Where do I start? ……… VT and ICD newbie

[SamAndrews]

Two weeks ago I had no knowledge of VT or ICD's then POW! What a journey it's been. Me being me, I'm a gather of information. The more I understand the better I feel, but for my husband who will have an ICD fitted tomorrow (all being well), this is a true bolt from the blue so if there's anyone out there that can share their experience I would love to hear from you. It would seem my husbands VT is most likely due to high dose chemotherapy he had 14 years ago. Thank you in advance.

[Lezzers]

Hi Sam, my husband has had an ICD for over 5 years as he had previously had a cardiac arrest. He now has heart failure & is high risk of sudden death. However, life goes on & we consider the ICD as his life saver. There is a Facebook group called ICD Support-Uk which I highly recommend, the name says it all. Good luck to you & your husband, very scary at the moment but it does get easier xx

[SamAndrews in reply to Lezzers]

Hi Lezzers, thank you for your reply and suggested FBA support group information; I've requested to join. As we understand more hopefully this will help alleviate our concerns. Knowing life goes on, which of course is the very point of having an ICD as a life-long companion!, is great and I thank you for offering us this reassurance. Very best wishes to you and your husband.

[Lezzers in reply to SamAndrews]

Hi Sam, I hope the group is of help to you. I also hope your husband is OK after the ICD fitting, it is very painful at first so ask about pain killers. At some point the ICD clinic may offer you a home monitoring device, if they don't offer ask about it. Its basically a small machine you have at home & it monitors your husband 24/7 and will immediately notify the hospital if anything if there's a problem. The hospital will then contact your husband to see if he needs medical help. It really is comforting to know its there xx

[SamAndrews in reply to Lezzers]

Thank you for this information. Providing an x-ray this morning is ok Mark will be home later this afternoon. Feeling a bit vulnerable tbh as no one has gone through next steps, maybe that will be done as he's released. Home monitor sounds good so will follow that up. Thank you x

[Lezzers in reply to SamAndrews]

Also, ask bout being referred to a heart nurse, they are invaluable for advice, support & can adjust medication etc, they workin conjunction with the cardiologist. Sorry if I'm overloading you with information xx Which hospital is your husband in?

[SamAndrews in reply to Lezzers]

Good morning Lezzers, Mark is now home and night one done! I was anxious but glad he was home. We sincerely appreciate your guidance and trust me, it would take a lot overload as like to be in the know! 🙂 Mark was treated in Blackpool Victoria and we did have a chat with a cardiac nurse prior to surgery. I will make enquiries to have a referral to one for ongoing support, thank you the suggestion. We were told yesterday about the home monitor too so think that will be arranged/discussed on his 4 wk assessment. One thing I need to chase today is Mark's ICD card as we weren't give one. I hope you don't mind me asking, did the ICD have any impact on your your husband's employment? Mark has been told he can't continue in his current role and as it was through an agency this will have a significant impact. Happy Sunday to you both xx

[Lezzers in reply to SamAndrews]

Hi Sam, glad to hear Mark is home, it's probably all very daunting right now but do ensure you look after yourself amongst all this. Remember, Mark is now being looked after 24/7, who's looking after you!! My husbands situation is a bit different as he had a massive heart attack some years back & wasn't able to do his Job. His company medically retired him so he has his pension. Do take advice from citizens advice, but I don't think Mark can be discrimated against because he has an ICD, however, there are certain jobs he will not be able to do because of magnetic interference etc, I believe welding is one. The Facebook group I recommended will be able to help you more as I've seen lots of posts about employment. Also, do find out if you're entitled to any financial help, ESA?? Again the ICD support group will know more than me. All this will become easier with time, however, If you need to, do speak to your gp/heart nurse about counselling for you/Mark. I wish it had been around when Kevin had his heart attack & cardiac arrest, it's been a very lonely journey until I found support groups such as this & the Facebook group! Please feel free to contact me if there's anything I can help you with xx

[ozchrissy]

I have had an ICD for the past 12 years and it is my life saver. I love my little device in my chest and it works pretty hard for me every day. I am on my second device, my first lasted for 6 years. Your husband is fortunate, he will now have his own personal Emergency Room with him 24/7, and believe me they do keep a good eye on you and intervene when needed. Not necessarily with a shock, which is the last resort, but most modern ICD's have means to revert your heart rate back to a normal rate before anything too serious happens. I have been shocked on numerous occasions over the years, and each time saved my life. I look at them as a reset button, like on the TV etc, they revert your back to normal rhythm. Good luck with your surgery, and make sure you do what your docs advise you to do. That is essential to follow your docs advice.

[SamAndrews in reply to ozchrissy]

Hi ozchrissy, thank you for your reply and kindly sharing an insight to your experience. It's great to read how happy you are to have your ICD companion there to help and support you. We are very much glass half-full people but our heads are having trouble keeping up with the speed in which this has all happened; especially my husband which is totally understandable. He now has his SICD fitted and is keen to come home. Very best wishes to you.

[woodbon]

Hi, I don't have anything at the moment, but should I get worse my cardiologist has told me that I would be a good candidate for CRT (a fancy pacemaker)! Up until 2 years ago, I didn't realise I had a heart condition. Anyway, I can understand your husband being worried, and shocked, its fine to tell the medics you're worried or frightened one said to me that he'd be more worried they can talk you through things. In fact shock is the thing that really got to me. Take all the help you can get, cardiac rehab, local groups this website and with time you can get used to it. Still frightening at times, I find, but I do forget it sometimes, (and I am the worlds worst patient)! My very best wishes for the procedure. A lot of people I know have found a new lease of life with one fitted!

[SamAndrews in reply to woodbon]

Hi woodbon, than you for your message. With almost no time to prepare for an ICD in our lives we've been non-stop spinning! We will fully investigate all available support networks and appreciate you taking the time to briefly share your experience. Very best wishes to you.