Madrid with Astra Zeneca

Since getting involved in asthma advocacy and involvement in research I have also been part of the Astra Zeneca Patient Partnership Program (PPP) for Asthma. I do a huge variety of things as part of this program to help Astra Zeneca with their work to improve the lives of people with asthma. This can range from being part of teleconferences discussing potential projects, reviewing information booklets, education materials, or global virtual meetings.

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As part of the PPP I have had the opportunity to meet so many other people affected by asthma, some with severe asthma, some with mild asthma and also those who care for people with asthma.

One of the roles that I find most rewarding is when I am asked to speak about my experiences and be part of a panel. There is a lot of focus just now on severe asthma so when I am asked to speak to people within the company about what it is really like to live day to day with severe asthma I jump at the chance. Severe asthma is so misunderstood and has so many other components and not just the asthma part but the side effects from medication, impact on work or education.

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(the first event I attended with Astra Zeneca just over 3 years ago)

I have not long got back from Madrid where I was part of a patient panel speaking about our input into a project and why it is so important particularly how would it have been helpful when we were newly diagnosed. To be able to speak to a room full of people who are all transfixed on you and what you are saying is a very surreal experience but it makes me see how important my story is and why I need to speak up about life with severe asthma. When working in a large company you often don’t get the chance to meet patients particularly when medication is in development and not ready to be trialled on humans the scientists don’t get to see the impact the end product has so attending these events is key. It shows everyone just how important their work is and what the impact of the end product can be.

We also had some videos recorded about our involvement in the PPP and why the work Astra Zeneca is doing is so important.

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I have had so much fun working with Astra Zeneca. I used to think pharma was just about making money and they didnt have patients at its heart but now my view has totally changed since I have been part of the PPP. All the work they are doing they are looking at how they can include patients to ensure the work is going to make a difference to people with or affected by asthma.

I have also got to make some great friends and would really encourage anyone else who wants to find out more please get in touch. What I have found is that I am getting to see a whole new side to asthma and developments in asthma medication and management which I did not see before and do not see when I am involved in the applied side of research.

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Please drop me a message if you want to find out more about the patient partnership program and how to get involved. I have had such a great time that I would encourage others to join too!

(Please note AZ has not told me what to say and all my opinions are my own)

Post ICU respiratory clinic

I started writing this on Wednesday 9th October as I sat in the waiting room having checked in to clinic. I had so many expectations from clinic and pinned so much on it yet left feeling deflated.

“Sitting in clinic with butterflies flying around my stomach. This is my first clinic appointment with my consultant since being discharged from hospital 2 months ago. I feel like I have been living up at the hospital with seeing so many different people from neurology, muscular-skeletal physio’s, neurology physios, psychologist to name a few. So let’s just add respiratory consultant into the mix to. I think out of all the appointments this is the one I never want to come around. Why? Because I know we are going to be going over what happened and the events leading up to me being on life support. Despite it being 2 months ago I am still not ready to face or talk about what happened or to be told about what happened. I am trying to adapt to my new normal with my stick and leg that has half it’s feeling which in itself is a constant reminder of what happened and how unwell I was. 

Just now as I write this I am sitting outside lung function waiting my turn to see how awful the results are and would give everything for the out patient people to say they got the day wrong and don’t need to see me. My stomach is flipping and it shouldn’t. The consultant for my asthma is here to help me and make things better not worse but I just don’t want to go and see him. Unless there is a magic wand to be waved I want to just get on with stuff myself. Unless there is a new medication on the table or something to improve my health I’m not to bothered about being up at the hospital all the time as I can manage myself just fine if this is how it is going to be”.

This is as far as I got before I was called in to the dreaded lung function room, and as soon as I was out of there I was called in to see my consultant.

How did it all go?

Well lung function was the same as it was at last clinic. I guess that is a positive given that I have had a major attack in between these clinic visits. Then my actual appointment didnt go how I thought it would. I had the expectation that we would be going through the events that occurred during that last attack but we didnt. I had worked myself up thinking this is what we would discuss. I know I sound like I am just moaning because at the start of this post said I was not ready to talk about what happened but so many people had said this is what would be happening so I worked myself up.

I have to go back to clinic again in 7 weeks so will see what is said then.

 

Writing: planned vs spontaneous

This is a draft of a blog post that I started a wee while ago and never posted it. I thought I would post it now. When writing blog posts I have a few different types, I have the updates particularly if I have been to an out patient appointment or something. Then I have my planned posts which are more thought out, proof read and contain more factual information and lastly I have my spontaneous posts where I just feel like writing. These are normally posts that come from a frustrating situation or if something has happened etc.

It has been quite a while since I last wrote spontaneously. To tell the truth I have been finding everything fairly tough both mentally and physically that the thought of sitting down to write has filled me with dread as that means thinking and verbalising what has been going on and I just cant. Although during this time I have had lots of ideas about blog posts to write and have a list of topic ideas, and even have opening sentences for them all in my head but trying to actually put pen to paper so to speak is just too much. The blog post topics that I have noted down are:

  • life after ICU
  • friendship with chronic illness
  • why is health advocacy so important
  • the unseen side of severe asthma
  • value of learning from people who don’t have your condition but have something else
  • staying active when your body does not want to cooperate
  • what I wish I could say to my drs and medical team (perhaps broken up into different blog posts- a letter to my consultant, a letter to my GP, a letter to my asthma nurse etc)
  • addressing the work life balance
  • the benefit system and navigating it

I hope in the next few weeks to feel a bit brighter and can start writing again freely as I do miss just getting an idea and sitting down to write.

I have also been at quite a few events recently which I have not written about and must write them up as well. Lots to be getting on with just now!

Struggling to stay positive

After being seen in neurology I felt kind of positive. I was excited because I was going to be part of a trial for the type of nerve injury I have. I have just received the clinic letter which is eye opening and reading the findings just makes it feel so much more complex. It has also left me feeling really vulnerable and weak. Before I used to get frustrated by people who would stick there nose in if I parked in a disabled parking space because of course you cant see how asthma effects you there is nothing that flags you out as different but now walking with a stick, walking with a big deficit and only being able to wear one pair of shoes that my brace fits in is so visible. I can also feel the pity people have. While in the near waiting room I overheard the people sitting opposite me saying it is so sad when young people have to come in to clinics with such struggles while looking at me with that smile and head tilt. I would right now give anything to go back to just being frustrated by people who like to make judgements.

The most disappointing part of the clinic letter is that I am not suitable for the trial because I have 2 different nerve things going on. If I only had the nerve injury then I would be ok but because of the muscle weakness I have I can no longer be a participant. I have been referred to the neurophysiotherapy team to get them to help me and I also need to go for various tests on my nerves such as nerve conductions studies and EMG done.

The hard part that I find is that this is all so out of my control. Before when I have been unwell it has been my asthma. To be fair I know pretty much all there is to know about asthma or at least my type of asthma so when unwell I can kind of deal with it as I understand what is going on so know how it might pan out. With this I am totally in the dark with it. Nothing is within my control now. I just have to let my nerves heal and do the physio when I am seen. I see the musculoskeletal physio that my GP referred me to tomorrow morning but I’m not sure if I will continue staying there because of the referral to the neuro physio too. I figured I just need to get started and get on the road to recover as best as possible as I cant stay where I am with the brace/splint and wearing trainers out like there is no tomorrow!

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DCN: Department of Clinical Neurology

Last week I was in Manchester at the NHS Expo. On the train my phone went and I saw it was the hospital calling- all calls that come from them show up as the same number no matter the department. Of course I just assumed it was respiratory because who else would be calling me. I was shocked to say the least when I didnt recognise the voice and just heard neurology.

Anyway my GP has been concerned by the symptoms I have been having in my foot and I had apparently said something that raise warning flags so she had been right on the phone to the on call neurologist who then called me.

Long story short they wanted to see me in clinic (which is you have ever been to the WGH it is a flipping nightmare to find)

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The outcome of the outpatient appointment was not too bad. There is no magic fix but it will heal (even though the neurologist did say it will be slow and will be painful). Essentially there are a few things happening but the main one is peroneal nerve paralysis due to injury. The injury being the lines I had in my femoral.

I was feeling sick to my stomach during the day and waiting in the waiting room in DCN. When I attend outpatients normally I am relaxed, because it is somewhere I know and to be honest there is not much about asthma I don’t know. This however spooked me totally. I know nothing about neurology, I was not expecting to find myself in DCN because to me I didnt think I had a neurological issue, in my head I was thinking it was vascular and part of me was expecting to be seeing someone there not neurology.

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The neurologist I saw was really good and very thorough. She did a heap of tests and I was poked with pins and stuff to see how I reacted and what I felt. The oddest part was getting the feeling in the bottom of my feet done. I have such tickley feet so was bracing myself, the left I pulled away almost as she started but and the right I was getting ready to do the same thing but the feeling never came. It is a very odd thing when you can see someone touching your foot but you don’t feel it, but also being told to do certain movements which you think you are doing but there is no movement taking place. It is like my leg stops below my knee.

The outcome of the appointment is physio. I am going to be a participant in a study though looking at this kind of injury and seeing if intensive physio is more beneficial than weekly physio. It is exciting to be able to be part of a trial. Since my asthma has got really bad I am basically excluded from all clinical trials because I have been in critical care or because I am on long term oral steroids so I am stoked to be able to get on a trial. I will keep you posted on how it went.

I am determined to get myself moving forward and make progress. The good thing is that I cannot do anymore damage to it so I don’t need to rest because quite frankly I have done enough of that. The bonus I have is Ghillie. He forces me out walking everyday which will build my muscles and encourage the blood flow (which is compromised due to scarring from all the access I have had).

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Once again though the NHS has been fantastic. My mum had been very concerned about my leg, more so than I was. To me it was just really annoying but once my ankle started swelling as the day went on and then the skin became mottled I knew I needed to be seen. My GP acted super quickly and to be honest I wasn’t sure what I was expecting perhaps a physio referral but I cant thank the NHS enough for once again being there to help me overcome more challenges my body throws at me.

The Implications of Brexit on medication supplies

I think so far I have managed not to mention the B word on my blog. I am not one that is in to politics and after this fiasco I am completely and utterly fed up with it.

One thing over the last few weeks I have noticed there has been more concern over medication availability post Brexit. In the back of my mind I think i had thought we would be ok. I think because our previous prime minister Teresa May lived everyday with a chronic health condition requiring medication multiple times a day, I had assumed that we would be ok because she would surely not screw herself over and leave herself high and dry with no medication. Of course she has Type 1 diabetes which she manages fantastically (or so it appears to the public eye). Whilst she was prime minister there was concerns for our health service and for some drugs that were required but it did not have everyone running around flapping wondering wether or not to stock pile prescriptions.

However now with the current prime minister who appears to have a disregard for everyone in the UK, particualry those who wish to challenge him. However since he has decided to prorogue parliament I have noticed there has been a lot more worry about healthcare- even if he plans to announce new local policy for healthcare when parliament reconvenes after the Queen’s speech.

Only today did I think I was reading the US news

Small side step- Since I went out to Dallas and made so many good friends with people living with all sorts of conditions all across the states I have been made aware of just how awful their health system is. Many don’t have enough money to buy their insulin if they are diabetic, others are collecting medications to send out to those who can’t afford it. This is a side to america I have not been exposed to. I know the insurance system means it is a lottery of what medication they will or will not approve but never did I think there was stock piling and people sending medications to each other just to get by and stay alive.

Back to the UK. The news today had stories about getting your flu injection now before Brexit, also about stock piling your medication particularly if they are medications produced abroad in European countries. It got me thinking about my medications and where they are produced.

I think a lot of it is scare mongering if I am honest. There may be issues in sourcing certain brands of drug but if you are to read the pharma news there is a new drug almost each week which is in short supply due to manufacturing issues.

I live in hope that what I am reading will be fake news and it will never come to this. I have never voiced my political views on here and I am not about to start but for those with chronic health conditions I think Teresa May was the better option.

Recovery- its not easy and so frustrating!!

One thing I have become very aware of is how we adapt to recovery in different ways. This last hospital admission has really highlighted that to me as recovery has been far from straight forward and a totally new experience for me- even after getting my knee operated on was easier than this.

Previously when discharged from hospital  including critical care admission I have been focused on rehabbing my lungs and getting myself back to my baseline so I can get back to work and back to doing the things (I know there will be many reading this laughing saying I run back to do all sorts before I am ready and need to take more time- my family mostly).

The physical insults on my body as a result of a severe asthma attack are normal. The dot to dot of bruises were there have been attempts at bloods being taken, injections, arterial stabs and then of course the cannulation attempts and the effects of keeping that cannula in for 10 days (7 days longer than meant to but it still worked so it was staying put) because despite the burning while the potassium, magnesium, salbutamol or aminophylline going through it still worked and you could take a decent rate of fluid going through it, but these all fade. The battle wounds disappear not long after getting home. They cause no real pain and do not last (except a few scars but you don’t notice them).

This time it feels like everything has been flipped on its head. The physical insult is still with me and will no doubt be with me for months and as many people have told me it is likely to be a painful recovery. This is a totally new experience for me. The physical insult is still visible as well. My leg is black and blue which seems to be getting better now but it is taking its sorry time. This is the only outward sign from my last admission.

To look on the positive side of having a foot which I have no feeling or sensation in, a leg that has this burning nerve pain that sears through it any time I move has meant I have been resting….ALOT. I have been confined to sitting or lying as much as possible. This has been fantastic for my lungs and post hospital lethargy. My mum commented how much my lungs have recovered from this admission but it did not escape her that i have had an enforced rest due to my leg being in such a state.

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It has really broken me not being able to just bounce back, even being able to just get back and have independence. When you are unwell in hospital it is ok to ask for help for things like getting about, up to the toilet or even help with a wash but once home these are tasks I feel I should be able to do without thinking. If I need to get something I now need to think about it:

  • what am I getting up for
  • do I have my leg brace/ splint on
  • is my stick near by
  • what else do I need to do while I am up so i can limit the pain that is induced by moving

Mentally having to think about everything you do it tiring. Small things like going for a walk are exhausting. I have to concentrate so hard paying attention to what the ground it like I am walking on, where I am putting my foot and if there is a handrail or something else to hold on to while going up or down a slope or stairs.

I know I need to be really thankful I am alive and able to be at home etc but it is so hard some days watching the world go by, friends moving up the career ladder, going on wonderful holidays, starting families and I see myself going backwards. I have less and less freedom, reliant on so many people, yet back away from so many people because who wants to be around a 33 year old who cant even look after themselves properly and do the things that every other 33 year olds do.

But I have a lot of things to be positive about and have ideas in the pipeline about how to improve my life, get myself back on track and really do some work to try and get more people to understand asthma and all that goes with it. I never thought asthma could do what it does. It is all the secondary impacts it has on your life that are not spoken about and are not known.

I need to keep finding the positive each day and go to bed knowing I have done something productive with my day even if I have not gone outside or interacted with anyone.

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While I breathe I hope.