Some people (and sadly, I've discovered -even qualified doctors!) can sometimes have the misconception that having asthma is all about having a blue inhaler, and that if your asthma is bad it is simply because you haven't taken it, or that it can all be cured by the miraculous blue inhaler!
Now, I think my lungs have provided plenty of proof in the last few years that there is far more to asthma than the salbutamol inhaler can cure. I have forgotten the number of times I've been told I've had the most difficult asthma that such and such doctor has dealt with, or that I have scared them. That's certainly something I'm not proud of, but will go someway to perhaps emphasise how tricky, and isolating brittle asthma can be.
It's a condition that is very hard for healthy people to understand properly, and that stands whether I'm talking about doctors or friends. People with brittle asthma often end up on huge amounts of medication, some for asthma, and others to prevent or treat complications of the other treatment! My last rough count was over 75 tablets a day (not even counting some tablets that I don't take a regular number of times each day) plus 3 inhalers, nebulisers, subcut infusion, IM injections, syrups, yucky drink, nasal spray and creams/lotions, plus my monthly anti IgE injection, and weekly subcut methotrexate injection.
Patients often end up on bizarre treatments that are not really evidence based; initiated by 'the big cheeses' at specialist centres...that stretch (or break) the comfort boundaries of poor doctors at small local district general hospitals who then have to initiate them or continue them at 3am! I'm on continuous subcut bricanyl for a lot of the time, and have things like adrenaline nebs, magnesium nebs, IM adrenaline and non-invasive ventilation for critical exacerbations of asthma attacks - none of which are 'standard' treatments (and were initiated because I don't respond very well to normal treatments when having a bad attack) and these treatment suggestions tend to induce a look of terror on the doctors when they read my management plan in my notes or the copy that I hand in... the docs either follow it in a scared fashion, or chose to ignore it!
I'm very lucky in that I have a great set of friends who have provided me with a huge amount of support, and try to understand as much as is possible. However -I think that there is also something in all of us that seeks out people who are similar to ourselves in someway, as a source of confirmation that you are 'not the only one' going through it and to get advice from those who really do understand. There is something to be said to being in contact with people who have actually been through it as a patient; being the one who actually can't breathe, have experienced non-invasive ventilation (NIV) and the horrors of ending up tubed and understands some of the unpleasant memories and recollections that I've been left with after my ITU stay back in February.
Over the last two or three years - I've been in online contact with two or three other brittle asthmatic doctors who had been lurking around either on the AUK (Asthma UK) forum pages, or the doctors.net website - one who like me, is not able to work at all due to her health- and two who have maintained their careers. Eventually I have met up with them two of them in person -one has visited me a number of times in hospital during episodes of captivity with me being able to visit her when she was admitted, and I met another one locally during a patch where we were both free from hospitals!
I've found these people a fantastic source of support; as they not only understood what it was like to have the bad lungs, they also knew the added complexities of being a doctor-patient, (especially being treated in your own hospital where you've worked, by your friends and colleagues, and how difficult it is to hand over the control to the doctors looking after you) and what it feels like to have spent 5-6 years of medical school and a large proportion of your life focused on a career in medicine, to deal with the stresses of occupational health and have your choice of speciality being dictated by your health or be faced by the possibility of not being able to work in medicine at all after all.
I've recently met a couple of other people who I've got to know through AUK - one whilst I was in Leeds, and then another in hospital in Sheffield. I know how much I appreciate visitors in hospital, and was nice to be doing the visiting for once! She's since been to see me whilst I've been stuck at home whilst being so run down since my last couple of admissions.
I've found it nice to get to know a few people who do, by nature of their illnesses -truly understand what life can be like with lungs that behave as mine do, with frequent or lengthy hospital admissions, frustrating or sheer unpleasant complications of treatment, and who have gone through the daunting process of having to give up work for the time being, at least..and know the feeling of having lost varying degrees of independence and the headscrew of having had to go through things like applying for disability living allowance, having occupational therapy and social services assessments- resulting in having handrails fitted, equipment for the bathroom and kitchen etc. It's a really hard thing to do at any age, but particularly at our age, when fiercely stubbornly independent!
I know I've been totally slacking on the blogging front lately. Sorry. Basically, I've had a couple of really tough admissions -one where I was captured from the resp clinic. after the asthma nurse had squeezed me in to see the consultant as my asthma was playing silly buggers. A few days into the admission, my double vision returned (like before my shunt insertion) so I had to have a brain scan which reassuringly didn't show anything, so was told I'd need to see ophthalmology and probably neurology/neurosurgery again. I also ultimately ended up on NIV and after I had a coughing spell whilst on it I got a pneumothorax (where air gets outside the lung into the double lining that surrounds the lung and causes the lung to collapse) which caused severe chest pain and worsening difficulty breathing. It took a while to get it diagnosed, but ultimately I ended up needing a chest drain to re-expand the lung. A few days later I managed to get discharged in time to travel down south to see my one of my best friends have their first baby - providing me with my gorgeous godson, Harvey!
I know I'm biased - but isn't he a cutie! :)
A few days later, I sadly was getting worse chest pain... and suspected (read: knew) my pneumothorax was back. I tried to ignore it for a couple of days, stupidly hoping it would going away! I then went to clinic on the Thursday, told the consultant it was back - and got the response of somewhat disbelieving raised eyebrows! This changed to a more believing one after he'd examined me and sent me for an x-ray - yup, it was back! :( I don't think my new consultant is used to this self-diagnosing patient just yet! lol. Was as you can expect, then captured again from clinic... Another chest drain was placed on the emergency assessment unit (EAU), then moved on to the resp ward the following day. I ended up with another chest drain ... after the lung went back down as soon as the drain was removed on the Sunday, and ultimately ended up with a blue light transfer to the regional thoracic surgical unit in Nottingham, where I had a procedure to stick the linings surrounding the lung together, which 'should' prevent it from collapsing again. They can either do this surgically, or by putting a chemical substance down the chest drain to create an inflammatory reaction. They decided to try the chemical procedure (a talc pleurodesis) due to the risk involved with the surgical version due to my lungs. The pleurodesis and chest drains are quite simply....the most unpleasant and painful things I've gone through ever! I discovered that trying to carry both a chest drain and catheter, whilst being in pain and breathless and yet still trying to walk around on crutches is damn right near impossible! I was glad to get everything out, and to escape when they discharged me home, but still felt so poorly, still struggling with breathlessness, chest pain and exhaustion. I couldn't even get up or down the stairs to my kitchen without having to sit down halfway! :( For the first two weeks or so, I basically lived in my room, and was horribly reliable on everyone else. Things are slowly improving, but are still pretty tough-with me spending most of my time resting or sleeping. I have very little concentration too, which is why blogging has taken a back seat. Next week is going to be quite busy- I see ophthalmology on Monday about my double vision, and resp later on in the week.....along with physio/acupuncture, and a busy weekend providing I'm feeling well enough. I'm also waiting for appointment with a spinal surgeon, as apparently some of my hip problem isn't actually a hip problem - but a back problem!! :( although, hopefully a fixable one!
Now, a very important message for all my other friends reading.... ....You are awesome. I know for a fact that I'd never have coped with everything that life has thrown at me over the last few years without you; you have understood and dealt with more than I could ever have dreamt for. You have functioned as both friends and my family, and coped with the highs and lows of the rollercoaster ride that has been my life lately. Despite leading your own busy lives, you've all stayed in touch, accepted when I've cancelled social occasions at short notice, visited when I've been in hospital or stuck at home, and put up with me being a very slow, breathless hopalong on crutches! I cannot put into words how much that has meant to me. Extra special thanks to those of you who were unfortunate enough to have been put in the awkward position of having to look after me in a professional capacity too. I don't think anyone has distanced themselves because I'm not the old 'me', unable to do the fun things I used to do. It is hard finding myself in my current situation, unable to work, in and out of hospital, dealing with a lot of complications and with an unpredictable future -but the fact that you guys accept me just the way that I am, leaves me speechless.
I know I'm going to continue to need your support from here on in, as I think the road ahead is going to be far from straight forward. As a very good friend of mine said to me a few months back when I was getting fed up with everything.. it's all about the journey - not just about the destination! So, I just wanted to say, I hope you'll all carry on travelling with me on this 'interesting' and rather unpredictable journey, and a huge thank you for what you've done so far!!!
