Survivor guilt

 As new year & Hogmanay approaches I always get deep into my own thoughts "what have I achieved this year" and "what is my target next year" is never far from my thoughts at this time. I love Hogmanay with it's tradition in my childhood household as a new start. My parents instilled looking ahead positively at this time as I grew up.

I have always been like this. Some have called me a dreamer but as I look back on my life I have a history of achieving those dreams eventually. I have experienced & enjoyed so much I surprise myself at times with memories that spring into my mind from surprising triggers. Like my detailed tour of Westminster & drunken late night on the famous Westminster terrace as guest of then rebel MP but now shadow chancellor John McDonnel. The debate went on until 2am in the morning. We got absolutely legless & he drove us home.

This sense of trying to experience so much was heightened 9 years ago when diagnosed with heart failure and told the blood clot would have killed me if it had moved. 

I was so lucky to meet & fall in love with my fellow heart patient Lorna early in my heart journey. I was reckless in the early days after diagnosis when I didn't understand the strange feelings I was having & I blew any savings I had. 

Lorna gave me direction & structure to achieve goals together. I have settled down to a busy but wonderful life.  The Olympics, Commonwealth Games, Tours of Scotland, European & Scottish parliaments, the list is staggering for 2 heart failure patients but basically we just want to enjoy this life so much but we also strive to include & show the kids to follow their dreams also.

I accepted early on in my heart failure journey that my death could be instant at any time, I do not fear it as I believe 9 years on those closest to me will remember me fondly with shared happy memories. 

I have spent so much quality time with those I love especially nephews/nieces I simply didn't know before. Lorna & my daughters will be financially secure & I tell them not to mourn me for long but instead to fondly remember me then carry on the dreaming.

If your close to heart failure groups you see death regularly although not as often as you would think now because of modern medicine. Not all of them shake me and I just accept majority of them as part of my journey.

3 so far have affected me badly, Sandra, Helen & Yasmina I remember exactly where I was when I got told. Their own heart journeys touched me and when they suddenly ended I panicked at am I doing enough to justify my extended life. Have I done enough with those closest I love so much. Have I just fallen into complacency at my achievements so far? My life comes under a dark cloud for a while as I consider the implications, I become scared, I become angry, I have come to understand the term is survivor guilt.

So this month I got another shock that shook me but from an unexpected person not heart related. In my 2005's boys football team I have one lad who plays for 1st team who if I am short & games don't collide I call on the Friday & he comes and plays for my team. I secretly wish for this every week. His mum is always so positive on the phone & usually when she drops him off she tells me he loves playing for my team. She usually rushes off to drop the older boy at his football. I called last Friday night and she says straight away yes as she explains he gets excited when he heard her say "hi John". He arrived with his dad last week and I love coaching this lad, his enthusiasm is infectious within a team, Kyle tells me he loves playing with him. Every game he listens and always does what I ask, we win 6-1. I speak to his dad to tell him this & he explains the lad enjoys my team because of how I coach him. He feels my team would beat the 1st team now, The respect is mutual & my dealings with this family are always a joy & positive.

As I am walking with Hamish on a Thursday morning with a full positive day planned I get a text from football Team Secretary, the mum it appears had brain hemorrage and died instantly day before. She was 45 with 3 young boys. 

Suddenly I regonise the feelings of panic within me, the questions will take over my thoughts, I need to be careful I don't shut out Lorna and others during this process as I have before. I need to be careful with those that annoy me because my reactions can be brutal.

Like any experience hopefully you learn from it so straight away I discuss this with Lorna and of course she too has similar thoughts, I need to be careful especially at work because it isn't important to me at times like this. Everything is about Lorna, family & the kids. I have an anger within me that is hard to explain. I worry about Lorna & the girls after I go.

The last few days have been hard & I so want to cuddle my daughters but they are so far away. I beat myself up that I am not doing enough with Lorna & family especially my dad. I need to make next year more full & more worthwhile than even this year. I do not fear death but I worry for those close to me.

This process will last for weeks maybe months until I plan something with those I love, I need to visit Phil or Robert. I must tell all I love them. I need to cuddle Lorna more. Survivor guilt is not a bad thing if you understand it & use it to overcome tiredness, fatigue and pains. It just isn't a nice period in my journey. This is one reason I drive myself to achieve so much. I know I am so lucky to get these extra days, months & years. I just wonder why I got them when some didn't.

My work journey

My employers of 20 years have played a huge part in my heart failure journey, my salary is above average,  I am luckymy benefits include full sick pay for absences up to 4 months, my pension is good even if I doubt I will use much of it but death benefits will financially secure my family after I go.

At the time of my diagnosis my career was at its peak in Cornwall. I was recognised as good at my job and further career opportunities looked good and most importantly I loved my job. I felt 100% confident in my abilities. So what has changed over the last 9 years?

My 1st long lay off after diagnosis was 4 months and I returned to a new challenge in Glasgow. Looking back I know now I made my 1st mistake here. But I was in denial of my chronic progressive heart condition. I didn't lie to my employers I just didn't tell them the truth because, at that point, even I didn't know the truth. Did they support me? I don't think so and what we had was 2 sides not trusting or understanding each other.

My return to work should have been slower & more structured. Not once did I meet occupational health because I returned saying am fully recovered. In retrospect I should have accepted maybe a drop in role & salary would have been the best option. Instead retaining my salary was everything to me. Nobody had that conversation with me & they basically believed me when I said I was fit to return. 

It soon became clear that my personality had changed, my mind was muddled, I fought to hide it but only made it worse, the problem was not physical it was purely psychological, paranoia was at the centre of it, negativity had replaced positivity. Motivation was a daily problem, I wanted to work but would question was it worth the hassle. After facing possible death and recovering it's easy for your mindset to become 'is this really worth it? shouldn't I be doing something more with my life?'

When I talk to fellow heart patients now about them returning to work after being diagnosed I say what my GP said to me 'you have been through a life changing event at a relatively young age, it will change you' I only lasted 2 years before my heart failure reared its ugly head again. This time I took even longer off and as a result my career in a job I once loved was hanging by a thread.

My involvement with my employers during this time off and prior to my operation and then my return after I had my device fitted which uniquely made me 100% device dependant was again handled poorly by me. But this time I had no one to ask, I had no fellow heart patient to give me advice. I fought my employers. I hated them for the perceived injustice when what I should have done is admitted my own faults and tried to find the best job for me irrelevant of salary. After my return I did reach 2 years as a green performer but looking back I didn't enjoy it. I fought the fight admirably but stupidly. I struggled through not enjoying it and some members in my team did not see my previous pre diagnosis leadership skills that I had been praised for. Basically I survived by the skin of my teeth. Now I am the level below on a lower salary and I still struggle sometimes but I am a green performer and once again I enjoy my job. 

So what has changed? The truth is it comes down to my Store manager, people manager and regional teams attitude towards me and my condition. I feel confident to openly talk about my condition and problems to them. I trust them! I've had to accept that I will never reach the peaks of my career again but I am an experienced manager with so much to give and for the 1st time since my diagnosis I can talk to my manager and people manager about appointments, fatigue and illness. I have, for the 1st time, explained how I struggle in meetings. They ask me if I need help and offer genuine support.

It has been such a steep learning curve on how to handle a chronic progressive heart condition and still work. So many mistakes on both sides but hopefully we can both use our experiences for future heart patients returning to work. After all more of us are living so it is happening more often. 

At a course a few weeks ago in one room were 6 people out of 20 who have played a huge part in my work journey. 2 of them were very bad experiences but I realised that the majority were good ones. One I wanted to apologise to for basically receiving the worst my condition made me. The regional people manager mentioned to this group my End2End being inspiring and I thanked her after it for everything she had done during my End2End. This lady tracked and followed my progress on Facebook often offering support at crucial times. She spoke at the meeting that day about changing cultures and I believed her because I trust her. I wanted to hug and thank her because for the 1st time I believed my employer was willing to learn about how to support those with my health problems. She has spoke consistently at our store meetings in the last 2 years about leadership and its importance. And so I want to tell her she is leading the way and I have seen the change for good within our company. However the fear and paranoid thoughts of being extremely open about my heart condition are still there for me. Maybe because when I was diagnosed I was told I'd never be able to work again! 

Within the next 2 years my device will be changed and I once again will need to return to work after long emotional life changing lay off but I will approach it differently and I believe my employer will too because of those I have mentioned above. I will approach my return more open minded. I will ask for more time and a structured return but not expect or demand it. I will be honest with myself on how I am feeling both physically and mentally. Then more importantly if not up to job I will ask what they can offer but not make selfish unreasonable demands. Hopefully we can reach a decision that suits us both because at this moment in time they have a highly motivated experienced employee who hasn't had day off sick in 2 years so both sides benefit from me being there. 

Employers, in general, need to learn due to medical advances more employees will return to work with medical issues like mine but they will only learn if more like me speak up. It is scary to admit failings but I have seen positive changes so it does work. I have high hopes for heart patients and future work opportunies.

Why blog

I didn't blog for a few weeks which didn't mean I wasn't looking for topics but rather i myself didn't find them deep enough for a detailed blog.

The point of writing a blog along with Facebook page "The John & Lorna show" is to highlight living with heart failure can be positive, the feedback about both is always positive. 

I sometimes wonder if both actually work in their aim but then I remember they also act as a reminder to both me & Lorna of our journey because as heart failure patients we forget majority of it so in the bad days they help raise the spirits.

So much goes on in our life. Lorna is fighting her back pain which will hopefully end soon with operation, through the night neither of us heart failure patients sleep well yet is strange to listen to someone cry out in pain while still asleep. Her business is going exceptionally well despite the pain & amount of painkillers/muscle relaxants She takes. I have become a house husband but in reality it just highlights our team ethos. Together we will fight through this like we always do.

Lorna is very interested in work of food bank charity Trussell trust who she is in contact with, we might do something for homeless this Christmas. Now Lorna up & moving more we can maybe book a wee road trip somewhere in Scotland.

I am genuinely interested after Conferance 2 weeks ago in role of primary care for heart patients especially GP surgery nurses, we have the contacts to take this forward in Scotland but will take focus. When we met the people involved in this I want to support them so much but am wary because it deserves our full focus but can we give that? 

My 2005's football team I coach have ended season with 75%+ win ratio, I have completed another coaching course, I do this & commit so much time to it because of Kyle yet when no parent would step forward to take on this bunch of no hopers possible 2nd team I knew full well I would need to become a fully qualified coach not through necessity but because my personality would demand it. but now my 16yr old nephew wants to go through my next stage youth coaching badges with me which I will love as I so enjoy being with him watching him grow into a young man.

I have grace up for new year as usual so how will we celebrate this year & look forward to next year. I have Austwiz in February with Morgan & Florence with Ally Bally later in April/March.. No doubt I will just need to get to airport after Lorna has organised it all.

I have my training for my 3 mile Loch lomand swim but am suffering an exercise hangover after John O'Groats/Lands End cycle so in reality haven't started. So much going on in my head around this yet I just can't get into pool.

Am enjoying work leading up to Christmas because since End2End I fully focus on it, my next steps are complete bar the usual captain Choas moments, my staff seem happy, dept is coming on & I feel in control. I completed a 12 hour shift other day with no real breaks but achieved so much. Explaining to fellow colleagues I just get into situation where my device ticks along at say 80/90 beats a minute for whole time, I am fully alert throughout yet so aware to sit down & with 50 seconds my whole body tempo will change probably for rest of day, fatigue & mind fog will come quickly. I know when get home this will happen.

So here I am having a lazy Sunday morning in bed with Lorna feeling guilty I am not up doing something rather than writing a blog but it has made me realise maybe this wee lazy Sunday morning is not as bad as it seems so highlights another benifit of blog.

"What does a GP practice nurse do"

Lorna & I love a road trip and just need an excuse to set out on one, so 24hrs after setting out on such a trip to Manchester we are back in our own bed knackered, sore & happy.

The reason for this road trip was all my idea, the meeting we attended was originally unimportant because the sole reason I wanted to attend was to meet in person some NHS people I had followed & chatted to on Twitter. What I learned was how important a practice nurse can be offering consistancy of treatment as GP's jobs get busier. More importantly I met some incredible people.

Heather & Louise are 2 practice nurses in Manchester with a vision to make practice nurses central to chronic patient  care. A simple idea that I know makes perfect sense yet these 2 are just starting a fight to get it recognised nationwide, they have chosen to reach out from their comfort zone starting with the Conferance today because they believe so much in it, following their fight from now will be interesting, as a chronic heart condition patient these 2 are exactly the patient focus treatment I received so I know it works. Like myself they deflect praise but I found both inspiring today because I saw their passion for patients, the desire to make the NHS patient friendly & like myself I see positive & inspiring people around them.

I had followed John on Twitter and his understanding & desire for change needed in NHS but again never met him but up he stood today to address group & Like 2 above he was more impressive in person than I imagined. If you think someone on social media is interesting you can never really tell until you meet them. John exceeded my expectations 

Up next to address group was Julie Naylon newly qualified & again I loved her attitude of fully backing Heathers & Louise's patient vision because of her own experiences, chatting afterwards turns out her Doctor sister works at Maryhill health Center, small world & I look forward to following Julie's career through socail media.

I was approached by Sharon Poll a practice nurse in Liverpool with the line "you John Kinnaird" being Glaswegian my initial caution was overcome as apparently we follow each other on Twitter, the following 10 minute chat showed exactly the same passion of all those above so along with Julie I now have 2 more people to look at for examples of how the NHS can change for the better just by listening to patients.

I think along with Lorna we were 2 of a very small group of patients there today yet when I spoke to all of the above they got excited about my journey, showing genuine interest in me as a patient. I write this blog for them with the simple message

As a chronic heart failure patient believe me your patients will love you simply because you ask & listen, you all have welcoming personalities & anything myself & Lorna can do to help is no problem. I loved meeting you all today & so wish it isn't the last meeting

Well done Heather & Louise thank you for inviting us.

Praise & how I hate it

I woke up today at 6am & got up at 6:45, I got my football coaches kit on, I don't know why as it hardly improves my performance as a coach but is the done thing, I empty washing machine & hang up clothes, then refill machine. I walk Hamish the dog, then into the car to go to Maryhill to pick my nephew up.

The match kicks off at 9:10 so I pick Jordan up just after 8 then next is picking up a player Patrick in Paisley so arriving at pitch at 8:45, my team lose 5-2 & I am gutted so then it is back to Glasgow with Jordan. Dropping him off at 10:45am. I loved my time with my 16yr old nephew.

On way home I realise the 1st team are playing at pitch on my way so I pop in & stay 20 minutes longer than I should. therefore finally arriving home at 11:50.

Lorna is waiting on me for breakfast but I forgot.

Make Lorna some breakfast, Empty washing machine, hang up the washing, put more in, have a shower, iron a shirt & off to work by 12:45 which is me till 22:30.

I get home & Lorna is already asleep As not feeling good today, make my stirfry dinner, empty washing machine, hang up washing & refill washing machine. I walk Hamish & get to bed at 12:30.  

18hrs on the go 

I have a friend Isobelle at work who always tells me that myself & Lorna knacker her out just trying to keep track of our life's on Facebook, I got a message today from another heart friend on Facebook messenger on how she admires myself & Lorna enjoying life. I have an old colleague I haven't heard from in about a year message today to say "how am I & loved your cycle stuff".

But this blog isn't about me it is about Lorna, currently well into her 6th week of being housebound & extremely restricted in movement due to her back, she is slowly improving as we wait on the procedure that hopefully will finally stop the pain but just getting out of bed is still so painful for her.

My day involved everything I love, my family, football, proving doctors wrong etc etc but none of it would be possible without Lorna. I literally thought today of nothing other than what I enjoy, not one bad or worrying thought. hardly a hard life even with heart failure.

Even in such pain she runs her Internet business & it is growing, she is planning Christmas for her business & us, she organises my whole life so I just do the things I love, without her I doubt I would still be in my present Job and I dread to think where I would be. She has finally brought contentness & calmness to my life.

So when I am praised for my life as a heart patient I genuinely feel slightly embarrassed because I find it so easy due to Lorna doing all the crap organisiding & boring bits I can't be bothered with. I look back on our 7 years together and we have achieved so much together as 2 heart patients just trying to enjoy life despite the difficulties.

Touring Scotland, Olympics, Commonwealth games, End2End. the list is endless & not over yet.

I love the John & Lorna show but I just wish Lorna would blog more because she is an amazing woman living not only with heart condition but now chronic back pain but still achieving so much. I will post this now and she will be so annoyed she didn't approve or edit it before I posted it,

My day was full, very tiring but so enjoyable only because Lorna makes it that way and I can never thank her enough for everything she does for me.

The show goes on  

Winter blues

The winter is closing in fast, time to get the thermals out, flu jab has been done, Lorna has stocked up with a dozen hats & a dozen sets of gloves for me so by March I might have a pair left. Winter is without doubt a nightmare if living with heart failure. 

So what goal or goals can I set myself to keep me going? 

After a year which has contained so much it is hard to get motivated n choosing something that will occupy my thoughts as the winter slowly ebbs away my health. Snotty running noses, chesty coughs & wee cold symptoms will surely come to try and kill my fight. 

I enjoy my job and feel motivated to deliver excellent standards, hopefully get back to being organised and getting ahead in everything. I enjoy working with my wee team so as the busy Christmas periods approaches I know work will occupy a huge part of my days, weeks & months ahead but that is only half of the story.

Work will get me out of bed as it always has & I am so lucky I have it but if I let myself become lazy & unmotivated outside it then that too could suffer.

I know if I slow down my condition & it's inherent laziness could take over, my mind talk becomes full of "can't do" or "can't be bothered" so it is important I fill these cold, dark & miserable winters days with optimism. 

So I owe Lorna quality time together  hopefully with a couple of trips away around Scotland, what shall we do at new year to celebrate a brillaint year and welcome in another?  I have a trip to Poland with my 18year old to plan for February. 

Shall I do the Edinburgh New Year's Day Triathlon to keep me ticking over or is that just too selfish?

What I find interesting is as I plan to fight & overcome the oncoming winter blues I wonder what I would do if I didn't have my heart condition? I bet you I would be unprepared for winter, lazy with excuses not to exercise and at least one week off work with flu. 

After writing this blog the winter doesn't seem so bad or scary as I thought, you just have to prepare for it.

My wonderful Daughters

After being married/divorced twice and in effect having lived with a different woman every decade of my life. To say my life is complicated would be an under statement.

In total I have 5 daughters and 2 sons who I have direct long term involvement in, everyone of them I treat as my own, only because it is one of my principles of life, however Morgan & Grace are & will always be the Center of my world not because they are mine by blood but because I fully understand emotionally & legally my condition has biggest effect on them.

Morgan takes very little interest in my condition and in fact once asked me to cover my scar before swimming (which I did) I just think she blocks out what should have or could happen, I am healthy & my condition on face of it doesn't effect my life to extent she sees it, I have never actually lived with Morgan so I suppose all she has ever seen is my absolute joy & love of being with her, I will never try to dispel her belief my life is easy or straight forward to her,

Grace is different she spends all her English half terms with me in Scotland with Lorna, & Kyle now along with more and more of her summers. She talks openly about "Barry my device" and how she used to listen to my old wild heart rhythms, she wants to see & meet the people within NHS Scotland I say are so great. She has always asked me questions on my condition & treatment.

If you have read my blogs before you will realise how I feel my heart condition changed my life in a positive way despite the obvious drawbacks but the elephant in the room is and always will be they think my condition may be heredity.

As Lorna too has condition only 2 of my children from 2nd marriage are not tested regularly. Every time one is tested the deep fears come over us. It is easy to enjoy our life's because we understand how lucky we are to wake everyday so make most of it but easily our biggest fear is for our children not us.

There was absolutely no history of heart failure or sudden death in either of my or Lorna's families yet both my brothers got irregular heart rates at same age as me but due to testing unlike me no sign of dilated cardiomyopathy, their children are now regularly tested.

You would think the fact our families are tested so regularly & the advances in heart care is so great now would help ease our biggest fear but it doesn't.

So my condition has made me love & think of Morgan & Grace differently to my other children & so much more than if I didn't have heart failure, I fought to return to work to ensure financially they are forever ok, I push my physical boundaries like End2End so they have happy memorable memories of me. I plan my whole life around them so they only see the good aspects of my condition although Grace is seeing the bad bits more & more now which I absolutely hate.

When I was 1st diagnosed the thinking was woman with DCM should not have children but like so many taboos since then this has now been softened. My biggest regret of my condition is even once I am gone my DCM will haunt my daughters for ever even through their children.

So our heart failure is not just about myself & Lorna enjoying life it is now part of our families future forever & we just hope that is all it is. Hopefully we have given our children a vision of how to enjoy life without them or future generations actually really experiencing why we live the way we do.

Wonderfully shy but strong Gail

My husband and I came back from a fantastic two weeks holiday in Greece in September 2010. I hadn't been feeling well prior to the holiday and became worse whilst we were there, so I promised my husband I would go to see my GP the next day. He gave me a kiss the next morning and told me to let him know how I got on at the doctors; the next time he saw me i was in resus, plugged in to all sorts of machinery and with an oxygen mask on. His face said it all when he saw me and they explained to him that I had had a cardiac arrest upon arrival and they had had to defibrillate me. 

That was the start of the roller coaster that was to be our lives. We were told I wouldn't survive the night without a temporary pacemaker and I thought 'hang on, this is me your talking about?'  I was told I had something called dilated cardiomyopathy and heart failure. 

I had never failed at anything in my life, and I certainly wasn't going to now so I became a survivor and not a victim. I have never once said 'why me' because why shouldn't it be me. I get on with my life as normally as I possibly can. Yes, I have horrible days when I can barely get out of bed, but I don't let DCM control me, I control it. 

I have met the most wonderful heart friends and they have helped me through my darkest days and laughed with me on my good days. 

All in all life is good and I make sure I live life to the full, as much as I can.

Do I live a healthy life?

When diagnosed with heart failure immediately you review your lifestyle before doctors tell you to, would be stupid not to and for many they are told must change lifestyle dramatically. Looking back I wasn't apart from alcohol but that was quickly ruled out as a trigger for my condition.

After nearly 5 weeks of little excercise since ending my cycle I need to refocus on excercise as a means of controlling not becoming symptomatic along with general lifestyle through a winter with long periods of tiredness, fatigue or mind fog looming. Have noticed more mornings struggling to get out of bed & become active.

So after 15 days of cycling, 5 weeks on I feel bloated & unfit with winter approaching. Meaning as a heart failure patient time to review my life style.

Use it or lose it - I need to excercise and as much I enjoy swimming it isn't active enough so I know I need to cycle home once or twice a week , in total I must excercise 4 or 5 times a week for between 1 or 2 hours. I don't mind saying my head is finding excuse after excuse not to excercise but in reality the only barrier is me & my mind.

Eating - I actually don't eat that much unhealthy food, Lorna cooks healthily for us but I do eat a vast amount when I do eat, I lost nearly 4 stone with my John O'Groats to lands end cycle so need to keep it off, I will look to 3 meals a day with smaller amounts. Again I think I use my tablets/device as an excuse. Clearly they dont help but eating amount is the issue even if healthy.

Weather- I will have my flu Jab but I can't remember the last time I was actually wiped out by a virus but the cold does drag me down slowly over time. I definitely think Lorna & I need to plan in winter sun to brake the constant cold dragging us down, in retirement long winter sun breaks will be a must that isn't feasible presently. I would say the weather is biggest impact on my condition & general well being.

Drink pure- haha the ultimate heart failure question so Yes I drink at least 1.5ltrs of water a day but that isn't the drink that causes the biggest debate. I am a alcohol binge drinker & would scare people with how much I can drink in one binge quickly.. So if asking if I live healthily the above 3 before Drink pure show I do to a high level but I fully accept it is wiped out by drinking even if only 3 times a months but I don't care, we enjoy it. I will never give it up or hide it from fellow patients.

So the biggest thing facing a heart patient is you could do 95% of how to live well and it wouldn't matter unless you did it 100%, I know some do & that is their choice but I can't or ever will be 100% committed to living healthily. I enjoy life, food & Lorna's cooking too much,

I enjoy getting very drunk so I have to admit I don't overall live that healthily as a heart patient  but I am happy with the balance I strike which has served me well Up to now.

John

A patients mother's view

Now that 4 patients have added blogs to highlight the issues facing us and the positive futures those patients believe they can have, I got this message from Julie who runs the Cheshire cardiomyopathyUk support group.

I finally met Julie and her DCM patient daughter Jenny during my cycle & they both highlight what a wonderful journey my life is now.

Julie strives to support patients, raise funds and awareness with Jenny pushing ahead with university education trying to live a full & normal life hopefully both will add blogs in future.

I wanted to post this message to highlight more positivity from different angles to just patients.

Julie 

"I have been busy too with our support group and have actually had consultants emailing me offering to come and give talks to our group. Got me thinking about how actually our doctors are encouraging and supporting our efforts to find out accurate information about the condition and would actually rather have patients who take control and give them real feed back. 

Donna being invited to give a patient perspective is exactly what Jenny has been asked to do at a nursing conference in London next month. Doctors are listening right now - they want to know the reality and they are looking hard at providing the not just the right medications but the right support too. I have hope for the future."

Thank you Julie

Claire's story

So, John has asked me to do a blog about my life with heart failure….my initial thoughts were ‘what do I put’?? / ‘I don’t like talking about myself’…..

 

Well, for starters, I can tell you….failure is not an option for me!!

I was diagnosed at 28, and was placed on the transplant list….there was no way at 28, with 3 gorgeous boys (1 of which was ONE day old at the time I was told) that I was having that transplant….at that point, my outlook was ‘this will not control me, it will not dictate how I run my life, and it certainly won’t take me from my kids….I can’t change what’s happened, it just has, accept it, deal with it and get on with it…if you have to pop a few tablets every day to enjoy bringing up your gorgeous boys Claire - then sobeit’….to this day, I still have that positive outlook….

Don’t get me wrong, I do suffer, and I do have to listen to my body….but, I have a new friend to help me through, my ‘Percy the Pacemaker’….we are relatively new ‘friends’, but he has given me a new outlook….now is MY time….2 of my boys are now young men with their own lives, and my 10 year old will soon be going to high school and making new friends etc, thus not needing mum as much….so, Claire – do what YOU want now!!  So I have taken the plunge, and am beginning to fulfil my career….I am only 38, so young enough to build a ‘career’….so I have just registered to sit my mortgage advising exams….a 12 month gruelling study and exam process, but I am ready and I will NOT let heart failure stop my ambition….

A Patients knowledge

I continually ask those on my journey to contribute to my blog & all say the same things when I ask

1. Never done it before

2. Don't know what to write about

3. What shall I write about?

But once they have done it like Donna below they all say how easy it was and "is it ok?" if I have asked you to do a blog for me it is because I feel somebody like myself loves to read how others cope & if you look you have something we patients can take from it. Donna added she enjoyed it as most do.

Donna

I never thought that I would ever be asked to do something like speak to medical students about a heart condition but I did just that on Thursday 15^th October. I arrived at the health centre and was shouted into the Gp’s surgery where I was met with the gp and 3 3^rd year medical students. 

I was introduced to them and asked if I would tell them my hf journey, how I was diagnosed and how it has changed my life. At first I thought they are 3^rd years they will know everything there is to know about hf but as I started to tell them about my diagnosis and hf I realised that actually they didn’t know a lot about it. 

After telling them about my diagnosis and how the hf has changed me that I   have  became the “new me”.  I felt really good and found that I do know more about hf than I thought. I was glad that I was asked to do this and was really surprised at how interested the medical students were about the subject of heart failure. If I was asked to do it again would I? yes I think I would

John

When I read this I really enjoyed it as showed so much about how patients are changing, becoming more aware through not medical people but fellow patients probably through social media and their own research, what I also think it shows is Donna's need for confidence & belief she knows more about her condition than anybody, it is her heart failure, her life. Her choices. She is capable of explaining her condition in detail but not I suspect to challenge yet what doctors tell her.

My doctors I believe never tell me but rather I take their advice and tweak/challenge it to see how it fits into my life and I know Lorna does too, My doctors are probably the biggest difference to how others are treated because they have always engaged with me and talks like Donna's hopefully will show the latest generation of NHS workers coming through it is a partnership, 2 way and not dictatorship. 

Hopefully Donna will do another soon.

A Journey

I am keen on quotes and positive images so much to the extent that they annoy Lorna at times, I read up on positive thinking so much that they all now basically say the same but just in a different way. My favourite is the one about your inner chimp V your inner human and I can tell you my inner chump is a raving loony and my life is littered with times my chimp sadly won.

Before diagnose the one life term I never fully understood was the term "on a journey" it sounded like some sort of hippy thinking but in reality my life before diagnose looking back was a sequence of wonderful times with no real goal or point, I lived a very charmed life that after every disaster I somehow recovered to something better. I know I am lucky for my recover from those 1st days unable to walk down corridor at hospital.

I was the most selfish person who has always been somehow well loved but I probably hurt everybody close to me at some point but was mostly always forgiven by those closest to me so if I had died as stastically at that time I should have I have no illusions to how I would have Been described by those I left behind. 

So then the Journey starts, at the start you look around you to those who message & visit you in hospital because they care & you think why do they love me so much, you are told the bad news of how your life will change & you deny it as some sort of mistake. You think if you died last week what have you left behind. At that point you decide if your life is a bus crash is it a write off or just minor damage.

I love the idea of the my life now being like a bus journey, many get on and many get off, you stop at the stops where you wonder who is getting on & off now, have they been the interesting lovely passenger or the annoying loud drunken smelly one, ultimately as driver I get to choose who stays on this bus. you reach the terminus (goal) and you just start again on another bus journey, As driver you can decide to go on same road or take your bus on a magical mystery tour.

Every so often my bus goes off the road due to breakdown, for routine maintaince or maybe full MOT but so far it has always got back on the road.

I drive a very full bus that has done a lot of miles, it is old & bettered but an engine that somehow keeps going but I will drive this bus at full speed until the engine gives up.

What i find amazing is it took my diagnose to realise life is basically a journey & despite knowing about "on a journey" I just didn't get it. This blog makes perfect sense to me but maybe only me, if you are on my bus I try to tell you often what you as a passenger mean to me. My bus journey will end one day but what s journey it has been & nobody who made this journey special will not know that.

The journey continues and where will my bus stop next and who is getting on & off

Charity work

As I finalise my total money raised from my John O'Groats to Lands end cycle which is to be split between Oliver & his family along with Pumping Marvellous who have been such a huge part of my heart journey.  I have taken time to reflect on what I learned about raising money for charities & charity work in general.

Looking back I wish I had only raised money for either pumping Marvellous or Oliver & his family to send them on a holiday. Now after expenses We should have around £600 for each. It would have made it easier if I used Justgiving for one cause & not Gofundme as I ended up raising over £1400 for expenses especially hotels & fuel from mainly Barclay medical practice so in total I raised over £3000. Not bad considering I announced it 3 weeks before but will never do it that way again.

So as I look forward I have taken decision to continue raising money for Oliver with my final event for him being the great Scottish swim where I will swim 5k in Loch Lomand, hopefully before that I can have bag pack at work and maybe some other fundraisers.

However I realise that I don't do as much charity work as I should. Not because I don't want to but is strange having a chronic illness and being able to raise awareness of it by continuing working & physical achievements that actually leaves little time to be more active within a charity.

On Monday at work I thanked my fellow managers for support and singled out Jayne for her effort, she sat quietly behind me saying nothing. I asked Jayne today how much she had raised as store charity person and she had no idea but i tell you a lot more than I have for mine.

Julie from cardiomyopathUk posted this week about a local child minding charity her family had supported for 20 yrs that had been took over so the elderly founders surprised her with donation to her choice charity because of that superb support.

Sam at Pumping Marvellous who no doubt will tell me off for writing this but I see how heart failure effects her but she still drives herself to produce awesome images for awareness including my End2End stuff.

What these 3 have in common is they do charity not for Ego, publicity or because they want something back, they do it because they care for people.i am so amazed at their efforts not only to do what they do but be so shy about being thanked for doing it.

I so get the joke now "don't like to talk about my charity work" because so many & probably large majority do but In my opinion do it for something other than kindness. I might even count myself in this if being honest.

So I joined community charity group at work, I will do small traditional events to raise money for Oliver with Jayne's input no doubt Hopefully my exploits open new contacts to promote these events.

I still want more to know that heart failure isn't the end, I want to contact & collate more stories from around the world who show & back that belief up. I am inspired by them & others so I just want to give something back but not from the front because Lorna & my life doesn't need it or could cope with it but we care for others but not in the way Jayne, Julie & Sam above do, I definitely am too selfish.

So finally  I like doing charity work & will continue but I don't like to talk about it.

     

Doctor Nick Goodfield

I have described before my visits to my Cardiologist Nick Goodfield, who acknowledges his own extreme weight easily, I find he has an unique different style of his own like most good medical people, in 8 years I have found no nurse or health service worker who doesn't like him or talk highly of him. Of course he has an ego and arrogance which in some cardiologist  I find annoying but in me he  has proved that he can back it up with success in someone another Cardiolugist didn't write off but forecast a not too bright future.

Lorna has been with me for almost all of my meetings with him and she understands it so much better than me, she is the one who has asked the questions, she is the one who told him that forget my "am ok" to every question & told him the truth.

I liked him the 1st time I met him and some of his comments are with me all the time and core to my desire to make the most of life despite my heart failure.

On my insurance company trying to not pay my critical illness insurance after diagnose  "really just leave that to me I will sort them out" a month later they paid out.

How long will I live?. "No idea look at me you will probably out live me"

Can I come off my Drugs "well you could but if stay on them you will probably die suddenly but off them it could be long & slow decline, know which one I would choose"

What are options if this doesn't work, "straight to transplant"

Can I return to work? "Only you know how you feel, you want to return I will say you can return"

"I find heart patients fall into 2 groups those that don't do anything and those that do too much, never seen anybody get it right"

On my swimming, cycling & Running training "all good just don't do them together" I had just completed London triathlon.

I don't have a relationship as such with him, I know nothing of his life, he asks I answer, I ask he sometimes ignores me as he studies my file but last week when visiting my dad in unit next to Stobhill I popped up to leave a note for him at his receptiost

"8 years ago my 1st cardiogist told me lucky if I return to work or excercised in any real way. On Saturday I finished in 14 days John O'Groats to lands end cycle, thank you for everything you have been amazing"

When I walked in to see him yesterday for my echo he asked had I recovered & thank you for note. He had a trainee with him and I so wish Lorna was with me to listen, he knew my story in detail, he spoke of the reasoning behind his rather unique decisions on me. I understand now how Frankenstein loved his creator, this man had given me an amazing 8 years and I could never thank him enough.

I so want to ask him for selfie with him for blog but I am scared to like a child to a parent so I don't. I love the NHS it is without doubt the greatest health service in the world but so much of your care comes down to luck, meeting the right people at right time, 

In every aspect of my life I look round and see how lucky I have been, Lorna, my GP,  my Cardiolugist to my current manager at work. I have been so lucky and I so understand that, yes I have fought this condition every day but I haven't done it alone I wouldnt have achieved anything without people like Dr goodfield. 

Everyday

I was reminded this week of the changes my condition brought to my personality & life, as always a mixture of good & bad.

"You either let cardiomyopathy rule your life or you rule it" is a phrase I have heard many times but which one am I?

It is not easy to describe how my condition has changed my personality, like everything to do with my condition. People simply cannot see it. I am more emotional which is a good thing, I react to situations in stupid non rational ways, I get paranoid, I let things eat away at me. I want to care about things but the questions that swirls round my head is "did you live for this shit" "is it worth it" obviously not good.

After 8 years I have learned to hide it even more &  I deal with it better internally, The low points don't happen more often now but I am getting tired of them, I am getting tired of having to balance my thinking out, I am tired of putting myself in situations that cause reactions. I am tired of doing things that no longer matter to me no matter how important they have been the last 8 years.

Life must have a point or what is point of living?

8 years ago I didn't think I would celebrate my 48th birthday I honestly didn't so I didn't plan this far ahead.

So here I am at about to celebrate my 48th birthday so what do I do now? I actually believe I may live for longer than I truly expected so how do I find the new point of living?

I will find it because I need to find it, I have too much good around me with Lorna, family & friends who again showed during my last adventure how lucky I am, in them I find it because they are at root of everything.

So surpringly I must declare cardiomyopathy does control my life because the irony is 8 years ago I didn't  think I would see my 48th birthday but as I plan my longer future maybe I won't see my 49th. I can't control that. 

But it will be another good year I can control & guarantee you that.