Saying Hi
- by Louise71
- 2020-06-13 20:28:57
- General Posting
- 695 views
- 5 comments
Hi I had my pacemaker fitted on 22 May 2020 and to be truthful I am a bit shell shocked.
sorry this will be long..
In October 2019 after wrongly being told by one Dr that I had virtigo I had a 7 day heart monitor. The result was that every now and then my heart would stop for 4 seconds so I was referred to cardiology at the hospital and was told it was an urgent referral. Finally after chasing up the appointment several times I was due to see someone on 31/3/2020 but it was cancelled but not due to the pandemic so on the phone to my dr again as my symptoms had worsen . He sent another urgent referral. I tried to make a hospital appointment online but obviously due to current climate none were available so I decided I had waited long enough and called the number quoted. After going round in circles I managed to speak to the person who organised the appointments to be told my dr had not made a referral even though the hospital had sent me a letter to ask why I had not made an appointment!! Eventually she said she'd call my GP and see what was wanted as it looked like I had been referred to the wrong clinic. She spoke to my GP rang me back within 15 mins explaining she had everything that she needed and she had personally walked the paperwork round to the right department and it was on the review pile and I would hear soon.
Well one week later the cardiologist called introduce himself explained he had just picked up my notes and it looked like I had heartblock but he didn't believe the report and wanted to see the trace from the monitor himself as I was only 48 and was young to have this problem but in the meantime he was going to see if he could get me scan and or an mri as soon as he could and arrange another 7 day monitor just to make sure. That call was 4th May 2020 I had the mri and ecg and monitor fitted on 7 May. The monitor was returned on 14 May 2020 and I had a call on 15 May 2020 saying they wanted me in the following Friday to have a pacemaker fitted. I had only had one brief conversation with the cardiologist before agreeing to go in and have it done.
When I spoke to the cardiologist just before he said they couldn't leave it any longer or I would have started fainting and wouldn't have been able to drive. I asked what the underlying problem was and he didn't know as I do not appear to have anything else wrong with my heart apart from a small area of scarring, again he didn't know from but possibly an infection or cardiac scarcodisis but he wasn't worried about it.
I don't need to go to see the dr for 6 week check as I have a WiFi transmitter which sends the dr the data.
so within the space of 18 days I went from thinking my condition can't be that bad due to length of time it had taken to see the cardiologist to having various test and a dual wire st Jude pacemaker implanted.
I'm sure there are things I should know, things I should do different or I shouldn't be doing but everything happened so quickly Im not sure I asked the right questions so if anyone has any tips or advice I will gladly welcome them.
for example is it normal for it to feel a kicking sensation in your chest when it start pacing ? A bit like when a baby gives a good kick but only in my chest.
5 Comments
Welcome newbie
by Theknotguy - 2020-06-14 10:18:06
Welcome to the club you didn't want to join. Most of us didn't want to be here but here we are. My introduction was to pass out on a hiking trail, then wake up six days later with a pacemaker implanted. Surprise!!! It was a lot to figure out.
One thing you will find with cardiac stuff is that you think the medical people know a lot about your medical problems when they really don't. That was a big surprise for me as I would get into conversations with medical people only to find I was instructing them instead of the other way around. Surprising and chilling when you think about it. Went for heart rehab and got into a conversation about my heart "attack" and had to educate the therapists about heart electrical issues. Unfortunately you'll find most medical people only learn what they need to know about their speciality and don't learn that much about anything else. Scary isn't it?
You have two options. 1) Not learn anything about your situation and live with the ignorance-is-bliss option. 2) Learn what you can about your situation and make sure an uninformed medical person doesn't screw up because they don't know what's going on. I've taken option 2 and it's saved me some grief because the medical people can't say I'm imagining something and it's not a problem when it is. Your option as to which way to go.
When I first got my pacemaker I could feel the electrical "tickle" then the hard thump of the heartbeat. About three months out the tech lowered the voltage on my pacemaker and I couldn't feel it any more. I feel the sensations you are having now may be caused by a similar situation. It's something you can discuss with your pacemaker tech. Oh, and that's another thing, you can get good techs and bad ones. They were running the ventricle side of my pacemaker testing up real fast and I'd go into afib the next day. So I had to tell the techs to take it easy on that part of the pacemaker testing. Most of them are courteous when they are aware of the situation but a couple didn't pay attention so we had a discussion about their brain power being equivalent to pond slime. Word quickly got around.
Post pacemaker most of us go on to lead "normal" lives. i.e. we can do just about anything we want to do. So the pacemaker isn't a hindrance to your life, it's a help. You'll also see comments on this forum about people forgetting they have a pacemaker because they've been able to go on with a "normal" life. Hopefully you will be able to do the same. You'll also find this forum to be a good source of information. You can always ask about something you don't know and people on this forum may have had the same situation and can tell you what you may want to do.
In the meantime I hope your adjustment to your pacemaker goes well and that you can quickly get on with your life.
Welcome Newbie
by AgentX86 - 2020-06-14 20:48:10
Read Theknotguy's third paragraph (above) again. Then once more to make sure you got it. These are words to live by.
This stuff isn't hard and you don't have to become a cardiologist. You only have to know about your condition. You're not treating anyone else so your job is much simpler. You also not endangering anyone's (including yours) life, just searcing for information (and jargon).
In addition to the points that TNG made, I'll add some additional benefits of his advice (in no particular order).
Informed consent: You will understand the options as they're given and you won't be buffaloed into something you don't want. You will be able to make intelligent choices.
Communication: You will be able to talk to your doctors at their level. The more that you demonstrate that you understand, the more information they'll give. AND, the more time they'll spend with you. People who go TNG's option-1, right or wrong. telegraph that they can't be bothered with the details, so they're not given the details and often choices.
Quality of Life: This is a repeat of what others have said but it's important. Some care givers are quite narrowly foused. If you don't know what to ask for, you're not going to get it. PM techs, in particular, atend to be conservative with settings. You may have to push them to give your what you need to perform the way you want to and feel the way you deserve. If you can tell them what you want, they're much more likely to give it to you, or at least ask your EP if he's OK with the change. If you don't know about these settings, you're not likely to get them. You certainly won't if you don't know what to ask or what's possible.
Thank you
by Louise71 - 2020-06-15 08:15:18
Thank you Theknotguy and AgentX86 for taking the time to provide me with advice based on your personal experience.
I will definitely be going down the route of option 2 and feel really silly I didn't do more research before but when they called on the Friday after getting the results they asked if I agree to have the procedure and that it was to be on the following Friday my thoughts were they wouldn't have been getting me in so quickly at this time if I didn't need it. And then I had to organise work and my kids and now Im over the shock I went looking for support and starting to do my research and I really appreciate your replies😊
You know you're wired when...
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I feel so blessed to have this little gem implanted in me. When I think of the alternative it is quite overwhelming sometimes.
Heart Block
by AgentX86 - 2020-06-13 22:20:14
First, let me welcome you to the club that only admits people who wished they weren't members.
Second, you're certainly not too young for a heart block. You'll find there are many here who have been told the same garbage. It's amazng that they put you off that long, even with the Covid stuff. There has to be some way of treating serious conditions but that's the mentality of our politicians. They'd rather people die of something else than have another covid death. It's numbers.
No, you shouldn't be feelng a kicking sensation but it's not all that uncommon. Sometimes the leads run too close to the diaphragm and will excite it. Usually they can just turn down the voltage to the heart and the problem will go away. They raise it early in the process until the heart settles in with the pacemaker. They'll then turn it down. If you're feeling it, they'll often turn it down early. Be sure to tell your cardiologist about this as soon as possible. If this is the problem, it's not dangerous but you don't need the aggrivation. However, it may be something else and you want to get it checked.
Again, welcome to the group. It's a really good idea to learn as much as you can about your condition and your pacemaker. The more intelligent questions you can ask, the more your cardiologist is likely to tell you. It shows that you're interested in your health and they'll open up. If you show that you are familliar with your particular pacemaker, they'll usually let you have more control over its settings, allowing a better quality of life. You know your body better than they do. Remember that.