ALS and Heart Issues

Status
Not open for further replies.

billybob

Member
Joined
Jan 18, 2016
Messages
26
Reason
PALS
Diagnosis
09/2017
Country
US
State
Florida
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?
 

[email protected]

Distinguished member
Joined
Jan 3, 2016
Messages
258
Reason
PALS
Diagnosis
11/2015
Country
US
State
Iowa
City
Iowa City
I was diagnosed with "heart failure", (apparently the right ventricle wasn't functioning properly) after some episodes of shortness of breath and fatigue. Some months later I was put on a monitor for a month and diagnosed with Afib. Just before my appt with the cardiologist for this I lost consciousness and fell (no damage from the fall) but spent the next 3 weeks in hospital and rehab due to widespread pulmonary embolism, On Eliquis for the Afib and embolism but nothing else. Due tomorrow for catscan of lungs to see how the clots are doing. No one has mentioned RFA or any other treatments, but I can testify that cardiac problems can and do afflict PALS--I had no heart issues prior to ALS. Good luck.

Ed
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,020
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
A-Fib has no correlation with ALS. As with other populations, heart issues increase with age and we people with ALS get other "things."

You can get an ablation with light sedation. I had an arrhythmia years ago and had an EP study. The reason you are flat on your back is because they go in through the femoral artery and they want to make sure the cut is properly clotted before you move. I was awake for most of it. They couldn't do an ablation because the pathway was too close to the nerve that controls breathing.

My doctor was Dr. Duran (Orlando Heart Center) I was told he was the best in the State and I've sent many people to him.

I would have your pulmonary doctor talk with your heart doctor concerning the proposed treatment. Maybe they can come up with another treatment plan. You also have the option of going to Mayo Clinic where a multidisciplinary team will work with you.

I have several other conditions besides ALS and it can make life harder. Best wishes to you.

Let us know how you're doing.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
9,134
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
You can use the Trilogy during the ablation, which I would insist on. Interestingly, NIV has even been studied as a way to reduce complications in people who don't otherwise use it, during the procedure. And I'd agree with Kim that having your pulmonologist specify minimum completely supine position time, as well as signing off on Trilogy use, is desirable.

Best,
Laurie
 
Status
Not open for further replies.
Top