Xolair = Game Changer!

Good day to you all on this beautiful sunny summer weekend - how are you all doing??  I haven't blogged for a few months as I wanted to see how my health would be doing.......... and guess what?  It does indeed look like the Xolair and a different approach to life is working very well! 

I've noticed on Social Media sites a tendency for some people with a chronic illness (any illness, not just Asthma) to have a passive/aggressive approach to how they talk about themselves when unwell. A bit of 'I don't feel well today, but you all enjoy your day' type stuff??? But I've always tried to shy away from that and those sorts of people, and be as positive as possible about having Asthma and trying to be as upbeat as possible. 

If I'm ill then I'm bloody ill, I'll be as miserable as shit and I won't want to talk to anyone but I firmly believe positive mental attitude is half of the battle. 

So how have I got here?? Well after my conflab with my Consultant in April and the mega self pitying cry in my car afterwards I went into my shell for a day or two while I processed what we'd discussed and as usual my inner stubborn 'fuck this' came to the surface!  "Right! If I do exactly as he said - to the letter - and I'm still unwell, then no one can say I've not tried"! See - stubborn independent bugger aren't I! 

Well guess what...................... 3 months with no Ventolin, no little bastard steroids in 5 months, I'm back to 13/15 thousand steps a day with my puzzled dogs! Puzzled because OH has been walking them whilst I sat and made excuses, now, its 'WALKIES' at all  sorts of odd times of the day!                                              

I take my medications religiously, I've at last - long last - learnt to listen to my body. If it tells me I'm getting too tired, then I get my book, a coffee and sit a while.                                             

I'll stay in bed that extra half hour or just go to the beach and stretch and take in the sea air. I've let go of much of the stress in my life by delegating work tasks, I accept that there will be times I'll feel stressed (mostly because of work - I'm self employed) but those times are less and less.  

I've been able to return to work but even an evening shift of 3 hours on my feet especially in the summer heat is more than enough, but the boss is very understanding and lets me go when I want to go. Just as well I'm my own boss! 😍 

Luckily retirement is in 107 days (No! Not counting at all) and then an even more relaxed approach to life.  But now we can go back to planning travel - our original plan, but one that got put on the back burner because of my Asthma playing up so badly!

                                               

Friends and family say my sparkle is back..........But best news of all is that following a change of licence for the medication & after 2 months training and guidance with Staff Nurse Kate at the Chest Clinic, I am now able to inject myself at home!!! No more 2 hour round trips to the hospital every month. But that doesn't mean I'm not incredibly grateful to all of the team at the Chest Clinic at Derriford Hospital, it's so important to have the knowledge that a great team of people have your back and are always at the end of a phone. I know I'm incredibly lucky compared to many around the country. 

Anyway, I did my first lot of injections yesterday and despite shaking like a leaf, I did it and it was fine!!! I had to sit down with a cup of tea afterwards and calm down, but I DID IT!!! 

So, I've taken back control of my Asthma, and this 5 months is now the longest I've been out of hospital in 2 years! I can regularly achieve 450 on my peak flow, and as my consultant said last week, we now just sit and watch. 

Well, I've absolutely no intention of sitting and watching - I'm back in charge of my body and it feels great! Watch out world, my sparkle is back and the crown is firmly on! 

Now where's all those travel books I shelved........................💝

Laters my dear friends, 

Liz x x x x

Leaving on a jet plane? Not likely!

Ok - so one minute I'm bowling along. Fitter than I'd been for a long time, happy in my own skin. Taking very few Asthma meds! Happy as you like on Xolair, breathing well, forgetting I ever had Asthma, literally skipping along with the dogs and then the great winter snotty cold started in our house. Bit dizzy, bit of vertigo meant I was feeling a bit odd but it'd be ok. 

I can't be ill anyway, we're off to Barbados for 3 weeks in the sun. The cases are out, the clothes are sorted, I have the dollars to prove it. It's just a cold............ 

No wait! That cough is starting to feel more than a cough - it's starting to feel like a proper poorly chest! Oh for buggering hells sake - it can't be!!! 

Ok - if I can just get to the airport and blag it on to the plane at least I could just be a bit poorly on the beach? Couldn't I?? Mmm Google tells me it's quite dangerous in reduced pressure for asthmatics - maybe not such a bright idea??? But I'll give it a bash for sure. 

Nope - Monday morning the day before we flew OH had to drive like a bat out of hell to get me to hospital. Delightful clerking Nurse said I wasn't breathing properly (no fecking shit) and should drink water!!!! Luckily assessing consultant though it was slightly more serious! 

The merry go round started of drips, injections, back to back nebulisers. Maybe its flu? You're having a laugh right?? Not again surely? No it wasn't. It's a viral asthma exacerbation. 5 days on the wonderful Hexworthy Chest ward with a real dodgy turn on the Wednesday but out again Friday - feeling a little bit better. 

Perhaps we could get 10 days in the sun...............?? 

Nope! Rapid deterioration over the weekend meant a 'blues and two's' ambulance journey with advice from the hospital as I quickly deteriorated en route. This time no offer of water just a swift removal into resus where the FEAR entered me. The dreadful terror that this was definitely it this time!

No virus this time. A full blown lower lung collapse accounted for a breathing result of a quarter of what it should be! No wonder I felt so ill. Yet again! 

Another week on Hexworthy ward where I'm on first name terms with all the nursing team and I could write all day about their kindness, care, skill and love.  The amazing Sister Ali commands such respect and my undying love for her approach to me, as well as the Emily's, Rosies, Kristys, Karens, the Nat's and the Jaia's, even Josh (a real sweetie!) who every day do their level best to ensure everyone is cared for and nurtured and nursed to the best they can be. 

A mid week visit from my son gave me the chance to air fears and concerns and his loving common sense lodged a place in my brain. But the Mummy hugs worked more! 

But I could still get a week of sun couldn't I??  No I can't. 

I'm home to recover in my own bed now getting updates from our friends who we should be with but grateful that I'm here at all. 

To the Nurses and Drs and cleaners and housekeepers and clerks and volunteers and the Therapy dogs - thank you so very, very much. 

I have no other words to say but Thank You, 

As for Barbados?? I hear its not going anywhere! 

Liz xxx

(Still here and breathing) 

A normal life?!!

I've been delaying this post tonight. Why, you say?? You are saying that, right??

Well, I started this blog this year after some of the worst respiratory health I've ever had. 

I've been a person with asthma for about 40 years. It's been good, bad and indifferent and then for about the last 2 years its been absolutely shite! This year more shittier than any other time in my life. I had no life, it was being controlled by the bastard thing called Asthma. I'd even double checked my will at one stage! 

I've been blue lighted in to hospital 3 times this year and the last time my gorgeous Husband (see photo 😍) didn't even phone for an ambulance he just drove like a bat out of hell........... (no speeding tickets thank the Gods!), where a wonderful hospital receptionist took one look at me said 'don't speak' (I couldn't) and got me seen straight away.  I escaped ICU this time by the skin of my teeth!

So this time, I had to think very seriously about the offer of Xolair injections. For those of you that don't know (I'll try to keep this simple) 

• A person with allergic asthma (me) breathes in allergens like pet dander, dust,pollens etc etc (in my case a fair list) 
• In response the body makes (wait for it) Immunoglobulin E - IgE 
• When the allergen is breathed in again, IgE attaches itself to the allergen and the surface of inflammatory cells (hang in there) 
• This little sod releases substances that may cause narrowing & swelling of the airways (inflammation) 
• Its this inflammation that can cause an Asthma attack 

So, my consultant and other health professionals (yep, there's a clue for know it all me - professionals!!) for the last 2 or 3 years have been encouraging me to think about having these injections (Omalizumab is the correct name I think?!) 

These injections are designed to capture most of the IeG in your body, therefore blocking the role of the IeG that would lead to the Asthma attack. Hopefully, that's a correct interpretation.  

But nope......... not for me. I could control this wayward Asthma with diet/exercise/meditation/hypnosis.....!! No actually I couldn't! (no shit - really)! I think all of the afore mentioned helped in as much as I wasn't (quite) so fat, not (quite) so unfit, not (quite) so stressed! 

So after hospital stay number 4 some 5 months ago, I 'gave in' and said oh go on then - not much to lose, except for my life! (always prone to melodrama 😊😊). 

Therefore, I can be found once a month having injections in each limb. First 2 months I found little difference (apart from my ability to navigate the roundabout near the hospital) and then little by little, I've realised how 'normal' I've started to feel. Now 5 months on THIS has happened: 

• NO ventolin for over 2 (yes two) months
• NO oral steroids AT ALL 
• I have had a cold and it STAYED JUST A COLD

Go me, go me, go me, go me!!! I should add, I'm still on my preventative inhaler though - although less of it. 

Now then?  Why was I reticent to post this. Well I have this weird fear that somehow I'll put a hex on myself (told you - drama), but more importantly this treatment isn't for everyone and I know for some people with severe Asthma this might just be a kick in the teeth - 'oh bloody good for you' - I imagine being said through nebuliser mouths........ I really appreciate from other Asthma blogs how difficult their lives can be - so I didn't want to be seen as smug. 

But I wanted to enthuse anyone who may be agonising about whether this treatment is for them. 

I also wanted to say Thank You to all the respiratory team at Derriford Hospital who hung in with me when my size 7 heels dug themselves in, and gave me the space to decide for myself. 

To thank Staff Nurse Kate who jabs me with glee (joke!) every month - we have a great medical relationship and I feel I can talk to her really honestly. To Sister Bev who rules (🤣) runs the Asthma clinic with a humour and gentleness that makes it a great place to visit so regularly, (and always greets us regulars with a smile and a little chat) and all the team in this unit who I feel have become more than just staff who look after me. 

Thank you to Sister Ali on the respiratory ward Hexworthy and all of her wonderful team - you're all bloody brilliant up on that ward, but, maybe, just maybe I won't see you for a long time (fingers well and truly crossed)! 

I will update this blog in a few months time and lets hope that the person in the top photo is still smiling and enjoying life! But in the meantime, I'm just going to carry on re-finding that thing called normality!

In the meantime dearest readers, I wish you all a peaceful, healthy and Happy Christmas. 

Liz x