One of the more unusual side effects of prednisilone

or at least we think it is. Otherwise it is just my body being weirder then it already is.

After over a decade of being on oral steroids I thought I had come across most of the side effects. I have not experienced all of them but have heard of them or at least I thought I had.

Prednisilone suppresses your immune system making you susceptible to anything and everything that is going. One of the big ones we get warned about is chicken pox and shingles. If we are ever in contact with someone who has them we need to get in touch with our medical team. Over the years I have had to do this a few times and received treatment to protect myself from getting either virus too. The treatment is not fun. It is injections of varicella zoster immunoglobulins which is essentially 10mls roughly of a vaseline type substance into your muscles. Then some acclovir as well if needed. Each time i also get a blood test to see if I have any immunity to either virus. My blood tests always come up negative meaning I have no antibodies to it. I have also had the shingles vaccine which is the odd part. Despite having the immunoglobulins and the vaccine I still have no anti bodies when I should.

I get questioned so often if I am sure that I have had chicken pox (my parents assure me I have my Drs on the other hand say that because my bloods say I havnt!!) then I also get the question if I actually had the vaccination to it. Sometimes I think people must think I am bizarre but it is my body just being odd and I do think it is due to the prednisilone. It does things to your body that you would never think a tiny wee white pill (or 8) could do. The benefits the drug has is that it keeps me alive but the side effects are unreal.

When studying for my nursing we all had to have the Hepatitis B vaccine which is a course of injections given over a period of time with a blood test to see if you have taken up the vaccine and then depending on that blood test a repeat course of the vaccine or a booster dose. Well after the first course and the blood test I was once again being questioned if I did actually have the injections- of course they knew I had the injections because the stickers off each syringe were in my notes but my blood test results were as though I had never received any injection. So I had a repeat course and another blood test. The result of that blood test was exactly the same as the first time so we decided we would leave it there, when I say exactly the same I mean 0.

After my recent experience with chicken pox and shingles I was thinking back. I ended up with flu after having the flu vaccine I think it was when it was swine flu (mainly coz I remember my mum visiting me in ICU dressed up in the mask, gown, gloves etc). All of these things have happened when I have been on long term oral prednisilone. I am not sure what my vaccine up take was like as a kid because you don’t really test to check a child has had a response to a vaccine, you just assume they do because they got the injection. I do want to speak to someone when I get the chance to ask about this because I am concerned that my body cannot fight like it used to, I just don’t have the physical strength so I really don’t want to be picking up something that I was immunised against as a child. I am hoping that these recent vaccines have not worked because of the prednisilone and not because of any other autoimmune thing that my body has.

I would be interested to hear from anyone that has had similar experience to me with vaccines and no uptake to them.

Making tough decisions

I was so happy and excited when my Mum said we were going to be going skiing in January. (I have not skied in over 6 years now. Once my life, I ski raced, I did race training and was on the slopes whenever I could. I moved to Canada to pursue my dream career). I forgot all about my leg and the small issue I have with walking. I was so excited at the prospect of getting back on the snow back doing what I love.

Then it hit me.

I have a leg that doesn’t work properly. How the hell am I going to be able to ski?

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(last time skiing in Les Saisies having the time of my life)

Being me I was determined my leg was not going to stop me. I went straight onto the internet and was looking up the Ecole de Ski Francais to find out about para skiing. Still excited about the prospect of being on snow again.

Then first frost hits and I find the icy conditions a major challenge with my leg. Walking is even harder than it previously was. I had a few bad falls which mostly bruised my ego as I felt so embarrassed being a young person falling over doing the simple task of walking. Combined with this I had a bad chest infection which hit me hard mainly mentally rather than physically.

It hit me mentally as it brought back memories of that last bad attack and how hard it was on me and my family. I started to have all of these what if scenarios. What if….

  • I have a bad attack out in France and I end up in the same state again.
  • I have a fall skiing and it causes me a chest injury compromising my breathing
  • I have a fall skiing or someone skies into me and I don’t realise my leg is badly damaged
  • I get unwell out there
  • I get stuck going into the village and cant get myself back
  • I end up hating skiing because I cant do what I used to as skiing was my life
  • I get jealous of all the others out skiing all the runs I should be skiing but Im not because I am having to rely on other people to get me about

I just had all these what ifs. Some of them really trivial things and some of them more serious.

It took me a long time but I decided I really cannot risk going out to France in the state my body is in right now. I am not going to be going out with my family and instead staying here at home.

Im not sure what had hit me harder the fact that I am not going away with my family or that I have myself accepted that I cant do something and have backed down. I normally always try and find a way around my limitations find a different way of doing things or through pure stubbornness just get on with things. I feel weaker now. I feel like I don’t have the energy to fight myself to find those routes I used to. It scares me that I am in this position now.

I am going away up north for Christmas looking forward to getting away and recharging, taking stock of everything and making a plan for the future as life really has changed a lot.

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(Skiing with my Uncle Rob in the back bowls of Whistler. Enjoying life. This was the last time I skied. It was about 6 years ago).

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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No-one is immune from a near fatal asthma attack.

Once again asthma has been in the press for all the wrong reasons. Despite the National Review of Asthma Deaths (NRAD) in 2014 it appears nothing has got much better. It was announced that asthma deaths in England and Wales (Scotland was not mentioned) are at their highest in over a decade. Over the years I have always asked why, why does asthma kill, why is asthma not well managed.

Well the other week I was reminded just how bad asthma can be and how it can never be under estimated. If asthma wants to win it will win despite all you do.

All the weather we have had recently has taken its toll on my asthma control. I tried so hard to ensure I was listening to my body, and make any changes that it required to ensure my lungs and asthma were stable. I found it very tricky to know what to do because unlike when you have a bad infection or cold you know roughly how long they will last and how much to step up medication to keep your asthma in check. This time it was different, it was the weather than was making life hard but it was not consistent. In the morning I was finding the weather was very muggy and humidity high making it feel like I was breathing through cotton wool but as the day went on the air cleared and I found it a lot easier to breath when the humidity dropped. It was like this for several days in a row and then perhaps there was a day where the humidity was ok. This made it a bit of a conundrum as to how to treat my breathing as I was not convinced an increase in steroids was going to help.

I reached out and spoke to my asthma nurse specialist at the hospital on the Monday. She gave me a plan which I followed however by Wednesday I was really struggling so I reached out to my consultant and spoke to his secretary to get some advice. I felt like I was in that limbo phase. I had increased my steroids on the Wednesday morning as per advice I got on Monday. I was finding it really hard going but was not at the stage of needing to call and ambulance and go to hospital but I need some help. Long story short I couldn’t get through to my consultant and then it was too late for me GP and there was no appointments so I was seen by the out of hours Dr who then sent me up to the hospital. From then it went downhill and went downhill very very quickly resulting in going to ITU.

I am going to do a separate post about the ins and outs of what happened when I deteriorated but with this post I wanted to focus on the importance of getting help.

Initially when I got better I was going over and over in my head trying to figure out what I missed or what went wrong for things to go downhill so quickly and escalate beyond measure. But there was nothing. I could not have tried to get any more help than I did, even getting help earlier would not have made a difference because the days before I spoke to the nurses the weather was ok and my breathing was not too bad (not great but not awful). The advice they would have given me would have been the same and that was to increase my prednisolone if my peak flow got to a certain level which I implemented when it did drop.

I consider myself to be some who has a good knowledge of asthma. I know about as much as I can about the condition. I take my medication religiously and don’t miss doses ever yet I was still able to have an asthma attack which was considered near fatal. There is a big push trying to ensure that people take their medications as prescribed and be vigilant with their asthma. Asthma is a disease that needs to be respected it does not stop and wait for anyone. It is important to remember that just taking your medication as prescribed does not make you immune from having asthma attacks. Getting to know your asthma, what triggers it, and what actions to take are so important. Had I not known all I do I am pretty sure that I would not be here.

I would urge everyone with asthma to make sure they take their medication as prescribed, know what triggers your asthma, have an asthma action plan and know when to get help and who to get help from. This really can save your life.

(I will be doing a further few posts about recent events. One which I will have password protected as it will go into detail about events in ICU etc and I know some may not want to read it. IF you want the password please do message me for it).

Smoking on NHS sites- it is STILL happening!!

I know many of you will think I sound like a broken record particularly as I have written several blog posts around the issue of the smoking ban on NHS premises. The first of my posts was back in 2015 on April 2nd. written after legislation was passed by the Scottish Government to implement a ban on smoking on NHS hospital sites. This came into force on the 1st April and must have been an april fool as it is still not been addressed. The links to other posts surrounding smoking on NHS sites are:

Over the course of time I have been in touch with various different outlets and services to try and get action taken on the issue of continued smoking on NHS sites. The situation for me has only go worse. It appeared that every day there were more and more people congregating outside the main doors of the hospital smoking. This could be a mix of patients, visitors and most shockingly people who worked in the hospital.

For me it got to the point that even coming to work half an hour early was not enough to avoid the people smoking. Eventually it made the choice on stopping doing clinical work easy as it meant I would not be putting my life at risk just to get into work. In fact the other week I had to go to the Royal for a ECHO of my heart, I called to have this rearranged because already feeling very chesty and unsure if I was going to need to be admitted, I saw this huge group of people smoking right outside the doors. I couldn’t risk going past. It may have cost the NHS some money by me cancelling last minute my appointment but it is far less money than the amount of money that would be required for me to go to A&E, +/- ICU, and the ward all because I tried to get into the hospital (a plan of safety I might add) to attend an appointment. In an extreme view the select patients that are smoking are preventing a group of patients accessing healthcare safely. What will it cost for this to be addressed.

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(Photo above was me after having an attack trying to get in to work a few years back)

Clearly legislation being passed in the Scottish Government is not enough. I am unsure why the issue is so much worse at the Royal Infirmary of Edinburgh than other sites in Edinburgh.

If the smoke did not have such a bad effect on my lungs physically I would go up to people and tell them they cant smoke there and they need to move off hospital property but that is just asking for a hospital admission for me. I think what makes me really angry and disappointed is that no one is willing to address the smoking issue.

I took the opportunity when there was uproar about parking and parking provision to use this to voice my concerns about the smoking. I got in touch with various MSP’s and had some great feedback from them and help from them however I am totally disgusted by NHS Lothians response. They wrote a letter to my MSP which basically says what they do just now is enough and no more can be done. What they said they have done is:

  1. Provision of support for patients, staff and visitors who wish to give up smoking
  2. Provision of advice regarding medication which helps manage nicotine withdrawal
  3. Promotion of education and training for managers and front line staff in the implementation of the policy

What strikes me with these actions is that it is all about what they are doing to help those that smoke nothing is there to help those who do not smoke and are being affected by those smoking. The actions are also leaving it up to the smokers to get the help. They are not actually doing anything to stop the smoking in places that are meant to be no smoking. The letter also sited the design of the hospital means that people are likely to congregate at the doors to smoke.

To say I was shocked, appalled at the letter is an understatement. The over riding emotion though was disappointment. My MSP had put that one of the reasons for me not working at the hospital just now was due to the issue of people smoking but this was not even mentioned in the response. There was a line that said they were sorry I felt the need to report this complaint and they apologise for the distress and inconvenience this has caused. Distress and inconvenience is an understatement- they clearly have no idea about what going to intensive care is like, what fighting for your life is like and knowing that the very place that saves your life is also the very place that could take your life too.

I have no idea what to do now. Will I be able to return to work in the hospital if this issue is not resolved? I don’t think so. I love my job, but I love my life (most of the time) and if doing my job is going to kill me can I really justify going back to work.

I will spend as much time as possible to try and get this situation the attention it deserves because there is no way it can only be me that is suffering. There must be hundreds if not thousands of other people being bothered by this.

Below are links to some posts I have written around about the issues I have dealt with to do with smoking and people smoking on NHS sites.

23 days on and its only got worse is a post I wrote 23 days after the so called smoking ban came into force. It appears to have only made things worse. I am not one for advocating smoking but the removal of the smoking shelters has made things so bad.

Returning to work in a fog of smoke is about returning to work after having an asthma attack as a result of second hand smoke. Reading it back I get quite emotional as I was struggling to accept that I had done nothing to myself to end up with lungs like this- often I wish I had done something like smoked as then at least there is a reason for my lungs being so bad.

Smoking on hospital sites reflecting back and just finding the issue getting worse and worse. Also thinking of ideas of things I could do that would maybe have some effect on those smoking that they would not like much like their smoke has on others.

Bad weather makes smoking worse

Passive smoking what does it mean

The NHS long term plan

Parking is not the only issue at the RIE

 

Feeling much better and more positive!!

Its now the end of the week and since my last post things have been a lot better. I must say the support I have received over this week from others who also have chronic health issues has been over whelming. It was both reassuring and shocking to read comments from people saying they could have written what I did as it could have been them. This is awful that so many people are struggling with their conditions and feeling isolated but then also gave me reassurance to know I am not over reacting about the situation I find myself in but it is perfectly normal.

But this shouldn’t be perfectly normal when living with a chronic health condition. It has really rocked me reading all these comments. I thought maybe one or two people might have had a period of time feeling similar but not the sheer number. It has really made me want to do something to try and combat this but I am not sure how and I am not sure what to do.

The wanting to do something was reinforced today even more so when I met up with another severe asthmatic in Edinburgh. It was so easy to talk and even though we had only met through a support group it was easy to chat and there was a mutual understanding of how shit life can be with severe asthma and the restrictions it can put on your life.

Feeling a lot more positive about things now and know I am not alone and can ask for help. It is not a weakness to need help but a strength to recognise when you need to ask for help.

Tomorrow I have a busy day as it is the Leith Gala Day at Leith Links and the ICU Steps Edinburgh support group which I am part of have a stall at it to raise some money for the charity and raise some awareness about us and what we are there for. In-between doing that I am at the Sick Kids for the launch of a children’s patient and public involvement group too and will speak briefly about my experience of being in a PPI group. After that a trip up to Thurso to see family to really clear the cobwebs and reset the clock ready to face the world again.

 

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

And how to keep them happy and feeling valued.

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

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

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

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

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

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

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

Twitter: @MarkThomHudson