Hello

Welding may well be ok

by crustyg - 2021-03-18 13:15:16

Traditional, high-current welding is out, but TiG- or MiG- welding may be ok.  It depends on how close to the work you have to be.  There are other contributors here who stil weld, with a PM.  An ICD *may* be more difficult - you won't enjoy a false activation.  Try the search facility next to Logout.

If your docs have run all of the standard genetic panels for your type of heart disease then your only additional option is WES, and you opt-in to being informed of any/all variants-of-unknown-significance.  I suspect that any VUS found will only really be useful to others in your kindred, and perhaps generate an academic report.  But nice to be able to blame it on genetic inheritance.

There are materials that we can easily get hold of that can really damage the heart (N2O - 'hippy crack', long-term senna laxatives) as well as some infections that can trigger auto-immune damage and nicotine.

I appreciate that your self-confidence has been shattered, and it's a long road back to believing that there *will* be a tomorrow for you.  All you can do is face each day, and as Winston Churchill said, 'keep b*ggering on.'

Best wishes.

Get another opinion - for the sake of your wife/children

by Pinkit94 - 2021-03-18 13:29:14

I don't know where you live, but your story sounds like a genetic heart condition. You should try to gather up all of your medical info and send it to an md that specializes in genetic heart rhythm disorders. Especially given that you have children that might have the same genes as you. The reason I'm saying this is because much like yourself, I had a cardiac arrest, and no one knew the reason why. I had genetic testing, and pretty much every other kind of test, all came back fine. I lucked out, as one of the nurses that took care of me used to work with a doctor who specializes in genetic heart conditions, I was able to get referred. It turns out I have Brugada syndrome but with a rare genetic mutation, that a typical genetic test did not find. Now the prognosis is unknown, and no one knows if my future children would have this but knowing its genetic helps. It helps to plan out the future, so when I do have children I know to get them screened on regular basis. Best of luck and stay safe.

How to move forward ?

by Gemita - 2021-03-18 15:25:51

Charlie, how you wish to move forward is a very personal decision and you have already been given good advice from both crustyg and Pinkit94. Sometimes however it is exhausting to continue to search for a cause for an illness when there is no obvious sign, and it is often easier to accept things for what they are and to try to move on.  This is what I would perhaps do, or at least put things on hold until you feel stronger and your heart is quieter.  Trying to push yourself after what you have just gone through might lead to worsening symptoms, worsening arrhythmias.  But how do I move on I hear you say?

Firstly, whatever difficulties you have had in the past on placement of your pacemaker, this should heal over time. It can take some of us months to a year to heal and to be pain free.   When my pacemaker was first implanted I sustained damage to a nerve/blood vessel.  I had quite a lot of pain across my collarbone going into both shoulders, particularly bad on left side.  I was given a low dose neuropathic pain med for a couple of months which helped while I was healing. 

Secondly, your symptoms of weakness may well be due to the A-fib.  It is a really nasty arrhythmia and I really know when it hits me.  If you can get your rhythm disturbances under good control you will have fewer symptoms, fewer ICD activations, you will start to feel confident again, to be able to make decisions about the future, including your job.  I would work with your doctors and ask them what other treatments, other than your ICD/pacemaker/medication, you could be offered to try to manage your arrhythmias?  Unfortunately medication is often tried first and can cause many unwanted symptoms and actually make us feel worse.  Have they spoken to you about having a catheter ablation for your atrial and/or ventricular arrhythmias.  An ablation, although more invasive, can be a more effective treatment than an anti arrhythmic medication to control an arrhythmia.  Any treatment that may stop an arrhythmia and therefore prevent your ICD from being activated during a fast, dangerous arrhythmia has to be worth considering.  I would perhaps go back to your doctors and consider asking them:-

 "in the absence of a firm diagnosis/cause for my symptoms/arrhythmias, what are my best treatment options moving forward"?  I am aware that an ablation can be a very effective way of controlling/stopping an arrhythmia, more effective than taking medication.  May we discuss all my potential treatment options, please?

You are so young to have to be dealing with this and I wish you the very best

ICD

by Julros - 2021-03-18 22:47:41

Hi Charlie. My son has had arrhythmias starting at age 35. At first it was atrial flutter, for which he recieved an ablation, and was considered cured. However he continued to have palpitations and after a holter monitor, was told he had intermittant atrial fib, perhaps a bout of myocarditis.  He did finally get another opinion at a major university and got tons more testing, including a PET scan, but still no definitive diagnosis. This left him unable to enjoy his competitve bicycling and hockey.

Finally he saw a geneticist, who after an extensive review of his symptoms and family health, he was told it probably wasn't genetic, but they offered him testing anyway. Well, he was diagnosed with a Lamin-A defect that puts him at risk for early onset dilated cardiomyopathy and ventricular arrhytmias. He had a pacer/ICD placed within a month. He has healed, but still dealing emotionally with the device. But he is biking and living life to the fullest. 

My advice is to see if there is a support group for ICD folks in your community. These are often younger people, such as yourself, who can offer support and perhaps helpful hints. When I did some clinical time with a pacer nurse, she facilitated such a group and there was a real bond among the members. 

I wish the best. 

Thanks everyone

by CharlieBuckets1 - 2021-03-25 09:48:01

Thanks everyone for your words and input, its really nice seeing the other side of the coin on this..and reaaally nice to have some genuine inputs and experiences to draw from..instead of the usual response from people who have no idea what im remotely going through.

...to all that have asked I've had ablations done and they turned up nothing..im waiting to get a 2nd opinion still because the hospital my next doctor works at is currently in the midst of a nurses union strike, and as a union guy myself i will not cross their picket line.

To crustyg...im a pipe welder and i do alot of stick welding..any ideas about that? I mean i do tig and mig as well but stick is definitely the big one. Ill try doing more research before i go conpletely nuts about it haha.

Taking it one day at a time

Thanks

Charlie

"Youngen" with an ICD too

by lildanishgirl - 2021-03-29 16:39:10

Hi Charlie! I don't know if I can help with a diagnosis but I just wanted to let you know that I'm a "youngen" with an ICD too! I survived a cardiac arrest (that came completely out of the blue) at work at the age of 32 and got an ICD implanted. My diagnosis was Arrhythmogenic Mitral Valve Prolapse. I hope you're able to figure things out!

Go Slowly....

by cjalaska - 2021-04-15 03:49:19

Currently I have a ICD after having an ablation done awhile ago, I don't really remember dates. I am on my second pm and I make a big deal of the location because I hike with a backpack. I have used a wire feed welder without any challenges. Running through the list of things that you aren't supposed to do..

I sleep with an electric blanket. Most days I can't feel it unless I am laying directly on it. I use tools in my garage, drill press, grinder, sanders, and table saw for woodworking. I use jumper cables without any problems. In the kitchen we have a induction cooktop stove. Lawn mowers and chainsaws are every summer items.

I can feel a flutter when I get too close to an old microwave. If I feel any of that, I just back away. Let the other person touch it. I ride my bike and have crashed a few times. It's just life. There are always going to be someone who will judge you by your habits or try and keep you from an activity that you love. Try going to the welding shop and see how close you can stand to someone welding. My dad has used a tig welder while I was watching and I could feel it but I wasn't going to pass out. Maybe a really heavy duty apron? I do know that the crush depth on my model is 70 feet so no more scuba diving, but I can use a snorkle.

As for the ablation, some people are sensitive but from my doctor, most are not. I was able to feel when she started to cut, It was an interesting feeling. Good luck and keep living.