Cold to chest infection to….

Getting a cold to many is an inconvenience. To a severe asthmatic getting a cold fills you with dread because generally our lungs are fantastic hosts to cold bugs leaving us with rip roaring chest infections.

During the winter months you cant avoid the common cold, well you could but that would mean you become a hermit and prisoner in your own home. Im not going to do that. I like being out and about too much.

The last two weeks have been pretty hard work. I picked up a common cold which filled me with dread. I think it filled my mum with dread as well especially as she was going away and this is the first time I have picked anything since that last horrific attack.

As with most asthmatics despite my best efforts it went to my chest. I had a great chest infection with an impressive cough that drove me round the bend. Even Ghillie was getting irritated with my constant coughing.

I wish I could say I dealt with this infection well but it has filled me with anxiety and I have not managed it as well as perhaps I may have in the past. I knew the first bout of illness post last attack was going to be hard. I had a fear that I would end up on that slippery slope back down to needing a ventilator. Extreme I know but could potentially be a possibility.

Thankfully staying in touch with my team I was able to keep it at bay and not get too bad. My peak flow has dropped significantly but the antibiotics and increase in steroids have helped bring it back up along with a lot of i still have this irrational fear that really hits me at night that my infection may not be better and I am missing something. Morning comes round and I think I am so silly for getting in such a state about it.

I have been doing less than I would normally do while I have had the infection. Mainly because I have been terrified of making my chest kick off. It has been a strange time because I thought I would be able to write some blog posts, do some other research stuff but I just have not had the imagination or concentration (lack of concentration is something I have been struggling a lot with post ICU).

I am also very happy that I have had my flu jab so my chances of getting flu are reduced. I would urge everyone to get it that can get it!

The good thing is, the infection is clearing well and my asthma has not kicked off too much. Ghillie of course has been very attentive and by my side all the time!

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We need to stop Mepolizumab

Under a month ago I was writing about how I had been a year on mepolizumab. The drug that I thought was going to be my wonder drug and make my asthma easy to control or so I thought. You can read the post here.

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Part of me wonders did I know deep down that I would be stopping this treatment? I know in my last clinic I had asked my consultant if he thought I was benefiting from getting the drug. He outlined why he thought it was worth staying on it so we agreed I would stay on.

In just a few short weeks after that clinic and chat the words came out my consultants mouth that I didnt want to hear. He said “we are going to stop the mepolizumab treatment because I was not getting the results he wants and while on it I have had some of my most severe attacks”. He felt he could not justify me staying on it as I was still struggling so much and my attacks were getting worse again. He is also concerned about all the other issues I am having with my body which he cant say are due to the mepolizumab but equally he cant say they are not. He is worried about the unknown side effects from the drug due to it being so new.

To say I am gutted is an under statement. It was meant to be my wonder drug. It wasn’t as much as I try to convince myself it was working I cant be sure. It did reduce my eosinophil count which is the only result we can see conclusively that changed once starting it. Otherwise the things like recovering from attacks and bouncing back from colds quicker I cant say are due to the mepolizumab or if they are due to not working in the hospital. I cant say either way. I wish I could say it was due to the mepolizumab but I cant.

So what now??

This was the first question I asked my consultant as once again I feel like I am in a constant state of limbo, reliant on oral corticosteroids which have the be reduced but any reduction exacerbates my asthma again so I will be searching for that drug which can offer me stability. If only prednisolone did not have such awful side effects and you could stay on them with no worries- that would be magic!!

The good news is that there are new biologic treatments out there. There is Fasenra (benralizumab) which I doubt I will be eligible for. I am excited about the results people have been getting from Dupixent (dupilumab). In the UK dupixent is currently only allowed to be used in patients with skin conditions but over in the States there has been a lot of success for people with aspirin sensitive asthma. I hope that perhaps dupixent might be approved for use in asthma because I think the main issue which makes asthma control so hard to achieve is being anaphylactic to salicylic acid- a compound of aspirin which naturally occurs in just about everything.

Until then I just need to sit tight, do the best I can to keep my body as healthy as possible, minimising the risk of attacks and focus on getting better and have a positive mental attitude.

The gift that keeps on giving!!

Many on long term oral prednisolone will be familiar with the saying that it is the gift that keeps on giving. It is the one medication that gives those who are taking it life but also results in many secondary conditions resulting due to the side effects and the prolonged side effects.

I have written before that I have a love hate relationship with oral steroids. My lungs need them but the rest of my body certainly does not. Recently I have felt that the prednisolone just keeps on hitting me in the face with one thing after another from destroying my adrenal gland meaning unless there is a miracle I will never get off steroids, my bones have been leached of all their goodness and now have osteoporosis, my pancreas is affected meaning I have constantly high blood sugar levels, I have had issues with my eyes as well but never to the extent I do now.

For a good number of years now I have had swollen optic nerves. This has not caused me too much bother other than some pretty bad headaches, these headaches have been getting worse and more often to the point a few weeks ago it floored me. I was in bed the entire day, feeling sick and being sick. I have not had a migraine before but thee headaches are what I imagine they are like.

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I went to my optician last October- I was early for my annual check but I kept getting blurred vision at night and the feeling of having a film over my eyes which no matter how much I rubbed them or put moisturising drops still did not ease the discomfort. At this appointment we discovered I was missing a large chunk of my peripheral vision. I did the visual field test a number of times but each time I kept missing a full 1/4 of the circle in my left eye. Obviously this is not normal so I was referred on to the eye hospital with the final consultant visit the other day. I have been having a variety of scans, tests and drops put in my eyes to try and establish what is going on and the appointment was going to be the reveal all and I was hoping it would be an easy fix and also (clutching at straws a little) it would be something other than an effect from the prednisolone.

Anyway I saw the consultant who needs to speak to another consultant because she doesn’t really know what it is that is wrong but there is something seriously wrong. This did not fill be with hope. You go to the consultant because they know these things and can tell you what is wrong but its more waiting for just now while she speaks to her colleague, she is also wanting me to have a head MRI so they can get a better view of things but Im not really sure how that will help them as I don’t think it will show them anything in more details than they already have but maybe it will.

The long and short of it is I have swollen optic nerves but also the outside of the optic nerve is being compressed so the middle of it is bulging out and there is fluid accumulating with it. They don’t know why or how. They are not convinced it is related to my brain as the headaches I get are not consistent with raised intercrainial pressure which is reassuring. So its back to the waiting game.

Coping with allergic reactions

I have written a lot about my allergies and how the affect me. Being allergic to salicylic acid is a nightmare. It is in everything from fruit and veg to toothpaste. I have been salicylate free for a good 10 or so years now. On days where my asthma is not too bad I can manage food that has a low level of salicylic acid in it but even then I still react a bit but just break out in hives, go bright red, itchy and get a really productive chest and upper airways. This is with 3 different anti histamines onboard, a H2 blocker and oral steroids. I hate to think what I would be like if I did not take all of that and had a reaction.

The physical impact of allergic reactions is not great and the left overs hang around for ages, the itching particularly and then the exhaustion which is not helped by the extra anti-histamines I have to take when I do have a reaction.

For me the effect an allergic reaction has on me mentally is fairly significant. For example today I had a reaction when having my lunch. I had a lovely morning down at Cramond with Ghillie followed by some formal obedience training for Ghillie. The afternoon was full with meetings at the university. I had a reaction at lunchtime which knocked me for 6. I tried to get on top of it quickly so I would be able to make it to the university for my meetings but it didn’t work. I had to cancel and bail out of them. This is the part of having an unpredictable condition that I find so hard to deal with and cant find a good way to deal with it.

My main concern that I think about is what others think. I know I shouldn’t worry about what others are thinking and today of all days I should not have worried especially as the meetings I was meant to be at were with researchers from AUKCAR who all know about allergic reactions. You see so much and hear so much about people who say they have allergies to things but they don’t, it might be an intolerance or something just doesn’t agree with them but it is not a real allergy. This worries me so much as salicylic acid is in so much and I think people must think I am a fussy eater. I also have heard so many times from people who say their friend or family has allergies but they still eat things so it gives this false sense of what an allergy actually is. I have this fear that people think I am a hypochondriac when I wont go near stuff etc.

I don’t really know what I am trying to say other than my salicylic acid allergy is really difficult for me to deal with and having to cancel things at the drop of a hat due to a reaction is so frustrating as there is nothing more I can do to keep them in check.

In this day and age I just wish people would understand what a true allergy is compared to what disagrees with them or is an intolerance etc. It seems like everyone has allergies particularly gluten just now. In restaurants every other person appears to be ordering things that are gluten free yet then tuck into the bread or when they don’t like the taste fo the gluten free option they switch and just have the normal food. If it was a real allergy you would not be doing that, you would be avoiding the food like the plague.

One day I am sure I will be able to get a better handle on things and manage them in a way that I can recover from them quickly so I am not having to cancel plans so often.

A take away I would like readers to think about is how the person who is having to cancel things feels. I never do it because I want to, I cancel because I have to.

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.

The uniform that saves me, is it drowning me at the same time?

Since my attack at the end of November/ December I have really struggled mentally and physically. The initial recovery was good, my lung function returned to my normal fairly quickly and my energy stores were up, I was able to get about and get on with my daily routine without much limitation. Reducing steroids was a bit hairy but with the help of my consultant and asthma nurses we managed to keep on top of things although the reduction has only got as far as 30mg but hey its better than 60mg.

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I was confident this speed of return was due to the new treatment I am on but now I am not sure. I think a lot of it probably was at a basic level. The treatment helped me get back to my baseline to function quickly but Im not sure it got me to the baseline for work. I was excited to get back to work but I wonder now if it was too quick and the timing didn’t help. Looking back now despite reduced hours apart from the first week I was never able to get away on time because there were patients who needed to be seen and I was the only one about. I already arrive 30 mins early for work (this is my choice) because I have worked out that this is when there are the least number of people smoking outside the doors mainly due to breakfast and drug round on the wards! Many say that I can get the ward to see the patients etc but being a patient and having had this done to be it breaks the patient nurse relationship and you lose confidence in them so for me it is not an option.

But i now need to put my own health first. I keep going round in circles with it and I love my job and love working with the patients etc but then I get my body into such a state and I often don’t realise it until I am told. Last week I noticed patients commenting on how awful I looked and should I be in work, the people I was in the lift with would ask if I was ok because I was so wheezy, the finally after spending a weekend in bed and thinking I felt better I went into work to be sent home by one of the other charge nurses because I felt so awful and sounded it.

Part of living with a chronic illness is that you don’t often know how bad you are feeling until your on your knees. I know a lot of patients have said the same that they didnt realise how unwell they were until we got them on a treatment and it is once they are established on this that they really see how unwell they were. I think is how I feel that things just decline slowly and it takes a huge attack or event to stop the downward spiral and start getting better again.

Going back to the title of this post. I love putting on my uniform, I worked hard to be able to get it and then be able to keep wearing it. It is also the uniform the nurses who look after me wear as they get me back on my feet and my lungs working a bit better. But then I also wonder if my drive and love of work is also what is causing me to not get to my full potential of wellness. I am really torn with what I should be doing and need to stop and evaluate what is important to me and what is in my best interests.

I have an appointment with my consultant this afternoon where I am going to ask his opinion as I really cant continue as I am. I am back to the point of living to work and that is it. I love my job but need to have more to life than work.

I wish my lungs felt as good as these ones do!!!!

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It’s ok to not be ok.

This past week has been really tough. Asthma is one of those conditions that is on a spectrum. Going from those with the mildest of asthma to those with the most severe and life threatening asthma you get everyone across the board and you can not pick out the one person with mild and the one person with severe asthma. You can’t see asthma, sometimes you can hear it depending on how wheezy you are!!!

Recovery from this last hiccup has taken a lot longer than I ever anticipated. It was not the worst of attacks but equally was not the mildest either. I was only in hospital for a week yet it has taken me a good 3 weeks to get back on my feet and still Im not there yet.

I have been so fortunate this time to have the support of my consultant. When I say support I mean that should I have issues he has said so many times that I just need to call his secretary and she will get him to call me back or the resp reg on call to give me a call. Having that support is so reassuring to me it makes life that little bit easier. Also being seen in clinic every month (which is a faff but won’t be forever) and then on top of that I am at the ward once a month too for my mepolizumab injection with the asthma nurse specialists so if I have any issues I can ask them too.

As much support as there is they cannot speed up the recovery process and help with the everyday symptoms that just take time. The never ending fatigue that no matter how much you rest it just doesn’t go away (Thanks to prednisolone contributing to that), and no it doesn’t help by getting a good night sleep. It is a fatigue that is unlike no other- a fatigue that having a nap won’t fix, it is a feeling where your whole body feels double its weight, you are not tired and sleeping doesn’t help, but you just cant do anything. Until you have experienced it (which I hope you won’t) you have no idea what it is like. This is the really hard bit. Fatigue you cant see, and asthma you cant see.

Keeping your mind motivated is really hard when your body is preventing you from doing what you love. This is the challenge I keep facing. This time of year its all about Christmas, Christmas Parties, going out with friends, shopping and enjoying the festive period, but I feel like I am sitting watching the world go by and seeing photos of people enjoying themselves but I haven’t been able to join them. Just going to the shops to get the messages is hard enough leaving me exhausted.

One big thing that I am really finding hard and one friend who is also on biologic therapy said this can be a side effect is speed of recovery as well as joint and muscle weakness. Speed of recovery has been slow but as I keep trying to tell myself slow and steady wins the race- but truthfully its getting really wearing now. The other thing is the joint and muscles weakness. I always have some weakness after being in hospital as for most of it I am bed bound and not able to get up due to the inability to breath and also the number of IV lines I have which are often in my feet making walking a challenge. Building up slowly isn’t helping. The only way I can describe it is having DOMS (delayed onset muscle soreness) but having DOMS that won’t go away. Normally lasting 48 hours this has been 2 weeks now and my quads feel like they are ripping in half every time I go to sit down or stand up, occasionally jerking as I walk too, stairs are an interesting experience- thankfully I have a lift in my building so can avoid the stairs!!!

I am desperate to get back to work and my consultant knows this. I see him tomorrow to hopefully get the ok. I know it will be tough going back to work but I need something to mentally challenge me. I having been doing bits and pieces of research and evaluation of research conferences too. Evaluation forms I find are so hit or miss especially when there has been positive or negative things that you want to acknowledge etc- there is never the room and I end up putting a covering letter along with the form.

This whole recovery process and hospital admission this time has taught me a lot. The main thing I guess I have finally accepted is that it is ok to not be ok. It is ok to ask for help and admit when you are defeated. Over the years I have been made to see a psychologist to help me deal with life with severe asthma. You could say I was a bit resistant to it initially. I think it was the stigma I associated with it. I felt that if I was seeing a psychologist then something was wrong with me mentally and actually my problems were psychological rather than physical. I think I made this assumption because I was young (this was over 12 years ago) and at the time there was really not much openness about mental health and it really was stigmatised. In more recent years as my asthma has impacted my life in ways I never thought it would and prevented me doing more than I ever thought I have been so thankfully to have access to a psychologist  who I can see regularly and help deal with the restrictive aspects of living with such severe asthma. What I have found though is that I have focused so much on adapting life to cope with my asthma and the majority has been on pacing. I didn’t realise that a major area which we never worked on or spoke about was the severe life threatening attack that comes out the blue much like this last one was, and also the trauma after it. It has almost felt like a mild version of post traumatic stress because even at clinic last week I got this huge sense of fear when I saw those windows of the ICU again.

So tomorrow I have a variety of different appointments all at different hospitals. The morning I have the asthma nurse specialists for my mepolizumab injection and review with my consultant, then the eye pavilion to have tests done on my eye that has lost its peripheral vision and then over to the royal infirmary to see the psychologist and will go up to see work and discuss coming back.

I hope that getting back to work and routine will maybe improve the fatigue I have and give me a purpose to my day again.