I want to thank Jo for agreeing to do a guest blog. I have only met Jo recently through online groups but as a fellow nurse I thought it important to get her perspective on how difficult it is to maintain a career which you love and deal with very difficult asthma. Jo also has the same issue I do in that she gets admitted to the same hospital she works in. Here is Jo’s view on asthma.
My name is Jo. I’m 25 years old, and have had asthma for as long as I can remember. I know I was diagnosed young, but not sure quite what age. And that’s probably down to the fact that it wasn’t really a major problem. I would get chest infections every winter, and wheeze my way through summer when hay fever made it worse. During my teens sports became more and more troublesome so I just didn’t play sports other than when I had to in school! I had pneumonia once at age 15 (in Florida, on a trip of a lifetime! Just my luck!). But I was lucky enough to be one of those people that when asked what my medical history was I could happily answer “just asthma”. Believe me, I will never say just asthma again!
The last time I remember having symptoms of asthma was around age 17, and then I got what everybody with asthma really wants – a break. 7 years with no regular inhalers. I had a Ventolin in the house somewhere I’m sure, but that was the extent of it. I still had hay fever and chest infections, but not as bad, and not as often. In those 7 years I finished high school, sixth form and graduated from university as an Adult Nurse. I started working on a High Dependancy Unit and started to progress in my career.
June 2013 I managed to struggle through another chest infection during a planned week off work, and then went back to work in July not feeling 100% fit. We started seeing to the needs of my patients, getting them up and washed, and obviously smelling good with a good helping of deodorant…which started my first asthma attack in over 7 years. I took my break to go and try and shake it off, but of course I had no inhalers. I quickly became very sick and ended up with the nurses, doctors and consultants I work with giving me back to back nebs, IV fluids, oxygen, some antibiotics (all in the staff room!) and then taking me down to resus as soon as I was stable enough. I was admitted for a week with pneumonia and my care was taken over by the asthma team and consultant in the hospital I work in. Now 18 month later, I have been admitted 13 times, with each admission getting progressively worse. ITU and HDU have now become a necessity when I’m admitted. I’ve found I’m allergic to aminophylline, I have severe brittle asthma with vocal cord dysfunction, laryngopharyngeal reflux (currently awaiting tests for GORD) and most recently, bronchiectasis. I’ve trialled my way through various different treatments, with theophylline failing due to allergies, and Xolair just not helping enough for them to justify spending thousands of NHS pounds on a treatment that makes me feel better, but doesn’t make my numbers or admissions better.
But through all of this, the one thing I’ve tried to do is keep working. It’s not been easy and at times, it’s felt like I’m fighting a losing battle. I know people want what is best for me, but there have been times management have considered redeployment or ill health retirement as my best options. Thankfully occupational health doctors agreed that this is currently unnecessary and so I am still hanging on as a critical care nurse. I love my job. I worked hard for 3 years, had little social life gaining my degree, working full time hours for nursing placements, whilst writing essays and revising for exams. It’s an achievement I don’t want to willingly give up that easily. Plus I had the great privilege of helping people who are seriously ill. After being in that position myself, I really don’t take that for granted, I know how these people are feeling and I know how the nurse can really influence your stay, and crucially your future health by making admissions as positive as can be.
I’ve been off work 9 times in the last 18 months, sometimes for a week or two, but other times for 3-5 months. Each time has been hard work trying to get adjustments in work, I believe that even with this many admissions and absences, and a fair few of my admissions being straight from work, people still looked at it as “just asthma”. It hasn’t been until this last absence (the 5 month one) that they finally seem completely supportive. As Olivia has mentioned in her blog, it’s hard to avoid your colleagues and bosses when you’re a patient in their hospital, but it’s even harder when you spend a week on their ward! They finally saw that this isn’t “just” asthma, I’m not “just” sick and it’s not something I can “just” get on with. It wasn’t a nice experience feeling so ill and knowing how bad everything was, and having my friends look after me, that can’t have been easy for them. I guess it’s partly my fault that people didn’t see quite the extent asthma has effected me. I like to get on with things and not let asthma win, so I’ve always struggled on, but this time, I had no choice but to let them see.
So I am getting back to work again, and I am so looking forward to it! It will only be 3 weeks after my last and worst admission, but the proper adjustments have been made. I won’t be working on the ward for around 6 weeks, and then I’ll slowly be introduced back into working with patients after a while doing the office work. I really can’t wait. I’m lucky that I can use my experiences to better influence my work. I know how it feels to have an arterial line, or so many lines and wires coming out of you that you can’t even scratch your nose without fear of something important coming out. I know how it feels when your monitor starts alarming, when you’re told your oxygen levels are “a little bit low” so they higher your oxygen up, when you’re struggling and the room is suddenly filled with doctors and nurses and anyone that’s free because you’re actually getting seriously ill and fast. I know we may all go through this, and nobody that has been through this or worse will feel “lucky” other than for the fact they made it through. But I feel I’m lucky to have gone through this, to remember most of it (except for the times I was confused!) and to be able to go back to work in a few days and use my experience to help others. I can step back and remember how I felt, not everyone feels the same way, or experiences the same things, but I can hopefully recognise moments that caused fear for me, and try to help the people I care for.
I have a feeling that my asthma may soon be the cause of me having to change jobs, or at least move from such a high risk, hard working area, to a more manageable job role, but as long as I can fight it and stay where I am, that’s what I plan to do.