Asthma Rule 1: ALWAYS have your reliever with you.

On twitter recently you may have seen that I had a small rant about something that happened the other day and I am still reeling over it. I think what got me most is that how are we ever going to change attitudes towards asthma if those with asthma are so cavalier about it.

I was at a Design Informatics Collider with a variety of industry partners, researchers, clinicians, researchers and patients. The theme of the event was ‘Design Support for Asthma’ and what can be done to help asthmatics or those who care for asthmatics which in turn would help asthmatics. There was a group of us patients there from the patient an public involvement group at the Asthma UK Centre for Applied Research. I have met most of the patients before who were there and as always it is great to meet new people in the group too.

So what happened??

One of the patients there was chatting about their asthma and their asthma control but then announced and announced proudly that they had not brought a reliever inhaler with them for the trip (baring in mind they came up by train and stayed overnight). They had their preventer inhaler but stated that their asthma was so well controlled that they knew they would not need their reliever. I was gobsmacked by this, and even quite angry about it especially the pride that the statement was delivered with.

Asthma is such a dangerous condition and there has been so much in the press recently about how many people die from asthma, how under funded asthma research is and just generally how bad the asthma situation is. The national review of asthma deaths (NRAD) which was published 2014 highlighted just how dangerous asthma is and how it is those with relatively mild asthma that are at the biggest risk from death and this year the news broke that rather than there being an improvement in the asthma death rate it has in fact got 20% worse not better.

I feel really passionately that even if you are so confident in your asthma and asthma control as an asthmatic you should never leave without a reliever inhaler especially if you are away overnight. For me my inhaler is my security blanket. I always have a ventolin (reliever) in my pocket, even when in hospital and on oxygen and nebulisers I still have my ventolin in my pocket too!! Asthma is such a fickle disease and you never know when a trigger is going to cause your airways to react and tighten up. The reason that was given for not having a reliever with them was that the weather was ok and they would not be affected by any triggers despite saying in the next breath last time they were up they had to climb stairs and were in a really bad way after this- there was no guarantee that there would be no stairs this time round.

I think the main thing that got me was that being involved in AUKCAR and being a member of the PPI group you would think that those in the group are those who are proactive about their condition, wanting to set a good example and manage their condition to the best of their ability. To do this one of the key things is to have all your medications with you. It may end up that you don’t need it, but its better having it all with you and not require it then need your reliever and not have it. Asthma and our airways don’t stop and think that they better not tighten up and become symptomatic because your don’t have your inhaler. They are going to do what they want when they want.

I am still reeling over it and so glad that there were no members of the children and young persons group there because they are impressionable and may think that because someone older than them is not carrying their reliever with them so they don’t need to either. I feel really passionately that if you are part of a group and forward facing attending groups where there are a mix of different professions who are putting a lot of time, dedication and effort into a career of helping those with asthma then you need to be acting in a responsible manner and not bragging that you don’t carry a reliever inhaler because what researchers or clinicians are going to want to help asthmatics when those they are consulting with are not being sensible and taking their condition seriously.

World Asthma Day 2015

Tomorrow is World Asthma Day aka WAD!

This time last year I didnt think too much about it and never even thought I would be where I am today. I was focused on my Step Dad’s 60th birthday which happened to fall on WAD. I have never really done much for WAD. However last year for some reason I was compelled to put together a photo montage of how asthma effects me and what I can still do despite having asthma.

So much has changed both good and bad. It has been a huge rollercoaster. Sometimes I just want to jump off and other times I want to stay on it and never get off. Starting with the bad. My asthma has been really bad. My lung function is at an all time low, I find I am symptomatic a lot of the time, I am taking more medication than my 88 year old Granny and the rest of my family put together and this still doesn’t give me the quality of life I once had. I will however still fight for the life I want. I will not give up- mainly because I am too stubborn and won’t let my asthma win no matter how hard it tries!! (this is one of my downfalls as I fight it too hard and often don’t get help early enough- I am working on that though!!)

So for WAD 2015 I have put together another photo montage called “My Asthma Year”

So onto the GOOD!!

This year from WAD 2014 to WAD 2015 has also been awesome. What started as a bit of awareness making the video snowballed into something I would never have even considered possible. I am now part of the Centre Management Committee for the Asthma UK Centre for Applied Research (www.aukcar.ac.uk ). I am also a Patient and Public Involvement Lead (PPI) for Children and Young People within AUKCAR. It has still not quite sunk in the role I have been given and how much my work is appreciated by those in the centre.

I started off by being invited for coffee with the PPI Leader from the centre to discuss ways I could become involved and help. My particular interest is children and young people as my life as a young adult has been so effected by asthma, it would be great to use my experiences to help researchers help other asthmatics.

So from a chat in May 2014 to May 2015 and I am in the position I am in is totally brilliant and one I would never have expected. I remember at the start not really knowing exactly what I was doing back in May last year. The thought of reviewing a lay summary terrified me a bit but after the first few I found it fascinating and really enjoyed doing it. I was not sure how many I should be doing etc but as and when the requests came through if I had time I would sit and read the summaries and comment. Because I found I really enjoyed it the time aspect never bothered me. Many who I would meet with from the centre commented on how much I was starting to do. I was not aware of this and didnt see it as a lot. From a personal point of view the Centre came to me at the perfect time as I was reducing my hours at work so reviewing summaries and patient information sheets filled in the time nicely. It also gave me something productive to do when waiting for my nebulisers to finish.

Later that year I was invited to the 1st Annual Scientific Meeting in Oxford with the AUKCAR and found myself speaking infront of all who attended. My public speaking was not the best and I was very nervous. Breaking down in tears was not my best moment but ironically it got the point across to many just how serious asthma can be and how much it can effect peoples lives.

Since joining AUKCAR I am so proud of what I have been able to contribute and in so many different ways from speaking at the meeting, taking part in teleconference calls, reviewing lay summaries, reviewing participant information sheets and ethics sheets, being part of 2 patient advisory groups, reviewing PhD proposals, helping students who are under taking PhD’s in the asthma field, helping to start our Children and Young Peoples PPI focus group, being part of a focus group surrounding the volunteer database which is one of the aims of AUKCAR to set up. The list is never ending on all the different opportunities I have been given as a result of joining AUKCAR. I am so grateful for it and those who are involved. I will never be able to express in words how much of a positive impact AUKCAR has had on me.

I am not doing anything particular for WAD. I will be thinking of all those who have died from asthma. Particularly the 7 friends I had to have all died as a result of asthma or complications such as cardiac arrest due to an asthma attack.

I will leave you with the post I made a year ago about WAD 2014

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Harsh realities hitting hard.

I was reading another blog of someone I know who also suffers from Brittle Asthma which has been so badly controlled by Drs that she has a lot of lung damage as a result requiring oxygen 24/7 now. I found myself in tears reading the posts something which I don’t often find. Its not that I am not emotional but I try and stay detached when reading posts by others who have conditions effecting their lungs. It is purely selfish I do this because I then dwell on my own situation and can relate that to these other people who write about living with Brittle Asthma.

Not only is it a constant battle everyday with our lungs to stay healthy, take medications and just get through the day but there is the other fight. The fight to get the correct medical treatment when it is needed. The fight to get Drs to listen to us and for them to understand how far from normal activity you are. There is not your own personal fight but the bigger fight. The fight to change perception of asthma and how serious it can be.

Frontline staff still don’t understand that asthma they think you can wait before getting treatment. I never forget being taken into hospital laughing with the paramedics because I was not that bad but was bad enough to need hospital. I was left until it was my turn and because no one checked on me despite the paramedics telling the staff I had brittle asthma I was left. When I was seen I was in bad shape and taken into resus and on to high dependancy all this because no one took asthma seriously. A quick once over and a few nebs put on me which I could of done myself and I would have been out of there in under the target time but instead they left it. In the end, they needed more staff to look after me, more drs needed, more nurses, more medications, scans, a critical care bed which cost the NHS a huge amount of money which could have been solved by dealing with the asthma promptly or at least when I told them I was getting worse and needed a nebuliser.

I know people reading this will think that the unit was probably very busy and it couldn’t be helped. I would have understood that but when you ask a passing nurse for a nebuliser because you not feel that great and are told to wait my turn as they need to put someone on a bed pan first who needed it. I am sure the person needed the toilet but what is worse someone having to wait to use the toilet or someone having to wait for what is their life saving treatment. To me it is a no brainer. As a result I will never go actually un well to that unit again.

When you are told to wait when you are fighting for breath is the scariest thing. You don’t know how long the wait is. You sit puffing on your inhaler hoping that eventually after the 20 or so puffs you have had you might just get a little bit of relief but you don’t get any relief until it is past the point of no return and you need proper help in the form of IV and nebuliser drugs.

It is widely known among people with asthma that asthma is not taken seriously enough. But how can we make all those non asthmatics out there realise this to. People die from asthma everyday. I don’t want to be one of those that die but fear it is a very real possibility if front line staff do not change their attitude about asthma. I do a lot of work with Asthma UK and the centre for Applied Research but sometimes I do wonder what it is all for. Will change ever be made. Will we manage to get the word across that asthma won’t go away with a puff of a blue inhaler, there needs to be proper protocols and action plans in place not only for patients but for staff to.

I am terrified of thought of having an asthma attack that might kill me. Not so much about the fear of dying but the fear for my family. I have seen how broken my grandparents were when they had to bury their youngest son, my uncle who suffered a traumatic head injury. No parent needs to do that. This is my fear. My fear of what it will do to them. For me I won’t know about it. I am sure it will be scary but no scarier than any other attack as during every attack there comes a point when you are just too exhausted to keep fighting to breath but somehow you find that extra bit of strength to keep squeezing the air and out those tiny bronchi to keep you alive.

I can only do what I do to try and spread the word about how serious asthma is and how it can kill. I have a bigger platform than most to express how bad asthma is, share my story about living with asthma and where the short comings in asthma treatment are. I have my blog which some people read, I volunteer with Asthma UK but the biggest one is that I am involved with the Asthma UK Centre for Applied Research where some of the greatest asthma researchers around are trying to make life better for us! For as long as I can I will keep doing what I am doing. Know one knows what the future holds for anyone. I take each day as it comes just now as each one if very different and never know what I am going to wake up to!

Spread the word on how serious asthma is and highlight the importance on the need for change.

A cure would be great but control would be better.

Anyone with asthma or even any long term condition wants a cure to be found for their condition. A cure would mean so much, less medication, no hospital appointments, less time miss off work, ability to get travel insurance, do the work you want, play the sport you want, sleep a full night, not feel isolated, be independent, no hospital admissions, able to not live in fear, have no fear of dying or friends dying, being able to have a life again.

However, as anyone with a complex long term condition knows a cure is not just around the corner. In my lifetime there has been one asthma specific new drug and another which can be used for asthma and allergies. That is 2 medications in 29 years. On average it takes 17 years just now to produce a new medication to treat asthma.

Yesterday I was at the Cross Party Group meeting for Asthma with Asthma UK at the Scottish Parliament which was a great meeting. It was focusing on the need for more research into asthma. It has been chronically underfunded for years and years. However after the NRAD report into asthma deaths there have been some fantastic opportunities for Asthma Research. The Asthma UK Centre for Applied Research was launched, Asthma UK is involved in the European Asthma Research and Innovation Partnership (EARIP) and asthma has become a condition which the FARR Institute is going to use as a blueprint for the way in which long term conditions are diagnosed, monitored and treated.

It is fantastic that there are some world leading researchers wanting to make a difference to lives of people with asthma. One thing I did notice yesterday was the focus on a cure which was talked about by one speaker. I would love for there to be a cure and for a reason to be found of why asthma is so complex and difficult to treat in some people. The more pressing thing is to find a better way to manage asthma. By managing asthma better the quality of many asthmatics life is greatly improved.

This is what I love about AUKCAR. I may be biased but they recognise the immediate need for asthmatics rather than focusing on discovering a cure. The need for better management, reducing hospital admissions due to asthma and the most important reducing asthma deaths.

By being part of the CPG and AUKCAR I can help make a difference. It may be small but small is better than nothing!

Review of 2014

It has been quite a year this year. So much has happened!!!

January- I started working in the Community Dialysis Team and it has been fantastic. It has not gone quite as planned. I had hoped that moving to CDT would mean my health would be much better and I would be able to get my old life back. This has not quite bent he case. I have had to reduce my hours to part time which has made a big difference. January also was the turning point where I realised that I would not be able to get back playing lacrosse or running the half marathon in May. This photo is from my birthday with my nephew!

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February- I was admitted to hospital. It was what I thought at the time one of my most terrifying hospital admissions. A nurse on one of the wards I am admitted to regularly told me I knew what it was like to be dealing with asthma and I shouldn’t be scared. I was terrified and exhausted and told be told this was enough to tip me over the edge. I never thought I would experience this especially from people who knew me and know my asthma. I ended up discharging myself. How can you stay somewhere when you have to hear stuff like this.

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March- this was a great month. I went Canada. A massive turing point. 10 years since my asthma really started going down hill which was precipitated  by pneumonia I got when I was out in Canada ski instructing. I had not been out in Canada since then. Emotionally it was really tough going back somewhere which turned my life around. I was going back there on my own. I was staying with family which did make it easier but it did also show just how much my life has changed. 10 years ago I was able to  ski a whole day and not need to take breaks or finish after a few hours!!!But it was fantastic to go back there and in a way face my demons I left there. I did though miss my nephews first birthday as I was flying.

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I also got to catch up with an old school friend while I was in Canada. Its strange when we were at school together we never really got on that well. But Angela came over to stay with a mutual friend Jenni and we grew to be great friends drink that year and when I was over in Canada I had to go see her and we had a great time!! It was just a pity that it was such a short time I had to see her!!

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April- I went to the respiratory nurse specialist clinic for the first time. I did think this would be a turning point in my asthma but it turns out it wasn’t. April really was essentially a non eventful month. I did have a few asthma attacks. had to miss some golf but all in all it went by with no specific events I can recall!

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May- this was a massive month and one I will remember for years to come. Infact it was 2 days which I will remember as they did change my life. It started on the 5th where posted a video for world asthma day which is on the 6th. It was seen by Asthma UK and I was asked to do an interview for the Guardian about asthma and Dr’s not listening to their patients. I was playing golf with my step dad and step brother when a photographer followed us round th golf course for pictures to go in the newspaper. It was published on the 6th which was also my step dads 60th birthday. That morning I got a phone call to do a phone interview and speak on the radio as the National Review of Asthma Deaths had been released. As a result of the interview I was asked to attend parliament for the launch of the new research centre of excellence for Asthma. Here I met some fantastic people and was asked if I wanted to become involved in the PPI section of this centre and I said yes. The rest you can read in my blog.

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June- I had an appointment with Cardiology as was having problems with my heart. It all turned out to be a side effect of my asthma meds. June was a stressful month as my Granny got taken ill and we thought the worse. She was very poorly and we thought the worst. Remarkably she is still here and doing not to badly. My step sister also got married down in Wales. It was a fantastic day and she had a lovely day!

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July- I had a week away playing golf in the Highland Open. It is a fantastic week. I love it. Getting to see friends and have a bit of competition. The weather was amazing. I again qualified for the scratch but got knocked out in the quarter final! It was a good rest.

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August- I had some wonderful trips to different golf courses in Scotland such as Kingsbarns which was rather eventful- thunder and lightening!!! I also thought this was the month that I would manage to taper my prednisilone down to eventually get off it but as the year moved on this was not the case. It was nice to think though that I might have got off it!!

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September- a family holiday to Portugal!! The usual golf holiday with my Dad and Stepmum but this time my brother, his fiancé and my nephew came too. It was a lovely break away!! This holiday however was also point in which I would go from working full time to working part time. On a more positive note though I did see as it turns out my new consultant. I had originally gone to him for a second opinion and Im not sure how it happened but it seems now he is my consultant and my old consultant is no longer my consultant.

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October- In february I thought I had the worst hospital experience I would ever have. How wrong I was. October was the worst experience I have ever had and hope no one ever has a similar experience. I did make a blog post about it and it was protected with a password but now I have taken the password off it. I want all to read it and understand that this must never happen. It makes me realise that no wonder the statistics about about asthma are so bad if this is how asthma is treated.

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November- I had a the experience of a life time. I went to Oxford with AUKCAR for the academic launch. I was able to speak to some fantastic people and have made so many contacts as a result of it. I have got a few projects to be involved with which is fantastic as now it means that rather than fundraising for asthma and to try and make a change by giving money I can now help make a change to asthma by helping with research. This is why May was such a big month for me. Had I not done that video for World Asthma Day I would not be involved with AUKCAR and I love every minute of it.

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December- has been more of a reflective month for me. There has not been much going on. Mainly I have been gearing up for Christmas and trying to keep myself well. I also started a new project where I have asked various people I know if they would like to write a guest blog about their experience with asthma. I have a few more to post which will be done in the new year.

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2014 has been a mixed year. A year of highs and lows, ups and downs. I have learned a lot over the year about myself and my asthma. By being involved in AUKCAR it has made me change my attitude towards how I approach my own health. I used to try and avoid going to hospital, or increasing my medication and often would do things because I wanted to even if I was not well enough. However now I think I take my condition more seriously. I also know that being involved in AUKCAR with one of their aims to be to improve self management and reduce hospital admissions I need to act responsibly and take action when I start feeling unwell following my own self management plan. Medication adherence and compliance is one of the big issues and I would be contradicting the ethos of AUKCAR if I did not act as I do now. I used to act totally the opposite and would do all I could not to increase medication and often to y detriment.

I am looking forward to 2015 and all it brings.

Friends lost and why change is needed so desperately

It is this time of year where we are so grateful for our families and friends. We can celebrate Christmas and see in the New Year surrounded by those we love and cherish. That being said it is also a time for many families to remember those who are not with them. Those who have been taken too soon or those who have passed away due to old age.

I come from a very big extended family and have so many surrounding me but I still do not forget those who are missing. My uncle who sadly died far too young in a tragic accident and other members of the family gone to.

It is not only family that I think about but those friends I have made over the years that have lost their battle. That battle with asthma which kills roughly 3 people every day. To me people don’t die from asthma, they are killed by asthma. Why do I think like this?? because no-one should suffer such a bad attack or have their asthma so poorly managed that their life is cut short and taken because of an asthma attack and often the consequences there of.

When I spoke in Oxford at the first scientific meeting of AUKCAR in the PPI session, I closed rather emotionally saying that the centre would succeed in my eyes if after its first 5 years the number of people I personally knew who had died of asthma remained at 6. I am 28 (soon to be 29) and know 6 people who have died as a result of an asthma attack or the consequences of a poorly managed asthma attack. These 6 people all had asthma as a cause of death on their death certificate. This should never have been the case. Those 6 should still be living their life. Enjoying their family and friends as I am able to do. This is why I fight and volunteer for the Asthma UK Centre of Applied Research and Asthma UK to make sure everyone understands that asthma is so often mismanaged and poorly understood resulting in far too many hospital admissions and deaths.

My first experience of someone dying from Asthma was 8 years ago and it sticks so vividly in my head the day I heard the news. When I was living in Winchester I was often a patient on Shawford Ward at the Royal Hampshire County Hospital. This was where I first met Jeanette and her family. Her family adopted me so too speak as my family were up in Scotland and not able to come and see me very often. Me and Jeanette spent about 3 weeks in the same bay in the ward and I got to know her very well. We became firm friends. She was much older than me. She had her own kids and grand children but we got on so well. She made that hospital stay so much easier. I was in hospital that admission for 13 weeks. Even once she was discharged her husband would drive her in to see me every week. Once I was discharged I would often go round to her house and watch DVD’s and have afternoon tea. Her husband was the most amazing baker. (He would bring his cakes into hospital for me!!). Jeanette’e health slowly declined as her asthma became harder to control and more infections caused lung damage. I moved back to Edinburgh but when down visiting friends I would always arrange to see Jeanette and her family. The last time I saw Jeanette I was so shocked. She was in hospital- on Shawford Ward and very poorly. Her breathing was so bad and they just could not get it under control. Due to such a long period of poorly controlled asthma her heart struggled and eventually her body could not cope and she salt died. They did so much for me and it was such a pleasure to be able to repay those visits with my own visits.

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(The photo above was taken during that long 13 week admission. My friends on the rugby team were about to leave university. When joining the rugby we had initiations to the team. The members of the team not leaving decided to do initiations to life for the leavers. So as part of it the nurses allowed them to come in and visit me on the ward in fancy dress to cheer me up!!!)

The day I found out Jeanette died I was up in Edinburgh. I didnt tell anybody at first. I dent know how to. I almost couldn’t believe that she had died and it was because of asthma. Part of me was scared because I have asthma, I have poorly controlled asthma. I was asking myself could this be me, could I die? I could not make sense of what had happened. I was meant to be caddying for my step mum in a golf competition. I couldn’t focus. I forgot my golf shoes and had to buy new ones. I dealt with it the only way I knew how. I just didnt talk. When I don’t talk my step mum talks more and asks questions about why I am not talking- knowing something is wrong. I ended up snapping at her over something so small and insignificant I can’t remember what it was but i just came out with “Jeanette died and I don’t want to talk about it”. I don’t think I ever actually have spoken about it or how I felt. This is probably the most I have ever opened up about my first experience of someone I know dying from asthma.

I draw comfort in knowing that Jeanette will have died with those around her who loved her but also in a hospital ward which to this day I can not praise highly enough. Shawford Ward in Royal Hampshire County Hospital is one of the best respiratory wards I have ever been in. The staff are so caring and highly skilled. Even when they are stressed and run off their feet they make time for you as a patient. I remember countless nights struggling to breath and nurses would sit with me to make sure I was ok. The care assistants would come and chat and help me learn how to do my sub cut infusions myself. When I was getting better and on that long road of recovery to discharge they would get me helping them out doing the menus and the teas as this was the time many patients had visitors but being at university my friends would come in the day but my family were so far away the nights were hard. I don’t think I have ever really thanked them in person for all the did for me. So knowing that Jeanette was being looked after by them brings comfort. Rest in peace Jeanette.

There are 5 others along with Jeanette. They did not impact on me quite as profoundly as Jeanette’s death did and I don’t know why. I think it is to do with all she did for me and what her family did for me. I grieved for the other 5 as you would for anyone. From my own experience of severe asthma and uncontrolled asthma I did not feel particularly shocked that I had 6 friends who have all died from asthma. I think because 4 of them had asthma much like my own. I have had that feeling of not knowing if I can take another breath, or have the energy to continue to fight to breath and wondering if I will survive. It was not until May this year that I really took notice that I should not have so many friends who have died of asthma wether it be very severe or mild. The publication of the National Review of Asthma Deaths shocked me. I was gobsmacked. I knew asthma effected a lot of people but seeing in writing just how many people had died and how many had died needlessly made me sit up and listen so to speak. I realised that my 6 friends who make up the NRAD statistics should not be part of those statistics but should be pursuing their careers or enjoying their grand children. They should not be a memory or that person missing from a family.

I hope that in some small way I can help to make a change. Make people stand up and notice asthma. Promote good asthma management. I know that by telling all those at the meeting in Oxford that I had six friends die from asthma hit home. They took notice and saw the real life emotion and impact it has. Researchers can read statistics and know percentages but hearing from someone with asthma who knows what it is like to fight for breath makes so much more impact and hopefully will drive researchers to find ways of understanding asthma better and ways to manage it more effectively.

In the meantime I will continue to do my bit. Raise awareness, support research, be part of PPI for AUKCAR and do anything I can to help make the change that is so desperately needed.

I leave you with this poem written to me by a friend when I was in ITU after an asthma attack.