New horizons- not knowing how to feel!

In March/April for me my asthma care hit a wall and I could no longer continue as I  was. Despite my consultant being one of the best in the field of difficult to control asthma I was getting no where, I was feeling lost, totally out of control and no idea what I was doing other than trying to keep myself as well as possible. Something had to change and in my opinion it could only be change for the good because I felt things couldn’t get much worse.

That hospital admission changed everything back in April time. By the time I was discharged I had a new team and although I had not met with them yet I felt more confident about my care, who was looking after me and positive about the future. Once discharged home I eagerly awaited my outpatient clinic appointment to find out what would be happening and where I would be going with my care. It took a while to come but yesterday I had my clinic appointment. I spoke with my new consultant on the phone and discussed various things including monoclonal antibody treatment which the allergy people were also keen on. It was decided I would wait and see the consultant once a decision was made on it.

I pinned a lot on yesterdays appointment and the new treatment I would be starting. I kept trying to tell myself to not put all my eggs in this basket as things may not change at all and I might yet end up the same as I am and no further forward in getting my asthma under control. Recently I have felt well and managing my asthma quite well. It is because of the high dose of oral steroids I am on and using nebulisers fairly regularly but it has kept me well. People have commented on how well I look and sound. Again the security blanket of prednisolone the drug we all love to hate but right now I am loving it because I feel so well (come 3am when I am up with insomnia and restless legs I am not so fond of it but cant win them all).

So what happened yesterday….

Well not what I wanted but despite this it was a positive appointment. We did not start new treatment. 2 reasons- my chest was not quite good enough. The recent weather has caused a bit of havoc and I have found it more difficult to remain stable but also he wants to use a different drug but the same type of medication.

He is hopeful that my asthma will get better. He did say and many consultants have said it before I will never be free of asthma and may still need hospital help but I should not have to rely on steroids like I am to be able to function and live some sort of life. I long to just be able to plan things and know where I am with my health from week to week or day to day.

Having faith in a tea is so important and to feel listened to. I went with a list of questions and things I wanted more information on such as a plan of what to do when I am not well because being on unlicensed doses of inhalers and oral steroids there is no where to go when things get bad other than the hospital and that is not needed just for extra medication so to have a plan for this at home would be really helpful.

It may not be perfect but I feel more confident in having someone who I can speak to, I almost ended up crying when I was there as I am so frustrated at my asthma and everything it has cost me and stopped me doing. I try to find the positive and focus on the positives things I have done as a result of asthma but there is the still wonder of what would life be like if my health was to become stable.

I was really shocked when after my appointment I felt so drained and then in the middle of the night I woke up and was so angry. I think it sunk in that there is going to be a change. It may or may not work but something is being tried and nothing has been tried in as long as I can remember. I felt so angry that I have been left sitting for years just going in and out of hospital, up and down on steroids and nothing more was being done so had resigned myself to the forever of life being like that until the attack came that would finish it all. I was angry that only because of a bad admission and really throwing my toys out the pram that something has changed and may help. Im not sure how I will feel about the last decade if this new treatment has a positive effect.

Life has been very busy with various things particularly research and PPI which I love and so thankful to have it to fall on when I asthma is stopping me from doing everything else in my life!!!

Asthma Death in Children

There is so much research into asthma just now looking at a cure for asthma, better management, getting asthmatics to comply with treatment better but research into asthma death, often a taboo subject to talk about is vital to make any change in the shocking asthma statistics.

Ann an children’s asthma nurse specialist is also one of the PhD students at the Asthma UK Centre for Applied Research. Her PhD is looking to speak to parents of children who have died from asthma.

The importance of this I think is two fold.

Initially the whole concept of this PhD came from one of the Patient and Public Involvement Leads at AUKCAR whose own daughter died from asthma. Having a PPI member come up with the research idea and the centre then backing it really highlights just how much AUKCAR values the patient and public group by implementing project ideas that come from them.

Secondly this PhD is so vital. Only a few months back it was revealed that across Europe, the UK has the worst rate of asthma deaths and a rate that we all hoped would improve after the National Review of Asthma Death (NRAD) was published in 2014. However this is not the case.

In the UK death is very much a taboo subject. People don’t like using the term death or died. You see the term passed away or lost- you don’t lose someone if they die because if you go looking you won’t find them again. Asthma death is just that and I know people who have had family members die from asthma also do not like the term lost.

For the first time research is being undertaken by an asthma nurse specialist who deals with a number of people with severe and life threatening asthma. Rather than speaking to medical staff, Dr’s and nurses Ann is going to be speaking with those directly affected by asthma death. Ann wants to speak to parents or carers whose child has died as a result of asthma. Speaking to you will mean we can learn from your experience and make a change for the future.

Have you been affected by asthma death in the last 10 years (in or after 2008)? Has your child died between he age of 5-24 and you were there with them. Would you like to speak to Ann and help make a change for the future?

All you need to do is email Ann: ann.mcmurray@ed.ac.uk or by phone/ text on 07976582297. You will have a single face to face chat with Ann in a place that you are comfortable which will last no longer than 2 hours.

The study has been reviewed by the West of Scotland Research Ethics Committee 3 (WoSREC3) and Patient Public Involvement volunteers of the Asthma UK Centre for Applied Research (AUKCAR).

 

This weather and managing with it.

The last few months Scotland has experienced some of the hottest weather it has ever had. So many people are loving the sun, warm weather and having the ability to wear shorts, t shirts, hair down and enjoy BBQ’s. Most of my friends and family are and I envy them so much as they can sit comfortably out in the sun and just enjoy soaking up the vitamin D giving the peelie wallie Scottish skin some colour.

I think I truly am the grinch just now as find this weather unbearable. So many people loving the hot weather, willing it to stay and I long for the cool weather, some wind and way less humidity even some snow wouldn’t go a miss!! I always have been a fan of the winter months- even before my breathing was bad. My love of the snow, mountains, fresh air and skiing will never leave me as I long for it everyday. Over a decade down the line I still resent what happened in Canada and the destruction it caused to my life. All the if’s. If I hadn’t gone to Canada maybe I wouldn’t have go the infection, would not have been helicoptered from one hospital to another, would have not had so much damage to my lungs but I cant dwell on this. I can long for those times again.

Now though my love of snow and winter is not for the skiing but for the air, lack of humidity and comfort. This weather just now I feel is suffocating, it is like having a pillow held over your face that you cant get off. Breathing air which just feels too thick to get into your lungs. It is a hard sensation to describe, almost like you want to water the air down yet it is the water in the air that is causing the problems.

Rather than spending my time out in the sun I have had the curtains shut, windows open in a bid to keep my flat cooler. Fans are going full blast which I really could not be without. Cool showers have been an essential as well. Something that comes up a lot with asthma and post attack is that you look ok and when you don’t do much you are able to breathe a lot easier but the moment you go to do anything it is an uphill battle. This is the part that no one sees and this is the most frustrating part because I don’t feel unwell when doing nothing yet feel like I am tasing for breath at the slightest thing. Unless you have been through it I really don’t think you can understand what it is like.

The most frustrating part is unlike with a chest infection or an attack there is medication you can take to help alleviate symptoms but when the weather is involved there really is not much you can do, no amount of steroids are going to make the air less humid and easier to breathe. How I wish there was. My one sanctuary is my car which has a fantastic air conditioning system in it and I am really appreciating it right now. I am currently sat in my car with the air con on as I write this. The nights are long and a night when you cant sleep is always made to feel longer especially when you cant breathe too. If this weather is to become a regular occurrence I may need to sort my flat out to help with these conditions.

Right now one of the really frustrating things is the lack of control. I cant control any of it, no one can make it better and I am having to miss things because of my breathing particularly at night when the humidity is so much worse.

I know I am not alone in how I am feeling and how the weather is effecting my breathing. There will be hundreds of others with all sorts of long term conditions who are struggling to cope with the weather to. It would be great to hear from anyone who has found good ways of coping and making their life easier!

Feeling well….

……is a strange feeling sometimes. For so long now I have felt like it has been a constant battle for good health and wellness. It may sound strange but for so long I have hated how asthma has made me feel. I really resented having it at times and all that it has stopped me doing. Now though everything seems a little different.

What has changed???

I changed consultant as my relationship had just broken down and I really couldn’t communicate with them very well and just felt the aim was to get me off steroids no matter what. So an admission in April changed everything and a change in consultant.

Back almost a decade ago now when I was living down near Southampton the specialist I saw was a fan of using a split dose of prednisolone. I would take one dose of 40mg in the morning and then another dose of 20mg early afternoon. Gradually I would wean it down to my maintenance dose of 15mg once a day which along with a syringe driver of subcutaneous terbutaline 24/7 would keep me fairly stable. Back up in Scotland they never used a split dose of prednisolone (or subcut terbutaline in a syringe driver), so I eventually stopped asking about it.

This last admission though a new consultant suggested we try a second dose of prednisolone as I kept getting worse in the late afternoon early evening (the same reason I was on a split dose in England). It took a few days but we could see the change in my peak flow which didnt vary nearly so much.

Adding a second dose of prednisolone has had such a positive effect on me and how my lungs have been feeling. I have been monitoring my peak flow regularly and thanks to bluetooth the results are sent to my phone. For the first time in ages I have had a really good pattern and very little variation.

E600E13B-09AA-4E64-B47A-2919FAD0574FThe bottom part of the photo shows the variation in my peak flow over a week which is really minimal.

I know though that I cannot keep going on this prednisolone regime long term despite how well it is making me feel because it is causing havoc with my body, weight gain, high blood sugars, thin skin, thinning bones, poor concentration. All the side effects I think have been worth it to even just give me this short period of feeling well. I have at least another two weeks of being on this prednisolone regime which equates to 35mg a day split between 15mg in the morning and 20mg at lunch. Part of me is slightly scared to see my consultant as I know we will need to address reducing the prednisolone although this will coincide with starting new treatment so fingers crossed that works and I can continue to feel how I do.

At first I thought the extra dose of pred was not going to do much but as I felt better I started to second guess myself and wonder if I felt better because something else was being done and I had a new consultant etc, but I think it is the prednisolone because so many people have commented on how well I look just now compared to before so it has to be that. I still have bad days when the weather is not great, humid or it is too hot and airless making breathing harder but I don’t find I get quite as bad as I did before.

I wish there was an alternative to prednisolone that had the same good effects but didnt give you the side effects that can really cause more problems than the asthma does.

I am hoping this period of stability continues and after so long of fighting for it, I would hate to go back to where I was before when I didnt know how I would be from one day to the next and would have attacks that come just straight out the blue for no reason.

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Zoe

In times of great hardship and sometimes suffering we find out those who will stick by you through thick and thin, good times and bad, the friends that will always be there no matter what. Those friendships can come out of no where. I don’t know when we became friends but we did, it was such a special friendship.

Zoe had cancer, something she lived with for 11 years. After going into remission and then relapsing, she was finally told that treatment was no longer working and it was active. Over the years Zoe continued doing what she loved, looking after her boys, playing golf, book group, standing on the side of a rugby pitch encouraging her boys, and part of so many  committees where she voluntarily gave up her time to help others.

We met at my youngest brothers school. Her middle son was in the same year and one of my brothers and her youngest son was the year below my youngest brother but they were both played the bagpipes and played in the band together and at several competitions. Supporting my brother at piping events and then at Britains Got Talent where the boys along with others formed the PipeBandits, I got to know Zoe better. You would never have known she was unwell.

Being very private, Zoe never made a huge deal about feeing unwell. There was only twice where I ever saw a flicker of doubt in Zoe and frustration she felt about having cancer. When the cancer came back and effected her more unable to drive this didnt stop her. We would have regular afternoon tea’s at various different places but a favourite was Mimi’s Bakehouse down in Leith. We loved going there with my mum, often boring her with chat about golf- we both have an equal love of the game. I was always in awe of Zoe as despite everything she continued to play golf and played this year with her family.

When the cancer progressed and Zoe was not going to recover I was in hospital and unable to visit her. Mum thought she could take me out and we could see her but the hospital didnt let me. As soon as I was discharged we went round to see her and her husband and boys. A downstairs room was beautifully arranged with her bed overlooking the garden and a chair either side so she wouldn’t be alone. I felt so privileged to be invited round to sit with Zoe, have a juice and a chat, although she couldn’t answer back and I’m sure would often be correcting things I couldn’t remember or laughing at the stories of what my youngest brother was up to.

The care and attention given to Zoe by her family was amazing. They are all a credit to her and should be proud of how they have grown into the men they have. Hearing that Zoe died was devastating but also peaceful because she was no longer suffering. Although she never voiced that she suffered I am sure she did at times and had her moments when it was all too much but to me the way she dealt with her health and our friendship she taught me so much.

I received an email from her husband asking for some words I would use to describe Zoe and stories I would want to share. This was to help with her eulogy. I wrote the following:

We had a friendship on many different levels, one bond was having a chronic illness that was so prominent in our lives but both wanting it to so badly not be there.  I would have to say stubborn and strong willed spring to mind, Zoe for sure was not going to stop doing what she loved, and I do remember when I was really down about not being able to play golf she encouraged me to try and keep playing because there is always a way around it, if walking round the course was too much I shouldn’t be ashamed of using a buggy. I always felt Zoe knew what to say and when nothing needed to be said but companionable silence. Other words that come to mind would be loyal, compassionate, and just someone who is so easy to be around.

Attending Zoe’s funeral was one of the hardest things I have done. Far more difficult that any others I have been to. I knew it would be hard but I was completely overwhelmed by it. The fact that the church was full and there were more than 100 people standing outside who could not get into the church says it all.  The service was beautiful and listening to her youngest son play the pipes in front of his Mum’s coffin in front of a packed church was so emotional. Zoe was so understated and never wanted a fuss, but seeing the sheer number of people from all aspects of her life come to celebrate her life must be such a comfort to her family as she is loved by so many.

I had thought I had my emotions together about Zoe dying and was prepared for a difficult day however during the eulogy there was an extract of something I wrote about Zoe read out verbatim to all the church. Thankfully I was not named but those who know me would have known it was my words and those around me would know as I burst into tears and was comforted by my little brother. The words I wrote were so true and exactly I think how Zoe viewed life and how she changed my thoughts on life. This is what was said:

It would be so easy to write inspirational, and words of those ilk but Zoe would not thank me for that as I remember a conversation after I was at the Healthcare Heroes book launch where we were discussing it as many people had said I was a warrior and inspirational for being in it etc but I was of the opinion I would still do what I do and just because of illness it doesn’t make it any more special. Zoe said to me that you make your life from what you are dealt, if you don’t get on with life then life goes by so living life with illness is not inspirational or anything you just do what you have to otherwise you would be the one to suffer and life passes you by (Im not sure I have worded that right). But I guess in a nutshell to me Zoe viewed illness as something she had and if she stopped life for it then what is the point in fighting it. Zoe really changed my view on life and coping with the rubbish that lands on you which I am so grateful for.

Zoe will have left a huge in hole in so many people’s lives but she has a wonderful family who will keep her memory alive, sharing stories, memories, things she knew and maybe didnt know about antics of her sons. Zoe had a profound impact on my life and my view of illness and feel so fortunate to have had the pleasure of being able to say Zoe is one of my friends. I want to say a huge thanks to her family for the time they gave me with her and sitting with her in her last weeks.

Zoe you are one in a million and I wish I had told you how special you are. I will be down to visit you as you look over the sea out to Fife, along the coast to Gullane and of course lying beside the golf course watching the golfers do battle.

Dum spiro spero- While I breathe, I hope

Critical Care does PPI

Tuesday evening I had a fantastic time. It was the first meeting for the Critical Care Patient and Public Involvement Group in Edinburgh.

Patient and Public Involvement (PPI) in Scotland is no where near as organised as it is in England and funding is woeful, so to establish and run a group is a huge undertaking but for us as patients it makes a huge difference. We see the dedication of the organisers to make life better for those in the PPI group.

I have been really privileged with this group as I have been able to help advise the group organiser and how to do it and was invited to speak alongside Allison who I do a lot of talks with for the first meeting. Having been involved in the set up of the SPEAK Asthma group, it was good to be able to advise on this one and work with the group lead.

It was great for the initial meeting to have a combination of patients, clinicians, researchers, advisors all chatting about involvement and research. What I did find is how difficult it is to define and explain PPI to patients but also researchers. It was clear some researchers thought PPI was more about patient recruitment than involvement but also that they have their clear idea of their research and how it is going to be done which is good however if this is their thinking then PPI is not going to work especially if the patients do not think the method of research is going to be beneficial. The key thing with involving patients in the research process is listening. You must listen to the patients and their views. You may not agree with what they say and think because you have research under your belt then you have the expertise but it is patients you nee to recruit so if those you use for PPI don’t think it is a good design then you can be pretty sure that your participants won’t be interested either.

However not all the researches were like this and some of their research has been really well thought out and they explained it in a manner that everyone could understand and get a real feel for the project. It is a real skill to be able to translate from academic speak to everyday speak so those who can they have the art!!!!

Having a unit like Critical Care want to set up a PPI group is really positive. Medicine is advancing so much and improving patient care and treatments. Patients in critical care are pretty unwell so often hard to speak to them about research and get them involved because when your there you are not in the best of health and research is the last thing on your mind. It was clear at the first group meeting though that the patients really valued the expertise in critical care and by them getting involved in PPI is them giving something back to the unit that looked after them.

The tricky thing is reaching out to those patients once they leave critical care or the hospital as even once out critical care and on a ward they may still not be feeling great so would not want to be given loads and loads of information as they are still processing what has just happened. If anyone reading this has ideas of how to gain more people for the PPI group (ideally in Edinburgh) please leave me a comment.

The exciting part is that there was such a positive response and watching everyone interact was great. A first meeting for anything is hard and you never know what to expect so for the organisers it has been a success I would say. It is sad though that they have had to put so much work in and I am sure many many hours of unpaid time to set up and organise such a group and event that it is not always possible for areas to do that or have the staff dedicated to setting up, running, facilitate and maintain a group.

The benefit is though that if the group can be advertised and grow then others might set groups up for their research areas having seen the positive impact PPI has had for others. The more groups then hopefully the more publicity and PPI may have more of an agenda in Scotland and research groups which would perhaps result in more funding and PPI groups can have a network across the whole of Scotland and all types of research can get enhanced by PPI and not just be a tick box exercise!!!

The Intensive Care Unit

I have written often about being admitted to intensive care or the high dependancy unit or being reviewed by critical care staff and it always something I have just sort of dealt with and not thought to much more about it. That was until last night. I couldn’t sleep for tossing and turning thinking about how many times I have been in ICU or HDU or had the threat of going there.

Why all of a sudden has it bothered me??

Yesterday was the first meeting of the Critical Care Patient and Public Involvement Group (which I will write more about in a post of its own). A room full of patients who have been in ICU or their relatives, Drs and Nurses from ICU and then researchers whose area is critical care.

Naturally when you have a group of patients together you are naturally going to ask how you are linked with the group and I guess what your story is. In the discussion part of it there were 2 other patients who spoke of their experience being in ICU and how it was awful, the worst time of their life and how the Drs and nurses saved their life because their life was in their hands. It was a traumatic experience for them and they have got through it. I heard the saying “surviving ICU” a lot.

“Surviving ICU” was what bothered me and kept me awake. I think maybe I under estimate how bad my asthma is or maybe how sick I get or how dependent on medical staff I am to get me better. I know that my asthma is severe and I know there are many more hospital admissions, HDU admissions or ITU admissions ahead of me and I think i sort of accepted this maybe. It was not until that group discussion that I realised just how traumatic it is, life threatening it is, and how it is not run of the mill to go in and out of critical care. At the time I was able to keep my emotions in check but when I got home and set up my nebulisers that it really hit me. The other people in the group had a one off experience, this is what ICU is meant to be like ideally a never experience but if it is going to happen then once is more than enough not once or twice a year sometimes more.

In my working life you hear about people going to intensive care, its not looking good for them or statements that you mainly go out ICU horizontally not vertically. I think for me I have always come out of ICU so would never dwell on the experience of being admitted. I cant say it is a pleasant experience not being able to breath and having the most toxic drugs that make you feel horrendous to make you better but it gets better, I go to the resp ward recover and get back home. It is how it goes and has been for the last 14 odd years.

So after that meeting and hearing others speak about ICU it has almost given me a fear. In the back of my mind I know there are only so many times you go to intensive care or high dependancy and get out but so far I always get out and sometimes bounce back but then get out again. I think it is the emotions that I could see on the other patients faces when they recalled their experiences that it hit me that maybe I don’t have the right emotion to it. The fear they had and the gratitude to the Drs for saving their life was clear to see. Its not that I don’t appreciate what the Drs do but I guess I just never wanted to admit that Im going to intensive care because its the safest place and I might just be that unwell that action needs to happen quickly. Every attack I have I am terrified that it might kill me and that asthma may just win the battle and Im sure I have surpassed that thought as it is very over dramatic and im young so it won’t happen but seeing younger patients have that fear of death and the unknown.

I have never really expressed my fears of my asthma to those close to me. I try to give the outward opinion that its fine, its life, its been long enough now I should be used to it. I would like to be able to have a conversation with people about asthma and death but would worry they think I am just being over dramatic and its never going to happen. Maybe I should though as a comment  that occurred really hit me and made me think about how those close to me feel and thought about my asthma and health. Recently a very close friend died, my mum was away, I was home but she read a text out loud and said “oh my god she’s died”. My step dad thought it was me that had died not the friend. This really hit me that if they hear something about someone dying they go to me and think it is me. I try so hard to keep well and take my medications etc but its still not good enough. I always knew they worried about me doing to hospital but never thought about the dying aspect of it.

What I find so difficult and I think it includes the whole critical care thing is that in the past I have been rogue with managing my asthma. I was young and didnt understand it and didnt want to accept it so I would increase medication so I could do something only to crash and burn and end up in hospital. That changed after a consultant had a go at me (they were just stern and didnt mess about but i felt awful so took it worse than had I been well) which I well and truly deserved but I stopped messing about and accepted not being well and accepted what I could and couldn’t do. The point I found so hard was that despite this change in behaviour and management I was still ending up in ICU or HDU but not having the good bit beforehand which I had before. To this day I still really cant accept the ICU or HDU admission for nothing. I get it if I was to go and play a game of football have a bad asthma attack and need critical care- I deserved it, I did something my body cant handle but now I try my best and still end up going there and that is the hard bit. Where before if I hadn’t been doing anything attacks would mean hospital and a respiratory ward where now it is resus, critical care and then respiratory ward. With this development what happens when it gets worse……

Lots to think about.