What asthmatics what the medical profession to understand.

Asthma has so many misconceptions with severe asthma have even less understanding with those asthmatics just wanting people to understand what its like and what is not in all the text books and literature as most of these are written by those who think they know what asthma is like because they have studied it but they havn’t lived with it. I put a post in a group online asking this and was shocked by how many responses I received and how varied they all were.

Due to the sheer number I am going to split this into two posts one about what we want the medical professionals to know and the second about what we want the general public to know.

My biggest frustration is when Dr’s think your asthma is bad because your not taking your medications as you are meant to and being uncompliant. This happens to me a lot. Recently this happened because my theophylline blood serum level was low. The first reaction the Dr’s had was that I was not taking my medication when I was meant to. My level was only 7 but its meant to be about 15. I tired to tell them I had been on that dose for so long and never had it change and its been trending down but this didnt seem to be a good enough reason. So I felt like I was having to prove to them I had been taking my medication as I was meant to. I know a lot of people have this. The first question following what happened? Is normally and have you been taking your medications then you get the test to go through every medication and give the dose and time of day you take it to prove to the medical staff that you have been compliant.

One of the other subjects that cropped up so often and crops up a lot is about when you attend hospital and the emergency department. If we leave it too late and end up being blue lighted into resus or even worse a crash call goes out we get the lecture after we have recovered from our consultants that we need to go in sooner and get help when things are not so bad (I have had this lecture several time only because of the following experience). But then when we go in early we are left till we get worse or sent away. The line of your sats are ok so your doing fine. The problem is that on the whole with asthma your are pretty healthy in between having attacks therefore you have a good oxygen reserve. So when we have an asthma attack and been working hard a blood gas will show this but because our oxygen saturations are good you won’t often get a blood gas done.  But if you did this would show your lactate rising despite good oxygen. Just because the oxygen is good does not mean that your not struggling it just means your compensating well and this compensation will run out and that is when we crash. Being able to tell this Drs this is hard because they are the Drs and we often think they won’t listen to us but Drs will listen to us if we don’t get grumpy with them and just say to them this is what happens. With those of us who don’t have such great reserves we drop our sats quicker so this issue isn’t so much of a problem.

I don’t know if I am fortunate that have have quite a musical chest which when I go in it is fairly wheezy and crackling so there is lots to hear until I get very tired then I get a silent chest as I am not moving much air at all but many people with asthma have asthma where they don’t wheeze or wheeze is not the dominating factor. This is particular in cough variant asthma which often gets dismissed as nothing serious. It must be so frustrating for those with this type of asthma as they just get dismissed but feel awful. My tip would be rather than having to try and tell the Dr’s when your having an attack and coughing so much, have a written care plan which says about your type of asthma, how it presents and just how frustrating you find when Drs think things are not so bad just because your not wheezing.

I have a care plan which is so handy. It explains about me and my treatment and steroid reduction but it also says things about getting blood gases and various other things. I get very scared when I am told I need to go to Intensive Care and will often reject the idea and get upset about it but this care plan says this and says to bring the subject up carefully rather than dictating that I need to. Having this type of plan helps and gives the Dr some understanding about the type of asthma I have but also shows them I know my condition and want to take control over my situation. Having this might help you in your situation if you come up against Drs and nurses not understanding you and your asthma.

Another hot topic for Dr’s and any medical professional to understand and I think this one crosses the board to all chronic conditions is side effects from drugs. Personally I take around 30 odd different medications. Some of them for my asthma including prednisilone. For years I never took it as I should and I wish now at the time I could tell my Drs why. But I didnt I just lied and told them I did. It wasn’t until my consultant before the one I have now was frank with me and I was frank with him, that I was able to explain I hated taking prednisilone because it was always reduced. I would feel great on it and my chest would let me live the sort of life I wanted but because Dr’s know the devastating long term effects of it they want you off it so I felt what was the point of taking something for short term to feel better for it to be taken away. I just didnt see the point as it was a rollercoaster of feeling good and bad, bad when they were taken away so what was the point. So we found a happy medium but this happy medium has meant introducing tablets to counter act the horrific side effects, but to me it was worth it so there adds in some of the 30 odd medications. I also had to be honest about how some tablets made me feel like my theophylline which the benefits out weighed not taking it so to tolerate it I needed to take more medications to make the sickness, reflux, leg cramps, restless legs but taking these extra things really help and the drugs help.

Had I not been honest with my consultant about how I feel I would never have the (some what) control I have now and wouldn’t be as compliant because I let them know how I felt and we worked together to get a good balance. Just now its not so great because side effects are really hitting me hard as I am still recovering from the last exacerbation but I think Drs don’t realise sometimes that we need to live and sometimes taking more medication to counter act side effects is not such a bad thing if it lets us have a life and have the life we want to some degree. Obviously the Drs need to step in sometimes and put their foot down with medication to some degree but as long as we work together (something I must remember as a nurse myself when patients complain about medication and treatment).

This is only the tip of the iceberg when it comes to what we want medics and people in the medical field to know.

I did write an article over a year ago now called “Just relax and concentrate on your breathing” in the British Medical Journal for a series called What is your patient thinking. The link is: BMJ Article.

If anyone has any other comments or ideas they want to share about what Drs and Nurses don’t understand about Asthma.

Next will be a post about what asthmatics want the general public to understand about having severe asthma.

Why is fundraising for ASTHMA so important??

Tomorrow and then in a months time there are two events in which people I know are running for a very special cause.

Tomorrow one of my younger brothers is running the London Marathon and then at the end of May team mates from my lacrosse team Capital are running the Edinburgh relay Marathon. They are both raising money for a really important cause and a cause that is so close to my heart. They are running for Asthma UK.

It is really distressing when I hear of friends and strangers dying as a result of an asthma attack and often attacks which should not have taken a life. You would not think that 3 people every day die from an asthma attack or that 1 in 10 people have asthma.

It is a sorry state of affairs when since 1998 there has only been 3 new drugs developed to treat asthma. One montelukast which I have been taking since it first came out is the only one which is widely available to all asthmatics whereas the other 2 are very specific drugs targeting specific cells such as eosinophils and IgE so are only used in those with very specific blood levels which meet the criteria. So not everyone can have it. In fact mepolizumab was first rejected by NICE  (in England) as they felt it would not benefit enough people for the cost of each dose. It has now been approved.

Asthma UK recently released their Severe Asthma Report which highlighted that they are making head way with allergic asthma  and new drugs are in the pipeline and research is being done in the basic science centre however this is only one type of asthma. For those like me who do not have allergic asthma we need to wait till there is more funding to allow more in depth research to discover the different phenotypes of asthma and how to manage those who are therapy resistant and very unstable.

I really do long for the day when asthma is taken as seriously as cancer and other disease which get a lot more media attention when asthma is just as devastating and it really should not be. Two thirds of asthma deaths are preventable. To put that in real terms out of Dawn, Emma and Rachel who all died from asthma attacks 2 of them should still be alive. It is shocking when you can put names to statistics. Parents have lost children, friends have lost friends, brothers have lost sisters, sisters have lost brothers, I could go on and on but so many people shouldn’t have lost people as a result of asthma.

I am so grateful to anyone who is running or taking part in events which raise not only money but also awareness for asthma and Asthma UK. I am fortunate to have benefitted directly from fund raising in many ways- I have taken part in weekends run by Asthma UK in which asthmatics get together and have education sessions and support for us, I have also been able to go to London to take part on brain storming sessions which Asthma UK have funded me to do. I have also benefited from research they have funded which has brought about new learning of asthma.

I really do long for a change in the understanding of asthma. I have been able to educate those around me about asthma but mainly because it is upfront and central, if you know me over a period of time I am going to disappear for a hospital admission or I am going to terrify you by having an asthma attack but this shouldn’t be the case. People shouldn’t need to be educated in how bad asthma can be. Everyone knows how bad cancer can be, how bad dementia an be but everyone just thinks asthma is what every second person has and a blue inhaler will fix it.

So please take a moment and either go to my brothers page: Paddy’s donation page

Or Capital Lacrosse Clubs page to donate to Asthma UK: Capital Lacrosse Fundraising page

Thank you in advance.

Clinic, going to see work and finding my security blanket!!!

The last few weeks have been pretty rubbish since getting out of hospital so I kind of had all my eggs piled in todays clinic appointment thinking there would be some magic wand waved and all would be fixed- Im not sure why I thought this as I have just read the report on Severe Asthma published by Asthma UK who say they are a long way off making break throughs in non atopic asthma. So its not like I was going to bounce out of clinic like I had a new set of lungs. I know its going to take time for things to settle and hopefully out of clinic something will be done about my restless legs and arms as these are doing my head in at night, and during the day. A horrible side effect of prednisilone, theophylline and the buckets of salbutamol I like to consume on a daily basis!!! I was reassured last week when I was having a really low point and wondering how the next years will pan out and what more can be done but a asthma nurse specialist who I know and is unfortunately a kids asthma nurse reassured me that I am with the best and just need to keep positive. I think knowing that your with someone who is one of the best in their field does reassure you.

After clinic I popped up to work which is a longer walk than I thought/ realised. It was good to sit down with one of the charge nurses and have a chat. I worked out that this is the longest time I have been off since I moved back up to Scotland from Winchester. It was also my longest stay in Intensive care and longest stay in hospital so I can’t really expect to bounce back. One thing I did take from our chat was abut what I do in my time when recovering and also on my down time. I sort of realised I don’t do much I can do when not well. I love my job I think because it is giving people with long term conditions and a lifelong need for medications and therapy the ability to take control of their treatment and their wellbeing. They do the treatment they fel not so bad, they don’t do it they feel bad, but I do feel I can relate with my patients because I know what its like to be dependent on medical professionals, medication and will often joke with friends who are also asthmatic and some of my lacrosse friends that I am pharmaceutically enhanced, but I guess this is what my patients deal with too. I guess what I am trying to say is I know they don’t want to do treatments all the time and want to have a life so I guess it makes them normal like everyone else who doesn’t have conditions and being able to have that relationship with patients and ou can tell them you know thy won’t do things every night you need them to or whenever you need because something else might come up but if they are honest with us then we can work around it to make sure they feel good and can do what they want within reason.

To say I live for my work I guess in part of me I do as I love it but then I also do all the patient and public involvement stuff with the Asthma UK Centre for Applied Research which has now grown out of just the centre but now I do work with The Wellcome Trust doing some speaking with the PPI lead at AUKCAR and also speak on a Masters Program for Clinical Trials at Edinburgh University, the European Respiratory Society, theBMJ, Cochrane Library (something that totally intimated me as a nursing student and could never navigate my way around and now I peer review articles for them- how times have changed), Asthma UK RASP Volunteer and also part of the Astra Zeneca Patient Centricity program. All of these I love but they are very much throwing asthma in my face and I am confronted with it every time I sit down to review something, or speak at something but with that its for the good of people looking to help people with asthma to improve their life but also people with other conditions especially with other companies I am working with but also the more general PPI things I am doing so I guess having this mix of things really does help keep the focus off the asthma and doesn’t remind me all the time of the life I could potentially have if there was a huge breakthrough in asthma research.

I also like to be involved in Lacrosse and am lucky enough to be assistant manager (aka AssMan- in jest) of the Scotland Team.  But I do find my involvement hard. I can’t do all I want to do especially coming off the back of admissions but what I have found is that stringing sticks mainly for club mates, other club teams, school kids and a few national players. Stringing sticks is something I can do no matter how unwell I am. I can do it in bed. I find it oddly relaxing and therapeutic. There is also a lot of online stuff I can do trying to sell t shirts to raise money for the Scotland squad to get to World Cup this summer, so even when not able to physically do things there is still something I can do. I am looking forward to World Cup this summer. I won’t be with the Scotland team as committed to doing match statistics before I became involved in the Scotland setup. But I will hopefully be able to watch most of the Scotland matches and fingers crossed be well enough to really enjoy the World Cup.

For the time being I need to just rest, recover and get myself back to good health and get back to work.

This is a totally added bit to this blog post but as I got into bed tonight and found a salbutamol inhaler in my bed. Over years I have found salbutamol inhalers have been a kind of security blanket. I find I have to have one with me everywhere even when Im using my nebuliser a lot as I am just now so have no idea how a MDI inhaler got in my bed. I have not actually taken a puff of one for a while. I do remember nurses laughing at me as they wheeled me across the ward to the bathroom while on oxygen and IV Salbutamol yet I insisted on bringing my inhaler despite the fact that I had 20mg of Salbutamol coursing through my veins every hour so no idea what I thought my Salbutamol MDI which gives 100 micrograms per puff. It does not compute but it really is my security blanket. God help me if GSK ever go bust as I would be without my security blanket of Ventolin MDI.

Parking charges set to more than double at work (RIE)

My Scottish followers may have seen the news as it has caused a lot of uproar even planned boycotts of using the shops based in the Edinburgh Royal Infirmary and also the canteen.  The First Minister has also raised concerns and been involved voicing her opinion.

For those of you who don’t know what I am talking about is that the PFI Hospital in Edinburgh also known as the Edinburgh Royal Infirmary which is run by consort have decided to more than double the charges for parking in the Consort run carparks which are situated around the hospital. They have also decided to raise the cost of the parking permit which has more than 500 staff on a waiting list for one. With many citing that there is a park and ride near the hospital which staff can park for free in the car park and then get the bus to the hospital. This is reasonable but what happens when your commute is already over a hour and you have to drive past your place of work a further few miles up the road, park, wait on a bus and then get it into work which could prove more difficult on a saturday and sunday when buses run infrequently and also those night shift workers. What are they to do.

For myself I am not effected as badly as some but this still effects me as the price of the parking permit is rising. Despite being reliant on my car because of my breathing. My asthma is set off by smoke and strong smells- you tell me the last time you saw a bus to with no one smoking in it- therefore making buses unusable for me unless I want to run the risk of exposing myself to smoke, which runs the risk of going to hospital and like new year 2 years ago an intensive care stay all because I was exposed to someone smoking.

I can only work part time because of my breathing and therefore earn less meaning that a higher proportion of my wage is going to go on my parking permit and this rise will not be in correlation to the 1% pay rise NHS staff are getting as just now for more than 7 hours parking the rise is 114% approx. The other issue which does irk me is that I am a blue badge holder yet I need to pay for my parking to a private firm just to be able to work. I don’t object to paying some but when doing all you can to keep healthy and when you rely on your car more and more as you have more bad days than good days the paying for parking just to do my job makes you wonder if working is actually worth while.

This is what effects me but for patients. As a patient which I also am I send a lot of time in hospital and rely on my family to bring me food due to allergies which are not catered for by the PFI run hospital so I rely on people coming in daily to bring me food. This rise in price of parking for them is going to have a huge effect and may act my own recovery if they cannot come in everyday. Unless the hospital are going to start catering for those with food allergies (an area which is of huge weakness and does not make easy for patients unlike the other non PFI hospital in Edinburgh which goes above and beyond for patient who have a particular diet due to allergies and even has its own diet kitchen) and man relatives don’t have to come in every day and have to pay extortionate amounts on parking which many families can’t afford. Given the choice I know which hospital I would prefer to be admitted to.

Many patients as well have to attend several clinic appointments. For example transplant patients who require weekly bloods and cannot take public transport due to be immunosuppressed are having their healthcare hampered as they will have to fork out costs just to stay healthy. As part of my job I also have to get patients up to see me at short notice so can’t get them transport etc so am asking them to pay these bigger costs just for the good of their heath.

Some may argue and say to get hospital transport but when you give a reason for example if I said to them I can’t get the bus incase of smoke they are going to laugh and refuse it. In my opinion either consort having less profit and thinking of patients for once or the NHS actually having to pay more for example if I got the bus and someone was smoking at the bus stop the NHS would then be paying for an ambulance, an A and E stay, potential need for an ICU bed for a few days, then potentially a week stay on a respiratory ward and then maybe a month off work. Where is this benefitting the NHS or is it just lining the pockets of Consort which is somewhat ironic.

I must say i hope the First Minister steps in or at least the health secretary does. I guess I am lucky in that I can within reason choose which hospital I am admitted to (because lets face it there will be more missions unless by some miracle a cure for asthma is found overnight), but there are still hundreds if not thousand of people who are going to be having to make a choice between paying parking charges and their health.

You can read more about this issue below:

First Ministers Slams parking charges

ERI Staff boycott

Currently uncertain

This last three weeks and one week out of hospital has flagged up a huge range of thoughts and questions to me. I keep questioning everything just now and really feel like there is no going forward. I feel exactly like I did about 9 years ago after I spent over 3 months in hospital trying to get control of my asthma but each time we got control something else would trigger it and I would be set back again. This is what the last admission felt like although it was not 3 month only 3 weeks but it was equally as scary. At the end of the 3 month admission I left the hospital with a PICC line in my arm, attached to a syringe driver (eventually to become 2) and requiring nebulisers every few hours. After this latest admission part of me wondered what I would be leaving with.

 

Thankfully I only left with needing nebulisers every few hours and there was no PICC line or syringe driver however part of me now wants to be back on the syringe driver as it made such a difference to my life. It gave me freedom to enjoy things again and not feel short of breath constantly and getting wheezy with the slightest thing. Unfortunately here in Scotland they are not a fan of sub cut terbutaline so the chances of going back on it are slim to none instead we seem to prefer steroids up here- which yes they work but they are wrecking me and I know that when I start reducing them I won’t have the side effects from them but my asthma will get worse again.

Over the past year particularly I have questioned my life more and more. Questioned what I am doing and am I doing the right thing. Each attack I have I am needing ITU intervention and spending longer in ITU and therefore spending longer in hospital and longer recovering post hospital. I also find that ITU get called a lot once I am on the ward as well because I deteriorate and have the potential to need to go back there which is scary in itself when you have an asthma attack on a respiratory ward with respiratory Drs around who can’t control the attack and stop it getting worse that ITU need to come. As each attack escalates it leaves me thinking what happens when ITU can’t do anything- then what, what will happen then, there is nothing past ITU they are as far as you go with medicine. I don’t want to think about it but these are the thoughts I have especially when I am in hospital and having just dodged yet another ITU admission.

One other thing that really plays on my mind is what I am doing with my life. I love my job and would hate to have to stop work but just now I feel so bad that my colleagues get left short staffed when I am not there for extended periods of time, my patients get left, but also I can’t give my job my everything because if I do then I work and go home to collapse in a heap and can’t do anything else, if I push myself then I end up missing stuff or doing things as well as I should. Just now I am missing work and feel bad because I have just been away on holiday and even though I had an awesome time and the Drs decided it was not being away what made me ill I feel bad because I shouldn’t be able to have great holidays and not be able to do the same level of work. The one constant I always have and can always do no matter what is my involvement in asthma research, I can do that lying in my hospital bed, in my own bed, on my sofa, in the middle of the night when I can’t sleep. I can do it whenever and wherever I am and this I take a lot of comfort from because no matter how I am feeling I will always be able to do something and do something that I love.

I never in a millions years thought that asthma could leave me questioning so much and leave me with so much uncertainty. I recall on time during my last admission when one of the junior Drs was staying with me while the consultant got the ITU team to review me, I remember crying and telling her I can’t do it. I didnt have the strength to fight anymore and fight off another attack. The Dr was so reassuring and I can remember her saying that I could do it but I still find myself thinking I don’t have the strength to keep fighting all these attacks.

Asthma UK recently published a report for severe asthma and while there is promising advances in drug therapy particularly precision medicine with the new monoclonal therapies coming out but even they admit there is a big gap in the market for those with non allergic asthma which is the category I fall into. I have many allergies but it is to a very specific thing salicylic acid which just happens to be in absolutely everything and anything. So I guess we just have to wait longer in the hope of new medication and until then use what we have and rely on good old prednisone for keeping me stable or as stable as I can just now.

This post i think sounds quite negative but it just the reality of how I feel just now but I am hopeful that once I gain some strength again I won’t feel like I do now and won’t be questioning the future and what I am doing with my life. I must remember I am lucky that I have the life I have and make the most of the opportunities I am given and not one breathe be taken for granted.

What a few weeks

So my last post was written when I was in hospital and it took me forever to write. I just had so little concentration and left it fairly abruptly saying I was going to ITU.

Well I spent 4 days in ITU. The first 24 hours were really hard. I remember just having such a hard time breathing that i really didnt care what was happening. I was given so much support from the nurses but there is only so much they can do to reassure you that everything will be ok. We kept trying to lower my oxygen and then I would drop and we wold need to turn it back up again. My main memory of ITU was the struggle they all had with getting access to give me medication and get my blood. Even though a lot of the time it was excruciating being stabbed and have needles trying to find veins I really didnt care because even the effort of caring was too much. I really have never been so scared as I was this time, it just didnt seem to end and I felt like I was getting too tired to fight it but eventually I finally managed to turn the corner and started to get better and became more stable but with that came the pain in my chest but that was easy to deal with compared to what had been.

I really cannot thank the nurses and Drs in Intensive care enough for all the care they gave me and how much they supported me and just cared and put me at ease or at as much ease as possible. I really would not have got through it without them as it was just so terrifying.

Leaving ITU to go to the ward I was really relieved as morally once Im out of ITU its 3 or 4 days and I bounce back and ready to go home. I was so wrong this time. It took me three weeks to get back to near baseline where the Dr’s were happy to discharge me and Im still not back to baseline.

So what happened to stop me getting better in 3 weeks. I don’t know. I seemed to just have such a rollercoaster, I would have these weird allergic reactions- I actually reacted one day to my nebuliser mask even though I had been using it for the whole of the admission so far. It was very odd but with each reaction I was setting my chest back further. I also had these weird times where my chest would get really bad for no reason and then I would break out in hives and look like I had red man syndrome (but i didnt and I wasn’t on Vanc). It happened once infront of the Dr and the Dr saw the whole thing. All of this was happening when I was in a side room but they wanted me out the side room and into a  bedded bay so they could see me as my bed space was right by the nurses station. This didnt go well and something in the room set my chest off within 3 hours of being in the room and 12 back to back nebs, IV magnesium, IV hydrocortisone and who knows what else and no improvement ITU were called back to review me and kept a close eye on me but thankfully the ward were happy to look after me and I could stay. This was sadly not the last visit from ITU as deodorant was sprayed in the room and that set things off too but thankfully the Drs decided I needed to go back into a side room where I could control what was going in and out so I wouldn’t be exposed to anything which could trigger me.

With lots of up and downs things slowly got better and stable enough to think about discharge and home.

Its left me with a lot of thinking and a lot of work to do to get myself back to where I need to be. I just can’t believe that from the start where I didnt think I was that unwell to being really the sickest I have been in a long time and then not getting back t baseline for discharge has had a huge impact on me.

I havnt really processed everything yet and will need to put it down in another post once I have sorted all my thoughts out and where I want to go from here with my treatment and my life in general. But right now I need to focus on getting myself back to a level where I can function and having a shower is not leaving me in a heap of exhaustion and breathless.

 

 

Putting the last two weeks into some sort of order.

I started this post about a week ago when I was still in hospital. I was going to finish it and then post but as I am now home I am just going to post it as it is because it’s how I felt at the time. I will write about the last 3 weeks soon once I have my strength and energy back and also concentration!!!

Since I last posted about my trip to London for the launch of the Healthcare Heros Book a lot has happened. I spent an amazing 10 days over in America (which I will write about in a separate post) but this high came crashing around me a few days once I was home which brings me to where I am now. 

I don’t normally write my blog while I am in hospital but I am sitting in my hospital bed, in my side room in the respiratory ward here in Edinburgh listening to the Billy Elliot Musical soundtrack trying to piece together what’s, how’s and why’s of the past two weeks. They have been anything but easy and have left me feeling very scared, vulnerable and quite unsure of what I am doing, what I should be doing for the best.

Returning home from the States I picked up a little tickle I think on the plane back from London but who knows ( I blame the plane because it was disgusting- pictures are being sent to British Airways). Of course I tried to keep going with it and get to the end of the week at work. I managed just despite a small mishap with my car, and left half an hour early but I was feeling horrible by this point not to bad asthma wise but sick wise but Friday I was up all ugh coughing and staying in bed on Saturday I relented and got checked out by Out of Hours. Totally freaking out the poor GP who did her best (not helped by the number of people who feel it is essential to go out and smoke while waiting to see the OOH dr and come back in stinking of smoke making everything for me so much worse. So fast forward- oxygen on, nebuliser on, porter called and GP escorted me to the Acute receiving unit to be checked out. 

In the receiving unit I really didn’t think I was that bad and thought a few hours of nebs, some magnesium and I would be on my way. I think I must have been really not great as I was taken off up to ITU- I thought it was just coz there was no beds anywhere but I now realise it was not because of beds- it’s was because I was not well and had the resus bag to f Olof up to ITU along with the ITU consultant and the respiratory consultant. I should have twigged then but I think I must have been a bit out of it as honestly did not think things were that bad at all.