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Heart Blog

People with heart conditions discuss symptoms, treatment, and coping, with the aim of helping others.
  • Why all the fuss?

    For many people, getting a cold or a virus is an annoyance and they can still get up and go to work. Their worst symptoms might be a bit of muscle aching which paracetamol can manage, and a runny nose or sore throat. They might think someone who worries about infection is being over the top, or hypersensitive. But for me, infection's a nightmare: my pain levels crank up so that I need heavy duty painkillers every 4 hours just to get out of bed (Tramadol and stronger); my heart speeds up, my blood pressure falls, I usually end up unable to work, and sometimes have to go into hospital to get put right. It takes weeks to recover. I end up bed ridden at a much lower threshold than other people my age.

    Isn't it down to people with POTS to just be more careful, then?

    I did my best to avoid contamination this year, as I do every year, arming myself with hand-gel and scarves, I stayed away from infected people. But having two relatives bring infection straight into my home at Christmas meant that I succumbed on December 31, much to my anger.

    A cough without putting your hand over your mouth, touching a doorhandle with a hand that you have coughed into and not washed- even sneezing without a tissue - these are all it takes- you don't even need to touch me to make me ill if the virus is airbourne. It's for that reason that someone with POTS, or any underlying health condition will worry more about infections. That's why it's not just my responsibility to be careful- it's yours, too.

    So, how does a virus really affect POTS?

    For me, the biggest problems are what I call the 3 Hs:

    • Heart Rate
    • Hypotension (low blood pressure)
    • Hydration (I can't stay hydrated)

    Every time I blow my nose, sneeze, or cough, I go into tachycardia of 150bpm or higher. The sorts of symptoms that I normally get on standing- like fast heart rate and low blood pressure- begin to happen to me lying down, too. If they happen when I'm lying down, not just standing, then I can't alleviate them.

    People with POTS regularly have to drink more than others to maintain their blood pressure, but my hydration is particularly sensitive, even when I'm comparatively well. When I have any kind of infection, I stop managing to hydrate myself orally: no matter how much I drink, I can't get hydrated, and this leads to further, significant complications because of the low blood volume, like:

    • headaches
    • tremor
    • weakness and fatigue- such a subjective terms but believe me when I say, I work like a machine when well; now I can't sit at my desk.
    • nausea
    • hot flushes and cold shivers in alternation, as thermoregulation is part of what POTS affects
    • lightheadedness, on a day full loss of consciousness through sharp drops in blood pressure
    • acrocyanosis (blue lips and extremities on trying to stand)

    How you can help:

    To anyone reading this, especially if you don't have POTS - you can make a difference to others by being more thoughtful at this time of year. It might be hard for you to imagine having to be careful because germs are a part of life. But give me your germs, and you make my life significantly more complicated!

    • Please don't assume someone who looks well won't be seriously affected by your germs.
    • Remember, invisible illnesses can be serious, especially when complicated by an infection.
    • NEVER cough without putting your hand over your mouth - the bacteria will go EVERYWHERE otherwise.
    • NEVER sneeze without a tissue, or putting your hand over your nose and mouth - your germs go EVERYWHERE when you sneeze.
    • Wash your hands regularly with soap and water.
    • Blow your nose and dispose of tissues immediately.
    • If you're ill- STAY AWAY. Don't go to work. Or school. Someone like me would thank you for cancelling a date if you thought you might be infectious.
    • DO NOT visit someone who you know has a health problem that is affected by viruses or infection!
  • I've lived with POTS for a long time now - almost 20 years in some shape or form. With 2 degrees behind me, and almost my third, I'm a lady who likes to think about things and challenge her mind. Yet some of the most basic aspects of living with POTS are beyond my comprehension. Some of my coping strategies have failed miserably to overcome the effects of  the condition. I tend to resort to 'all or nothing' thinking when symptoms begin to build. Instead of thinking, "You've got nothing on me, POTS- I've been dealing with you for years", I tend to panic, and to worry about the impact of the symptoms, or to catastrophise.

    So, henceforth, my 2012 POTS resolutions:

    1) To worry less if I lose one day of work. ONE DAY is not the end of the world in the grand scheme of things

    2) To not be so afraid of my pain- to remember instead that 'this too, shall pass'

    3) To exercise more: once my PhD goes in, I hope to partcipate in the Texas POTS-Exercise study, which has had really exciting and promising results in POTS management so far.

    4) To not wait until I 'feel like' doing something to do it, whether that's PhD work, socialising or getting out of bed.

    5) To be stricter with pacing

    6) To face the fear of pain and exhaustion head on- maybe I should just let myself get sore and exhausted to remind myself I WILL NOT DIE from it. I CAN COPE WITH IT?

    7) To finish my PhD once and for all! I've had a lot of time out since I started it; although I began it six years ago, I've only actually spent 3 years doing it, pro-rata.

     

  • Dear BendyLadyWithPOTS,

    You are grouchy at the moment because you've got the flu, and are not able to work. You're experiencing a flare up of residual symptoms, so consider this a letter from me, your 'rational self' to read when you're in an unwell state. This letter is to remind you to take stock, and help you get things into perspective. Do you remember when every single day was like this? Do you remember when you couldn't get out of bed at all? When you had to have a wheelchair? A walking frame? Weeks, months in hospital? When your life consisted only of hospital appointments and admissions, and naff all else?

    You've started doing it again- taking things for granted. And every time you get ill, you realise you're doing it. But then you forget, the next time you begin to get well. But you should try harder to remember how precious a gift you have, of being able to stand up and get out of bed without breaking bones, like you used to; to walk downstairs, to have a sharp enough brain to be able to work much of the time; to be able to have a bath and not fall flat on your face afterwards. Remember when people used to not know, not understand and not 'get it' at all? Now virtually everyone you know understands and responds positively; some colleagues even respect you more because you've achieved things in spite of the POTS. Remember when, less than 18 months ago, you had to be hoisted off of the floor twice in a fortnight in the hospital? How one nurse told you to wet yourself in bed if you had a fullbladder, and to allow her to change you afterwards, as it was safer and less distressing for everyone than you trying to use your ENSUITE bathroom in the ward? A bad day now is nothing compared to that.A good day then was managing to sit up in bed to eat at mealtimes, or hold a conversation without getting a migraine. A good day now is so much more than that. A good day now is a day's work; of writing up exciting research ideas.

    Things may not be perfect- you may have incurable pain. Bone crushing fatigue sometimes. You may have less energy and more worries than your peers. You may not have your girlish figure anymore (thanks POTS meds! Thanks exercise intolerance!). But you have mobility, dignity, autonomy, and an acute awareness- if you choose- of just how precious these things really are.

    You may be annoyed about losing a day or a week of work. About buggering up another deadline. But actually, BendyLadyWithPOTS, you need to get a grip, because you saw when you went abroad to live just how much worse you could have it: imagine life without the NHS; without the treatment you need and without pills; without the team you've got looking out for you, and without the parental support you've got. Imagine life without this PhD? No escape from the symptoms; just you, and the POTS- that really would drive you round the twist. So next time you feel moany about the work, and about a relapse- just remember- it could be SO.MUCH.WORSE.

     

  • If you google 'POTS', a plethora of patient-written blogs will emerge, usually after 'plain old telephone service'! On the one hand, it's great that so many more people are being diagnosed than when I was, back in 04/05. But with this rise in awareness I have also noticed a perceptible rise in the victim or martyr mentality, a zealous assumption of the sick-role.

    It's a thorny issue, and one that can cause much dispute by evoking powerful feelings.

    How do you deal with a disorder that can't be ignored, that can't be hidden at all times, as it fluctuates?

    The picture is complicated by the fact that the symptoms can be so variable between patients. It's a spectrum disorder, with some people being more mildly affected than others. I know one patient who used a horizontal wheelchair for 6 years, and another who has worked full time without a single day's sick leave in two years. Both have the same diagnosis, but radically different experiences and limitations.

    How do I deal with it?

    I don't really know the answer to this question; I don't know anyone who seems to get it completely right. I don't mind sharing what has helped me, though.

    Remembering physical limitations, but not defining myself by them is key: for example, if there's a lift in a building, I'll use that instead of climbing stairs. If I'm out for a meal, I always ask for extra water. If I'm at a drinks reception, I scan the room instantly for chairs that I can sit on. It's second nature to me now, to think in these terms. I try to find out as much information as I can before an event or occasion to make things easier- to minimise the amount of walking or standing I will have to do.

    Pursuing my career keeps me sane(ish): it's important to have a large bit of my life where POTS is not focused on. There are times when I can't work, of course- and my supervisor is apprised of my situation. Sometimes, work can be so stressful- if I miss a deadline, or if I am unable to work when there is a lot to do, it can really lower my mood. But, by contrast, when I accomplish things in my research, or in my presentation of it- primarily through conferences and publications, the pleasure, the sense of achievement just can't be matched by anything else. I still haven't figured out how best to manage low-grade symptoms, or severe flare ups in terms of work - there seems no easy answer to that matter.

    I actually think that those who experience severe pain, or illness, can appreciate the positives so much more than those who don't swing between opposites like someone with POTS does. But let me be clear- I am NOT saying that by appreciating simple things we should lower our aspirations. I am NOT saying that people with the diagnosis should settle for less than they otherwise would. If anything, the best way to live with POTS is to do just that- to live with it, acknowledging its presence without letting it eclipse your whole identity.

    How I don't deal with it:

    There are other people with POTS who seem to talk about nothing but their illness; who magnify and exaggerate their symptoms and difficulties, who have constructed entire identities and lives based on disability. Because of that, when faced with wonder treatments like mine, they will not 'give up' that status, that identity, even though they are capable of doing so. Instead, they give up on facing the world like the rest of us: they give up on independence, on careers, and they choose to maintain their 'disabled' identity, to be defined by it, and consumed by POTS. They hold on to their wheelchairs, their benefit claims, and in some cases they even seem to boast about it and to derive pleasure from it. I find the actions of these people a total insult to those patients who do try to get on with life. I don't want to be associated with this reductive view which conforms to society's stereotype of people with disabilities not having responsibility for themselves or their lives.

    A consultant once told me to leave university because I was too unwell to last the course. This made me livid and I vowed never to see him again. I sent him a copy of my graduation photograph for the Master's degree I passed with distinction. My response to anyone who tells me POTS means I can't do something is: "REALLY? WATCH ME."

    Hospital admissions are not 'fun', or 'adventures', though they can be uplifting and empowering, positive experiences. They are not about turning a cubicle or room into a grotto. They are about working hard at getting better, about helping staff to understand the nature of this rare disorder. I believe every POTS patient - or patient with any poorly understood condition - has a duty to help those around them understand it, so this can help someone similar in future who may quite literally be in the same position one day.

    There is no definitive right answer to the question of how to deal with POTS because everyone is different. But an approach that means a patient can still pursue a fully rounded life, and maybe make a difference to others while they're at it seems to be more constructive overall than the wallowing and indulgent approach that is the soft or easy option for many folk.

  • Where have you been?

    by bendyladywithPOTS on 01 September 2011

    Hello NHS Heart Blog community. It's definitely been a while! I've been quiet for many months, but with good cause: I've been well enough to get busy with living my life again. Here are some of the things I've been doing since I last wrote in February:

    *I spoke at a conference and presented fresh, original research completed while I was recovering from my Autumn 2010 relapse

    *I travelled to Scotland to see friends

    *I made my first trip abroad since the US. BY TRAIN! (Never again- never take the Continental sleeper; it is in fact a doss house on wheels) But at least I did it- I travelled somewhere hot and was OK.

    *I moved back to University to my own accommodation, away from my parents' house. I have some people on hand to help me out if I need it which is good.

    *I got back to work again

    *I got elected to the Board of Governors of my local NHS Foundation Trust

    *I got the POTS Forum properly up and running.

     

    Why write now?

    To remind myself that I can accomplish things; that a relapse doesn't have to mean the end of the world.

  • My boy walks!

    by Jen heart mum on 14 March 2011

    Hi. Long time no update. What's new? Well at 15 months, my very precious son started walking and the week after crawling. Both are major events in any parents lives but in ours it feels extra special. He is getting a bit bluer and wheezy when he's moving but after speaking to his cardiologist, it's to be expected (especially after he contracted RSV which has messed with his lungs). We had the cardiology outpatients last month too and the leak in one of his valves is getting a tiny bit worse. But the leaks are both still classed as minimal and no one appears worried. It will never stop me worrying mind! But they don't want to see us until August so that means a full 6 months again between check ups. 

     

    The winter was pretty tough on us at the begining. We were in hospital every month for various ailments and by Christmas, his oxygen levels were down to 60%. The lower limit without intervention is supposed to be 75% but it was decided as he was not in respiratery distress to just wait and see. By the New Year he was back up into the 70's again and a couple of weeks after it was in the 80's. My baby also managed to contract bronchiolitis yet again and our GP insisted we go into hospital (against our better judgement as swine flu was rife). But my boy is showing me what a darn good fighter he is and overcame this within a week. Bearing in mind that a year previously the same virus put us in hospital for a month and was borderline for going back into the ICU. 

     

    So the future..... We keep on going. The children's cardiac services are most likely going to get a huge overhaul. Still no surgery planned until his last "fix"= The Fontan (open heart surgery). I have to try and get my little man off the bottle and keep his weight going up. Hope his medication gets changed in the next year to a once daily BP med instead of a twice daily which used to be three times a day. My final words until I bblog again- HLHS is a monster. It's one though which so far my baby is winning the war with. There is still no cure. That sucks!

  •  

    Things are so much brighter now I’ve had this month's injection to start the cycle. It doesn’t seem possible that I’m the same person who couldn’t hold a book open on Tuesday. Thursday saw the first ever meeting of the POTS forum set up by my consultant and I. All of his patients came, and we had two specialist physiotherapists as guest speakers. One was a rheumatology physiotherapist, and one a cardiac-rehabilitation expert. They talked about appropriate exercise for us.  We discussed swimming: Faye, who I mentioned in a recent post, can’t sit up for long but who can swim 100 lengths in an hour because she is the ‘human spirit level’. Swimming is brilliant exercise for us as we can stay strong and conditioned without being upright. I gave an account of my experiences with hydrotherapy and how positive they’ve been. My own physio thinks I’m so much stronger now that I only need one more session of hydrotherapy before I can pursue all my physio work on dry land.

    What a phenomenal difference! Just 12 weeks ago I was wheeled down to my first session and hoisted into the water because I was so floppy and weak. Now I can swim at a normal pool like anyone else. My dry land exercise adventures continue as I’ve now started an exercise on prescription programme. This is a brilliant scheme which means I can work with a personal trainer to draw up a plan of what exercises would be good for me. He’s been able to help me think of ways to boost venous return in my calves, and gradually increase stamina and momentum

    My mind is thawing out again too after last week’s end of cycle brain-freeze. I am fizzing with ideas about my academic work again. While thinking is no problem, I’d not been able to do much academic writing for a very long time- not in the sustained way I used to, anyway. This weekend I started writing and that was it...I was off! Once I started, it was difficult to stop. Academic writing had become an insurmountable task to me, of Everest proportions: I came to fear and dread it because I knew I felt simply too ill for cerebral activity, work that was intellectually challenging. Now I finally have that energy, I see how accessible my goal of writing really is- how I really did make a very big mountain out of a very little mole hill due to feeling so awful with POTS, so washed out and unwell. It’s almost like the scene in Alice in Wonderland where Alice becomes very large and then very small. Such is the positive of coming back to life after years of cerebral hypo-perfusion thanks to POTS.

    This all heralds such optimism for the future: health and career are the foundations by which most of us live, but which most people with POTS grieve the loss of, to a greater or lesser extent. To feel like I am recovering my losses, repairing previous damage, and healing feels like reaching the light at the end of an inordinately long tunnel.

    I’ll close with a comment related to that simile. Someone said to me, when I first began to improve after treatment last year, “Dr Genius (what we all call my consultant) has given you a light at the end of the tunnel”. To which I replied, “No- you’re nearly right but actually, he has come into the tunnel, given me his hand and said, ‘Come on, let’s get out of here and back to the healthy world.’”

     

     

  • After last week's excess activity, I had a totally successful day yesterday. It started off a little achy, but forcing myself to go to the library to work turned out to be super productive as I lasted 8 hours there, fizzing with ideas. I didn't feel sore, or ill in anyway. I had only noticed a mild hummingbird sensation in my chest on walking around, but my blood pressure itself seemed ok, so I wasn't worried.

    Today I woke up bright and early, got myself ready for another exciting and productive day. I had planned exactly what I would read, and thought about meeting some new friends for lunch. The sky was blue, and I could feel the warmth of Spring coming- the light was bright and clear to match my mood and the optimism I felt about going to work. The other students were cheery and smiling. We could all see the gloom of winter was fading. I set up my desk, sat down and began reading, fizzing with ideas again.

    And then it started. The pain. That gnawing, insidious, deep bone-aching pain. I told it to go away, and continued reading. This soon turned into trying to read, but the pain became louder in its intensity- this is the only way I can describe it. Think of trying to work with horrible music playing that gets louder and louder until you can't stand it and work is impossible. That is what pain does to my work. I then couldn't hold the book open or even type as the pain spread to my wrists and even right to my finger tips. My neck and shoulders began to burn with pain along with the base of my skull and I could feel my chest pounding along with my head. Even my jaw ached. It felt like terrible flu. Like someone had pulled the plug on my entire body and ability to think straight.

    I realised that my body wasn't happy about being upright, so I tried reclining. Then walking around to loosen my joints, and following that, sitting cross legged on the floor, to carry on reading and lessen the pain. Everything I could think of to compromise with my body so that I could continue using my mind and achieve something today. I tried for two hours to not give in, having had 14 different tablets including 8 prescription painkillers for break-through pain. (I take a range of pills for regular pain, and then extra ones for breakthrough episodes like this one: the grand total on a bad day like this is 42 pills.) All to no avail. 

    Today I had to accept that my determination wasn't enough. The pain got the better of me- it was frankly unbearable. I failed. I had to be fetched from the library by my parents - I'm so grateful to them- they are always there - but I remember how I used to be totally independent when well. They helped me into the house, and I had to go straight to bed with my wrist splints - my wrists felt like they really would snap, along with my neck and shoulders. I have been here, laying flat, ever since. Sitting up makes my pulse pound in my ears and my eyes, and makes me want to cry with the pain in my body. Standing feels  dizzying and even lying still I have some horrible chest pains. I am so weak today. I can't even do academic reading lying down- there isn't enough energy left after it was drained so deeply by the pain earlier. Sometimes, pacing isn't enough. 

    But, at least I know why this happened. I am at the end of my treatment cycle of octreotide. I now take it on a 21 day cycle. This means I get one big injection, delivered by my lovely arryhythmia nurse in an intramuscular shot,  and it lasts for 21 days. We know that it is optimal at about day 14 from the research that was done on its function as a chemotherapy-type drug treating cancerous tumours in the pancreas and stomach. With POTS, it's less clear cut: it seems to peak earlier in some but later in others. The one thing we all share is a full awareness of when it loses efficacy and stops working. What we do know so far is that most people with POTS don't make it to the end of 28 days before feeling the drug taper off - we don't get to the end of the recommended length of a cycle. So, the POTS patients under my team have a modified cycle of 21 days. I am on day 19, and I can feel how the drug's worn off. Every time the drug fades, it's like someone pulls the plug on my brain, my joints, my body, my existence.

    What goes up at the start of the cycle - my energy levels, my mood, my productivity, my blood pressure- must come down as the drug wears off. 

    Most of the time I can be positive and feel I'm moving forward, but pain seems to force me to look backwards somehow. Today I think of every lost opportunity. I think of the things I would now have been doing if I'd never been ill, or not relapsed last year. I think of the possibilities I would have been exploring- a career abroad? A post-doctoral fellowship? A lectureship? A completed thesis two years ago? All that is ruined, just like my optimism about what I would get done in the library today. It hurts. There is no other way of putting it. Just today, I can't help but think - all I wanted was a day in the library. Why was it too much to ask?

    Then I think of the bigger picture: I used to be poorly like this all day EVERY DAY. There are more good days now than bad, and the days I can do things matter more because of how sharply they contrast with days like this. And there are still great opportunities - they're just different, and not in a country where I wouldn't be helped or looked after if something went wrong.  The University I'm at now is lovely, and everyone is very kind. I feel so welcome and at home here. I feel wanted and valued. I know that when we have our first POTS Forum meeting on Thursday- with my team and all of the patients under it, plus guest speakers- I will be reminded how much better things are than they were, and feel a renewed sense of hope that they're still getting better and appreciation for the treatment I'm receiving. 

  • The art of pacing

    by bendyladywithPOTS on 05 February 2011

    Most people can't imagine having to measure out their daily tasks in the context of a finite reserve of energy, but this is essential for people with POTS. I think of pacing as a high interest savings account, with no overdraft facility. Only instead of having no money if you’re overdrawn, you have no ability to get out of bed, stand up, eat or work. The solution is to avoid going overdrawn: simple, right?

    WRONG. In a condition which fluctuates, like POTS, what means ‘overdrawn’ one day, might not the next: often, this is the case if an unexpected symptom crops up and ruins plans. Paradoxically, I struggled with pacing this week because of an encouraging upward shift in my energy levels and ‘bank balance’.

    Being able to go out every day, to work, to meet people and socialise: each and every hour I could do these things was special.  I made sure that I looked after myself by reclining when I needed it (thank goodness for sofas in the library!), eating enough, and taking breaks. But, I worked hard: I am a self confessed workaholic. On Thursday, I worked for 12 whole hours, and I loved the sense of freedom that brought. I didn’t feel ill, or that my energy supply was diminishing. I felt fabulous and didn’t want to stop: I felt free of POTS. I wanted to savour every page that I read, every smile or hello I could give someone. I didn’t want to waste a moment.

    And herein lies the crux of my problem with pacing. Living with a condition that does its best to impose limitations on everything I do, makes it painful to impose my own limitations on what I am doing; it feels like I am replicating what I hate most about POTS. Turning down a day at the library because I physically can't do it- cancelling on meeting friends- it hurts me to miss out on these opportunities.

    But, POTS has no respect for my plans, my timetable. What helps me live with POTS is my refusal to give in to it, and yet, in theory the concept of pacing could seem to involve a degree of just that- giving in.

    Reflecting on Thursday now, I know I should have done less. As soon as I opened my eyes on Friday, the familiar symptoms, the dreaded sparkly vision, the coat-hanger pain, the joint pain and migraine headache had all flared with a vengeance and I almost fainted. Knowing I had gone from a 12 hour day of work and upright activity just one day ago, to now having to lie completely flat was intensely disappointing. I lost the freedom I had revelled in - that beautiful, precious ability to not think but just do- I had grasped it with both hands last week, but by the end of the week it had slipped through my fingers.

    The coming week doesn’t have to be so all-or-nothing. It isn’t failing if I pack up my books a few hours early. If I think laterally, I can work and conserve energy. I couldn't have my library day and girls' lunch on Friday, but I will be able to do it this week instead, and appreciate it when I do manage it. Which brings me back to the savings account analogy. This week, I have to try harder to spend realistically: to save energy, not go overdrawn or enter the realm of the 'unwell'. If it works, it's thinking laterally and outsmarting POTS. It's beating this disorder in a more sustained way, for the long-haul.

  • When I returned from America in October I was terrified and so frightened by the relapse I’d had that I couldn’t sleep or eat; speaking to trauma specialists didn't help and nor did the calming hugs when I woke up in the middle of the night dripping with sweat and terror from the vivid dreams in which I was back in the States, far away, vulnerable, uncertain of ever returning to the people I loved. The POTS symptoms were intense; my cardiologist discovered a new secondary arrhythmia and events from this time are blurry in my memory.

    One incident permanently etched in my memory is my attempt to have a bath in the hospital a few days after returning. Hospitals are all for showers, and I love a good power shower every day wherever I am, but my ward has the most divine bath you will ever see; it is an all singing all dancing Arjo Jacuzzi, and I wanted to soothe my aching joints by getting some lovely scented bubbles to help me relax. My one love in life, no matter how ill I am, is a bath with gorgeous smellies (the way to this lady's heart is not through her stomach but through toiletries!).

    Getting in was OK, but getting out again made my heart rate suddenly hit 190 bpm in SVT, an irregular rhythm which caused the monitors to alarm (to give you insight- a normal pulse is 60-90 bpm). I could feel the familiar pounding, the blackness descending over my vision, and I was found collapsed on the floor. I can’t remember much, but I remember lots of nurses with raised but distant voices, my arms and legs shaking violently, and a very kind junior doctor who was exactly my age, and told me not to apologise for sobbing as I was given oxygen to bring me back round properly, to full consciousness. I cried for hours: I was full of despair at all that was lost and ruined, at my utter powerlessness to keep hold of the health I had worked so hard to win back before America.

    I was so poorly that day that the nurses had to wheel my bed down the corridor to the bathroom, lift me on to it, as I couldn't even sit up, and take me back to my room at the other end of the ward with the oxygen still flowing because I was still very poorly. I felt hopeless lying dishevelled on that bed, with the nurses trying their best to tell me I was OK. I felt such a failure, because I had lost not just my health, but that independence - that beautiful ability to not think, but just do- to go for a bath if I wanted to, to stand up if I wanted to. I was confined not only to my bed but also to ‘What if....’, to ‘Don’t take risks’. And that confinement lasted long after I left hospital. It was compounded by the flashbacks and nightmares I had about the horrible and totally avoidable circumstances surrounding my relapse in the States. I couldn’t leave the house alone. I was so weak, and so sore that sitting up to eat, or going to the loo on my own, became impossible.

    The only time I would go out was once a week for outpatient hydrotherapy which I’d begun as an inpatient. I was taken by my parents to the hospital pool. . The hydrotherapists would hoist me into the water, and lie me flat as soon as they had hoisted me out at the end. They knew what to do if I had an episode, and to call the doctors if I went funny. That hydrotherapy pool was the only place outside of my house where I felt safe and knew nothing awful would happen. I was proved right when I had an episode during a session, and the team made sure that I was laid flat on a bed at the pool side, and the cardiologists called right away. I had to lie there for an hour, shivering with cold, covered in towels, waiting for my pulse to normalise, and crying with anger and despair about how I had gone from flying off to my new life in America- to this, in just a few short months.

    Slowly, but surely, my parents- solitary light in a sea of darkness and horror- coaxed me outside; a 5 minute walk round the local shop with my stick would become a 10 minute walk on a good day. I tried a few lengths of the local pool, but ended up in the recovery position for 20 minutes at the poolside after just 3 lengths, my mother persuading the staff not to call an ambulance as my blood pressure disappeared, along with the new found confidence that was so fragile. So, I went further with my parents - this time walking the dog, and I began to manage 15, 20 even 30 minutes on a very good day. My new stamina was tangible. I slurred my words by the time I finished these walks, my hands and feet tingling and numb, and my head full of cotton wool, but I kept going- one foot in front of the other. And the momentum gathered- I could walk every day, I could even go to the pool and swim 12 lengths.

    Except for one thing: I couldn’t go out on my own. "What if something happens? Just like it did in America. You can't trust anyone." That voice at the back of my mind would say on repeat ad infinitum.

    Which brings me up to this week: things have improved.

    On Thursday, I attended my first academic seminar in almost a year. Being able to walk into the room felt exhilarating. I was an academic again, not a patient. I made 9 sides of notes, drinking in the stimulation that the talk gave me- making me think in new ways and directions. Using my mind felt magical.  Something that so many graduate students do weekly, or even several times a week without even thinking twice. But to me, this is everything. I've felt so cut off, so isolated since I got back to the UK. My home university won't allow me back, or even talk to me about returning. I'm frightened they'll never let me back. So being part of something- being out, in the world, on my own, and being all right is just what I needed. Not only all right, but deceptively all right- so all right that no one who didn’t know me would suspect a thing.

    There’s a certain poignancy in this: I find myself looking at the students and wondering if they can even imagine what it feels like at such a young age to lose the ability to stand up, to go out to a party, to climb a flight of stairs, be able to work whenever they want, or even be at university pursuing a degree. That poignancy is compounded by the knowledge that in all probability, the other people I can see round the table never will be faced with these barriers, these obstacles. But I know precisely how lucky I am.  The seminar gave me the opportunity to make new friends in my field of study- I found myself laughing, enjoying the company of people: I was outside of the house and OK.

    On Friday, I began an exciting new treatment- the first of its kind in the UK- to combat fatigue and cerebral hypo-perfusion. Within two hours I felt sharper, clearer, and pain free. I walked into the University Library and passed through the entry-barrier at the main entrance, I thought about how it represented one more that I had conquered this week. I looked at the people around me- the students, the staff, in a rush to get their books issued, or looking pensive about work. And I thought to myself how much of a privilege it is that I know precisely how precious it is to be able to stand in a queue with books that you’re well enough to read.

     When I found myself a desk in a beautifully silent corner of the library, I sat down and assembled my work materials. Nothing drastic- nothing out of the ordinary at all to anyone else there. But to me- I might as well have climbed Everest. I had blood in my head that meant I could think, and be pain free at the same time- for the first time in almost twenty years. Can you imagine? People serve less than twenty years as a life sentence for murder nowadays. I felt like I had been released from jail- from the prison of pain, exhaustion and exclusion.  Knowing that I could study this well on the first day of treatment fired such hope and optimism in me. I lasted five whole hours like that in the library- bolt upright. That’s longer upright than I have managed in the last 4 months, since before my American relapse. My body doesn’t always fail me. With the right treatment, it can support me and my work. And that was something I thought would never happen again.

    But it did, just today (Saturday). For the first time since 2009, I rose to my feet in order to make a vote of thanks following a lecture. Today, I finally had the confidence to speak standing up.  Old habits die hard of course- the 'What if....' thought was still there as I stood up and began speaking, but I soon took my mind back to yesterday- the library, and Thursday- the seminar and dinner- and I realised that it doesn’t have to be about what I can’t do. There are more and more things that I can.  

  • Now at the 6 months stage following my open heart surgery in June 2010, I am finally feeling back to 'normal' - whatever that is! I am hitting small targets one by one, which make me feel the road to recovery has been successful. These goal posts have included: running / swimming / cycling for the first time, first airplane flight, first nursing shift. More recently, I have been discharged from the physiotherapists who have been treating my neck and shoulder pain following the surgery. At every step, I want to do a little skip and shout 'look at me, I'm better!'.

    This year, I have set my resolutions to almost the same as last January, just before I was diagnosed with an ASD. My life was altered so dramatically at that time, so thoughts of scars, vanity and generally womanly concerns such as bikinis went out of the window. I can honestly say the only negative feeling I have had towards my scar post op is how much is hurts to wear a sports bra and heart race monitor! Don't get me wrong, I'm not a tomboy and I have hundreds of gorgeous heels but for some reason, when I was faced with the prospect of life altering surgery, I was 100% focused on getting well again. This is just my perspective and I'm sure many women would feel completely differently. I am genuinely looking forward to wearing a bikini in summer.

    When having the discussion with the surgeon about my choice of scar (vertical or horizontal under the right breast), I opted for the vertical incision as I had read that there was better recovery, particularly for swimmers. The top of my scar is visible from pretty much every top I wear, unless it is a high turtle neck. This doesn't bother me and I would be willing to explain what it was to anyone who asked. Nobody has as of yet! I catch people looking at the scar from time to time but let's be honest, how many woman haven't had their chest stared at??

    Weight is another issue important to the female sex and surgery which restricts your physical ability to exercise for several months does tend to make you pile on the pounds. Once I got moving again and was nearly back to my normal level of activity, I followed a healthy diet and achieved my pre-surgery weight. Nothing is impossible, you just have to have the mental strength to persevere.

    2011 for me is a fresh start, a chance to do all the things I missed out on last year and an opportunity to share my story with others, with the hope that I can inspire others to take up exercise even after heart surgery. Follow my journey to achieving my ultimate goal of completing an Ironman triathlon by 2012 at www.corinneellison.com

     

     

  • Perspective

    by Jen heart mum on 19 December 2010

    I have tried to reply to the comments from my previous post and it won't let me so this is my now very long answer. It was mentioned that we are amazing. Erm no (but thanks).  I'm a housewife and I'm still getting my head around my boy's diagnosis. My new motto in life is "Just keep swimming, just keep swimming". 

    Let me tell you a little story from last month when we went to get the MMR done. Sat in the GP's waiting room,  get chatting to another family there waiting for the same. Their boy was born on the exact same day as my son and he's legging it around like a lunatic. The Dad asks me why my son is not walking yet. My answer is he will get there when he's ready and has gone through two open heart surgeries in the last year so it's a miracle that he's even alive. This is the delightful mans reply "Well how many teeth has he got then?"  I came home fuming and shouting to my OH about competitive parents and how he should try walking into a PICU to get a little perspective on life. After about a week, I finally calmed down enough to realise we are extremely fortunate. We know what is important in life. It's life that's important. The rest....... It's ridiculous to get upset about little things. 

    To get back to our little miracle and well away from my ranting. He is the most amazing little man. He's pretty much about where he should be developmentally. His brother did not walk until 19 months so we have a long way to go before we get worried. Our littlest boy is a delight to all who see him. He smiles, eats, walks holding our hands (constantly, I'm developing a hunchback), takes his meds, communicates a little and is a star in hospital. He knows how to behave in hospital as long as no needles come near! 

    The future is uncertain to a point. We are expecting no surgery now until school age, so around 4 years old. After that.... God only knows.  There is no cure. The surgeons can help but not cure.  HLHSers have half a heart that is fully functional. The other half is very small and they can only work around this for so long. The future is a heart transplant, hopefully. How messed up is that? We want a heart transplant and know he needs one when the god-like surgeons have done all they can. 

    I'm going to bed now so I will wish anyone who reads this a Merry Christmas and a Happy New Year!

  • Having a child with HLHS

    by Jen heart mum on 15 December 2010

    Hi there. I'm a Mum of two boys. My youngest has a complex heart condition called Hypoplastic Left Heart Syndrome. He has just celebrated his 1st birthday. We found out at the 20 week scan that our baby had a severe and complex heart condition. To say the last year has been tough is an understatement. I don't ever want to go through a year like that again. At the time, we survived. But when looking back it seems incredible that we all made it. But for the record, I don't regret a single thing (although my tone might indicate otherwise).

    At birth, my son was rushed from me to the SCBU. It was 6 hours later when we saw him again. By this point, he was fully ventilated. His poor little body was in a bad way. He had a bowel infection too and the drugs he was given to keep his heart going were making him too tired to breath. The next day we were informed that if he did not start fighting soon, he would not live another 24 hours. Fast forward through an emergency baptism and a transfer to his surgical hospital, he made it into surgery at 4 days old. He came out with multiple tubes and wires but ALIVE! We stayed there for two weeks then we got transferred back to our local children's hospital. After one week there I was informed that he would be discharged on home oxygen as he could not maintain his saturation levels. The very next day, I was told that plan was being put aside so he could return to his surgeon for his diaphragm plication. Gutted! We were planning our lives starting to have them dashed. A week later we got the transfer back to Birmingham. Another week later after a spell in the PICU, we got back to our local again. The plan to discharge again with oxygen was put back into place and we all came home on Christmas Eve 2009. 

    We had an amazing Christmas although it has to be said that some peoples attitudes made us realise who we wanted in our lives. After Christmas our son contracted RSV and had a month long spell in hospital and came out with a feeding tube too. He was exhausted. He little body had been through the worst and a damn virus nearly finished him. During our hospital stay we missed his cardiac catheter that had been scheduled. So at 5 months old, we went back to Birmingham for a catheter one day and his second open heart surgery (OHS) the next day. The recovery from the second OHS was much quicker although he was in more pain the second time around. 6 days post op, we came home, still with oxygen. 

    At six months old, we were given permission to attempt to wean him off the oxygen. It was successful and we could then start really living! Since then our family finally feels real. We have got our son to eat properly and "lost" the dietician. We only have to go back for cardiology outpatients every 6 months, compared to weekly at one point. But every virus attacks our boy and really knocks him. I'm hoping that by next winter, his immune system kicks in properly as right now we are averaging a hospital stay every 3-4 weeks. 

    I found out the odds recently for HLHSers reaching their first birthday. In the UK it's 56% reach this milestone. Is that good? Well for us, we beat those odds. But we know that many childhood illnesses could inflict great damage on our son. We are very thankful to have our family. But we can't take it for granted. Constantly scared seems normal now. We try to hide it as most people can't deal with it. We do as we have to.

  • Today is exactly 20 weeks since my heart surgery to close a hole in my heart (ASD). This might not sound like an important milestone such as 6 weeks post op (when you can drive) or 12 weeks when the breastbone is siad to be healed after open heart surgery. But 5 months after my operation, I can honestly say I feel back to normal, whatever that is! The only physical symptoms I now notice are neck pain when when lifting anything moderately heavy, slight chest discomfort when coughing or sneezing or wearing a sports bra! My scar is still red and visible but is no longer painful. I am back to running 2-3 times a week, keeping up with friends who were about the same level of fitness as me before I started experiencing symptoms. This time last year, I was training hard after completing 2 marathons and being disappointed with my times.  Although I have missed a year of training and events, I am starting to notice how much I will gain in terms of exercise potential. My energy has improved, I never feel out of breath (apart from when exercising obviously!) and no longer experience chest pain.

    The feeling of being this side of surgery is incredible. For the majority of the time, I forget I had heart surgery - never thought I'd say that! After speaking online with many others who have had similar heart surgery for a congenital heart defect or valve repair, I feel very lucky to be symptom free and have good long term health prospects. I am grateful to have no lingering health problems and not to be on medication. Having said this, I have spoken to many inspiring athletes who have overcome multiple problems including transplants and cancer treatment. Check out www.ironheartracing.com and www.ironmankyle.com for more inspiration!I have been continuing to blog about my experience and journey back to health at www.corinneellison.com.

    Recently, two friends have undergone operations. Listening to their experiences of the anaesthetic, post operative pain and recovery, I could easily sympathise as my experience was only a few weeks ago. Speaking to them reinforced the seriousness of my operation which involved stopping my heart for 39 minutes. With a life altering experience, perspective can be gained. I'm not sure if I have changed as a person, but I certainly take less for granted, have become even more determined to succeed and will not stand for wasting time. As the saying goes, what doesn't kill you, makes you stronger!

     

  • In January this year I was diagnosed with an atrial septal defect - a large hole in the upper chambers of my heart. An ASD is a congenital heart defect, but wasn’t picked up with me at birth (I'm now 27). I began to experience symptoms in Autumn 2009 following 2 marathons and an olympic triathlon. At rest, I started to have mild chest discomfort and palpitations. Over the coming months, this worsened to the point where I experienced shortness of breath on walking upstairs and had a nagging daily pain in my chest. As a nurse, I looked up my symptoms and had inkling that my symptoms were heart-related, although I thought it may be a valve problem (close!). I went through a series of tests, including an MRI, xray and trans-oesphageal echo and eventually got the diagnosis of an ASD. This came a huge shock and it took a while to sink in. I was in the middle of training for the London marathon and running up to 16 miles at the weekend. 

    Initially, the doctors thought the hole was relatively small and could be closed with key hole surgery and the 'balloon' device. This would mean a less invasive operation, shorter recovery time and stay in hospital. Whilst I was waiting for the result of final tests, I prepared myself mentally for the thought of open heart surgery. I'm not sure why, the doctors didn't really warn me that it could be an option. Maybe it was instinct or my healthcare background? Either way, when I was told by the congenital heart defect specialists that I would need open heart surgery, I wasn't shocked. I had given myself time to come round to the idea and was almost eager to get the surgery done as soon as possible. My symptoms as they were at that stage (6 months after initial diagnosis) were so bad that I was unable to walk, do the food shopping, manage the stairs or lie flat in bed. My whole life seemed to become focused on waiting for the surgery. Many patient talked to me about the waiting being the hardest part of surgery. Now on the other side of the bedside, I can concur! 

    When the time for the surgery arrived, the nerves kicked in. I was surprising calm as I listened what the surgeon and anaesthetist had to say about the operation. I had to decide which incision to opt for - either the vertical sternotomy or horizontal thoracotamy. I went for the vertical incision as there was less chance of any problems gaining access to my heart during surgery and less problems for my sporting life afterwards, including swimming. As a woman, I felt there was the expectation that I would opt for the least visible scar. For me, this wasn’t a consideration. The most important thing for me was getting better and having the best possible chance of a full recovery. I have kept a week by week diary of my recovery on my blog: www.corinneellison.com I found this helpful, to write down my feelings and receive encouraging comments from those who read my posts.  

    I am now at 15 weeks post surgery. I am back to work, running, cycling and swimming again. I can’t push myself too much and have lower levels of energy still but can feel a slow but sure improvement every day. Recovery at the beginning was pretty tough – quite painful, frustrating at times, suffered with nausea, headaches and tiredness. All this has paled into insignificance now as I know my heart is healed, almost as good as run. Each time I exercise, I remember that my heart has never worked at full capacity until now and for that I am so grateful. The long term aim for me now is an Ironman! 

     

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Corrine is a Congenital Heart Defect (ASD) survivor, who had open heart surgery in June 2010.

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