I posted about my pacemaker box change this Friday 5th. I'm on my second course of antibiotics and now steroids and inhaler. Doctor says op will still go ahead but how can I be wheezing and coughing from a chest infection while they do there surgery.I phoned the day unit and they said I've still to go in and it's the docs /surgeons decision whether it goes ahead or not.
I've been told they couldn't interigate the pacemaker on my last visit and the battery is down where this op is needed.
My family's not seeing it how I am, I'm still to do everything and trying to tell them I need to be taking it easy it's just going straight over there heads.
I really need to talk to someone.
I'm going to go in here and not know the outcome then no one giving a toss about me before or afterwards.
I had to vent
Has anyone else had this scenario, perfect the whole time till the last week and boom
Thanks for reading
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Piggy2
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No wonder you need to vent and I am glad you felt you could post and know that we are listening to you
It must be a worry and not knowing if it will go ahead or not but true it will be down to the surgeons on the day and try and be reassured even though disappointing if they say no it will be the right thing and if they say yes they would not go ahead if it was not safe but I know how hard that not knowing is
But the body can be an amazing thing and who knows how you will be feeling by Friday
As for your family expecting you to do everything despite how you feel and what you are going through I really feel for you but maybe just rest and do not carry on doing what they expect and they may realise you are not up to it because when we keep going no matter how we feel people tend to ignore the fact we are saying we can't they just see us doing it and think they can so try and stand your ground a bit you have to put you first
I hope others will come along that can give you some good advise
Hi, Yes, I was in the same position in January waiting for the box change. Already cancelled once so I was pushed in and my pre-op was the day before the proposed op. Unfortuntely my blood tests showed high CRP levels due to an infection. The doctor cancelled it there and then and re-arranged for a fortnight or so later.
I went through the same process in February, this time my CRP level was fine so the op went ahead.
The CRP level shows if you have an infection and they should be checking it as a matter of course, and if high they'll probably cancel the op.
I have no pressure on checks it's just up on the due date where I get booked in or not and go home. Was your battery low? I've been fine all the way through and yet here I am with a chest infection. Thankyou for getting back to me heediomk5
Yeah, my battery was low and I'd been on a 3month review for about 12months. Mine was left a bit longer than they intended whilst they made a decision on changing to a CRT device but in the end went with a PM. To be honest it didn't make any difference to me, low battery or not as it just worked as normal.
Thankyou for your reassurance, scared though isn't it. Similar to you I'd been 3 months checks for last 18 month always promised oh the next time we see you you will be out forward. Now it's at the end and I'm ill. You couldn't write it. Have you been ok since, hope your well
I can't say I was bothered by the delays, if anything I was the one responsible more so than the medics, I didn't want a CRT device and told my cardiologist as such. Following an MRI my EF had improved sufficiently to go ahead with a standard PM and remove the CRT from the equation. Pacemaker wise, I'm happy enough with it, it's the same make as the previous one, does the job it's meant to do, no more, no less, it can't improve my health, but then again it's not meant to do that. Also it's not connected to the internet which suits me fine. I was back driving a week later, the scar is happy enough and has a nice tan 4months after the op.
What I would say about the infection as someone who has had Endocarditis, is that the risks involved in going ahead whilst with an infection, shouldn't be underestimated. Surgery doesn't bother me, but, weighing up the risks from both the medics and myself, they wouldn't touch me until I was clear and rightly so.
Hi HeedioMk5, I thought the purpose of a PM was to improve your health, but reading your post you say it does the job but can't improve your health. I am interested because I was supposed to get a PM but it didn't go to plan (see my bio). All I need to do is phone the consultant and say I want to try again but I'm a bit apprehensive. I have an EF of 25%, LBBB, and LV impairment. Your knowledge would be greatly appreciated.
Hi PinkKizzie, It can be confusing at times with pacemakers, but it depends on why you need one, for most people they can improve health whereas with the likes of me it's effectively nothing more than a link between the hearts upper and lower chambers.
In my case I didnt need a pacemaker, however, during my 2nd valve surgery my AV Node was damaged and I acquired Complete Heart Block. Basically the electrical signal doesn't pass normally from the atria to the ventricles so my natural heart rate is low 30s. Its job is to be the link lost in surgery.
For an improvement in my EF I would have had to have a CRT implanted which I didn't want this time. Mainly because it would have meant changing the wiring, which I've had done before. Thats not to say, I wouldn't have one in the future if my EF was to drop again to where it has been.
Having read your bio I can understand your apprehension, but, what I would say is sometimes you have to assess the risks and benefits, and much of that comes in your confidence of the surgeons. My experiences have led me to put my trust in them 100%, I've had complications in valve surgery, but, I opted for the same surgeon next time around when I could have changed to another. Blind faith my family said at the time.
Dont be put off by the likes of me saying a PM doesnt improve my health, thats just my particular circumstances.
Yes, it does help, and thank you for your reply. You have been through such a lot so you are obviously very knowledgeable. I definitely trust the medical staff 100% too, its just unfortunate this has happened, and I'm sure everything would be OK next time. I think my problem is I'm active doing lot's of gardening etc., and I would be afraid one of the leads would move and pierce my heart again, silly, I know. I'm on great meds that hopefully keep my EF stable for the time being. Thanks again. Take care.
Hi I dont have a pacemaker so can't comment but as far as your family go of you aren't well enough just don't do it Assuming they are old enough just say you will have to look after yourselves for a couple of weeks I am not well enough It will be a good lesson for them to find out how much you do for them all
I agree don't do it and I won't and can't do as much. I'm main carer for my dad but my other 2 sisters said they are there to help, god ones booking me into line dancing a few days after the op and the other ones got the car but not helping with shopping like promised. It may sound petty but my dad's demanding and they really have no idea the running around I do. I will be resting up after this op fingers crossed it goes ahead Friday but that's upto the docs/surgeon. My 2 adult sons just seem to be oblivious although they know what's happening and I'm in the house with them, I may as well be on my own as they give no help in any way. I even had thoughts a few days ago when first realised I had a chest infection....you know no one's bothered about me as long as I'm there for them and that only when I'm gone will they even realise my worth as it will be too god damn late at that point.
I would be very tempted, if you can afford it, to take yourself off to a B&B for a few day s. Don't give them any option, just tell them to get on with things and walk out.
You are right in knowing they will get a shock if you go but you see better just leaving them to get on with it and finding out now how to stand on their own two feet As for your sisters Tell them they will have to take over and look after your Dad as you aren't doing it until you feel well again it will be a lesson learnt for them as to how much you have been doing If your Dad moans just you just say that if you don't take time to get better you wont be well enough to do anything for him ever so his first port of call must be his other daughters Be tough and you will get well again but I suggest you make sure in future it's not all down to you You have a life too and caring for parents should be shared though itscamazing how it often seems to be one member that gets the lions share .
Take care andvsending yours virtual hug and a prayer you look after yourself I hope your op goes ahead and fir heavens sake do not go
Line dancing is she mad or gas she no understanding if what you have
Dear Piggy2. I am sorry to hear of your scenario. It is your body and your choice, about whether you have an operation. I am going for an angiogram in a few weeks time, but I already know I have angenia. All the best, Rabbit55.
As I remember it the operation is done under a local anaesthetic rather than a general so the requirements for the operation are not as great so they may go ahead to make sure they get the new battery in.
I am so sorry that you are going through all of this. Plus, I am sorry that your family doesn’t seem to understand how you feel. My 85-year-old mother lives with me, and 2 years ago when I had a HA, she never wanted to listen to anything about how I felt. I know that she is elderly, but I wasn’t asking her to do things for me; I just wanted an ear.
I am sorry that you are feeling that no one is listening to you right now. It sounds like you really do need this pacemaker battery changed asap. Plus, I think that you stated that the doctor/surgeons would check you on Friday to see if it is okay to go ahead with the procedure. These are skilled doctors who have likely completed thousands of these replacements and can best be trusted to decide what will be best to do.
I know that you are scared right now. I would be scared too, but every time that I worried myself sick about an upcoming test or procedure, I found that I had worried needlessly about all of it for days. Try to relax, take some deep breaths, have a cup of tea, and focus on trusting the doctors, medical staff, and yourself to come through this tickety boo.
I know that it is not as easy as I made it sound above, but do try to relax before the op. Find a cozy spot to read a book, take a tiny walk outside to look at the flowers, trees, and breathe in some fresh air. Some sunshine is really good for us. Take time just for you to do something that you like to do.
Recently, I found some comfort in this phrase: “Everything will be fine in the end. If it’s not fine, then it’s not the end. “
Hi, I understand exactly how you feel, add low levels of communication to uncertainty and anxiety follows.I have a recent replacement lead on an ICD and what was very different to the first procedure was the consultants stress that infection control was his absolute priority. I would be confident they will only proceed if safe and can understand leaving a decision to the day.
I would be very cautious about making the decision for yourself. Although my lead replacement was a consequence of the initial procedure and had to be done, for ' administrative' purposes the operation was classified as an elective. Had I declined or not turned up I would be taken off the list and have to go back into a queue of uncertain wait.
You need the procedure, I suggest you focus on the beyond the day.
I got the pacemaker change 4 days ago. A few hiccups but luckily settled itself for now. Scar is looking good too as took the dressings off yesterday at day 3. Thankyou for reading my post and helping me through it.
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