New Member - Diagnosed a Year Ago

[zylodey]

Glad to meet you all.

I have to attend the Pacemaker Clinic every three months and they test my heart every time. Right now one of my leads is not in the right position, so they have to put the pacemaker at its highest voltage in order for it to work, so that is why they are testing every three months. Usually it is every 6 months. They are not going to go back in and move it yet, as I am only using that lead 1 % of the time, so they think it is better just to monitor it for now. I also had a leaking valve when they put int he pacemaker, so I am supposedly scheduled for an echo anytime now. The cardiologist thought it might be due to my heart failure and would correct itself, so wanted to give me sometime to recover, but he said he would schedule it for the summer. I have not heard anything yet, but summer is not over - thankfully!

[Jack]

I think you should chase up the echo as a matter of urgency. Although I admit that I know little about it, this sounds like the sort of damage that Wegener's can cause.

[LisaMarie]

Glad to meet you all.

I have to attend the Pacemaker Clinic every three months and they test my heart every time. Right now one of my leads is not in the right position, so they have to put the pacemaker at its highest voltage in order for it to work, so that is why they are testing every three months. Usually it is every 6 months. They are not going to go back in and move it yet, as I am only using that lead 1 % of the time, so they think it is better just to monitor it for now. I also had a leaking valve when they put int he pacemaker, so I am supposedly scheduled for an echo anytime now. The cardiologist thought it might be due to my heart failure and would correct itself, so wanted to give me sometime to recover, but he said he would schedule it for the summer. I have not heard anything yet, but summer is not over - thankfully!

Hello Zylodey......Welcome.....I am a newbie...confirm diagnosis in May -June....Have trach right sinus right jaw right paritiod gland and heart involvement...per echo (no Symptoms from the heart except for pain...my ef is 55%).....I have been blessed to find this site and it has kept me sane ...vent ask question and share...we all learn from each other...welcome