Hello old friends... Em is back! (WARNING: references to ventilation and severe illness)

Hello my dear old friends,

I do hope that you remember me! For those of you who may have joined us recently, or who may have forgotten who I am (what fickle perfidiousness!), I'm Emily H, otherwise known as Em. I've been posting on the boards for just over three years, and I'm one of the forum moderators. I have brittle asthma, among other medical problems, and I'm medically retired from my job as a hospital doctor. In the past I have been a very regular poster on AUK, and have really enjoyed answering queries, posing questions of my own and joining in the general banter! However, I've been very quiet these last few months, and I don't think I've posted at all yet in 2009.

As you can see, though, I'm posting now! I was fully intending to 'sneak in the back door' and gradually and quietly start posting, answering people's questions and queries, and helping with moderation as I used to. When it comes to it, though, I find myself a little uncomfortable with that. I know that a couple of people have been concerned by my silence, and I've received a great many PMs, e-mails, texts and cards. I would like to share a little bit of what's been going on with you all. I also feel that it's important for us to acknowledge the times in our lives when we are not strong, when we don't cope, when things get on top of us. We all go through it, but we often don't let ourselves admit it, to ourselves or anyone else. Doctors, in particular, are supposed to be strong, physically, mentally and emotionally, and to be able to cope with anything that life throws at them. I've done myself a fair bit of damage in the past trying to conform to that stereotype.

So in the interests of openness and in the hope that it might help others, I would like to share a couple of things. I hope that this doesn't come across as too self-indulgent or tiresome. If you do find it difficult to tolerate a 'confessional' style post from me (not a style I'm usually given to, you'll be relieved to know) then I can only suggest that you don't read any further.

Most of you know that two years ago I was very very unwell. At the end of January 2007 I contracted the 'flu virus and it triggered a severe 'brittle' type attack and was intubated and ventilated, as has happened to me before. I then developed bacterial pneumonia followed by the rare complication Acute Respiratory Distress Syndrome, where the lungs become very inflamed and stiff and fill with fluid. I was in severe respiratory failure with very low sats for some days, despite very high pressure ventilation with 100% oxygen. I also developed severe sepsis (body wide infection - septicaemia or 'blood poisoning') which caused many of my organs to fail. Due to persistent very low blood pressure and very low sats, I developed stroke-like areas in my brain and had seizures as a result. I was on the ventilator for 49 days. I was extremely lucky to get through it and survive - my family were told that my chances were not good at all.

When I came off the ventilator, I was in a pretty poor state. I had lost nearly a third of my body weight (one of the ICU consultants told me afterwards that if I had gone into it at a normal weight, I would not have survived - the only time I've been grateful to my flab!). I was almost completely paralysed as a result of Critical Care myopathy (muscle wasting) and neuropathy (nerve damage), complications of my illnesses and organ failure. For a few days I was unable to talk as I had a tracheostomy, which was extremely frustrating. I was in hospital for three and a half months having further medical treatment and intensive physiotherapy, to help me to relearn basic skills like walking and feeding myself.

Obviously, the first few months after this were about survival, pure and simple, and the painstaking and agonisingly slow reacquisition of basic skills. Curiously, given that I didn't do very much, there was surprisingly little time for naval gazing and reflection. My overwhelming emotion was (and still is) thankfulness that I recovered, and to the wonderful staff of the hospital. As I've recovered further, there have been very many frustrations and difficulties, as you would imagine, from discovering that I can no longer tie my own shoelaces to being told that it is not possible for me to have a marked disabled space outside my house.

My asthma has continued to be problematic, and I also have many long term health problems as a result of the experience - I won't bore you with the details, but it sometimes seems that no organ has been unaffected. Most critically, I have scarring and damage to my lungs - bronchiectasis and interstitial fibrosis - which further limits my already capricious lung function and means that even on the best asthma day, I am breathless. So, things have been difficult and my health has been poor, on and off.

Right now, though, I'm doing really well. I've had no hospital admissions since the beginning of October, which is nothing short of a miracle. I was started on Xolair in September, and we're thinking - and hoping - that that may be what's helping. My consultant is unwilling to commit himself quite yet, because although I've had brittle asthma for about 14 years, I've had extended periods of partial remission in that time. We're hopeful that it is the Xolair, though - as that would stand more chance of being a permanent solution, whereas a remission inevitably seems to un-remit at some point. So, asthma-wise, I'm the best I've been for a long time, four years or more. I still have my bad days, but overall, I'm much much better.

My energy levels are better too. When I was first recovering, doing anything - a trip to the supermarket in my wheelchair, my grandma coming round for coffee, *anything* - would reduce me to the sort of exhaustion that makes you want to sob incoherently, and would result in me spending three or four days in bed. It's better now - I still sleep a lot, nap most afternoons, and if I do a lot in one day, I do end up having the next one or two days as 'bed days'. I have occasional bouts of inexplicable and very frustrating fatigue that lasts longer, comes from nowhere and puts me in bed for five or six days. But they're getting less frequent, I think. And don't we all suffer from a bit of fatigue? - it's the symptom they never talk about, one of the hidden costs of dealing with a chronic illness.

Fantastic - I'm getting better. And it is fantastic - you can't hear the note of not-sarcasm in my voice, but it's there. I am really really pleased that things are going in the right direction, at last. It's been hard, the last four years, and even harder, the last two. But - and I apologise in advance for what is going to sound like absolutely vile ingratitude - it's also really difficult. Getting better has changed my focus - I've stopped thinking about day-to-day survival, about whether I can dress myself today, whether I can get up the stairs to bed at night, whether there is food in the house; I've now got time to think about the future, about what I'm doing with my life, about what I want to do with my life, and about how my asthma et al has affected the answers to those things.

I've also had time and opportunity to weigh up the damage that has been done, what sort of state I'm in, and what I'm capable of - 'what's been left', if you like. It's been two years now since I was discharged from hospital after that 'do' - so most of my immediate recovery, in lung capacity and in everything else, is over. There may be a small amount of further improvement, but not much. So this is it, essentially. I've been left, as I said, with various problems, and now they feel final, like I'm stuck with them. Before, there was the possibility of improvement; now that's gone. Practically, apart from the respiratory side, my mobility is quite restricted because of muscle weakness, nerve damage in my feet which makes me prone to tripping or misstepping (don't know where my feet are unless I can see them - very weird. Kind of like a phantom limb, but the complete opposite). I also have balance and co-ordination problems, and a little bit of difficulty with concentration, memory and word finding, which is only really noticeable when I'm very tired.

In September last year, another little hoop to jump through was thrown my way. I'd been admitted with asthma attacks four times during August and September, and each time the attack was not - for me - that bad, the sort of thing I would usually scare off with a few nebs at home. But I wasn't coping with them - for the severity of the attack, I was more unwell than I should be. Whilst being monitored in HDU, they also noticed that my sats dropped severely while I was asleep - this had been noticed previously, and I was - and am - already on overnight oxygen at home, but now my sats were dropping despite the oxygen. My breathing patterns were highly abnormal. I had absolutely overwhelming daytime fatigue and somnolence, sleeping for 18 to 20 hours a day and barely able to keep my eyes open the rest of the time. It all came to a head quite quickly as I became increasingly unwell. A sleep study revealed what we'd all guessed - that I had severe sleep apnoea.

I wasn't expecting to have two different types of sleep apnoea, though. As well as the classical 'snorer with a fat neck' obstructive sleep apnoea, where the upper airway collapses and blocks when you are asleep, I also have the rarer central sleep apnoea (otherwise known as nocturnal hypoventilation syndrome), which occurs because my respiratory centre in my brain 'forgets' to tell my body to breath while I'm asleep, causing my respiratory rate to drop to dangerously low levels. The former is probably due to my weight, and the latter is most likely to be as a result of brain damage caused during my bad do.

Because I have both types, the standard treatment of CPAP, a continuous low level of constant pressure, is not suitable, and I've been started on BiPAP or NIPPV (often known as 'nippy'), which has the same tightly fitting nasal mask but delivers discrete breaths that actually ventilate me. It's essentially identical to the ventilators that they have in ICU, but it's administered via the mask rather than via the invasive ET tube. It can be triggered by me when I breath in, but it has a backup rate, and because my rate drops so low, it does tend to take over entirely as soon as I put it on. It has taken a lot of getting used to - I was prepared for CPAP, I'd tried it before (at a training session!) and felt that I could tolerate it. My memories of BiPAP/NIPPV, though, were all from unsuccessful attempts to prevent me from being invasively ventilated during a severe attack, and on those occasions I'd naturally found it very very hard to tolerate, in my distress. Using it every night is obviously nothing like as difficult as that, but it's still taken a lot of getting used to.

My recent overnight oximetry results were very very much improved, and my daytime sleepiness is much much better too. I had been told at the time of diagnosis that my condition was considered 'complex' (when is it ever not?!), with the two different types of sleep apnoea on top of a background of chronic lung disease, and that full control and relief from symptoms might not be possible. It hasn't been, entirely - I still score highly on the Epworth Sleepiness Scale (at umm.edu/sleep/epworth_sleep... if you're interested) and I'm still waiting for some faceless somebody at the DVLA to tell me if I can have my driving licence back or not (initially taken from me for a year because I'd had seizures whilst very unwell, then kept pending an assessment of the nerve damage in my feet, and then further withheld due to the uncontrolled sleep apnoea; even if they're happy with that now I'll still need an assessment to see if I can use pedals or need hand controls. I was too unwell to drive anyway for much of the last two years, so I didn't really care, but now I care very much).

The symptoms are very much better, though - I can stay awake for most of the day if I have to, and I get a reasonable quality of sleep at night. It's been one more big thing to worry about, though. Sleep apnoea is not a trivial condition - we all know snoring is funny funny funny, but sleep apnoea can kill. People with poorly controlled or untreated sleep apnoea have a much higher risk of high blood pressure, heart disease and stroke, not to mention the very real danger of falling asleep whilst driving or operating machinery. Not that I tend to operate any machinery more complex than the tin opener.

All of this is a very roundabout and lengthy way of explaining to you all - or to anyone who's still reading by this point - a little of the sort of state of mind that I have been in over the last few months. It has not been easy. During my bad do and just after, people were forever screening me for depression, throwing questionnaires at me on a daily basis, and I was not depressed. I was fed up, peed off, angry sometimes, upset sometimes, but not depressed. Now - or rather, over the last six months or so - I'm getting better. The Xolair is (we hope) controlling my asthma. My sleep apnoea is diagnosed and treated. My exercise tolerance is improving. And now I'm getting depressed. Apparently this sort of timing is not uncommon, illogical though it may seem. My brain has had a chance to process things, to 'take stock', and it seems to have thought 'bloomin' heck, that was a bit rubbish, all of that, I don't like that', and gone into hiding somewhat. Low mood ensues. Hence the lack of posting and general hiding under metaphorical (and literal) duvets that has gone on over the last few months.

Things are getting better now, though. I'm being treated, and I've improved a great deal. I still have my bad days (that should be my motto, I'd have it put on my tombstone but that would be rather stating the obvious) and I'm not retiring the duvet yet, but I'm much much better. It's a cliche, but going and seeing my GP and talking about it really was the key thing. I won't say it was the most difficult thing, because that would be a lie - it was a walk in the park compared to some of the other rubbishy parts of this whole thing - but it was difficult, and important. I can't say that enough - if you're feeling low, talk about it. And if no-one listens (because we all know, some docs are better at listening than others) then keep saying it. Tell your practice nurse, your asthma nurse at your asthma check, anyone. Certainly at my practice, any healthcare professional can refer to the Primary Care Mental Health Team, so your practice nurse might be an excellent source of help.

It is stigmatising, depression. I feel stigmatised by it, and I should know better, I'm a doctor (I've even done a psychiatry job). I feel like it's my fault, like I'm giving in, letting people down - my family, my poor long suffering husband, even you guys for not being around to post. I am good at beating myself up - always have been - and this provides a really good excuse. It's not anyone's fault, though, and it is common (50 - 60% of people with COPD are depressed, up to 45% of people with asthma, and much higher in people with severe or brittle asthma) and it is treatable.

One of the best things I've done over the last six weeks, and one I'll post about in more detail later, is attend a pulmonary rehab class at my GPs. It's a graded exercise programme designed for people with lung disease and very closely supervised by a respiratory nurse and a respiratory physio. It's been brilliant. Not only has it greatly improved my fitness and exercise tolerance, but it's given me back a little of my confidence. It gets me out the house, and meeting new people. It's improved my mood a great deal. I am slightly worried that when the course comes to an end in a couple of weeks, I will find myself sliding backwards physically and psychologically, but I have lots of other ideas for things to do, and now I have the motivation to do them.

So that's my little (well, actually rather long) story of why I've been uncharacteristically silent. I really hope that anyone who's managed to wade through all that (is there anyone left reading this?!) doesn't find it all too nauseating or self-indulgent. I hope too that it doesn't come across as self-pitying or complaining - I have tried to explain things matter-of-factly and steer away from that. Naturally, I have my self-pitying moments (although I would not inflict them on you), and of course depression is often self-pity personified and magnified, but in general I really am very grateful and I feel very lucky - not only to have come through all of it, but to have the wonderful friends and family that I have, who have helped me deal with it all.

Having written all of this, I must confess I feel very nervous and exposed - it's been a while since I posted much about my own circumstances, probably since before I became a moderator, and I don't think I have ever been so frank. If you had asked me a few weeks ago whether I would post openly about my depression on a public forum, I would have denied the possibility. I do feel it's important, though - it's important to me that you folks know a little of what's been going on with me and why I disappeared for so long, and it's important that we feel able to discuss depression, if not with each other, then with our healthcare professionals. I know a lot of people on here suffer from depression - my story is not in the least bit different or special.

I will be posting more on AUK now, and I will reply to the backlog of PMs that I have waiting for me, although it may take a while. Please be gentle with me for the first few weeks, and excuse any gross breaches of netiquette (although hopefully not the T&Cs, otherwise CathBear will be after me!). I am sure I will find my feet again soon.

Thank you very much all for listening and allowing this lengthy tale, and thank you in advance for any comments - all gratefully received via posts or PMs.

Take care all

Em H

NB I should just add that what I went through in terms of severe complications - ARDS, sepsis and multiorgan failure - is very very rare in a otherwise fairly young and healthy asthmatic. I know there are others on here who, like me, have brittle or severe asthma and are regularly ventilated, and I don't want anyone to worry that they are going to have the same problems that I did. Of course, ventilation has significant risks attached to it, which is why it's only done as a last resort, but in general asthmatics are an 'easy vent' and rarely develop serious complications. My asthma nurse has been in nursing for over 25 years and has worked for a long time as an ICU nurse, and she has never seen an asthmatic need a tracheostomy - doing a trache is a marker of a lengthy and/or complicated vent. Most doctors who see my trache scar assume it was done for anaphylaxis or for something else entirely!

30 Replies

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  • Hey!

    It's lovely to see you back.

    Emzie x

  • It's great to have you back, and that's fantastic things are looking up for you

    Vicky xx

  • hey em.

    its great to see you back. take it easy and dont rush!!!

    olive

  • wow Em you been through the mill and back there a few times and now your back take care and glad to see your name back on the boards luv and hugs KA XXXXXXXXX

  • How wonderful to see you back here posting again; you have been sorely missed! I'm so glad to hear things are getting better overall after all you've been through and look forward (selfishly!) to more of your marvellously informative, quality posts.

  • welcome back Em, you have been missed. Glad to see you are a fighter and on the mend.

    we need you at times to keep us all in control, things can get a bit heated on here, but take it easy.

    chris

  • Hey Em

    Yay! It's so great to hear from you, we've missed you!

    Hugs

    Lucy x

  • Hey Em

    Thank you for telling us you story it actually helped me a lot! My asthma is no where near as bad as a lot of people on here a lot of the time it just has real bad blips every few years. But to read what you have been through helped me to put it all in to perpective thank you!

    Plumie

  • Welcome back Em. Really good to hear from you and how you are getting on and what a battle you've had.

    Although never ever been through half of what you've been through ive also been part of pulmonary rehab and it really did make a difference to my confidence and general exercise tolerance. So pleased to hear its been positive for you and hope this continues.

    Often thinking of you.

    Take care

    Sarah

  • Love you loads Em and so pleased to see you poke your head around the AUK door again. You are truely an inspiration and on my bad days remembering your struggle has given me the energy and inspiration to push on.

    Hugs

    Bex

  • So so so soooooooooooooooooo pleased to see ya back ... glad things are on the up for you.

    Take care xx

  • Hi Em

    Its great to see you back on the boards you really are a true inspiration to a lot of us! Take care. And i look forwards to seeing more of your posts! Lotsa lv kat Xx

  • Welcome back Em, it's great to see you posting again xx

  • Welcome back, Em. The sharp-pointed ""moderator"" poking stick is ready when you are!

  • Helloooo Em!

    Welcome back to the boards and... Thank You for sharing this with us all.

    It shows that you are a very strong person!

    Love & hugs

    Kate

    xXx

  • Hi Em. It's really good to see you back once more. Iwas just thinking a while back that you haven't been about. I think you are so brave to deal with all you have been through. Continue to keep well and take care. Love from the far north..

  • Em,

    May I send you a big huge hurrah for putting all down on paper and for arriving back in the fold through the front door.

    Welcome Emily H, I wish you many happy postings.

    GrannyMo xx

  • Welcome back Em...its great to hear from you

    Reading your story was very inspirational and helped me understand what i should be doing now, thanks

    Take care and gently does it x

  • Wow, what can I say but im glad your still here to tell the tale!, great to see you back and your spirits so high!

    Snowy

  • Hi,

    Just thought i would come along and say well done EmH. I read through all of your story and i really admire your strength and determination to battle threw with all that has happened in the last few years. It takes guts to admit to others all the things that people would normally shut away and bottle up inside!!!

    Lisa x

  • Hi Em welcome back to the boards :) and its lovely to hear from you after such a while.

    Simi x

  • Hiya Em, great to have you back

  • Hi Em wow what a story! im so glad your here to tell the tale and an inspiration for all of us here.

    your extrodinary!

    kel xx

  • Hi Em

    I've just read your message. Thanks for being such an inspiration.

    I understand how vulnerable you must feel after opening up so much.

    But please don't let that worry you. What you've shared has helped us all - really.

    You may never know how much you've helped some of us!

    I can't say any more cos I'm so moved by what you've shared.

    XX

    CD

  • Em H your back!!!! Yippee, am so pleased your back you have been missed muchly, you cannot imagine how much you have been missed on the boards. WE ARE SO GLAD THAT YOUR BACK, WELCOME BACK.

    Will damp dust your Moderators hat for you and put extra logs on the campfire in your honour. Have missed your sense of humour, kindness and support. AUK has its oracle back in its midst (we love CathBear and PeakSteve too) you are all very special and precious moderators and am very grateful for all that you all do especially in keeping this such a happy safe little community and an oasis of calm, support and knowledge about asthma. It fills a very big gap in the NHS system for educating and supporting us.

    Em H you are very, very special your input is invaluable, you are a lovely,lovely person and a brilliant mod too. Em H you are the best and i am soooo soooo glad that you are back and getting better, a very happy Lois xx

  • welcome back

    your story is so personally inspiring an really touched me

    xx

  • Hi Em,

    I don't usually post, but I read these boards a lot. I'm from the States, but I like this board a lot because people seem really supportive and to understand what it's like to have asthma.

    I just wanted you to know I read your whole post and I think you're very brave.

    I have a few other things wrong with me besides asthma (like a pacemaker and some other things that have all been diagnosed in the last 5 years).

    I realized a little bit ago that it was getting me rather down. I thought it was stange too, as I'd already gotten through all of the surgeries, and the times being really really sick. But somehow it's more depressing to know that this is what I have to deal with for the rest of my life. Not the life that I expected and something to adjust to....and I would even say to grieve the way I thought my life would be. So I wanted you to know I really appreciated your post. Oh....and you have my sister's name (which I'm rather fond of :).

    Bee

  • Hi Em

    I think this is one of your braver moments allowing people to see that anyone can be affected by depression.

    Its so easy when you have a chronic illness to slip into the automatic ""I'm fine"" mode to all those around you especially drs. It's that survival instinct and the thought running through your head that ""i've been so ill what have i go to be depressed about i'm still here i should be leaping with joy""

    As a young mum i've seen many of my friends suffer with post natal depression and the overwhelming thing that came across was how important it is to talk to someone. It was only at a toddler group that we realised 8 out of the 10 people sitting drinking coffee were on anti depressants and all thought they were they had failed and were the only one with depression.

    Depression is an illness just like asthma and if you had come through your experiences completely unscathed then i would think that abnormal!

    It's only by raising awareness the stigma will be removed

    Well done on posting on here it's bound to help somebody else.

    Marmite

  • thanks

    thanks em nice to see you are feeling as tho life is going in your favour its about time it did you deserve it. as for your spiel never could anyone say you are self indulgent in fact reading it has just reduced me to tears again and there was me thinking my mood was so much better. ha maybe its just that am going through a bad patch at mo with 5 admissions this year plus 1 a nd e visit plus 1 out of hours gp visit on the top. as a result my con appt keeps getting cancelled grr so getting nowhere at mo but suppose should be positive i am in work (just at mo) but am nowhere near as bad as you are so thanks again for all you do and all the support you give to thhose who ask.

  • hi Em

    nice to see you posting again pleased to hear that you are getting there slowly .

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