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  • fromtheheart1988

5 Top Tips for Adults with Congenital Heart Defects

When I first thought about blogging, it never occurred to me that I could offer “top tips” to fellow patients and their families. However, the idea for this particular post occurred to me whilst I was trying to sleep and, as I began to draft it (in my head), it occurred to me that over the years, I’velearnt a great deal about navigating the health service and my congenital heart condition.

1. Create and maintain a file with all your records and have it to hand

In the last year I’vehad four emergency admissions to my local hospital due to abnormal heart rhythms. On each occasion, I’ve takenmy file containing copies of medical letters and recent ECG recordings. Thishas been useful for several reasons. Firstly it has often meant that because they have my information at their fingertips the triage nurse has been able to at least attempt to speed up the time taken to be seen by a consultant. Secondly it helps avoidthe need for (or at least reduce the time it takes) for the twenty questions routine. Thirdly, if the hospital notes can’t be located, the information on file acts as a reference point for any doctors involved in your care. Finally, there is something very affirming about taking that little bit of control of the situation; you feel better when you’re armed with your notes and the professionals around you are mostly grateful to have the information too. It helps them realise that they are dealing with someone who wants to be an active partner in getting well!

2. Self-Advocacy

Never be afraid to ask questions about proposed treatment or give your opinion. On my most recent emergency admission I was treated by 3 different doctors. The first one I saw planned to discharge me a few hours after surgery; I objected and eventually was allowed to stay thanks to the intervention of the nurse in charge. The same doctor saw me the next morning and said that he was planning to discharge me. I waited before asking him what he was planning to do about the blood test that would check my warfarin (anti-coagulant/blood thinner) levels. He said that the warfarin test wasn’t necessary. I explained to him that for someone with an artificial heart valve (and on blood thinners) it is necessary to test the clotting levels on a regular basis. I informed him that a warfarin test hadn’t been done since I was admitted and that at the time, the result was particularly high. He turned to his students and explained that I was right and he would be organising bloods.

His senior colleague came to see me a few minutes later and explained that he wanted to put me on a heart monitor and would not be discharging me for at least another 24 hours. I wasn’t discharged for another two days as cardiac monitoring identified new problems.

3. Connect with others

It wasn’t until I was about nineteen that I realised that there was an entire community of congenital heart patients out there. Why? Because no one told me. Not one person involved in my care thought to tell me that there are charities and support groups etc. dedicated to people like me. I stumbled upon these groups whilst online. Thanks to The Somerville Foundation (formerly the Grown Up Congenital Heart Patients Association) I am now in touch with several patients and attended my first patients conference last year. The conference is a great place to meet people, learn about new procedures and compare notes. There is also a very active facebook group. There are also similar groups for young children and their families and some expectant women find these groups before their child is even born. Whilst I have learnt that no case is ever the same,these groups are invaluable for many reasons including the freedom to ask questions and know that no matter what time of day or night,you will never be alone – something that is incredibly important to know. Trust me, whatever the question,there will always be someone who has been there and willing to share their advice. Many of these groups are ‘closed’ meaning that no one outside the group sees what you have posted. One day you can ‘pass it on’ by advising other patients. I for one am always learning from these groups.

4. Stay in touch with new developments in the cardiac arena

It was during the Somerville Foundation conference ( I learned about a new surgical technique offered by aconsultant electrophysiologist. I spoke at length to two patients who had already been treated using the new technique. Following the conference I was determined to explore this option for myself. At my annual cardiac review I asked my cardiologist to arrange a referral. He agreed and wrote a lengthy letter to the consultant providing the treatment. I went on to be accepted for treatment and had a successful ablation using the surgical technique I had learned about (future post).

5. Know your limit

This is easier said than done. Every patient has different limits , just as they have different conditions. For example, some patients are no longer able to work and have to retire due to ill health, others are able to work a 37 hour week and experiencefew adverse effects. Some patients regularly run marathons whereas I am not medically fit to run long distances. I have always hated anything to do with physical fitness, but last year I started taking regular short walks. On the days I’m not working, I take a walk for about 30 minutes, meaning I walk a minimum of 5 miles a week. Don’t let anyone put limits on your abilities; over time you will discover what you can and can’t do. Although I would advise that if your cardiology team advises you not do something do give their advice some serious thought.

6. Don’t compare yourself to others

Every heart patient is different. Whilst your heart defect may be structurally similar to mine the way you react to treatment could be very different. For example ,there may be two patients with the same type of arrhythmia problem and both are given the same anti-arrhythmic medication at the same dose. But their reactions to the medication may be wildly different. Patient A may see no side-effects whereas patient B may suffer intolerable levels of exhaustion which could make them feel worse. We can all learn about how others fare with different treatments and about coping strategies etc. but our own experience will be decided by our own unique and complex physiology, as is the case for anyone who is undergoing treatment for any condition.

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Dec 07, 2018

You are off to a great start Lowri. Well done you. Looking forward to reading more. This is very informative.

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