our little girl for just over 3 weeks and I can already attest to feeling ‘better’ in many ways-some by chance, physically, but especially emotionally.

• I spend a lot of  time stuck resting indoors with my illness-something that in turn can and does get me down.
• My Chihuahua is very good company and an excellent playmate and does not require me to use a lot of puff playing ‘fetch’ with her at the other end of the room.
• Chihuahuas are cold by nature, and like to keep themselves close and snuggled up to their human companions at all times. This is so gently comforting and forgiving and purely unconditional.
• I no longer feel lonely when Julian is at work, or isolated when my chest is rather off or my head is exploding. She doesn’t even flinch when I cough-and boy do I cough!
• When she lies on my chest for a cuddle, the warmth from her tummy is quite incredible, like a personal living hot water bottle. This is 100% soothing for my aching, coughing, spasmy asthma ridden chest muscles.
• She is giving me something to focus on besides my health issues. This has had an immediate calming effect on the both of us.
• She does so many funny things I can’t help but smile even when I’m feeling really grotty.
• She is the most incredible source of emotional support for me-already!

Of course, whether we sufferers really admit to it or not, Asthma has a very strong psychological weight on its causes. And just as pets can help psychologically by giving and receiving love, they might help in dealing with asthma. Chihuahuas are just so loyal to their owners.

As far as Julian is concerned, and he has had a horrible long lasting virus of unknown origin since last summer and has been feeling so very anxious and totally rotten, I can already see a difference in his wellbeing. Again, nothing scientific, but I do know that his anxiety has already decreased, so however/whatever- it works!!!

Bizarrely, this will the first Easter break in over 10 years that we have not been planning a trip to Palm Springs, California. And Jeez, do I feel relaxed about that. When there were just the two of us and of course, we have no children, life had become one great big selfish existence. But now we have somebody else to think about all the time instead. It is such a breath of fresh air! Plus, it’s been one totally big bad Winter health wise for the both of us and this dog has got us firmly grounded in one place caring for her and not just routinely and expensively travelling half way across the globe. Yes we need a holiday, but we are going to have a few days break here somewhere we can take her with us, like a proper Family. We will all be able to bond, love, heal and grow in strength on home turf. Julian and I just aren’t up to it and Anna-Bell needs us at the moment, 100%. In that respect, she IS curing us of lots of our stresses and strains. Planning and undertaking foreign travel is not for the faint hearted, and we both feel pretty awful at the moment. God moves in mysterious ways, I always say.

Did you know: Even though Chihuahua’s are the most hypoallergenic of all dog breeds as they have so little hair, no dander and shed very little, if at all, in an English climate, they do sometimes have respiratory problems and may make wheezing sounds similar to asthmatics. How funny is that! Ours does, and it takes us by surprise-maybe she is just copying me, who knows?! We keep remarking she sounds coldy like me-and she snores!

Whatever: Whilst our little Chihuahua makes an excellent pet and a loyal friend for an often housebound asthmatic like me, she is not a substitute for my long-term control medications, quick-relief medications, allergy treatments, and steroids! All of which are in my daily arsenal for asthma care and avoidance! Remember there is no medical or scientific proof to the above.

….I leave you to sum up your own thoughts. There is loads on the www, it floored me that such a little dog could be so important and so healing: something first documented by the Aztecs. Amen to that….

Lemony Lungy Lust and Love!

….I crave lemons! The taste the smell, the zest, the juice-pure Heavenly lemony bliss-and, it seems, they’re good for my Lungs too….

Right from the year dot, way back in my oboe playing days I was told to think of ‘Opal Fruits’, you know, the soft candy that was “made to make your mouth water” when my embouchure went all dry, playing in hot auditoria. And I still adore all citrus fruit now. Whether it’s because it keeps my arid mouth and throat moist or the whole Susannah psychology that the astringent effect of lemons is somewhat cleansing to my cough, snot, mucus and even maybe, asthma condition, or whether I just like them, who knows! My Mother, another migraine sufferer told me her mother, my late Grandma, used to give her a raw lemon to suck to induce vomiting when she had a bilious stomach. Interesting philosophy there, Granny! In fact, I like raw lemons and sometimes just suck one as they have such a lubrication effect on my mucosa (lining of the mouth!). We are all different. I don’t think though, that with my reflux condition I could even eat raw lemons if it weren’t for a 20mg dose of Nexium twice a day!

Lemons are just so refreshing, and even in the middle of winter. Cook a roast chicken with lemons inside-wow! Add lemons sliced finely, to a prawn pasta dish-such zing. Add some lemony syrupy slices to a plain Angel cake-delicious and refreshing. Start your day with a cup of lemon slices in hot water-very Zen Spa Hotel-ish! Or as I do, a caffeine free lemon tea with a slice of lemon in it!

But did you know, lemon essential oil is an expectorant and encourages the airways to expel mucus. It’s not just drunk with honey for a calming effect therefore, when you have a cold or flu type lurgy. It’s scientifically proven and is in just about every single cold and cough remedy, therefore, for a purpose! I recently read about a five year study of over 60,000 people in Singapore, which found that a diet rich in lemon fruit fibres discouraged chronic coughs. (Just imagine what I’d be like without my lemons then!) Researchers suggested that the antioxidant effects of flavonoids found in lemons may protect the lungs from inflammation and tissue damage.

Take Action Folks!: Make yourself some homemade old fashioned lemony lemonade, add lemons to your cooking-they are even delicious roasted with your winter veggies. Use zest and juice instead of adding salt for flavour. Inhale the vapour of lemons and their zest over boiling water if you’re really stuffed up. Much more gentle than the astringent eucalyptus oil type products.

….Let’s see my friends and readers positively lusting after lemons. Add a little to your life, they’re so lovely, and very good, it would seem, for your Lungs!….

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!

Bex. RIP. A Tribute.

….I had some very sad news on Friday evening….

Becky Harvey, Bex to those of us who knew her, was a good friend for 5 years. She sadly passed away at her home in Devon yesterday morning, peacefully. I met Bex as we were both patients under the same team of Lung Doctors at the Royal Brompton Hospital. She had severe brittle asthma and used to cause them a merry song and dance trying to sort out some sense of stability in her condition. She was a lively intelligent person-the same age as me, but also the Mother of four teenagers.

In the last few years Bex had gained a myriad of serious health problems on top of her asthma. A severe, life threatening problem with her bowel nearly led to her demise, but after 5 months in hospital she pulled through. Bex had a wondeful network of Family and Friends caring for her, which she really needed, but she still insisted on doing anything medical herself, needling her port-a-cath, injecting her many drugs, flushing her IVs through. Bex was quite a pro at everything she had to deal with.

Her sense of humour was something I latched onto-that sense of not wanting to be ill and desperately trying to ‘crack the code’ and beat this illness. Bex was a dab hand at the Times Crossword. I remember having a competition with her once when we were both in patients at the RBH-we tied-we both couldn’t get the same answer!

On another occasion, I was visiting her in hospital and was so wheezy that when the Drs came in to see her they ended up carting me off, and low and behold I was admitted too. I always thought she’d secretly arranged to have me abducted so we could have fun together!

And another time, fearing we would both be in for our 40th birthday’s we decided to plan a joint celebration on the ward should that happen. It kept us going-dreaming of filling IV drips with champagne, which she loved.

Well, dear Bex is now breathing easy and drinking champagne with the angels. Se will be sorely missed. A larger than life personality, she was also, even with her extreme illnesses, a moderator on Asthma UK, an enthusiastic football supporter, a campaigner for the Liberal Democrats, and a Pagan!

My love and prayers go out to her Sister, Jo and her 4 children who she leaves behind so prematurely.

She is at peace from her illnesses now,

….But I know she’ll be ramming a few ankles in heaven with that electric wheelchair of hers….

12 of 12: January 2011

…. So here follows my series of 12 photographs taken throughout today, the 12th of January, 2011….

This is a School Day for me-something my last two 12 of 12s have not been able to show as I was off sick for that chunk of time in the run up to Christmas.

I hope all of you reading have been having a Happy New Year so far!

Enjoy!

1 ) Took My Early Morning Meds at 5.15am today. New regimen is to have a Benecol yoghurt with them. I’ve recently discovered my Cholesterol is too high so we’re tackling it the Benecol way!

2 ) Packed my bag ready for School-had to remember that I’ve got Choir before school so dug out my long lost hymn book and Choir music books.

3 ) I arrived at school at 7.30am. The dark wet morning made it look surprisingly Christmassy for mid January!

4 ) And school was so eerily empty at that time.  I had to sit outside my room on Scootie waiting for my key possessing colleague to arrive.

5 ) 8am. Choir in the Chapel was eerie and dark too as I was 1st to arrive. But I noticed the way the light shines through the wonky cross on the wall and thought it looked quite magical.

6 ) The music in choir is really great. We’re doing a gospel arrangement of Bridge over troubled water and this excellent Beatles medley which they started before Christmas and were singing really enthusiastically.

7 )  11.50am. I popped  home during period 3 for my lunch. It is too much for me to do the whole day without a decent break and so my time table is adjusted to allow me a ‘time out’ slot to rest and take my meds. I therefore just eat anything on a school day, and often at a strange time. I  quickly nuked this tin of Ratatouille and warmed my stat GF roll!

8  ) 1.55pm. Meanwhile back in my Period 4, Year 8 lesson introducing Indian Music, I was wrapping up our Raga work and promised to play them a youTube clip (always a treat) as they had worked so hard. They were fascinated by the speed of this Tabla players hands!

9 ) 2.50pm. Period 5 I was rehearsing with Emily. We played through her Suite Antique by John Rutter. It was so hot in the room and I was really struggling with my asthma, coughing every bar. Darn crazy air system!

10 ) 3.20pm. Julian picked me up from School and we dived straight into Waitose as we needed to do a biggish shop. Unfortunately the cold classroom/hot classroom/damp air outside had set me off something more than just a little bit and the flowers in Waitrose only added to it. I stood here taking my picture, sounding like I’d just smoked a packet of full tar. Embarrassing, yes!

11 ) 6.35pm The bath photo! I am currently using my Christmas gift bath smellies. The yellowy sprinkles on the bubbles are from Marks and Spencer. They are lemony fruity zested bath caviar sprinkles and wash off you like soap. Makes my bubbles more fun, plus my glass of wine and olives!

12 ) 7.40pm. Julian put himself in charge of supper. We haven’t had a take out ‘healthy’ kebab in ages so he went to Taste of the Mediterranean in Eastcote to pick these up. Mine (on the right!) is an Adana kebab-spiced lamb with  tomato sauce and greek yoghurt. J’s is a chicken and lamb shish. Plus he ordered some humus. A delicious end to a long school day. I’ve been up since 5am!

Night, night and see you next month!

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

((….Thank you, Chad for agreeing to do this for another year! ….))

New Year Nitty Gritty

….Is it just me or did Christmas go by very quickly this time?….

I just asked my Mum this and she said she thought it had been a very long Christmas and that she had been loving all the carols on the radio since the beginning of December. But I guess that’s just it-I kind of missed most of the build up as I was so poorly for those weeks. I didn’t actually hear a carol until King’s on Christmas Eve.

So this week, on Wednesday I have to get myself back in to school mode and have to attempt to pick up the pieces where I left off, on November 11th. There is no point trying to finish off the modules I left untaught: I totally believe in new beginnings, and from experience of when this has happened to me before, I also know there is vacant time at the end of the academic year to fill with things that got missed out!

But there is something People or Doctors don’t think about or understand here. When you live with a chronic condition or a long term health problem, you often find yourself fluctuating between periods of total inactivity-in my case 6 weeks of bed rest with my recent chest problems-and a kind of flip side ‘normality’-in my case, the now having to find the energy and confidence to be back at work. I’m now not sick-I am over the lengthy infection I had in November/December, but I still do not feel anything like ‘well’ enough to be working full on, and all out.

I am suddenly realising the reason I felt ‘well’ over Christmas was because I was home, in the warm, padding around in my new Totes toasties slippers, on soft carpet, with the luxuries of flopping on the sofa for a breather, the bathroom whenever I wanted it, and of course, the luxury of rising without a morning alarm. I did a trial run of getting up at 6am today, but I’m back in bed now at 9am and still in my PJ’s!

Whilst I am somebody who functions best with routine in my life, my life’s routine for 2 months has been one of hardly getting dressed much before lunchtime and even on days when I have been ‘well’, ie recently, still needing a nap or at least a period of resting on the bed later on, and certainly, all done with the minimum of exertion. Julian has been supporting me through everything, because I’ve needed this-we have done the little daily tasks together, shopped, cleaned, visited, and all because I am still quite weak physically, and emotionally.

Tomorrow I have to see my Doctor to be signed back to work. Like I said, not ill, therefore, apparently, Fit! There is no half way house. Either I’m sick and therefore not fit for work, or I’m not sick therefore fit for work. Amen!

The trouble is, I’m only just now feeling confident enough to venture back into my life before I was sick in November. But by Wednesday I have to be fit and well enough to pick up where I left off before then.

This New Year has been a toughy for me emotionally because of it. I’m not sure I’m ready yet to pick up where I was 2 months ago, and it’s making me realise, that I might not be able to play this survival working game much longer.

Do I need to work? What would I do if I didn’t still work 3 days a week? IS there a guarantee that my health would be any better off without this pressure? (No, Don’t know, and Probably not!)

So, it’s roll on Wednesday for me here. Yes I am looking forward to it-to my old life, to my pupils and to seeing my lovely colleagues again.

….But I think I’m going to struggle to keep my head above water for a while yet. Please bear with me….

 

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!….