billybob
Active member
- Joined
- Jan 18, 2016
- Messages
- 32
- Reason
- PALS
- Diagnosis
- 09/2017
- Country
- US
- State
- FL
- City
- The Villages
Good morning! In November 2019, I began having severe variations in pulse rate from the 30s to 170s bpm. I wore a Holter monitor for a week and it was determined I have A-fib. I was put on medication (Metoprolol and Eliquis). Last month the a-fib began to get worse and more frequent and lasting 4-6 hours at a time. I was fitted for the Holter monitor again this time for two weeks and also added Digoxin to my Rx list.
The results from the Holter monitor were not good. My cardiologist and I talked about the situation and his opinion is additional Rxs would not work, nor a pacemaker. He has recommended a heart procedure called Radio Frequency Ablation (RFA). In addition, his decision is weighted by the fact my late mother had a-fib and passed from a stroke, and two of my cousins died of sudden cardiac arrest.
I have a telehealth appointment on August 27 with the specialist in the cardiology group who has 20 years experience doing this procedure and has successfully done over 2000 of them. My concerns are: 1) is this heart issue common with ALS patients? I have read that sudden cardiac arrest is the second leading cause of death in ALS patients; 2) my lung capacity was 48% as of my last PFT in January 2020, and likely is less now. I'm on a Trilogy at night and some of the day; I can't lie flat for an extended period of time without becoming short of air (the RFA procedure can be as long as 3 hours and the recovery from 4-6 hours lying flat.
Has anyone experienced this or successfully gone through with this?
The results from the Holter monitor were not good. My cardiologist and I talked about the situation and his opinion is additional Rxs would not work, nor a pacemaker. He has recommended a heart procedure called Radio Frequency Ablation (RFA). In addition, his decision is weighted by the fact my late mother had a-fib and passed from a stroke, and two of my cousins died of sudden cardiac arrest.
I have a telehealth appointment on August 27 with the specialist in the cardiology group who has 20 years experience doing this procedure and has successfully done over 2000 of them. My concerns are: 1) is this heart issue common with ALS patients? I have read that sudden cardiac arrest is the second leading cause of death in ALS patients; 2) my lung capacity was 48% as of my last PFT in January 2020, and likely is less now. I'm on a Trilogy at night and some of the day; I can't lie flat for an extended period of time without becoming short of air (the RFA procedure can be as long as 3 hours and the recovery from 4-6 hours lying flat.
Has anyone experienced this or successfully gone through with this?