Support from readers like you keeps The Journal open.
You are visiting us because we have something you value. Independent, unbiased news that tells the truth. Advertising revenue goes some way to support our mission, but this year it has not been enough.
If you've seen value in our reporting, please contribute what you can, so we can continue to produce accurate and meaningful journalism. For everyone who needs it.
Man deported from Ireland on Nigeria flight earlier this year wins appeal to return
President Higgins backs Mary Robinson’s comments warning governments of ‘complicity’ in genocide
Gardaí launch investigation after feud-related violence breaks out in rural Limerick pub
Marc O'Sullivan
column
My life with heart failure Cramps, pain, palpitations - then the wait for a transplant
Andy Roche has been on the active waiting list for a heart transplant since June 2015. He writes here about coming to terms with over a decade of health challenges.
IT WAS EARLY 2003 when the penny finally dropped that my underlying health needed a serious examination. A positive attitude is a great thing when you are coping with illness but in my case, and my story here is not unique, this positive attitude had morphed into denial.
For many months, probably from mid-2002 onwards, I was experiencing severe cramping and abdominal pain particularly after eating. In spite of my wife’s exhortations to have it all investigated I was toying with various diet adjustments and confining myself to rice as a staple – a variation on baby food if the truth were told.
A good friend of mine who is a gastroenterology consultant at Tallaght Hospital brought me in to have a look from that perspective. He very quickly concluded I had been kidding myself and that my problems were driven by fluid accumulation. From there the real journey started. A cardiologist arrived and talked over my head to a nurse and left.
Shortly afterwards, one of his junior colleagues arrived. “Take these,” I was told. “What are they?” I asked.
Diuretics, you need to take them – you have heart failure.
“What’s that?” It was duly explained as a malfunction, in my case, of heart pumping capacity which was reducing my capacity to pump blood from the left side of my heart and this was the underlying cause of fluid retention – hence weight gain and all the cramping I described. Not the ideal way to have the news broken.
My reaction was combative and there followed an exchange where I asserted “failure” was a daft label for it. But I took the tablets anyway and after an aggressive course of these I lost almost 10 kilos of fluid and negotiated my discharge.
Entering the next stage
Some time coming into the summer of 2003, we entered the next phase. I had my first encounter with Atrial flutter – palpitations, shortness of breath – which was addressed with a cardioversion procedure. That held for about a year until I got another “wobble” – this time cardio arrhythmia, irregular heartbeat.
I arrived at St Vincent’s Hospital this time by ambulance and met cardiologist Martin Quinn for the first time. Martin has performed a number of cardioversions over the years, with interventions for ablation procedures by David Keane – and I doubt if there is a better team than these guys anywhere.
They have given me a manageable quality of personal and business life over all the years, and they are willing to explain what they are doing. I am one of the lucky ones here.
If the story could end there, that would be great. Unfortunately, this condition is progressive and is now in its “end stage”.
In between the various cardioversion and ablation procedures, I did enjoy a decent quality of life with medication support and a bit of self-management. However, the gaps required between procedures began to shorten and the quality of interim recovery began to diminish.
Advertisement
I likened it to snakes and ladders where the snakes were getting longer, the ladders shorter and the gaps between them were reducing. Options were tried with a pacemaker which did not deliver the outcome hoped for – a major contributor here was my underlying intolerance of beta blockers.
End game
At end of 2014 I presented to Martin Quinn in a bucket – “hands up, I am losing here”. Martin brought me into hospital for review. He did some things with IV diuretics but didn’t get the outcome needed. He then introduced me Prof Ken McDonald who said “Hmmmm” – a worrying sound from a consultant.
I was brought back into hospital for an IV procedure with a magic potion called Levosimendan. Shortly after this. I was looking for someone to play a game of hurling with.
Full of the joys, I duly went back for my review meeting with Prof a couple weeks later. When I had finished thanking him profusely, he said we needed to discuss the longer term.
This procedure would not deliver indefinitely and I was an ideal candidate for a heart transplant, I was told. My heart withstood that shock and the research started. It didn’t take me long to conclude in the words of my GP who is also a good friend: “It’s a no brainer, Andy.”
So here we are. I have been on the active waiting list for transplant since June 2015. I believe I am one of the very lucky ones and I am not sure everyone in my circumstance would have as upbeat a story or as ready access to top class professionals as I have enjoyed.
I have tried to keep a focus of “business as usual” during the waiting time. To be honest, though, the year has not been kind to me in terms of health and my cardio performance has deteriorated. I have a seriously curtailed social life and I manage to do a couple of days a week of freelance business consultancy, which has become increasingly tiring.
What keeps me going? Family and the support of friends who keep in touch. This can’t be said without sounding clichéd, but I have support from my wife of 38 years that just can’t be described adequately in words.
We live in Dublin where our daughter also lives and works and our son, his wife and our three beautiful grandchildren are only a few hours away in Northern Ireland. I don’t know where I’d be without their support and humour.
Andy Roche is a business consultant from Dublin.
The Heart Failure Patient Alliance, a new support for patients living with heart failure and their families, will be officially launched in Dublin by sport pundit and former GAA footballer Pat Spillane on 15 April and in Galway on 16 April.
The alliance is an initiative by the Heartbeat Trust and Croí charities, and supported by pharmaceutical company Novartis.
To register your attendance for Dublin, call 083 465 6098 or email info@heartbeat-trust.org. For Galway, call 091 5443100 or book online at www.croi.ie/heartfailure. Attendance is free.
Readers like you are keeping these stories free for everyone...
A mix of advertising and supporting contributions helps keep paywalls away from valuable information like this article.
Over 5,000 readers like you have already stepped up and support us with a monthly payment or a once-off donation.
Hats off too you Andy, maintaining a postive and progressive attitude whilsts suffering like this says a lot about you. I suppose this article also raises awareness of the need for organ donation here. I get all those palpitations, flutters a lot myself. Tried to have it investigated several times but it comes back clear and Ive given up trying to get an answer at this stage!
Have to agree regarding having a good mental attitude and also a sense of humor in a situation like this is vital. I sincerely wish Andy well and hope he gets a transplant.
Diagnosed with heart failure just over a year now, medication and new pacemaker are helping, I asked my cardiologist if I could push things exercise wise, he said I would be OK as I had the defibrillator inserted so if I get a heart attack I’ll be ok. Thing is I don’t have that inserted and he had to check his records to confirm I hadn’t, he then said I’d be ok anyway! I’ve been a long time suffering poor health and been in the public system for 35 years and I’ve seen some scary stuff from consultants
People living with HEART FAILURE have a hell of a monthly price to pay for prescription costs and no one says a word about that, some can have 3 pages full of prescriptions to give the chemist per month, it can be crazy and then the bill?
Then you heart about those who were self employed and not entitled to social welfare and a medical card, medication for them is that expensive they buy it across the boarder where it can be cheaper. The whole system is crazy, these people who are entitled to nothing and having to buy medications to stay alive, there is something wrong somewhere here…
Very good article. We hear lots from transplantees after receiving an organ transplant. So it’s Interesting to hear a story from someone before surgery….. in fact it’s scary for those patients on the waiting list. Well done Andy for this unique insight.
A family friend shared a story about his mother who died recently on the table getting her pacemaker replaced, she was dead as they were replacing the pacemaker on her and they kept working at replacing it as she laid dead.
Those with heart trouble are told to get health insurance but when you go to get consultation done then you have to pay them before you can see them with the excuse that you will get the money back from the insurers which never happens…
Smokers, being over weight and drinkers get the most heart problems but the fact is you do not have to be all or any of those 3 things to suffer heart problems either. Alcohol damages the heart muscle and raises blood pressure and some people are that addicted to it that they can’t do without it, the same with cigs as well but cigs damages the lining of the arteries and breathing in CO2 is not good for you either…
Anyone can get any disease and seemingly fate can be cruel that way, you don’t need any excuse but sometimes some people put themselves in danger due to lifestyle choices. It does make you think for the grace of God go I?
Best of luck yo u Andy and also Claire .keeping u in our thoughts at this time and hopefully will catch up on the river or some HBA trip. If u need barge looked after anytime give us a shout we can go and keep it warm and cosy for ye xxx
Man deported from Ireland on Nigeria flight earlier this year wins appeal to return
Eoghan Dalton
1 hr ago
4.5k
Gaza
President Higgins backs Mary Robinson’s comments warning governments of ‘complicity’ in genocide
1 hr ago
964
Rathkeale
Gardaí launch investigation after feud-related violence breaks out in rural Limerick pub
Updated
23 hrs ago
33.4k
Your Cookies. Your Choice.
Cookies help provide our news service while also enabling the advertising needed to fund this work.
We categorise cookies as Necessary, Performance (used to analyse the site performance) and Targeting (used to target advertising which helps us keep this service free).
We and our 220 partners store and access personal data, like browsing data or unique identifiers, on your device. Selecting Accept All enables tracking technologies to support the purposes shown under we and our partners process data to provide. If trackers are disabled, some content and ads you see may not be as relevant to you. You can resurface this menu to change your choices or withdraw consent at any time by clicking the Cookie Preferences link on the bottom of the webpage . Your choices will have effect within our Website. For more details, refer to our Privacy Policy.
We and our vendors process data for the following purposes:
Use precise geolocation data. Actively scan device characteristics for identification. Store and/or access information on a device. Personalised advertising and content, advertising and content measurement, audience research and services development.
Cookies Preference Centre
We process your data to deliver content or advertisements and measure the delivery of such content or advertisements to extract insights about our website. We share this information with our partners on the basis of consent. You may exercise your right to consent, based on a specific purpose below or at a partner level in the link under each purpose. Some vendors may process your data based on their legitimate interests, which does not require your consent. You cannot object to tracking technologies placed to ensure security, prevent fraud, fix errors, or deliver and present advertising and content, and precise geolocation data and active scanning of device characteristics for identification may be used to support this purpose. This exception does not apply to targeted advertising. These choices will be signaled to our vendors participating in the Transparency and Consent Framework. The choices you make regarding the purposes and vendors listed in this notice are saved and stored locally on your device for a maximum duration of 1 year.
Manage Consent Preferences
Necessary Cookies
Always Active
These cookies are necessary for the website to function and cannot be switched off in our systems. They are usually only set in response to actions made by you which amount to a request for services, such as setting your privacy preferences, logging in or filling in forms. You can set your browser to block or alert you about these cookies, but some parts of the site will not then work.
Social Media Cookies
These cookies are set by a range of social media services that we have added to the site to enable you to share our content with your friends and networks. They are capable of tracking your browser across other sites and building up a profile of your interests. This may impact the content and messages you see on other websites you visit. If you do not allow these cookies you may not be able to use or see these sharing tools.
Targeting Cookies
These cookies may be set through our site by our advertising partners. They may be used by those companies to build a profile of your interests and show you relevant adverts on other sites. They do not store directly personal information, but are based on uniquely identifying your browser and internet device. If you do not allow these cookies, you will experience less targeted advertising.
Functional Cookies
These cookies enable the website to provide enhanced functionality and personalisation. They may be set by us or by third party providers whose services we have added to our pages. If you do not allow these cookies then these services may not function properly.
Performance Cookies
These cookies allow us to count visits and traffic sources so we can measure and improve the performance of our site. They help us to know which pages are the most and least popular and see how visitors move around the site. All information these cookies collect is aggregated and therefore anonymous. If you do not allow these cookies we will not be able to monitor our performance.
Store and/or access information on a device 154 partners can use this purpose
Cookies, device or similar online identifiers (e.g. login-based identifiers, randomly assigned identifiers, network based identifiers) together with other information (e.g. browser type and information, language, screen size, supported technologies etc.) can be stored or read on your device to recognise it each time it connects to an app or to a website, for one or several of the purposes presented here.
Personalised advertising and content, advertising and content measurement, audience research and services development 201 partners can use this purpose
Use limited data to select advertising 163 partners can use this purpose
Advertising presented to you on this service can be based on limited data, such as the website or app you are using, your non-precise location, your device type or which content you are (or have been) interacting with (for example, to limit the number of times an ad is presented to you).
Create profiles for personalised advertising 124 partners can use this purpose
Information about your activity on this service (such as forms you submit, content you look at) can be stored and combined with other information about you (for example, information from your previous activity on this service and other websites or apps) or similar users. This is then used to build or improve a profile about you (that might include possible interests and personal aspects). Your profile can be used (also later) to present advertising that appears more relevant based on your possible interests by this and other entities.
Use profiles to select personalised advertising 125 partners can use this purpose
Advertising presented to you on this service can be based on your advertising profiles, which can reflect your activity on this service or other websites or apps (like the forms you submit, content you look at), possible interests and personal aspects.
Create profiles to personalise content 52 partners can use this purpose
Information about your activity on this service (for instance, forms you submit, non-advertising content you look at) can be stored and combined with other information about you (such as your previous activity on this service or other websites or apps) or similar users. This is then used to build or improve a profile about you (which might for example include possible interests and personal aspects). Your profile can be used (also later) to present content that appears more relevant based on your possible interests, such as by adapting the order in which content is shown to you, so that it is even easier for you to find content that matches your interests.
Use profiles to select personalised content 49 partners can use this purpose
Content presented to you on this service can be based on your content personalisation profiles, which can reflect your activity on this or other services (for instance, the forms you submit, content you look at), possible interests and personal aspects. This can for example be used to adapt the order in which content is shown to you, so that it is even easier for you to find (non-advertising) content that matches your interests.
Measure advertising performance 181 partners can use this purpose
Information regarding which advertising is presented to you and how you interact with it can be used to determine how well an advert has worked for you or other users and whether the goals of the advertising were reached. For instance, whether you saw an ad, whether you clicked on it, whether it led you to buy a product or visit a website, etc. This is very helpful to understand the relevance of advertising campaigns.
Measure content performance 79 partners can use this purpose
Information regarding which content is presented to you and how you interact with it can be used to determine whether the (non-advertising) content e.g. reached its intended audience and matched your interests. For instance, whether you read an article, watch a video, listen to a podcast or look at a product description, how long you spent on this service and the web pages you visit etc. This is very helpful to understand the relevance of (non-advertising) content that is shown to you.
Understand audiences through statistics or combinations of data from different sources 113 partners can use this purpose
Reports can be generated based on the combination of data sets (like user profiles, statistics, market research, analytics data) regarding your interactions and those of other users with advertising or (non-advertising) content to identify common characteristics (for instance, to determine which target audiences are more receptive to an ad campaign or to certain contents).
Develop and improve services 119 partners can use this purpose
Information about your activity on this service, such as your interaction with ads or content, can be very helpful to improve products and services and to build new products and services based on user interactions, the type of audience, etc. This specific purpose does not include the development or improvement of user profiles and identifiers.
Use limited data to select content 52 partners can use this purpose
Content presented to you on this service can be based on limited data, such as the website or app you are using, your non-precise location, your device type, or which content you are (or have been) interacting with (for example, to limit the number of times a video or an article is presented to you).
Use precise geolocation data 67 partners can use this special feature
With your acceptance, your precise location (within a radius of less than 500 metres) may be used in support of the purposes explained in this notice.
Actively scan device characteristics for identification 38 partners can use this special feature
With your acceptance, certain characteristics specific to your device might be requested and used to distinguish it from other devices (such as the installed fonts or plugins, the resolution of your screen) in support of the purposes explained in this notice.
Ensure security, prevent and detect fraud, and fix errors 126 partners can use this special purpose
Always Active
Your data can be used to monitor for and prevent unusual and possibly fraudulent activity (for example, regarding advertising, ad clicks by bots), and ensure systems and processes work properly and securely. It can also be used to correct any problems you, the publisher or the advertiser may encounter in the delivery of content and ads and in your interaction with them.
Deliver and present advertising and content 128 partners can use this special purpose
Always Active
Certain information (like an IP address or device capabilities) is used to ensure the technical compatibility of the content or advertising, and to facilitate the transmission of the content or ad to your device.
Match and combine data from other data sources 96 partners can use this feature
Always Active
Information about your activity on this service may be matched and combined with other information relating to you and originating from various sources (for instance your activity on a separate online service, your use of a loyalty card in-store, or your answers to a survey), in support of the purposes explained in this notice.
Link different devices 69 partners can use this feature
Always Active
In support of the purposes explained in this notice, your device might be considered as likely linked to other devices that belong to you or your household (for instance because you are logged in to the same service on both your phone and your computer, or because you may use the same Internet connection on both devices).
Identify devices based on information transmitted automatically 120 partners can use this feature
Always Active
Your device might be distinguished from other devices based on information it automatically sends when accessing the Internet (for instance, the IP address of your Internet connection or the type of browser you are using) in support of the purposes exposed in this notice.
Save and communicate privacy choices 108 partners can use this special purpose
Always Active
The choices you make regarding the purposes and entities listed in this notice are saved and made available to those entities in the form of digital signals (such as a string of characters). This is necessary in order to enable both this service and those entities to respect such choices.
have your say