To my new family and my tribe #HealtheVoices19

Wow where do I start. It takes a lot for me to be left speechless but I am unable to put into words the emotion and feelings from this past weekend. It sounds a bit cringe to say but it has been truly life changing.

I have made so many new friends who I know will be friends for life.

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To all my new friends from HealtheVoices you all have no idea how much I have appreciated this weekend. The main reason for why it was such a big deal was in November I had a near fatal asthma attack. What was different about this asthma attack was that the asthma consultants were basically there right from the start of the attack. Then the ICU consultant told me if we didn’t turn the cornerstone we would be running out of options and I really needed to turn the corner ASAP. Thankfully I did turn the corner but the attack left me traumatised and I still am living in fear from it. I fear I may not be able to fight the next attack, I fear who will be with me if I have another attack and will they be able to cope. I was also terrified that I would not manage the flight. I know my family were really worried about me coming over on my own but I had to do it for me. I needed to be able to prove to myself I can do it.

Before I came out to Dallas I didnt know what I was going to do moving forward.

Asthma has cost me so much in life and it still does but being able to be among people who know what that fear is like and you don’t just pity each other or say “yeah I know what it is like” you answer it with comments about how you over came adversity and give ideas on how I might do the same. I also had to give up my job which I loved but despite this doors have opened and I will be moving on to great things and with the inspiration and motivation I have taken in from this weekend I will not be looking back.

The other great thing is that I know there is life beyond being ill and you can use your condition to better yourself and to better others as well. I may not be able to control my asthma and control my health but I can control what I do with it and use it to help make changes for others.

I feel so included in a very special group of people.

You guys are all my family and my tribe

x

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#HealtheVoices 2019

I am super excited and cannot remember if I posted about this before but now that everything is getting to the final stages and it is really going to happen I thought I would write a post all about this next exciting opportunity.

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HealtheVoices is not something I had heard. Fairly recently while looking on Twitter I came across them and the conferences they have done as well as the amazing patient advocacy. HealtheVoices provides a ground breaking leadership conference for those involved in advocacy for their own health conditions, the communities around them and others as well. The conference is to empower those in advocacy to continue the work they do and get as much impact as possible from it. They have been organising these conferences and this year it will be their 5th event.

I can’t remember applying for the conference or filling in the form so when I got an email in January asking me to be a speaker and lead a session I was shocked but also had a huge sense of pride that despite asthma dictating my life I have had so opportunities as a result of it which are truly once in a lifetime events.

The event this time is over in America. I fly to Dallas Texas in a weeks time and am so excited. I have never been to Texas and will have the chance to have a few days being a tourist out there to.

We have just got off possibly the biggest conference call I have been part of. I think there were 69 participants in total. Most of these people were members who are coming to the conference and not all speakers. They said there was well over 350 applicants so to be short listed to give a talk is probably one of my greatest achievements.

The one down side (if you can call it that) to this is I have had to 1) prepare what I am going to say and 2) put together a power point presentation. Many who read this will know my aversion to slides and my slight aversion to preparing. As Allison would say I just like to wing it or busk it!!! For this though I cant. So I have put together some slides myself which I think look ok just waiting on the legal team to give them the ok! I have also written most of my talk. 45 minutes is a long time!!! I will be giving my talk a test run with my Mum so fingers crossed that goes well, may even run it by my little brother too depending how brave I am!!!

Public speaking is something I have grown into. A good friend of mine and PPI colleague Elisabeth likes to recall the story of when we first met when I was so shy and quiet that she struggled to hear me speak. Now she struggles to get me to shut up!!! With every talk I give I can feel my comfort with speaking grow. I still get very nervous at certain events and was so thankful on some occasions that I have had a lectern  to stand behind because my legs were shaking so much but on the whole I feel ok when I am speaking.

I am so proud to be able to go and share my story and tell others about how great being involved in research is, all the different things you can do and how to get involved. I am also teaming up with webMD too which will be awesome as they have a huge online platform.

Will be tweeting and blogging from the conference if there is time although it seems like a jam packed program. The conference will be streamed live so will post the link for this when I know it. Remember though there is a time difference!!!

Oral Steroids and Bone Health

Oral steroids like prednisolone come with a vast array of side effects. Some of these side effects can be very visible such as weight gain, or thinning skin but these are not the side effects to be worried about. It is the silent side effects that we don’t see that need to most attention and care. As well as steroid induced diabetes and high blood sugar levels one of the other potentially catastrophic side effects from prednisolone and other oral steroids is bone thinning and osteoporosis.

Over the many years of taking oral prednisolone I have gone from someone who really did not think about the side effects to being hit full force in the face.

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I have been prescribed bone protection for years. Calci-chew D3 Forte twice a day and then alendrotnic acid once a week. I have to be honest and until maybe 5 years ago I was not the most compliant at taking my bone protection. The calci-chew never bothered me and it was easy to take but it was the alendronate I used to always forget. I think it is because you only take it once a week and when you take it you must take it with a full glass of water, be sitting up and not take any other medication with it. Part of my morning routine I do on auto pilot which included taking my medication. I would just take it, and do my teeth etc without thinking. Often by the time I realised I was meant to take my alendronate I would be half way through my breakfast. I was not missing it on purpose but after several experiences of taking it after eating I was not going to do it again in a hurry.

A good consultant will make sure you get a DEXA scan regularly especially if you are on long term oral steroids. I had not had one at all until maybe 5 years ago when I was sent for one to check my bone health. The results were shocking. I had early stage osteoporosis with significant bone density loss. I was at this point not even 30 and had the bones of an old lady. I also knew at this point that my asthma was not likely to get much better and I would be on oral steroids for a good portion of my life so I needed to wake up and make an extra effort to take my alendronate. Which I did.

The one slightly daunting part of the whole thing was filling in the pre DEXA scan questionnaire particularly the bit about you diet where it asks how much milk you drink and how much daily you have. I had to count up the average amount of milk over a week and I was pretty shocked!!! But I guess when it comes to bone health the more calcium the better!!

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Now it is the anxious wait for the results to be processed and sent back to my consultant. No matter what the result is there is not much more I could have done. Since finding out I had the early stages of osteoporosis I have been religious in taking my bone protection medication which is all I can ask for.

I do wonder that is the reason I have osteoporosis now because I was started on bone protection late but also because once started I never really took it as thought I didnt need it as I was young and my bones would be ok. I can’t dwell on it now because it has happened and I cant change things. I can only now stop things from getting worse rather than hoping to cure my bones.

If anyone reading this is on oral steroids and not taking calcium supplements from your GP, Asthma Nurse or Asthma consultant then please ask for them. Steroids can have an awful effect on your bones. One friend is now wheelchair bound due to the adverse effects of steroids on her bones.

Never underestimate the power of the humble oral steroid. They do some wonderful things and as a result mean many are alive but they do have some side effects which can be equally as devastating as not taking the drug themselves in the first place.

Guest blog post: Why being a Volunteer is Important in healthcare?

And how to keep them happy and feeling valued.

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Hi, My name is Mark Hudson, You probably have no idea who I am, that’s ok I’d be surprised if you did. Olivia and I met in August of 2018 at an ICU steps Edinburgh event, Creativity in ICU recovery, it was my first speaking event. I was nervous as talking about what happened to me in ICU is not easy, it is bearing my soul, several people spoke at me. Note that AT me, an ex ICU consultant who basically telling me about what a patient goes through in recovery, arrogant right? Other spoke at me telling me why they where great, Dr Ramsay introduced herself but was very busy so during the event didn’t have the time to talk (which is fine there was a lot going on). So, who was the first person who actually spoke to me? Who treated me like a person, a person whose view was important? Olivia. I don’t have many friend but I make them fast, with me its all in or all out, I don’t have any middle ground. My health issues and nearly dying in ICU made some things clear to me, life is short and as such you should surround yourself with good people. I chose to surround myself with great people like Olivia.

I have only met Olivia one other time in the real world but I am happy to call her one of my best friends. Why I hear you asking? Because we have fought in the trenches of Critical Illness, we have battled ICU Delirium, we have had to deal with life long health issues and we have both made it through mostly intact. Ok so now to get to the point of the blog, I hear you saying thank god, a bit rude but that ok I forgive you 😉

I was given an opportunity to Volunteer after I completed my ICU rehabilitation clinic I was invited to become the peer support volunteer for the clinic it was a big deal to me as it was an opportunity to pay back for the people who saved my life and help to make those who came after me in ICU’s lives a bit better. A chance to make a real difference in peoples lives, this is the main reason why people volunteer in these types of positions. However, it is very easy to take them for granted, after all they are not paid so they are valued as, less right? Well no because you are being paid to do your job, they are giving up their time and experience. So how do you avoid this pothole, well you do somethings my team did with me, you listen to their input taking it seriously and weighting as equal to the other team members or greater depending on the subject. Also inviting them to any Quality improvement meetings you have and treat them like one of the team as they are not a guest they are very much in your team. Other things like remunerating for their travel is important too as why should they be out of pocket for helping you out.

I have now started doing what I call freelance volunteering inside my health board mainly on Delirium so far. This is where I am brought in to talk say at a conference or training session etc. Now these situations are trickier for the people who are bringing the Volunteers in because unlike my clinic experience, I am not part of the team. However, in this situation I am being brought in as an ‘Expert’ now this can be a problematic area as you are often viewed on as a free resource. No other expert would be looked at in that way, it is as if because you are giving your time up for nothing you lose position you become an almost inferior. This is the worst thing you can do to a volunteer because you will make them feel like a failure and not respected, which will make them much less likely to volunteer with you or anyone else for that matter. So, I hear you asking how to avoid this, its trickier, because there is not usually a pre-existing relationship it can be tricky. Here is my ‘guide’: if you are in a faraway or difficult to get to part of a building meet them at the front door; if there are other speakers or ‘important’ team members introduce them and say they have came to help you do x or have Volunteered to show us X it shows they are important; Introduce them before they speak and thank them when they are done in front of the group it shows their value to the group; and at very very least offer to pay any travel expenses because why should they pay to help you.

Ok so the serious stuff aside it boils down to is remember they are a human being put yourself in their shoes and see how you would want to be treated. Remember they owe you nothing, they do not need to help you, that is sometimes forgot. They do not need to give you their time, insights, wisdom or bear their soul to you. They are giving you a gift, its not yours to take or demand its theirs to give so remember that when you are working with volunteers.

Mark also writes his own blog which is well worth a read. Mark is also an avid poet writing some fantastic poems. I have been very fortunate and Mark has penned a few poems for me which I will post for others to enjoy too!!

Mark’s blog is: https://autoimmunedisorderjourney.blogspot.com

Twitter: @MarkThomHudson

Getting it right for a newly diagnosed asthmatic.

Having a conversation with a friend this evening and I was so shocked to hear about her recent experience being diagnosed with asthma. A prolonged cough, wheezing and breathlessness the GP was unable to get on top of things so she was referred on to the hospital to see what was going on. Lung function was not too bad but a very high exhaled nitric oxide test resulted in a diagnosis of asthma.

My first thought was that it was good as she had been started on a preventer and reliever. I didn’t think to ask anymore questions really. She was finding her chest much easier after using the preventer for a few weeks and had very little need for her reliever.

I had made the assumption that once diagnosed she would be given asthma education, told about what signs and symptoms to look out for, what to do should you feel unwell and above all be shown how to take the inhalers both of which are meter dose inhalers (MDI) or the skoosh down inhaler that most people will think of when they think inhaler.

Anyway tonight after a quick question I discovered how badly the diagnosis and management was done. I realised that no asthma education was done, no inhaler technique and she had to ask for a spacer to use her inhaler with as one was not prescribed in the first place. I was horrified that she had not been shown how to take the inhaler. It is an MDI notoriously the most difficult inhaler to get the correct technique and the correct dose into the lungs!

It is so shocking that still new people are being diagnosed with asthma and not given the correct education or support. I am more than happy for friends and anyone really to ask me questions about asthma but surely it should be the asthma nurses or GP’s that give this information when diagnosing. Asthma is in the press enough just now as the asthma death statistics in the UK seem to be getting worse not better and it is among the mild to moderate asthmatics who are dying and most likely due to one of a few factors:

  1. poor inhaler technique
  2. not regularly taking there inhaler as prescribed
  3. not knowing the signs to look out for and take action when asthma control is deteriorating.

I keep going that the research being done will soon filter down into actual practice and asthma management will change. Time spent at the start can help reduce work load in the long run.

Asthma UK has a variety of different documents that can be downloaded to help asthma management and there is no charge so really there is no excuse for people with asthma to not be given the asthma action plan personalised to their needs.

Basic asthma care is essential is we want to achieve the aim of zero tolerance to asthma attacks.

 

Getting over the stigma of wearing a mask in public!

It has been a busy few weeks with a number of trips down to London. Last year when I had a few trips to London there was a clear deterioration in my asthma when I was there. My peak flow dropped substantially and I was constantly feeling tight, wheezy and just couldn’t get my breath or settle my breathing. I took all the precautions I thought I could- such as increasing my treatment, pre medicating before going out and about in a bid to stop my airways getting more irritated. It was interesting to see the drop by almost 150 l/min in peak flow between arriving in London at night and the next morning it was down. It really did not take long at all. What did take a long time was getting my peak flow to come back up. It was not until I had been back home for about 5 or 6 days that my peak flow returned to normal. (The trip I am talking about to London was ironically a research meeting to discuss air pollution on lung health!)

Knowing I had and will have many more trips to London I knew I couldn’t expose my lungs to that level of irritation again and couldn’t afford to let my peak flow drop and need more medication to get back on track again. If I did not do anything then I would be on this rollercoaster every time I was in London or other heavily polluted cities and my lungs really don’t need it.

After some research I decided to purchase a Cambridge mask with a carbon filter in it to protect my lungs from the air pollution when in London or else where.

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I need to point out here that there is a lot of people out there wearing masks such as this or the vogmask which also has a filter in it but it is VERY important to realise that these masks will not protect you from bacteria or viruses. Often there are posts on social media of people wearing these masks in hospital to protect them due to suppressed immune system. They don’t work for that and the companies state that too. Only high grade surgical masks will protect from bacteria or viruses.

I was really apprehensive about wearing it and thought I would get funny looks, pointed at and comments made, but one fo the people I was with in London told me to put it on and my breathing was more important than what other people think. So I wore it and got on with it. I really was not sure how much it would help, if it would help at all or was it just a waste of money.

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Since purchasing the mask and wearing the mask when out and about in London I can say it has been worth spending the money. I was very skeptical and part of me still is as both London trips recently were very close together so I am not sure how much might be just that my asthma was not too bad. Once arriving in London the next morning my peak flow dropped by 50 l/min but it also stayed stable throughout my time there rather than moving around the place. I had some low grade breathlessness, coughing and chest tightness but nothing massively concerning that gave me too much cause for concern. Once back home my peak flow did pick up a little bit but I cant directly attribute the initial drop to London but I think what I can say is that wearing the mask with the filter did impact my lungs and kept my lungs stable. I have had 2 trips now with the mask and things have been more stable as a result.

I am still trying to understand just how much the pollution impacts my lungs but clearly it is as when wearing the mask there is a marked change from pre mask and a change for the better. Unfortunately I will not be able to avoid going to London as there are so many things down there with regards to research etc but using the cambridge mask has made a difference and has added a little bit more security for y lungs and reduce the risk of exacerbation as a result of pollution. I am not sure how much the pollution in Edinburgh effects my lungs but it might be something to consider and perhaps wearing a mask in Edinburgh night help too.

I cant reiterate enough though that these masks are not hospital grade and will not protect against all viruses and bacteria etc. It is a carbon filter. The website does say it filters bacteria etc but speaking with medical professionals and different lung charities they do not support their use for bacteria and viruses protection.

AUKCAR ASM NRS Talk

It is hard to believe that I have been involved in the Asthma UK Centre for Applied Research for 5 years now. Time has gone so quickly. I have had some amazing experiences as a result fo being involved, met some wonderful people and made friendships that I hope will last for a long time yet. I say this often but AUKCAR has been life saving and life changing. I have no clue what I would be doing if I had not had that chance meeting that set about a series of events which has put me where I am now.

The annual scientific meeting held in London this year was a celebration of all the hard work and research that has been done to help benefit those living with asthma or affected by asthma. Asthma UK originally funded the centre for 5 years so we had to reapply for further funding for another 5 year period. It was announced during the meeting that we have been awarded funding for the next 5 years which is incredible.

I love the ASM’s because it is a chance to meet people face to face. The centre is virtual so a lot of the work is done via email or teleconference so seeing the people you work alongside is not a common occurrence. It also gives us the chance to meet other members of the patient and public involvement (PPI) group.

 

This years meeting I was speaking twice and presented a poster too. For the first time I was presenting about an academic bit of work on my own which I was a little nervous about but once I got up there it was not too bad (also the team who were part of the work were in the audience so had to get it right). The poster was also related to the piece of work too- evaluating the impact of PPI!!!

The final talk I was giving was when I fell to pieces a little. Not quite as bad as 5 years ago when i was in tears and the audience were in tears, it was only me this time. It was the talk I gave along with 2 friends and PPI colleagues at the NHS Research Scotland Annual Conference. To summarise the talk was originally celebrating the NHS at 70 and we gave our accounts of how medicine has changed with the NHS. Allison started speaking about her experience fo asthma with her mother, then Elisabeth spoke about growing up with the NHS and then I spoke about the NHS today and changes in medications. (I am going to write a full blog post dedicated to our talk in the next week or so).

When I originally gave the talk in October I had not long changed consultant, had started new medication for my asthma and things were looking up. This is part of my original talk:

“I have been in and out of ICU and HDU more times than I can count, it has almost become routine when admitted to hospital now. Once stable I would then be moved to the ward to further stabilise before being ready to go home, once I home I would then begin the arduous task of weaning down my oral prednisolone dose to my maintenance. This I now hope is a thing of the past. I am 4 months into a trial of mepolizumab and it has had so many positive effects. I have not been admitted to hospital since April and am on the lowest dose of oral prednisolone I have been on for as long as I can remember. It has been truly life changing. Advances like this have given not just me but given others their life back. If it was not for research, mepolizumab would not be an option and I would still be on the rollercoaster I was on before”.

It was only just before I was going to give the talk at the ASM when I realised how much has changed in such a short space of time. Never would I have thought  when I first wrote that talk that life would have changed so much.

I have been back in hospital and intensive care, I have not got back down to a lower dose of prednisolone and I am no longer working. I am still on the mepolizumab injections as it has reduced my eosinophil count. It highlights just how fickle asthma can be and how you can never predict what the future will hold.

In a way I think maybe it is a good thing that when giving the talk at the ASM I was able to tell the audience what I had said back in October and then tell them how life has changed in a matter of months. No one unless you’re living with it can really see the unpredictable nature of asthma and how debilitating it can be. Even with the best plans and management it can still rip the carpet out from under your feet. The emotion I showed on stage is the emotion I try and keep buried down because as it does is remind me of what I am not able to do. PPI has given me so many positives but there is still the longing for the life you want or the life you once had.

Having a platform such as the AUKCAR ASM or the NRS gives the opportunity to show everyone what is often hidden behind closed doors when it comes to asthma. It is so misunderstood and if people who struggle to deal with controlling it don’t speak up then the perceptions of asthma will never change. I hope that some of what I do will help make a change and help researchers, Dr’s, nurses, other health care providers and the general public about asthma and what it is really like.