Back after 12 years...

[Elcarim]

Hello lovely people, Jodie from Australia here after a long time away. I had two AVRs in 2000 and 2005, the second when my younger child was just three months old. He is now 18yo, finished high school, and driving himself around. My other son is 20yo, at university, and looking at joining the Navy.

It was interesting logging in and seeing my profile pic, a wonderful pony who is long gone now. I actually gave up riding for 10 years due to a range of reasons, and I'm just getting back into it now. I had my first canter in years on a school horse last week.

I'm back because I had a pacemaker put in after my second surgery due to complete heart block, and one of the leads has been quietly impeding my tricuspid valve ever since. The lead looks to have attached to a leaflet, causing low grade heart failure that was stable for years, but seems to be getting worse. I now also have right heart hypertrophy.

I'm on my fourth cardiologist, and he is starting to make noises about needing to do something about the tricuspid valve. I spent a large part of the last 18 years battling severe anxiety, and I have only recently found my way through that and got to a point where I am feeling optimistic, making plans, and generally living like a regular person.

My next specialist appointment is in January, so I'll have more to consider after that. I know my energy levels are not great these days, but I was recently diagnosed with and treated for iron deficiency, and I was in pretty good shape before I had Covid in April. So maybe I'll start to bounce back once the iron kicks in and be able to avoid surgery for a few more years.

But if not... I'll be in here for some virtual hand-holding.

 

[pellicle]

Hey mate welcome back

__________ dreadful story, really sorry to read that.

My next specialist appointment is in January, so I'll have more to consider after that. I know my energy levels are not great these days

Totally get that.

I'm no specialist in the areas that you mentioned but can do some hand holding.

I'm in Killarney Queensland, where are you in Vic?

I'm sure that together the other fine heads here can offer some insights and suggestions

Best wishes

 

[Elcarim]

Hey mate welcome back

_______ dreadful story, really sorry to read that.

Totally get that.

I'm no specialist in the areas that you mentioned but can do some hand holding.

I'm in Killarney Queensland, where are you in Vic?

I'm sure that together the other fine heads here can offer some insights and suggestions

Best wishes

Hi, yes, I am in Victoria, near Ballarat. Weather is revolting down here at the moment, Queensland sounds great!

Interesting, I have posted here and on the pacemaker club forum about my situation in the past couple of days and everyone is horrified at what I have been through/am going through, which kind of shocked me. I just get on with it, because what are my options really? I lost so many years of my life to fear, and living with a life-limiting condition is hard. I have finally got my head right and my poor body is struggling to keep up. I have so many things I still want to do! Anyway, it's good to have a space where people understand that particular struggle.

 

[pellicle]

Anyway, it's good to have a space where people understand that particular struggle.

its always good to discuss things with people who have the same basic condition.

Today is about 30C and windy

Sending good vibes your way

 

[Lynn]

Elcarim, very sorry to hear about your struggles. I also required a pacemaker after valve surgery due to complete heart block and I can relate to your anxiety. Accepting that I would rely on the device to keep me alive for the rest of my life was a struggle, much more so than accepting the valve issue.

I had worked through the anxiety and was feeling physically and mental great summer of last year, when I received a letter about a recall for my Abbott pacemaker. Needless to say my anxiety returned lol. There was several of issues surrounding this including what I thought was a very misleading presentation of the risk from Abbott, that no one but me seemed to be questioning. (It was simply bad and misleading math). Long story short, I disagreed with the top rhythm doctor in my area who felt home monitoring was sufficient and had to fight to have it replaced. In the end it was replaced promptly without complication by the terrific surgeon who implanted my original pacer and my cardiologist at follow up, said he felt I had made the right decision.

I learned a couple of things from this; pacemakers are not benign, I really will deal with the follow out from this for the rest of my life. Secondly, it’s not wrong to question medical professionals and advocate for yourself. Thirdly it takes a great deal of energy to fight these battles, and it can cause a lot of stress.

I haven’t faced what you are facing though, so I can’t provide any insight there. But I can understand much of how you are feeling, and I will be thinking if you. I know it can feel like you drew a bad card, when you end up being one of the few who need a pacer after surgery. I try to remind myself we all draw a bad card some where along the way, and the universe isn‘t picking on me, it just is what it is. And then I start looking for options and solutions so I can create a road map for myself on how to move forward, I was a financial planner, so I take that approach; what is the best outcome, worst possible and what is the most liKelly? What information do I need and what actions do I take to make this happen. Having a plan and accepting the situation for me, relive anxiety and help me to move forward.

it sounds like you have been searching for a cardiologist who can help you. Has the issue of a CRT device come up? These three lead pacers, according to studies I have read are a tremendous help with heart failure in pacemaker patKent’s. Has there been discussion over the years about the risk/benefit of having the poorly placed lead removed? I know I coming into your story late, so this may all have come up.

I hope, in consultation with your medical team, you can come up with a viable plan that offers you the best quality of life possible, you deserve it. I also hope you can hang on to the progress you have made dealing with your anxiety through this. Don’t let the pacer take that. Wishing you the best and thinking of you, Keep us up to date.

 

[ottagal]

Nice to see you post again, but so sorry about the circumstances. I can't provide any insight into your situation, but want to wish you well and that you can get the answers you are looking for. Very best wishes,