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