Trauma of ICU

Finally I am able to sit down without getting upset or terrifying myself about my latest hospital admission specifically experience in ICU. The photo below may not look like much and you may think its a window and building but this is what has caused me to much trauma.

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Before anyone reads on please note this is just my feelings from it and my experience. The staff: nurses, support workers, physios and Dr’s were all fantastic and could not do anymore to help me.

This admission has rocked me so much. A lot more than any other has and I hope that I won’t ever get like this again.

There was a series of events I think which led to it all becoming too much once I got back to the ward and I guess basically I just broke down with fear that my asthma will kill me.

The lead up to being admitted was really rapid, as I said in my previous post where I spoke about the admission and how it went broadly speaking. What I didnt speak about was the true mental toll it took on me.

As with any trip to ICU in the back of your mind you know its not good because ICU is the end of the road in terms of hospital care you cant get any more treatment beyond what they an offer. I have been to ICU so many times, I cant even count the number of times I have been admitted there and come out the other end.

Once up in ICU there was the usual battle of trying to get a arterial line in which again failed and we decided to stop short of a cut down thank goodness as this caused me to lose the feeling in my left thumb and part of palm. High flow oxygen running various IV infusions and I had this feeling of being safe. I was in ICU and would be ok. Next came review from the consultant who said if things did settle next step is being intubated and ventilated.  I have had the said to me several times so I didnt think much more about it.

It was not until I came back to the respiratory ward that mentally I really found it tough. After starting to feel much better and access being an issue I was keen to be weaned off some of the infusions I was on. This didnt go to plan and a few hours after I really didnt feel to great so I let them know. Junior drs came to review and were concerned. It was late on in the day and about 7pm my own consultant came round to review me- that in itself freaked me as he was not even on the ward team but he came through. He wanted everything put back to the previous doses, have a whole load of nebulisers and be moved to the high care bay for close observations.

It was the move to the high care bay that brought so much flooding back and I felt that I just couldn’t cope at all. I have been in the high care bay before and never had any issues. I already felt quite on edge because by this point I had been seen by 2 consultants out of hours who came to listen to my chest and see how I was, have all my medications increased again and being moved. The move was what was enough to tip me over the edge. Once moved and settled I looked up and out the window and could see the ICU. The photo from above is below and I have marked where the ICU is.

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The combination of what the consultant said in ICU, and then getting worse on the ward and having consultants review me when they would not normally see you come in to review you and then seeing ICU again and the Dr’s talking about taking you back there was just too much. I think it was also because on the ward I was on the maximum treatment for my chest and just not getting better. The consultant was worried because I had been given 36mg of salbutamol via nebulisers with little effect. Thankfully they kept persevering and my airways did slowly start to open and breathing became easier.

Its fine when you are acutely unwell and everyone is buzzing around you making sure your ok, listening to your chest, giving you nebulisers, doing your observations you dont get much time to think or worry about not being able to breathe. Its once your that bit better and left alone and normally left with the parting words- “rest and try to get some sleep” and the lights go out. That is when it hits you. Still feeling not great and still finding breathing a real challenge sleep is the last thing you are able to do. Its a very strange feeling when you are so exhausted you want to sleep but scared to sleep at the same time. Being in the dark makes everything much worse and I just got so scared. I couldn’t help but break down. I was able to speak to a nurse but they could not offer much as its not like there is a magic pill that makes fear go away and because of my chest not being great they cant give you anything to help you sleep. At night with less staff around at night they don’t have the time to stop and speak to you and make sure your ok. but at that time it was all I wanted. They did then send a nurse practitioner up who was great but even he said that the psychological support at night was awful and as nurses we are not good at dealing with things unless numbers tell us something.

Over the course of that night as my chest came and went some nurses kept coming and saying to me all my numbers were looking better so I am doing ok. I think this is one of the statements I hate more than anything. I don’t care that my numbers may be ok or better I still feel like crap and having good numbers does not help with the crippling fear I am experiencing.

Once morning finally came around I felt really stupid for getting so upset but was able to have a chat with the Dr about it. I knew it was a vicious cycle of being upset, makes my breathing worse, which makes me more upset as I get scared it means going back to ICU but it is so hard to get out of that cycle.

The fear of what happened is still plaguing me. More so than normal. I can rationalise going to ICU and the need for their help but this time is just different and I cant get it all out my head.

I am a week out of hospital now and really feel like I am no further forward than I was day 1 post discharge. Everything feels just as hard. I have no idea why. Part of me wonders is it because of the biologic therapy that is making it harder to recover or has this all taken a much larger toll on me than I expected.

I have clinic next week and I hope to go through everything with my consultant and make sense of it all. I also hope he will have a reason for me feeling so rubbish despite being home from hospital.

I think this whole thing has just highlighted that no matter how many asthma attacks you have, or how many hospital admissions you never know when you will hit breaking point or when you just cant keep fighting.

The Verdict!!

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I have been fairly quiet recently mainly because I was terrified. I have had 3 doses of Mepolizumab and was due to attend clinic and see my consultant for the verdict and find out if I am staying on it or not.

The good news is that I am staying on it for now.

Clinic went well. I am so glad that I had that horrific hospital admission that made me decide to change consultant because it has been the best thing I have ever done. It has come with some issues but overall it has been one of the best things I have done.

I had lung function and FeNo both of which were marginally better but what I have noticed is that I am more stable overall. Recording my peak flow has been super helpful and I can identify what causes were when they dropped whereas before I had no idea and it was all over the place. I would love my peak flow to increase but I am happy for stability over gains (gains are unlikely due to the fibrosis in my lungs now).

The other difference this consultant has decided on is with regard to my steroids. Previously it has been a rush to get me down to the lowest dose possible and see how I go but that has always ended up badly and I spend more time on higher doses and it felt like I was on a rollercoaster all the time. Now, as much as we want to get me down to a reasonable dose and hopefully off prednisolone (wish me luck) we are acknowledging what has happened in the past and he kept me on 20mg which felt like ages (3 months) and then alternating 20mg and 15mg daily (2 months) and now I am to stay on 15mg until February March time and then we will readdress reducing it further.

So many people have asked me if I think the mepolizumab is helping. It is so hard to stay. I think it must be as I have been more stable but I worry that this is due to the prolonged prednisolone and super slow reduction but what I am hoping that it is a combination of both. I guess the time to tell what is doing what is if I get unwell (touch wood I don’t) and I can see how quickly I can respond to treatment and not need invasive treatment. I am aiming for this as know hospital is going to happen as my consultant has said this. He said he would have no worries about admitting me to hospital if either he or myself thought my asthma was not great.

We are also changing one of my inhalers. For the first time in as long as I can remember I had an outpatient clinic where my medications were reviewed and we looked at what I needed to keep taking and what could get binned. The only change he wants to make just now is removing the seretide inhaler and replacing it with Relvar a newer once daily preventer inhaler. He wants me to continue taking some extra fluticasone at night to tide me over as I still have quite significant dips in my breathing at night.

Im happy I now have a plan. Know roughly what is happening with my asthma and asthma care. Over the winter period I will be seen every 2 weeks. Monthly clinics with my consultant and then in-between I will be up with the asthma nurse specialists getting my injection and review there. Also should there be an issue I just have to call in.

The one thing out of all of this which I cannot let go of is why did it take throwing my toys out the pram and move consultants to be able to get in control of my asthma or have a plan to get control of it. I just want answers and I know I won’t get them but I am now trying the treatments I have been asking about for a good number of years. I know dwelling on it won’t help but when its your life that has been suffering it is hard.

2nd dose of Mepolizumab in the bag

Thats the second dose of mepolizumab done and dusted. Now to wait till next month for my next injection next month.

So many people have been asking me how I feel and if the new drug is helping or making a difference, or ask me when I will start noticing the benefits. Its really hard to tell. I am feeling some positive effects from it I think and there have been a few side effects but nothing major.

The most telling sign is that I have noticed my peak flow has been increasing and I have not been in my red zone since the 19th September. That is a full 10 days. It may not seem like a great achievement and many will not agree with me for being excited that I have gone ten days and not dropped my peak flow but the nature of my asthma has meant that my peak flow is all over the place and so has my control been. I must say my asthma control has not been poor through my own choice and I have tried desperately hard to keep it n control. I have not managed to get into my green zone since June but I am happy with that. Better to be stable and sitting in my amber zone stable than jumping up and down with readings all over the place. I think slow and steady is the way to improve….it has after all only taken 14 plus years to get to this point.

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Other than looking at peak flow results and keeping track of how much salbutamol (both nebuliser and inhaler) I am using how do I actually feel? DoI feel different?? It is hard to say. My prednisolone dose has not been reduced and has been kept at the same dose since I was discharged from hospital in April. I am finding it hard to identify if feeling well and pretty stable is because of the steroids or due to the introduction of the mepolizumab. Once I have my 3rd injection I am hoping my consultant sticks with his plan and we can start the slow process of reducing the prednisolone. I am aware I won’t get off it (or may get off it and converted to hydrocortisone due to adrenal failure) but lower will suit me just fine.

Since starting the mepo I have not been to bad with side effects. After the first I had a bad headache the first time but the second dose was not as bad. A bit of a sore head but nothing to major. The one thing I have noticed and I am not sure if it is coincidence or what but I have been waking up in the morning feeling like I am drowning or choking on the amount of phlegm I have on my chest. I have always had a bit of a productive chest- it goes with the territory of having lung disease but this is different. I am still not sleeping super well but I am wondering if that because I am sleeping slightly better and not waking up so much the phlegm is building up rather than me waking having a cough moving all the stuff and then settling back down. I guess the good thing is that all the movement of phlegm means I (fingers crossed) won’t be as susceptible to a chest infection and may notice them quicker as everything is moving so will see the colour changes. Although this is good that I am moving stuff in my chest I find in the morning I am having to do more saline nebulisers and a lot of physio to move it and it has often made me sick because of it. This is a minor price to pay though in terms of side effects.

With this medication as I have said before I won’t see improvements over night but will over time and I think I am starting to see them. The other thing I have noticed and finding it more and more is that people are telling me how well I look and don’t sound as bad which is probably the best part. The past 3 weekends have been jam packed full of different things- mainly lacrosse and by the end of each weekend I have been on my knees longing for my bed but I have managed them. I have managed to spend these weekends on the side lines of a lacrosse field, or in the middle of a lacrosse field coaching  with either Edinburgh Uni or Scotland (Scotland is just goalkeepers and assistant manager). A lie in over a weekend would be lovely and in the past weekends have been all about recovering and getting myself prepared for the next week of work but I have been able to use these weekends to do what I love and not suffer at work. Don’t get me wrong it was so hard to get up on Monday but I think most people find it hard to get up on a Monday morning for work so being what I called “normal” person tired is awesome.

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One thing I am very thankful for is having people around me who can keep me grounded and don’t let me get ahead of myself. I have always been someone who will try and do the long distance run before I can jog let alone walk so even though I may get grumpy at people holding me back I do appreciate it. Coach Dave at Scotland Lacrosse knows when to reign me in and make sure I just take it easy and ensures I just walk or rest when I perhaps am going full steam.

I have an excitement in my life just now something that I have not had in a long time. I look forward to being able to plan things in advance and not worry that I may need to cancel or not be well enough to attend. I am aware that there will still be times when my lungs just stop me from doing what I want but through this I have also learnt to appreciate life, not take it for granted and just live for the moment.

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Chronic Pain with Chronic Illness

I get my medication each week in a dosette box made up by my local pharmacist. I take so many medications that when I am not well I find it hard to work out what I have taken and what I still need to take. I now don’t need to think about what I take, I just pop them out the relevant space and swallow them down in one.

Today I noticed something though. There were 5 unopened pods from this last week. The 5 unopened pods were all my lunchtime doses of pain killers. I had not been aware of deliberately not taking them but because I was not aware of not taking them then that means I was not in pain and needing them.

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Chronic pain is one part of my health that I shunned for so long. I had always had this perception that I was weak because I was in pain and also was very aware that the Dr’s may think I was just attention seeking or drug seeking. I think I thought this because of the number of times I have seen and heard the conversations had when people come in to hospital with abdominal pain with no real cause and the suggestion of it being psychological or drug seeking.

For many years I lived with pain in my chest specifically the left side of my chest/lung. Part of me didnt want to acknowledge it and if I didnt then I would be ok but then it was harder and harder to function due to the pain I was experiencing. It was one hospital admission when I was in ICU and due to staffing I was being looked after by an ICU advanced nurse practitioner. I think her experience of being a nurse and seeing patients in pain she could tell what was real pain. I had not been asking for pain killers but she could see me wincing and struggling. It was only after she spoke to me about it that I finally admitted to the pain and feeling I had when I took a breath in, the pain was not nearly as bad when exhaling but felt like something rubbing and stabbing when I inhaled. It was from then I spoke up about it and we looked into what was causing the pain. From then I have reluctantly taken painkillers regularly.

Further investigation was done into the area of my chest where I had the worst pain. X-rays showed I had previously fractured some of the ribs- most likely occurring due to coughing and my slightly weaker bones but it didnt show anything major that would explain the sharp, rubbing pain I would get when breathing in but didnt hurt if you pressed on it. I had a CT scan which revealed why I was so sore. A lot of scarring in that part of my lung but also the pleura didnt look normal and the Dr thinks this is what is causing the pain and rubbing feeling. I have never really had a bad bout of pleurisy but the Dr said the way I was describing it the pain made them think it was pleuritic even though I didnt have the infection etc to go with it. I was told that the cause has most likely been due to the infection, trauma and recurrent asthma attacks over the years that have never really had much time to recover before the next thing hit.

Managing pain with a lung condition has really been a big struggle. Certain drugs are out of the question- non-steroidal anti-inflammatory drugs are a total no no and I learnt the hard way when I decided to try ibuprofen gel on my skin but had a full allergic reaction to it (I thought it was just if I took the pills). The aim with pain control is to eliminate pain and allow everyday function which is what I tried to achieve but have never been able to do. To get optimal pain control meant side effects which often meant feeling dopey. I got onto a regime using co-codamol and nefopam which helped although during the week I would use a lower dose of co-codamol due to it making me feel like my head was in the clouds but this meant by the end of the day I was in so much pain. It would feel like the outside of my lung was on fire- no matter how gentle you were you when you took a breath in the pain was the same. To control this part I had oral morphine that I could take at night before doing nebulisers and physio. I went with this regime for a few years until I saw a Dr who decided I should be switched to prolonged release morphine rather than the nefopam, co-codamol and oromorph mix. I was reluctant about this as had a handle on what I was doing and although the pain was never gone it was far more bearable.

The Dr who thought outside the box was a consultant who I had not seen before but was a respiratory consultant. He asked me about the pain and what it felt like, and also what was important to me about everyday function and that if I could I didnt want to be taking painkillers you can get addicted to! I was only 30 at the time and was already taking more painkillers than I liked and it was a worry for the future if I did something that needed pain relief I had this image that they would think I was a junkie because would need a higher dose of painkiller than I should. The Dr said his main concern was getting the pain under control for me to function and be relatively pain free but I should not be on prolonged release morphine etc due to it suppressing your respiratory effort which I can afford to do. I was so happy to know I wouldn’t be taking the MST anymore but a little worried about what I was going to be taking as could not go back to the pain I once had.

The Dr suggested lidocaine patches to wear topically on my chest where it hurts to see if this helped the main as he felt there is most likely nerve involvement and the whole area is constantly irritated which is why it is always sore. He did joke that you cant rest your lungs like you can a sore leg to let it get better!!

So a new regime of painkillers started which was the lidocaine patch, co-codamol 4 times a day and then the oromorph for when my chest is really bad (they also use it for breathlessness to). Since starting on this regime I have been stunned at how the patch has worked. It doesn’t take the pain away totally and the Dr said this is good as it means it will let you know when to stop!!!

Most recently since moving to my new consultant and being kept on the higher dose of prednisolone the pain in my chest has been no where near as bad. Instead of going through 2 bottles of oromorph a month I don’t even use a whole one and as I noticed last week I have not been needing my lunchtime dose of painkiller either. I am so happy about this. I have always had at the back of my mind I want to get off all painkillers so having a week of less pain and not needing the painkillers is great. When I see my consultant next I am going to ask if we can maybe just drop down on the dose of painkiller with a view to stopping them and just having the patch and maybe the oromorph for emergencies!

The lidocaine patch has been life changing- I do not understand how it works really but it works so I don’t care. I try not to wear them at the weekend to have a break and just keep them for work and weekends when I have lacrosse or something.

With each day that goes by just now I am in no doubt that I made the right decision to move consultant. If I didnt I am pretty sure I would have been in hospital by now. Staying on 20mg of prednisolone has got me through a chest infection without needing to increase the dose just a few extra nebulisers and antibiotics. Obviously 20mg of prednisolone long term is not good but I am hoping that as the mepolizumab starts working I will notice the difference and we can reduce the prednisolone!!

When is it going to start working??

One thing I have found since starting mepolizumab is I am constantly questioning myself and am almost preoccupied thinking about what results I may see and how my asthma will improve.

Its hard because with this drug unlike others there is no knowing when you will start getting the benefits and if you will get the benefits. If your chest is tight and you take some salbutamol your airways will relax and you can breath again without so much effort, or if you have a chest infection and given high dose prednisolone you notice the effects of it both positive and negative (I’m talking about the insomnia, restless legs, hunger) but with this I have no idea when I might start to feel better.

I track my peak flow and keep thinking I am seeing it trend upwards and wonder if this means the mepolizumab is working but then today I came crashing back down to earth. It was a bad night- up every hour, coughing, wheezing and getting more and more irritated with the noise coming from my chest. I knew before I blew my peak flow and it would not be good and I was right. It dropped- a whole 150l/min.

I know that just because of the mepolizumab I am not always going to have great peak flows and my chest will still have hissy fits but I guess what I am struggling with is knowing if my chest is just more stable (I have not been allowed to drop my steroids yet either) or its more stable because of the mepolizumab. Its a bit of a guessing game.

By the time I have my next injection in a few weeks I will have a lot more data and will have been able to capture a month of peak flows 3 times a day and will be able to get the average peak flow compared to previous months.

For now I guess I just need to watch this space!!

New drugs, new start?

I haven’t written in ages and I apologise for that but I really did not know what to write and how to write without getting myself angry and upset as I feel the last 8 years have just been a total waste.

I wrote a while back about changing consultant and hospital because I was really finding the relationship I previously had with my consultant was no more and my health was getting worse, I was getting put on more and more drugs and constantly riding a rollercoaster of feeling well and being on high dose steroids to feeling rubbish because my steroids were reduced.

So lots has happened since switching consultant. My first appointment I finally felt someone was going to do something to help. I was put forward by my consultant at their MDT meeting to see if another consultant would agree to me being a candidate for mepolizumab. Due to the cost of the drug you need meet certain criteria and have a second consultant agree to it. Thankfully another consultant agreed and the wheels were in motion for me to start.

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I didnt really know what to expect. Its not like other drugs you get by injection like any sickness or steroids where you notice a difference pretty quickly. This one it can take a few weeks before you notice positive effects from it but Im not sure what I will feel and what the positive effects will be. Will it be the nights are better and I won’t wake up so much needing meds or will my peak flow be increased or able to do more during the day with less symptoms??

Time will tell how it goes. For me because of the steroids I am on they are going to use my maintenance dose of steroid a marker for effect of the mepolizumab so if I can reduce this then we can move forward and continue on the mepolizumab but if I cant reduce them without my chest getting worse then I won’t stay on it and will be back to square one and trying to find something else to help me.

Speaking to the nurse they seem to have had really positive effects and not many people have had to stop. Also the side effects have not been too bad apparently. A bit of a headache and back pain seem to be the most common. My head has been killing me but it is easing off and if that is the only side effect I cant really complain because a headache is the least of my worries as the pain and suffering from my chest over all these years far out weighs a sore head!!!

There is deep seated feeling of anger in me which I need to get over but I just cant shake this feeling of having wasted my time with my old consultant. Everyone told me she was the best but I guess the best is not always what works and it really didn’t for me. I asked so often to try different things anything to try and get some stability even asked to stay on the higher dose of steroid as I knew this was what my lungs were happy with but it was always a no and just had to persevere and would get there. Clearly that didnt work as every attack I ended up in ICU or HDU and so much time off work. If it was not for understanding bosses I would be out a job and have no purpose or aim to try and get myself well. I am really angry that it took a horrible admission to hospital and me essentially getting so upset that I was getting no where and people asking me if I had tried x,y and z and all I could say was no and they look quizzically at me like I am mad because my asthma is so uncontrolled yet I have not even been considered to trial some of the more medications till now.

I need to keep myself grounded though. Even though the results of this drug in others has been fantastic I really don’t want to be disappointed and pin all my hopes on it to then be totally devastated that it doesn’t work or it doesn’t work well enough to justify keeping me on it. Even with the best results there can be from the mepolizumab my lung issues won’t totally be cured as the years of uncontrolled asthma have caused a lot of airway remodelling and scarring which cant be reversed.

Fingers crossed the next three months are full of good things and I can stay on the mepolizumab as I desperately want my life back or even just some of my life back where I don’t have to spend all the time I am not working resting to make sure I am then able to work the next day.

Will keep updating as I go and if I see effects from it.

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!!!