Kyles blog-what its like to live with heart failure patients part7

Hey guys I'm back for a Tuesday night blog I am currently ill so won't be doing to much blogs and today I went to doctors and I feel very weak so don't get up on me on my spelling

Appointments & my love of NHS

Appointments & my love of NHS

It has been probably 3 years since my last appointment with Dr Goodfield, he told me he wouldn't discharge me from his care but only to call him if I needed to see him. It is testimony to his care that I haven't needed him until now.

From start with him he understood I was young in heart failure terms so could be his patient for long time. I was extremely active & he set out to give me a quality of life I will always be grateful for. He genuinely asked what I wanted & like all great doctors he is unique in his style & over worked. I  know he uses me to enhance his ideas & thoughts but I trust him with my life. I could tell so many stories of our appointments and his honest no nonsense comments & quotes. I once asked why do I take drugs that in reality post AV node ablation I potentially don't need. His reply “the truth is we don't know whether you still need them or not but your doing well as you are so we’ll just leave you taking them rather than risk stopping them and seeing a deterioration’.

Stobhill has a system where you go through 3 waiting rooms before reaching Dr Goodfield.  I assume this is call Centre style patient management so wait doesn't seem so long but in reality my appointments here are at least an hour behind but as an experienced patient I come prepared for the long haul amazed so many don't. Then they  just sit there looking at 4 walls or worse moan. I could slap the moaners dissing this great free service.

Just been in to see the great man. I fully understand now how he works so follows usual pattern, tell him your issues then say nothing,  he makes notes in his untidy handwriting and you can see his mind working overtime, he pauses to ask question then straight back to notes, finally he tells me, this will take longer than today especially for device bits as he needs tech girls here to help him, sends me for treadmill test now to see response rate on device & I have to go back in after it. Looks like drug change also which I always struggle with initially.

The treadmill test is surprisingly a rare event for me and this will be only my 2nd time on it, the last time was post device implant where they found out they hadn't actually switched on device response at implant, just another funny moment on this journey. I find it So funny & not annoyed that Somebody forgot to switch on rate response on my device during op

It is strange being on treadmill as I struggle to walk at pace at anytime, give me a triathlon and I feel great as I slowly build heart rate up to maximum 130 then I can go on for hours  but here I am being asked to walk faster and faster and quickly I feel my leg strength sap and become uncomfortable I so want to start jogging but that is not part of test. It lasts less than 5 mins & I feel I have failed.

So back in to see Dr Goodfield for what next, device is doing everything it should in terms of rate response so looks like will go full battery term, my blood pressure unusually is too high so may need monitoring. He will look to optimise my device again as wont do any harm, biggest thing he will consider is changing my drugs which I hate, as always with him I feel he is taking the time to consider my options, no quick solutions and hurry me off, He says this needs investigating.

One week has passed and already I have 24hr monitor for blood pressure which strangely I detest, I find it annoying yet feel silly considering the intrusive treatments I have had as part of this journey this is one that truly annoys me.

I do a bit of research on what high blood pressure means and if I do indeed have high blood pressure then how the hell do I get more active, eat more veg/fruit  and take tablets to avoid it, I do all 3 in rather high dosages already & my salt in take is minimal.

I let my mind wonder to possible outcomes but then realise I have a great cardiologist who works within a Scottish & especially Glasgow NHS seen as world leading in heart failure so I just say leave it to them & him, he hasn't been wrong so far and he will sort this as my confidence in the NHS & Dr Goodfield is full. I hear the horror stories of the NHS but I can have nothing but praise for them from the wonderful receptionists & nurses up. I am an NHS success story and I owe them so much & I will repay them by ensuring I enjoy this life so in my next blog I hope to have some exciting news.

The countdown continues

Why End to end

End to End

So I have announced on social media that I will cycle John O’Groats to lands end as my next goal, it has been in planning for over a year but have waited till 6 weeks before for the obvious reason of will my current health allow it? So of course I think it will.

Why attempt it? Simply because I believe I can do it and long held the ambition to do even before diagnosis but to me it seems a logical end to the last 8 years of working out what I am capable of both physically & mentally. I fully understand my heart failure body & mind now & how it works but feel that could change once device (Barry the box) is changed. Of course I have doubts but who wouldn't?

What I simply want to do is show heart failure can be tackled by all to achieve something & anything. I want to thank and show all those around me be it my family, friends & medical staff that I have loved  their support but most of all as someone fully aware of how quickly life can change or end I want to leave memories that maybe make those closest to me proud of me & I want to raise awareness that not all heart failure is negative.

I look at baby Olivier who I will fundraise for and I see a family living in an amazing world of medical advancement like I am but I had a life before DCM & Oliver hasn't so I want to simply try to give him & his family a good memory of maybe a holiday as I know such positive things to look forward to & memories are key to positively living with a chronic illness.

I have read so much about how to train for this but I simply cannot train for 6 months for something as my body won't allow it. what I can do is intensely train for 2 months & use my already gained stamina to meet the physical demands knowing full well post completion like it always is will be hard but more psychologically than physically.

I have spoken to those medically around me & I fully except they can't endorse me to do it 

but they know the whole story and the ups & down so none have or will say don't.” Don't” is not a word I have ever heard them say to me as I think about it. If I believed “don't” in every booklet about heart failure where would I be? 

My work & especially boss have again been supportive & understanding. A key lesson from the last 8 years has been probably how I have maybe not handled this area well but without them this would not be possible hopefully together we are both learning  how someone with heart failure can return to work with something medically was maybe not possible even the year before. I still see the confusion in some of thinking “how hard is it to live with heart failure if he can do this?” That is view we need to change.

My best friend always said “if going to be a bear be a grizzly” so my final goal of Barry the box needs to follow that saying. I know many will question my thinking & risk taking  but as explained in earlier blogs of course I am scared, of course I am struggling to get the training in and suffer set backs but as Lorna & I say “ok I want to do this so how do we make it happen?” So by announcing it I have committed to making it happen & it will happen!

Need to go am off for cycle.

Edinburgh sprint triathlon

I have never been a great trainer during the cold winter months but idea of a new years day Edinburgh sprint triathlon at commonwealth pool & round Arthur's seat was too tempting. So yesterday I done race route, the cycle had 3 very steep hill climbs which played negatively on my mind especially the 3rd one, yet on reflection physically I had no big issues, my legs felt strong & breathing steady. The run was mostly a walk but again feel I could have done more, breathing was OK & again felt strong. Overall considering the conditions I encountered are exactly ones that my DCM struggled to previously deal with I think physically I am on right track but this is so more about mind set & belief. I wake following morning with no aches or pains but just being careful by lying in bed before work. One worry was after all done the stairs at changing rooms at commonwealth pool caused me to feel physically tired,weak & dizzy, think it may be down to not having fluid during training but again just a time reminder of the need to be very careful.

Bad days

Worked nights for 2 days early part of this week so sleep all over place & low & behold get cold symptoms.

Was really looking forward to 14+ mile cycle today after 1 mile swim Monday but don't think I sensibly can.

So despite really wanting to go I know I can't or shouldn't risk it so another part of obstacles facing me especially in winters raises it head. 

The barriers - Cycling

All 3 of the events bring very different issues to how i train and how i compete in events so today i completed a 14 mile cycle and these are the issues i have to consider. Climate- it is raining at times with a cold wind so with thin blood by taking warfiran i feel tempertures of hot and cold in extremes so today concern is cold but if put on too many layers i find the sweat becomes cold & held in,making the cycle miserable.i have still to find a hot tempperature i cannot perform in. Start - no matter how fit i feel the 1st 10 minutes are always a struggle as device and therfore body find a consistent level, what i do find is because my heart rate will not go above 130 beats a minute i have no upper level despite feeling strong the effort just doesnt result in improved times. Distance- after cycling for 20 minutes i normally can tell if today is a good day or a write off, today felt disapointted due to time restraint only done 14miles. of all 3 discplines i find cycling the least effected by bad days. Today the cycle was good, i enjoy cycling on spin bike in gym but it just doesnt match a weekly long distance training ride so need to really review all of the above closely this winter if to achieve 26miles target as part of olympic distance

Benefits & goals

I am now 46, when diagnosed aged 40 I had just completed my 1st Olympic distance triathlon since college & taken up football refereeing so was very active. In the initial days in hospital after diagnosis "dr doom" spouted the negative but dated side of what DCM meant to me, no physical exercise, possible heart transplant, 5 years etc etc.

It is here I had my 1st piece of luck as i had never been fitter so I was able to fight the physical and initial drug side effects barriers, my work allowed me 14 weeks full sick pay & i was able to transfer to Scotland. I returned to Glasgow from Cornwall to live with my parents. A city full of excellent heart doctors & fitness opportunities.

I was in denial of what DCM & Atrial fibrillation actual meant so I continued  to train basically full time with swimming, cycling & walking most days Luckily I had the base of stamina to help me over the last 7 years.

Exercise strengthens my heart, it has a deep physiological positive impact on me, it allows me to fight off tiredness & fatigue more than my fellow DCM friends so able to lead fairly active life.

As I approach my 46th birthday something has changed, I done 2 sprint triathlons this year but training is harder, I am carrying too much weight due to the medication and so new barriers to overcome if to complete a Olympic triathlon distance next year, Maybe or hopefully it is just middle age but I will do a Olympic distance comfortably next year, that is my goal and this blog is part of helping achieve that goal.