If my life were a novel, then being diagnosed with heart failure has taken me from being the main character and rewritten me as a gruesome and slightly tragic side plot. I’ve gone from being the independent heroine of my story to one of those ‘this happened to me’ stories in a woman’s magazine.
For a long time after my diagnosis I didn’t feel like myself anymore. My heart failure has changed me from being a fiercely independent and busy person to being someone who needs constant help and spends the majority of time stuck at home. Adjusting to these limitations on my life wasn’t only a practical consideration though. It was also an emotional one.
I’ve read a lot about living with chronic illness and one of the abiding themes of these articles seems to be the struggle that patients have with their ‘loss of self.’
It’s not something that can easily be explained, so bear with me whilst I try to explain.
Illness is usually defined, even by the medical professionals by ‘the three Ps’ as I call them.
These are the Pain, the Procedures and Participation.
In other words, constantly feeling crap.
The countless medical appointments, prescriptions, tests and treatments.
Finally, the restrictions that chronic illness can put on your day to day life. The mobility issues, the tiredness, the special diets and all the times an ill person has to cancel plans or make compromises.
All of that is bad enough, in and of itself but it doesn’t even touch upon the non -medicalised aspect of chronic illness. The psychological impact of feeling that you’ve lost some vital part of yourself to make room for what ails you is neither asked for or welcomed. It can seem quite overwhelming and for me, has definitely been one of the toughest pill to swallow, (no pun intended!) in my journey.
The chipping away at my sense of self started as soon as I became unwell.
After ten months of GP appointments and of knowing that something was very wrong but not being listened to or taken seriously, I began to doubt myself.
I felt, for a long time that all of the many medical professionals that listened to me tell them that ‘something wasn’t quite right’ saw me as being a bit neurotic. I knew deep down that there was a problem but when so many people assure you that you’re fine, you do start to doubt your sanity slightly.
By not trusting my instincts the Dr’s took away my confidence at dealing with medical issues. They made me stop playing an active role in my own healthcare. Worst of all my unwavering faith in the NHS, (who I had spent my adult life working for and who I lauded to anyone that would listen), was badly damaged.
It didn’t even help that I was eventually vindicated- Spike Milligan’s wonderful epitaph of ‘I Told you I was Sick’ springs to mind here!
In fact it just highlighted that the old Sarah, pre- illness Sarah, would have stood her ground and made them listen. The regrets and doubts that I now feel for not fighting harder have only made new Sarah feel even less like the old, adversarial me.
After, when I became seriously, acutely unwell, the decision making, proactive and independent parts of myself disappeared completely for a while. Those first weeks, when I was critically ill and dependent upon someone else just to walk me to the toilet passed in a blur of first shock then resignation.
I knew then that my life had changed forever. I even accepted it to some extent, as I was so relieved to put a name to my symptoms. I thought that as I’d fought and survived, I was still the old me just Teflon coated. Stronger for my experiences.
I suppose to some extent I am stronger. It’s just that I was blissfully unaware that I now have a permanent hitchhiker, (called HF) that’s along for the ride for the rest of my life. I feel a song coming on;
‘It’s quite heavy, it’s my heart failure’ (sung to The Hollies of course).
I’m so very lucky that I have masses of support and encouragement. Don’t get me wrong, I’m very glad that my loved ones regularly check up on me. I do though, get a bit saddened by the amount of times I’m asked if I’m okay. It’s as though my illness has become the biggest and most interesting part of me, by the way. it’s not, I’m so much more than just a patient. It’s just not always easy for me to remember that. It must be even more difficult for my friends and family who constantly worry about me.
Knowing that I’m causing the people I love to worry is yet another blow to my equilibrium . I don’t want to be a burden to anyone and I don’t want to feel responsible for other people’s peace of mind.
I hate that when my husband calls anyone in our inner circle, their immediate response is that it must be because something bad has happened to me. I feel sad that an ambulance on our street is cause for my local friends to check that it’s not been called out for me.
The unpredictable nature of heart failure doesn’t help with this feeling that we’re all constantly living on tenterhooks.
Being unable to predict how I’ll feel each day, (or sometimes hour), also has an impact. Feeling guilt if I have to cancel plans and even finding it hard to commit to making plans because I don’t know how I’ll feel is another battle for power that my illness has won. I’m still fighting but it feels like ground that I won’t regain some days.
Being medically retired at age 42 meant that HF had stolen my work identity too, until I started to do some small jobs for the wonderful charity I keep mentioning. ‘The Pumping Marvellous Foundation’.
PMF have given me back a part of myself that I thought was gone forever. They’ve given me an opportunity to use my brain and to help others in similar situations to myself. I hadn’t previously realised how important to me feeling useful was, and their acceptance of my offer of help has been the equivalent of throwing someone who was drowning a life ring.
As well as the gifts they’ve given me, the joy of learning again, of being useful once more and of being a part of something bigger than my living room, they also do fantastic work supporting HF patients and raising awareness more generally. Definitely worth checking out and even donating!
Anyone who’s ever been chronically ill will tell you that their illness can sometime seem all consuming. It can become the first thing you think about each morning and your last thoughts at night. It’s easy to lose yourself in the daily tasks of dealing with your health issues. I’m not a very good example of separating myself from my condition. After all I choose to work for a HF charity and for fun I even write a blog about the subject!
For me, though that’s been the best way of dealing with all of this. I’m having to carry it, I have no choice in that but, I am doing so on my own terms. The more I understand the more I ammunition I’ll have to fight and to keep going. One step forward and ten steps back but making steps nonetheless.
Just so you know, it’s not all bad. I used to be a bit of a clean- freak and it was a big step for me resigning myself to the fact that I could no longer keep on top of the house work like I used to. I still sometimes get frustrated by it but it no longer makes me so anxious. So what if my house isn’t spotless- I’m still here and I’m spending less time cleaning so that’s good.
I also read a lot of novels and write terrible poetry too so I am slowly reclaiming the creative part of me.
I have grown to know myself much better than I ever did before. I know that I can cope with difficult situations and I know that the parts of me that make me, who I am, are still there somewhere.
I’m incredibly grateful to those of you that strive to remind me of this fact. You’ll probably never realise how helpful it is to me just to make them feel like myself. I don’t say it often enough but thank you and keep up the good work!
I’ve also been lucky enough to make some lovely new friends recently too and they seem to quite like new Sarah so that’s helped my confidence a lot. I may t not be quite the same but most days I try to think that my illness has improved parts of me in someways. These days I’m more aware, less judgmental and less prone to sweating the small stuff in life.
The word may be essentially set up for healthy people but new Sarah is slowly finding her feet in it and most days is trying to stand on her own.
Head held high.
The one thing that’s made the most tangible improvement to my inefficient heart is the medications I take.
I take a lot of tablets.
Towards the end of her life, my paternal grandma used to say that she took so many pills that she rattled. I used to smile at this imagery but now I understand exactly what she meant.
It varies dependent on pain levels and how much fluid I’ve retained but some days I take up to 20 different tablets.
That’s a lot less than when I was first diagnosed too.
It’s important to say that none of these medications will actually cure my heart failure. However, if I take them every day at the correct times in the right dosage then they should help my heart to function the best that it can. The hope is that my medications will prolong my life, decrease the likelihood of being admitted to the hospital, improve some of my symptoms and slow the progression of my HF. Worth a few bothersome side effects right?
Some of my meds do have some pretty rubbish side effects. In fact, the intended effects of some of my meds are almost as bad as the side effects! Anyone who has ever been prescribed diuretics and felt like they’ve spent half their day in the bathroom peeing like a racehorse will understand exactly what I mean by this!
When you take a variation of strong medication you can never be sure what is the cause of which of the side effect. It can be a tough balancing act and can take a while to titrate medication to the best dosages post diagnosis. It’s worth bearing with it.
The holy trinity of HF meds, despite their drawbacks, have made a huge difference to patients in the last couple of decades. HF patients are living longer post -diagnosis and feeling better day to day. For me, the pros ARE worth the cons because I’m still here but, I don’t always have to like the cons.
Sometimes the cons suck.
Basically, the vast majority of HF patients are prescribed (usually amongst others) three types of medication. An Ace Inhibitor-this makes it easier for blood to flow through the vessels in the heart.
A Beta- blocker- this slows down the heart rate and helps the heart to fill better. Finally, the previously mentioned diuretics- which relieve the symptoms of fluid accumulation- and thank goodness that they do!
These three medications, in conjunction, have been a game changer for HF patients. Not only improving patients prognosis but making their quality of life that much better.
Medical science you are amazing.
The thing is, it’s all well and good knowing all of this. It’s quite a different thing to live with it every day for the rest of your life. Just the act of sorting out the medication, daily, weekly or however often you take your meds is a bit depressing.
It can also be very confusing when each month the medication comes in different boxes from different companies with different sized tablets.
I often forget too if I’ve actually taken my meds. This is more easily done than you’d think once it becomes part of your daily routine.
Apart from all of these niggles and no matter how positive you are or how well you may feel, having to count out and take all those pills is a sure way to remind you, each and every day that you have a serious illness.
It’s become a big part of my month now too, just making sure I have the correct prescription. I’ve spent so much of my time and limited energy trying to ensure that I always have the right doses of the right drugs that I now know my GP’s secretary by her first name and my pharmacist sends me a Christmas card! The former is called Jane and I help keep the latter in businesses! Both are wonderful and I’m very lucky to have them both as part of my health care team.
I’m also well aware that I’m lucky to live in a world where this medication is readily available but even still, I don’t think I’ll ever like taking them. There’s a huge psychological impact of being so reliant on medication. For example, if there’s a zombie apocalypse anytime soon then I will not be one of the survivors. Without my regular prescription I’m toast.
Joking aside, even without the apocalypse scenario it’s a real worry. What if the medication becomes too expensive and the NHS stops funding it? I know that’s not likely but anyone who’s spent any time in any hospital, (or read a newspaper), will know how difficult things are financially in the health service. What if my meds stop working so well? It’s not a given that they will always be as effective as they are now and I must admit that this plays on my mind. The other big worry is the long term effects of all of these mixed medications. A lot of my drugs are new in relative terms. Yes, they may have saved my life and preserved some of my quality of life…..for now. But what will they do to my body long term? I know you’re probably thinking that this is a stupid thing to worry about, I wouldn’t be here, writing this without those drugs. Long term is only actually possible because of them. That’s true, but it it doesn’t stop that little voice in the back of my head that’s waiting for something else to go wrong.
The dreaded diuretics, which ease some of the fluid congestion, (one of the most dangerous symptoms of my HF), can have an adverse impact on your kidneys. I regularly have my blood checked to make sure my kidneys are functioning properly and so far they are doing pretty well. The longer I take diuretics though, the more strain this puts on my renal system. There’s that balance word again folks! Diuretics also disrupt the delicate balance of salts and sugar levels in your blood. I’ve had some issues with severely low salt because of them and that is not a nice feeling at all. Headaches, feeling miserable and confusion, thank goodness for ready salted crisps!
A week ago I started a new medication that takes the place of the blood pressure lowering drug in the trinity I mentioned before, (The Ace Inhibitors usually).
I couldn’t take the recommended Ace inhibitor as it made me feel too unwell but, I did take another form of BP tablet. Weirdly, I’ve never had high blood pressure but the tablets have other benefits for HF patients so low blood pressure is another lovely side effect to add to the list!
The new drug, Sacubitril/valsartan (otherwise known as Entresto), has had great results for some HF patients. I know patients for whom it’s turned their lives around, giving them more energy whilst improving their heart function and in studies it’s done brilliantly well compared to other similar drugs. I’m hopeful that it will work for me but it’s a long process of gradually increasing the dosage and hoping that my system can cope with it. I’m very happy to be allowed to try it as a few months ago I wasn’t well enough to be considered but it’s more side effects to add to the list and more unknowns for the future. Because it’s new, nobody really knows what the long term effects will be on patients but there’s a theory that it could possibly result in dementia. *shudders* Of all of the things that could go wrong with my body, the thought of losing my faculties bothers me the most. I don’t know how likely it is and whether it’s even really a possibility but it is another worry to add to the list of concerns about my health.
Its always gamble you see. If I don’t take the meds then I won’t survive. If I do take them then hopefully I’ll have a longer and healthier life but at what cost? Nobody really knows and to be honest even if I did know then I’m not sure it would put me off taking them because as long as my quality of life is good now, then it’s worth that risk.
One of the major frustrations of my HF is the severe fatigue that can sometimes comes hand in hand with an inefficient heart function. Since my diagnosis I’ve read a lot about Christine Miserandino’s ‘spoon theory’. Basically, the spoon theory is a metaphor for energy that can be applied to the lives of those of us who are disabled or living with a chronic illness. It’s a way of describing the amount of energy that we have when we are limited when it comes to daily tasks and activities.
As a broad metaphor it works really well. It’s also a fairly good way of explaining to people with normal energy levels what it’s like to live with an energy limiting illness.
The basic idea is that each day you have only a finite amount of energy. When those ‘spoonfuls’ of energy are used up then they can only be refilled by resting.
Healthy people don’t have a limited amount of spoons so therefore don’t have to make a conscious choice of what they can and can’t do each day. Miserandino says that,
“The healthy have the luxury of a life without choices, a gift most people take for granted”
To some extent this is true but, it also implies that there are any choices for those of us living with illnesses or disabilities. That we can actually measure our ‘spoonfuls’ of energy and apply this to our lives like some sort of mathematical formula.
Personally I’ve never found this to be the case.
My HF means that I can never be sure how much energy I’ll have from one day to another and there is absolutely no rhyme or reason to the way that what little energy I have is either, used up or conserved on a daily basis. Add in my T1 Diabetes and that’s a whole new level of complicated! I used to have a severe nocturnal hypo then get up the next morning able to pretend I’d slept like a baby.
These days it knocks me for six.
As you can imagine, this makes planning anything at all incredibly difficult. I’m not talking a weekend at a music festival either, this applies to popping out for a coffee or sometimes just to coming downstairs or putting my socks on.
When asked if I’d like to go somewhere or book something for a date in the future I’m always a bit reluctant to say a definite yes. As much as I appreciate being asked and as much as I’d love to do most of these things, I’ve realised that I do sometimes have to let people down. I hate having to do this. It frustrates me immensely. Nowadays I always have to agree to things with the caveat that ‘I’d love to- all being well’
Thankfully most of those in my life do understand and are brilliant at working around me. This doesn’t always make it any easier for me as I find it quite upsetting that I always have to be so cautious.
I’d love to fill my life with plans and adventures but I also know that it will always come down to a choice of where my limited energy can be used and that sometimes I’ll be disappointed or I’ll disappoint the lovely people who are trying their best to spend their time with me.
My ‘energy choices’ are a very conscious part of my every day life now. If I go out for the day with my family, even in my wheelchair, then Im pretty sure that the next day will mean I have no choice but to rest.
If I have to get up super early for an appointment, for example, then I know that I’ll need a good old ‘nanna nap’ in the afternoon.
If I don’t sleep properly on a night then I simply cannot function the following day- I have absolutely no stored energy whatsoever. No stamina and no reserves.
On those glorious, (but rare) days that I awake feeling a bit like I used to, I know that I’ll desperately try to cram in as much as I possibly can. This is a trap. I realise that I’ll suffer for it but, it just feels so good to be like my old self that even knowing the consequences I gladly walk into that trap every time.
It’s always a bit of a rude awakening when I remember my dreams. I dream that I have boundless energy and stamina-just like when I was a teenager and could carry on for days with barley any sleep at all.
It’s been many years since I actually felt this way in real life. I am, after all a forty something, mother of two! But the amazing feeling of awakening with the idea of limitless energy and then struggling to get in the shower or get my clothes on is a bit of a tough compromise.
The medical people and others with HF patients tell you that eventually you’ll get used to your ‘new normal’ that you’ll find workarounds. Any of you that know me will attest to the fact that I’m a very practical person and I have found some ways of conserving small amounts of energy.
I have very tidy cupboards and drawers so it’s much easier for me to find things. I have a beautiful new kitchen with pull- out drawers, easy access oven and microwave and a seat so that I can sit when I have the energy to cook. I don’t waste my energy on boring things like ironing or cleaning my windows. I used to be a bit on the obsessively tidy side but not anymore!
I’ve resigned myself to using a wheelchair if my plans would otherwise involve lots of walking- this is a huge compromise for me as I’ve always been very independent and I hate relying on others. However using my chair gives me freedoms that otherwise I just wouldn’t have any longer.
I really don’t like to complain and I do realise that my HF symptoms are manageable, most days. I’ve said before that I’m lucky in so many ways. My diagnosis has taught me to not waste my time and energy and to be a bit more discerning about what I choose to do. I certainly waste a lot less energy than I used to on stressing!
I’m an avid reader and am reading more now than I’ve ever done before. I’m writing more too which gives me enormous pleasure.
Most days, now that I’m mostly recovered from my heart surgery I’m not in a huge amount of pain. Unless I overdo things then my poor muscles don’t get enough oxygen (because my heart can’t supply as much as it once used to) and then I can definitely feel it!
If I overdo things then there’s also a risk of retaining too much fluid. The old term ‘congestive heart failure’ refers to the awful situation that can happen when HF patients ineffective heart function leads to mixed messages in the body. Basically, because the heart isn’t working as it should this then sends signals that somehow the heart is slowing because your body is losing blood.. This leads to your body storing fluid. Not good when it fills your ankles, abdomen or lungs because your system won’t allow your kidney to dispose of it.
This is how I was eventually diagnosed. Pulmonary oedema- or my lungs filling with fluid that couldn’t be flushed out of my system. This is also why most HF patients have the joys of taking diuretics daily. (More about those in an upcoming blog about HF medications)
In basic terms, the more I do then the harder my heart has to work. The more tired I become than the more she is compromised. That’s not to say that I can’t exercise. I’m currently doing cardiac rehab classes, but it does mean that I have to be very aware of my limits.
I’m hopeful that one day I’ll find some form of balance- that happy medium of excretion and rest that I’m happy with, well, it if not happy, then at least satisfied. I’d really love to be able to go swimming or to take a tai chi class one day. Maybe, fingers crossed if I look after myself this may be possible in my future. I certainly hope so.
In the meantime, if I don’t reply to your messages straight away or if I can’t accept an invite to do something that I would have once jumped at, please don’t take it personally. I’m really not being rude. I just honestly never know how my spoonfuls will work out each day. I’ve never been a natural mathematician and there is no equation that helps me understand my bodies needs right now. I am trying my best though and I certainly don’t intend to give in or give up anytime soon.
Since my last two blogs have been about some of the medical issues of HF I’ve decided to write this one about a bit more personal subject. I’m not often sentimental but recent events would make even those hardened cynics amongst you feel a tiny bit emotional. You have been warned!
One of the most positive outcomes of my HF diagnosis has got to be my change of perspective on life. It’s a real shame that it takes an event like this to make you truly understand what’s important in your life. We’re all so busy and we always imagine that there will be more time. But what if there isn’t ? What if overnight, your life changes completely and a lot of what you planned for the future is no longer possible? What if you don’t always recognise yourself anymore.
My diagnosis has raised all of these questions and more. One the one hand, it’s made me lose some of my confidence. I don’t often leave the house alone. My mobility is pretty limited and I’m always so exhausted. My appearance has changed as I’ve been unable to excersise and I now have a fantastic collection of scars. (I’m really not looking forward to the summer months). My hair is longer than it’s ever been, (mainly because I don’t get to the hairdressers very often) and my limitations have changed my outlook on life. A lot.
On the other hand, my pared down life has shown me what is truly important to me. I realise it sounds trite but going through what I did has really shown me that I don’t need things I don’t already have. I realise that things could be a lot worse, I have a condition that is mostly irreversible and changes my life irrevocably but it could be so much worse. I have a condition that means I have to eat healthily, I have to rest (and read) a lot and get to spend lots of time cuddled up with my family talking and laughing. Basically, I’ve learnt not to sweat the small stuff and I have the knowledge that things really could have been so much worse.
Since my diagnosis I’ve tried to surround myself with people and things that make me happy rather than stressful situations and people that make me tense. So what if that’s slightly selfish. Its my family and my friends that makes the bad days worth bearing with. It’s them that I fight for and it’s them that have shown me that even slightly broken I’m still loved and cherished. This is worth more to me than than one measly blog post can ever say.
I consider myself to be one lucky woman, my husband, (who will hate being mentioned), has been AMAZING- like, superhero amazing. He comes with me to appointments, he brings me treats to cheer me up, (nothing expensive but small treats to keep my spirits up- it was a jar of pickled onions last week). He rubs my back when my muscles ache, he pushes me about in a wheelchair when I need him to, mostly without complaint. He’s picked up all the slack of family life, he does a lot of the cleaning and cooking and goes alone to school events that are too much for me and most importantly he makes me feel loved and like myself. He knows how to make me see the funny side of things and he makes me laugh even when I’m struggling and he never makes me feel as though I’m hard work- I know that I am sometimes, but he never makes me feel that way, and he will not let me apologise for putting him in this position. He’s pretty handsome too 😊
I’m bragging a bit now I know, but I have two fabulous daughters too. They’ve both had a tough couple of years, daughter number one was sitting her GCSE’s whilst I was recovering from heart surgery, which must have been so tough but she never complained and did amazingly well. Daughter number two has had to grow up pretty fast. They both have to shoulder a lot more than most teenagers do and they do it with grace and maturity. They help with the housework, they both have a good reportoire of recipies that they can and do cook from scratch regularly. But it not only these things that make me so proud.
I’ve always believed that they should be independent and responsible. I want them to go out into the world with the skills to look after themselves. No, it’s the other things they do that make me prouder. When I go up to bed exhausted and one of them offers to sort out my medication for me. When I’m having a bad day and they keep me company on the sofa watching a show they’re not really interested in. When they bring me a cup of tea without being asked and when they change their expectations of what I can do with them, without making me feel guilty one bit. Whilst I’ve been poorly my girls have become my protectors and my carers but also they’ve become my friends. They confide in me more, probably to keep me from feeling I’m as not involved in their lives and we are, now much more honest about our feeling then we ever were before. They amaze me everyday
I have a wonderful extended family too. My parents are legends. My mum and stepdad have been with me every step of the way. Telling me how well I’m doing and pushing me to keep going when I want to give up. My mum bought me new pyjamas each time I went into hospital- any of those of you who have been an inpatient will know that this is a big deal. She’s taken the girls out clothes shopping when I couldn’t. She’s done lots of baskets of ironing and sent delicious home cooked meals. She also read every bit of research about HF that she can find and passed on the good bits to me. They are supportive and caring and I thank my lucky stars for them daily.
Its not just my parents though, I have a wonderful grandma who’s in her 90’s but still a huge source of support, three amazing aunties and fab uncles who give me lifts to appointments, send me regular messages of support and all of whom have gone above and beyond for my family in this difficult time. There are more I could mention but let’s just say that as families go, mine have been pretty awesome.
I have some pretty cool friends too. The photo above is of a gift made and sent to me just before my surgery last year by some of my favourite people. They don’t live near me but they are very close to my heart. The jar in the pic was full of ‘happies’. Little notes of love, support and encouragement that gave me weeks of boosts when I was feeling low. Some of the notes are now framed and on my bathroom wall so still giving me joy even now. I can honestly say this was one of the most thoughtful and special gifts that I have ever received.
I have other friends who live away but send me regular silly or supportive messages and emails which they know will make me smile. Some who have come a long way to visit and have boosted me imesurably by doing so. I received lovely, thoughtful gifts in the post and heartfelt messages of encouragement when I need them most. I’ve even been taken to the ballet by one very thoughtful friend.My local friends have called in to see me regularly and stopped me going stir crazy. They’ve popped to the shops for me when I couldn’t go myself and they’ve made me laugh so much it made me breathless, oh wait it might have been the HF that made me breathless! Regardless, laughter is a pretty good medicine that I take with pleasure.
There are so many other people I could mention here. The postman who told all his colleagues who work my street that I can’t get to the door quickly and if I don’t answer the door the first time to try again on their way back past. He is always so happy to see that I’m okay, it’s a good job I do most of my shopping online as it gives him an excuse to check up on me!
My heart failure nurse who has been my advocate medically but has also become a friend, I’ll probably do a post about her later on. The community phlebotomist who is the only person that can get a blood sample from me so is a regular visitor, and a very lovely one too. The team at Pumping Marvellous, (a charity especially for HF patients) that have taken me under their wing and made me a part of something bigger than my living room. For this, I will be forever grateful. It’s likely that they will get many more mentions in other blogs because they’ve made such a huge and positive difference to my life. They understand in a way that only other patients can, and they always know what to say to make me feel as though I am strong enough to carry on. Btw, they are a small charity and are always very grateful for any donations!
As you can see, I’m incredibly lucky in a million different ways, some small and some enormous. I knew this already, but my diagnosis has confirmed it a thousandfold. For every piece of bad news, for every hard decision and compromise, for every bit of pain and fear I have had a positive to hold against it. I’ve made new friends, I’ve reconnected with old friends, I’ve realised even more just how superb those closest to me are and I’ve been loved and supported by people who have my back.
I really, truly couldn’t possibly have done this without you all. I don’t say it often enough but you guys rock.
If you read my last post then you’ll know that my poor old heart, (Gloria) has been through a lot.
All things considered she’s doing pretty damn well, Go on Gloria!
At diagnosis my Ejection Fraction, (basically the amount that my heart was pumping), was very low but, with medication and surgery and with the help of an ICD device it has actually improved a bit. In fact my HF is now classed as ‘being in ‘severe to moderate’ heart failure rather than just ‘severe’.
I’m so happy that I have even this small improvement and incredibly thankful to everyone involved in my care. But a lot of my progress is down to medical science too.
HF treatment has progressed immensely over the last decade and I’m one of many that is able to live my life because of this progression. The drug regime and some of the other things that mean people can live with HF,will eventually have a blog posts of their own. This one is the science bit.
It’s strange to think of your body being so damaged that you’re helped to be kept alive by machines.
It’s a very odd thing to reconcile in your head but it’s also pretty cool. I’ve always loved sci- fi and robotics so having a machine below my left shoulder that keeps an eye on my heart rhythms has me in total awe.
My ICD (internal defibrillator device) or Abby as I call her, is truly amazing. She’s named that as I was told in the pre op appointment that I should think of it like an air bag. (A, B – Abby). I’m lucky that I don’t have and pacing problems with my heart. No arrhythmia so far, so no shocks to date. She’s mainly there in case of emergencies and I’m so glad she is.
Unfortunately I’m at a much higher risk of my heart stopping due to the heart failure so Abby is there to shock my heart back into gear should I go into cardiac arrest.
You wouldn’t think that having a matchbox sized lump of metal in your chest would be reassuring but honestly, to me, it really is. I’ve heard lots of other HF patients say that they forget about their ICD’s after a while but that hasn’t happened to me yet. I’m always aware of Abby, but I take huge reassurance from that.
Having Abby implanted was a much easier procedure than my CABG. I was only in the hospital for one night and I was awake for the surgery itself. According to the poor surgeon that fitted the device to my heart, I have ‘very tough sinew’. It took an awful lot of tugging and pulling and delving to settle Abby into place. At one point the poor guy had one knee on the edge of the operating table and was panting with exertion. I’d had a strong sedative by this point, which any of you who’ve had one will know, is a tiny bit like being drunk. Unfortunately the sedation seemed to effect the filter between my brain and my mouth. Whilst he was desperately trying to tame my ‘tough sinews’ I remember telling him, “Gosh, I bet you’re really good at making dough. Do you bake much?” Cue suppressed laughter and much coughing in the theatre!
Apparently my surgeon doesn’t have a baking inclinations.
These machines are truly amazing, they are getting smaller all the time and the newer models are tiny and even self charge from your movements like a dynamo. Soon there will be no more need for surgery to change the batteries in your device every few years. It amazes me how quickly medical tech is moving.
My device is large in comparison to the newest ones but it’s still very clever. It uses bluetooth to transfer all of my heart rhythms to the pacing team at the hospital each morning and alerts them if there are any issues. I can’t tell you how much it helps knowing someone can see if your heart is in trouble just by checking an app!
Like with any foreign object there are risks involved with having an ICD. It can lead to infections in the sight, it can sometimes be painful if it moves, you can’t lift your arm too high or lift heavy things and it is possible for it to shock you unnecessarily. Thankfully I’ve not had a shock from mine yet.
I am still always a little uneasy when I wake from a nap with the cat asleep on my chest- what would happen to her if I got a shock?
I’m told that as it’s in situ that it’s a much smaller shock than the ones you see on hospital dramas! Good job really because if it triggered then I doubt I’d be in a position to shout “clear”!
Really, I’m an old hat at this whole electronic device business, having being the proud owner of an insulin pump for the last decade. My insulin pump made my diabetes much easier to handle and tightened my control even more. What with constant blood monitoring patches and electronic pancreas technology , diabetes care is also becoming increasingly mechanical.
It’s sad that my body needs this help. I really wish it didn’t. I don’t much like the feeling of the corner of my ICD making a lump in my shoulder and some days it still feels very……foreign, especially at 11.12 pm when Abby recalibrates each night. If I’m already asleep then I miss this but if not, then Abby has to run checks, to do this she speeds my heart up really fast. It’s the strangest sensation, the only way I can describe it that it’s like having a medium -sized bird trapped inside your chest flapping its wings like mad! Very weird.
I suppose that living with these devices is good practice. The checks, the charging and the staying clear of other electronics that might interfere with my devices. (Garage doors with remote control are to be avoided at all costs)!
All of these weird experiences will surely benefit me should my condition progress. As I mentioned in my previous post, Should the need arise I probably won’t be offered a heart transplant. This was terrifying to hear but the more I’ve read and researched and the more technology progresses, the better I feel about man -made devices that either aid or do the entire job of a human heart.
It’s been a funny old year.
In September 2016 after a nasty bout of shingles and months of failing to recover from it, I was rushed into resus by ambulance and diagnosed with severe heart failure.
As well as the shingles damaging my left ventricle I’m also a T1 diabetic and have been for 40 years. I also have a genetic issue with familial hypercholesrerolaemia (FH). All risk factors for cardiac complications and all of which had taken their toll on my poor heart. Despite being in my forties heart age is probably around 70, bless her.
Despite being aware of all these factors my diagnosis was still a huge shock.
I’ve always had good control over my diabetes, I’d taken statins since I was a teenager and I was a busy, active mum of two.
Until I got shingles that is.
Being aware of risk factors and having some outside force bring all of those risks to the forefront are very different things.
For a while I was angry. I’d done everything I’d been told, I’d read a lot about health, invested in a healthy diet and taken all of my medication every day for years.
I was an exemplary patient and despite having a rubbish immune system and catching lots of infections I was doing pretty well.
It seemed really unfair that despite controlling and balancing every element of my life for so many years something beyond my control had robbed me of my (imagined) future.
I began to change my thinking on this when my cardiologist pointed out that if I hadn’t looked after myself so well, if I’d ever been a smoker or if I’d not had my diabetes under such tight control then I’d most likely not be here writing this.
That was a bit of wake up call and although some days I’m still angry enough to want to throw plates, I’m thankful that my years of being careful have meant that I’m still able to carry on despite my limitations.
It’s been almost a year since I had open heart surgery and 8 month since I had an internal defibrillator device fitted and I won’t lie, it hasn’t been easy. I finally feel ready to talk about it now though so that’s progress.
I had a triple CABG (cardiac arterial bypass graft) procedure on the 23rd of Feb 2017. It was touch and go whether I’d be allowed to have the surgery as my heart failure at the time was so severe and I was warned that it wasn’t going to change my day to day life. It was sold to me as a ‘patch up job to protect the parts of my heart that weren’t already irretrievable’. Phew, that was a tough sentence to hear. Especially since my husband and mum were in the room at the time.
The medical people finally decided that the surgery, despite being risky was my best option at the time as it was unlikely that I would be assessed favourably for a transplant. The surgery itself went remarkably well I’m told, apart from the damage from the virus, my heart was in good condition with hardly any arterial furring. See, all my years of being careful really did help!
If you’re strong of stomach and interested then you can watch the procedure on YouTube. I did several times before my op as a way of preparing myself and for me, it really helped.
I knew that they would stop and restart my heart. (No point signing a DNR as that would mean they weren’t able to restart my heart once they operated).
I knew that I’d be on bypass and that this was a risk in itself and I knew I’d have a bloody big scar on my chest.
I joked with one of the nurses that by the time I was discharged more people had seen my chest than most Page 3 models!
I think the thing I was most worried about being in the ICU after the op.
I knew I’d be ventilated and I had nightmares about them removing the tube. I actually have no memories of this at all.
The first thing I remember was groaning and telling my amazing husband, (who’d barely left my side and had promised to be there when I awoke), that I felt like I’d been hit by a bus.
The painkillers soon put an end to that and within a few hours I’d managed to eat a few mouthfuls of corned beef hash and drink a full cup of tea.
It’s amazing how resilient the human body is.
I spent 3 days in ICU and 4 days on a high dependency cardiac ward and was immensely proud that I made it home with nothing but paracetamol in my system.
I felt jubilant that I’d come out of the whole experience relatively unscathed. I don’t think anyone expected me to and it was cool proving them wrong.
It wasn’t as easy as I’d first hoped, I later went on to have an infection in the sight where they’d harvested a vein in my forearm, all of my scars are now pretty horrific keloid scars and I suffered with awful bone pain when my sternum started to re-knit, but I survived and at times I certainly didn’t expect to.
Emotionally it’s been tough, I think of myself as being mentally strong but the last years rollercoaster ride has taken its toll. Whether that’s because of the surgery, the HF diagnosis or the fact that my life has changed so much is still up for debate. Personally I think it all of them combined.
I try really hard to stay positive and that’s helped me massively, I’m lucky enough to have found an amazing patient- led charity, The Pumping Marvellous Foundation, http://pumpingmarvellous.org/ when I needed it most and they have supported and advised me through the toughest year of my life and even managed to make me laugh along the way.
I honestly don’t know what I would have done without them and the cherry on top is that they’ve actually let me help them out occasionally so that I can pass on my experience and help others. I’m hugely grateful for this as it’s made me feel useful again.
Anyway, I’ll draw this super -long introduction to a close now.
Thanks for reading.
Until next time,