Elcarim
Well-known member
Edited highlights - I'm Australian, 46yo, had two AVR surgeries in my 20s (tissue at 22yo, mech at 27yo)
Ended up with heart block and a pacemaker after surgery #2
Pacemaker lead interferes with my tricuspid valve, causing a severe leak
After 19 years of this the right side of my heart is enlarged.
I'm on my 4th cardiologist. My previous one retired and handed me over to the current one, who for the first 18 months focused on my pacemaker, as the battery was getting low. It was replaced nearly two years ago. The nurse who called me to let me know the replacement had been booked told me to stop taking warfarin three days before the procedure. I told her I had a mechanical valve and was of the impression that it was better to stay on warfarin, and asked if she could check with the doctor. She told me she was sure the doctor knew what was going on and that those were his instructions. I did as I was told and my INR was 1.7 on the day of the procedure.
As I was being prepped for the replacement, the doctor came in and had a look at my file. He was surprised to see that I had a mechanical valve, and told me to resume taking warfarin that night...
At a follow-up pacemaker check I asked if I should make an appointment to discuss my other issues. I hadn't had an echo for nearly two years. I went for an echo and then went back to the cardiologist at the start of January. He told me that the right side of my heart was enlarged and that he would refer me to a surgeon to discuss my options. I had another pacemaker check booked for 3 months, and he said he would have a referral and hopefully an appointment with a surgeon ready for me when I came back.
End of March I go back for a pacemaker check. At the end of the appointment I remind him that he had said he was going to refer me to a surgeon. He told me to get another echo and come back in a month.
I get the echo, go back to the cardiologist, and he tells me that the echo was the same as the previous one. Says he will refer me to a surgeon and phone me in another month.
Friday just gone (June 7th) he calls and tells me that my echo is the same as the previous one and he will refer me to a surgeon. If I have not heard from them in a month I should call him so he can follow up.
So that's five months of this cardiologist telling me he will refer me to a surgeon and it still hasn't happened. Meanwhile I'm dealing with the stress of knowing that OHS #3 is looming, not making any plans because I could find myself incapacitated for a couple of months at any point, and paying to have the same conversation over and over with this doctor. Meanwhile I don't even know how sick I actually am or how urgent surgery is, I just know I am tired all the time and I have pretty much no exercise tolerance.
I am planning to ask my GP for a referral to another cardiologist, but it could be months before I can get an appointment. I'm not sure where to go from here or if there is anything I can do other than wait for this cardiologist to actually action something. With my previous surgeries things seemed to go from 'you need surgery' to attending the pre-admission clinic very quickly, like within a fortnight, with surgery very soon after.
Ended up with heart block and a pacemaker after surgery #2
Pacemaker lead interferes with my tricuspid valve, causing a severe leak
After 19 years of this the right side of my heart is enlarged.
I'm on my 4th cardiologist. My previous one retired and handed me over to the current one, who for the first 18 months focused on my pacemaker, as the battery was getting low. It was replaced nearly two years ago. The nurse who called me to let me know the replacement had been booked told me to stop taking warfarin three days before the procedure. I told her I had a mechanical valve and was of the impression that it was better to stay on warfarin, and asked if she could check with the doctor. She told me she was sure the doctor knew what was going on and that those were his instructions. I did as I was told and my INR was 1.7 on the day of the procedure.
As I was being prepped for the replacement, the doctor came in and had a look at my file. He was surprised to see that I had a mechanical valve, and told me to resume taking warfarin that night...
At a follow-up pacemaker check I asked if I should make an appointment to discuss my other issues. I hadn't had an echo for nearly two years. I went for an echo and then went back to the cardiologist at the start of January. He told me that the right side of my heart was enlarged and that he would refer me to a surgeon to discuss my options. I had another pacemaker check booked for 3 months, and he said he would have a referral and hopefully an appointment with a surgeon ready for me when I came back.
End of March I go back for a pacemaker check. At the end of the appointment I remind him that he had said he was going to refer me to a surgeon. He told me to get another echo and come back in a month.
I get the echo, go back to the cardiologist, and he tells me that the echo was the same as the previous one. Says he will refer me to a surgeon and phone me in another month.
Friday just gone (June 7th) he calls and tells me that my echo is the same as the previous one and he will refer me to a surgeon. If I have not heard from them in a month I should call him so he can follow up.
So that's five months of this cardiologist telling me he will refer me to a surgeon and it still hasn't happened. Meanwhile I'm dealing with the stress of knowing that OHS #3 is looming, not making any plans because I could find myself incapacitated for a couple of months at any point, and paying to have the same conversation over and over with this doctor. Meanwhile I don't even know how sick I actually am or how urgent surgery is, I just know I am tired all the time and I have pretty much no exercise tolerance.
I am planning to ask my GP for a referral to another cardiologist, but it could be months before I can get an appointment. I'm not sure where to go from here or if there is anything I can do other than wait for this cardiologist to actually action something. With my previous surgeries things seemed to go from 'you need surgery' to attending the pre-admission clinic very quickly, like within a fortnight, with surgery very soon after.
