My name is Chloe and in April 2006 I lost my half-sister to ARVC (arrhythmogenic right ventricular cardiomyopathy). Like so many other ordinary families, our loss was our first introduction to the reality that so many young people lose their lives to this type of condition that so regularly goes undetected.
In last nine years I have travelled once or twice to my hospital from my home in Kent to have tests carried out and repeated to monitor me for the same condition. In January 2015 they detected a change from the year before, and this –combined with a few unexplained fainting episodes in the October of 2014 – prompted the staff to want to fit me with a “reveal device”. [The device is used to record your heart rate and rhythm if you have an unexplained fainting episode, dizziness or palpitations.] I had the reveal device fitted at the start of April.
I struggled to find anyone to talk to about how I felt about having this done, after all, the doctors can only tell you the medical side, and anything you find on the internet reads pretty much the same thing. This was really frustrating considering I was reassured that it was a very common thing for people to have fitted. This is what prompted me to contact CRY and write this. The medical ins-and-outs of the procedure was not the information that I needed. Medically it’s so simple my consultant wouldn’t even call it an operation, which is fine, but he wasn’t the one having it done. Facing the procedure was the first time (nine years down the line) that I had to face the fact that my and my family’s journey with ARVC might not have stopped at the loss of my sister.
Leading up to my admission to hospital I went through the full range of emotions – I am very lucky to be so well supported by my family. I was exceptionally worried and nervous almost all of the time, more about the future and what this might uncover than the device-fitting itself.
On the day of my procedure I travelled by car, as they advise that after you’ve had the device fitted you do not use public transport to get home again. I was admitted to the short stay ward, changed into a lovely hospital gown and had an ECG and blood pressure taken. I waited to meet the consultant doing the procedure and one of the theatre nurses who would be looking after me. I had a cannula fitted (in case of an emergency, and to give antibiotics to protect me against a very small risk of infection). I chose not to be sedated and had the procedure just under local anaesthetic.
I walked with the nurse into one of the catheter labs; just under an hour later I was wheeled back to the ward. The fitting takes a very short time; the rest of the time was taken up by the staff’s preparation and the careful stitching they did to reduce the size of the scar as much as possible. After the stitches they scanned the device to make sure it was working. Back on the ward my family were waiting for me. I was given my other half to the device so I can track my symptoms (if I get any) and my patient card which has the device’s serial number on it; I have to keep both of these things with me at all times so they stay in my handbag. After two hours I was allowed home after being given all of my paperwork; I had to eat, drink, walk around and go to the toilet.
After a week I went to the GP to have my stitches taken out – which was a big relief for me as I was very worried about catching them. I had to have a week off from work and now I can do everything that I could do before.
It may seem strange but I was really concerned about being able to feel the device. Yes I can feel it when I move or lay on my front etc., but I am getting used to it being there and it isn’t anywhere near as pronounced as I feared it might be. No-one can see it and the consultant made sure that it was very low in placement in case I became concerned or self-conscious about it, even with the very small scar I will be left with.
For anyone facing having this device fitted I would suggest the following; make sure you have someone to talk to, the emotions this stirred up for me were huge. Write down your questions to ask the doctor, and if you are not happy with the answer ask your question again and ask for clear answers. Ladies, get a comfortable non-wired bra for the first few weeks just in case. Find something to focus on to distract yourself if you aren’t very comfortable or happy in hospital environments; it really will help, especially if you opt not to be sedated like I did. In my head I repeatedly sung (Baz Luhrmann’s “Wear Sunscreen” to be precise), it may seem strange but it will give you something to focus on and will take you to a different place, it kept me calm anyway; find something you know will work for you.
I hope that this might help someone with the non-medical information I needed but could not find.
I wish you enough sun to keep your attitude bright.
I wish you enough rain to appreciate the sun more.
I wish you enough happiness to keep your spirit alive.
I wish you enough pain so that the smallest joys in life appear much bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish enough “Hello”s to get you through the final “Good-bye”…