Becoming the Patient

In May 2013 I started to feel an unfamiliar sensation in my chest. It was only subtle but it was particularly noticeable after exercise and was followed by a dry, irritating cough. The only way I could describe it was that it felt as though there were feathers in my chest when I inhaled. I just assumed I had a cough and expected it to go away after a while. I was wrong and over the next few weeks I felt much worse. I was waking up with this feathery sensation every morning and struggling with fever, extreme tiredness, neck pain, night sweats and weight loss. I remember meeting with friends on the beach with our children and feeling so shattered I could barely keep my eyes open. I was living on paracetamol and taking naps in my car during my lunch break to survive my shifts. I wasn't getting better so I saw my GP, who suspected a viral infection and signed me off work for a week. Despite the rest, I was only getting worse so I visited him again. He listened to my chest and told me I needed an X Ray immediately. I had this done at my local hospital that morning and by the next afternoon my GP called me to tell me I had pneumonia. No wonder I had been feeling so unwell! I was started on two different antibiotics to treat it and signed off for another week. I felt relieved to know why I'd been so completely exhausted and ill.

However, as that week went on I became increasingly short of breath. The simplest of tasks like hanging out the washing was so tiring that I had to have a lie down beforehand to store some energy. And as soon as I'd put it on the line I had to lie down again because I could barely breathe. It got to the point where just having a shower and getting dressed was completely wiping me out. My children Miles and Remie were only seven and four at the time and needed me to take care of them. I had to get better.

On the Sunday of that week I was supposed to be taking Remie to her first dance competition, about a half hour drive away. Just the thought of it completely exhausted me and I knew I wouldn't be able to do it. I was determined she wouldn't miss it though so I managed to do her hair in a bun as neat as her baby wisps would allow and Dan, my husband, took her. She did very well winning her first 'throthies' as she called them! I was so sad that I had missed this event but all I was capable of doing was lying on the sofa. I could only speak about four words at a time because I was so out of breath and it was apparent that something was very wrong. I held out that day until Dan came home at about 5pm, by which time even lying in bed was proving too much for my lungs. I had to go to hospital. Miles and Remie stayed with my parents and we went to A&E. I was seen quickly by a doctor I knew from various surgeries I had worked at. She wanted to rule out a pulmonary embolism. Since I'd been diagnosed with pneumonia the possibility of a PE hadn't crossed my mind. I burst into tears as soon as she said this and it was the first time that true anxiety kicked in.

I was admitted onto the Acute Medical Unit and had more X Rays, blood tests, arterial gases and numerous other tests. I was started on oxygen which calmed my breathing a little but it was still a struggle. A doctor told me I would need to be tested for TB and HIV among other things. Now I really felt anxious. I knew I'd had a couple of needle stick injuries in my job over the years but was sure they were before I'd had the routine HIV test in pregnancy. Or were they? My mind was swimming and I felt a hot rush of panic. I'm normally an excellent sleeper and have great difficulty waking up each morning but that night I couldn't drift off. My heart was pounding thinking about the illnesses I was being tested for.

By the morning I'd convinced myself I was being silly and knew I couldn't have HIV. Thankfully my tests ruled out both this and TB. So what was wrong with me? I met a gentle Asian man with distinguished white hair and a white moustache that day. He was to be my consultant for the next six years. He took one look at my results and told me I had Eosinophilic Pneumonia, which doesn't respond to the antibiotics I had been taking. I had never heard of this type and he explained that, rather than fluid on my lungs, I had massive amounts of Eosinophils - a type of white blood cell - infiltrating them instead. In the coming months I was to see my admission X Ray which showed that only a quarter of my right lung had been clear at that time. That explained why breathing was so difficult. I now know that all the symptoms I had preceding the breathlessness are common with this illness. I ended up staying in hospital for a week. I was lucky enough to be given a side room - one of the benefits of having been an MRSA carrier in the past (many health care professionals are!). My antibiotics were stopped and I was started on steroid treatment instead. These proved to be magic pills and within 24 hours my symptoms reduced greatly. That week I had visits from my family, of course, but was blown away by my friends. I was inundated with cards and messages, Steve, a minister from our church came and said a prayer for me, Alice took my children out for the day, Ellie and Vicki cleaned my home and Rachael and Ray picked me up and took care of me after the horrendous experience of a bronchoscopy. I will always be so grateful to these people for showing me and my family such love and kindness.

I was told before my bronchoscopy that I would be sedated beforehand and wouldn't really be aware of the procedure. Well that didn't work out. I was sedated, yes, but I seem to have a strange resilience to anaesthesia (two high dose epidurals failed when I was having Miles) and I was awake and fully aware of all the horrors of having a tube passed down my throat into my lungs. I was obviously gagging and the tube was causing pain in my throat but the worst part was having fluid squirted into my lungs to create 'washings'. The idea was to collect lung cells in this fluid which would be investigated to check that my diagnosis was correct. This went on for forty minutes and because of the tubes and liquid being shoved into my chest I couldn't communicate with the nurses doing it. I was trying to, of course, but they thought I was just making noises in my 'sedated' state. I then suffered side effects as the drugs I'd been given wore off and had a fever all night. To my complete delight, this procedure proved inconclusive and I was then referred to the heart and lung department at another hospital. I was to have a different type of biopsy this time. In my pre-assessment I explained what had happened before and the consultant was horrified. He said I should have had no memory of it and promised it would be better this time. He was true to his word. The last thing I remember was one of the nurses commenting on my tan as I drifted off (this pleased me as I hadn't even had my holiday at this point!). I did, however, wake up just as they were finishing the biopsy and tried to pull all of my tubes out. What an excellent patient.

I was due to go to Greece with Dan and the kids the following week and it was decided that since I had responded so well to steroid treatment it was probably the best thing we could do. We enjoyed the laziest holiday we'd ever had and it really did us all a world of good. It was so great being together after my week in hospital which had been unsettling for the kids and overwhelming for Dan who'd had to deal with the uncertainty of my condition, work and home life. I ended up having three months off work that summer. I did try to go back before that but on my first shift my GP - who was also my boss - took one look at me and signed me off again.

There are two types of Eosinophilic Pneumonia - Acute and Chronic. The acute kind comes on very quickly and then goes away completely after a course of steroid treatment. The chronic kind develops over a longer time and doesn't go away with one course of treatment, instead it returns each time the treatment is stopped. After two initial courses of treatment it transpired that I have the chronic kind. Nobody knows why or how it started. I have had six years more of X Rays, CT scans, blood tests, lung functions tests, treatment trials and follow ups with consultants. I am now under the Brompton Hospital in London and my consultant there is working alongside my one at home who diagnosed me that first night in hospital. Both of these men have shown genuine care and concern for me along this whole journey. I have been weaned off the steroid treatment many times but my symptoms always return. The exhaustion is what really affects me. It is unlike anything I've experienced, even those early weeks of pregnancy when you're completely shattered. I get to a point where even moving my arms while I'm lying in bed seems too energetic. Obviously I can't live like this so my steroid treatment is always re-started. There are times when I have wondered if my symptoms are in my head because while my dose is being adjusted they creep on quite gradually. Dan often notices a change in me before I do. At this point I always arrange a blood test which is the easiest way to see if I'm having a flare up and my results always confirm that I am not imagining things. Sadly because of the load on the NHS I have often had to arrange my own care by requesting bloods, X Rays and chasing appointments to discuss the next step with my doctor. If I didn't do this I'm sure I would have had many more hospital admissions. This is nobody's fault of course, just a very real sign of the strain our medical staff are under. I'm just grateful for being in a position and having the medical understanding to do this.

In 2018 I had two asthma attacks. These were new for me but thankfully because of my nurse training I knew what to do. I managed to treat the first one at home although this took 24 hours to completely subside. Three months later I had another one which developed so fast and didn't respond to my inhaler that I had no choice but to head to A&E again. The nurse who triaged me said he didn't really need to listen to my chest, he could hear the wheeze from across the room. He did though, of course, as he was a thorough professional. I spent that sunny afternoon in the majors department being nebulised. I was reviewed at the Brompton shortly after this and it was confirmed that my condition had led to asthma. I was started on treatment for that too and thankfully I haven't had an attack since.

I don't know if my lack of energy affected my thought processes but after that initial panicked night in hospital, my feeling of anxiety completely faded. I had many doctors and nurses doing their best for me and so much support from family and friends, who were helping practically and keeping me in their prayers, that I actually felt at peace. The journey I've been on so far has taught me that we can't control life, we just have to live it to it's fullest and accept what comes our way. I don't mean we should be apathetic about situations or that we shouldn't do all we can to improve them but there is only so much in our power. Yes, having a long term condition does emphasise the fragility of life but, while it may sound corny, it has truly taught me to be grateful for each day and to take notice of everything around me. I think twenty years of yoga has also taught me that worrying is a waste of time and when we look back on life, we have all come through so many bad days and hard times and actually been ok at the end of it. The good news is that I am on my lowest dose of treatment ever so the risk of side effects is low for me right now. I used to take eight tablets a day and now only have one every other day. I've had no flare ups for seven months. I'm much better at listening to my body now and don't feel guilty when I have to rest and take care of myself. I have great doctors looking after me and people I know who are still praying for me. I think I'm going to be just fine.

Comments

  1. Wow. What a scary experience for you. So glad your well now. ��

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  2. Wow Emma, what a tough time you’ve been through- sorry to learn that. I’m glad to hear that recently you’re the best you’ve been since being diagnosed. Also that the experience alongside yoga has helped shape a healthy mindset x

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