Well, I have to delurk sometime.

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

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ShortyTelameres
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Joined: August 7th, 2018, 11:30 am

Well, I have to delurk sometime.

Post by ShortyTelameres » November 30th, 2018, 12:28 pm

I'm a 64 year old male with Arrhythmia, a heart murmur, and a 25-35 percent ejection fraction. Got my ICD in July, still having problems with pain.
I"m not prediabetic, and I don't have coronary artery disease- my cardiologist said that was only 30-40 percent .
On Coreg and Lisinoprol for about a year now.

My complaint: My medical system does lousy patient education. I had to research everything myself , then check with the doctor's nurse practitioners .
Something I missed til 2 nights ago- that I shouldn't use the pull down machines at the gym even after the one month healing period is over. I have shooting pains the go from the upper left corner of the icd down my upper arm, and my ability to raise my left is limited. For about a month I thought I was better, I was doing jumping jacks at train stops, for the last 3 weeks thats become unthinkable.

Going back to the electrocardiologist soon, even though he seems like a salesman and a shade tree mechanic.

P.s. I'm a bit of a hippie, I tend to crash on friends couches- but that seems to aggravate it too.

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mykidsmom
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Joined: February 9th, 2012, 5:09 pm

Re: Well, I have to delurk sometime.

Post by mykidsmom » November 30th, 2018, 11:52 pm

Hi welcome to the crazy crew...I think you'll fit in pretty well....if youve been back doing upper body exercises before you should have...well no wonder you had pains...I think we all found we had to do some investigation on our symptoms & issues ourselves....Drs are just drs....we're a #1 to them....keeping well and healthy and aware is our job for ourselves it seems......If i had a penny for every time a dr tried to kill me with treatment id be sitting in the sun instead of trudging thro snow in canada.....You EF is good...and remember the Ef most likely refers to just one side of your heart generally....generally the other side is fine...the heart is the strongest busiest organ in your body...(right robo?) so it can put up with a lota stuff..are the meds helping with the arrhythmia?...what id advise for a bit would be more couch surfing....read and maybe have a drink while your doing it......and before you go to your drs again....write a list....ask questions....then next time do another list...maybe you need to get your own couch too????

lmao4dx lmao4dx lmao4dx lmao4dx
I think.....Therefore I am.!!!!!

Leedur
Posts: 351
Joined: May 24th, 2015, 10:25 pm

Re: Well, I have to delurk sometime.

Post by Leedur » December 1st, 2018, 12:34 am

Would have to agree that medical personnel don't give us enough info. Best to do all the research you can about our conditions. Don't remember being told that healing only takes one month and a Cardiologist friend at the gym told me to take it easy for 3 months. Pain is the signal we are doing something wrong. The saying "no pain no gain" does not apply here. Hopefully your doctor gives you good news. Delurking is a good way to get more information.

InSync
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Re: Well, I have to delurk sometime.

Post by InSync » December 8th, 2018, 10:08 am

Hi and Welcome! You'll find a lot of experience here and a perspective that docs can't share unless they have a device.
I get some irritation and pain from device to shoulder after some activity.....not so painful that my arm movement was restricted though. For me, it seems to originate in the area where the leads attach to the device. I've assumed it was irritation cause by device rubbing against the nerves in the area. I don't know that and have never asked. Let us know what your doc tells you.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

ShortyTelameres
Posts: 4
Joined: August 7th, 2018, 11:30 am

Re: Well, I have to delurk sometime.

Post by ShortyTelameres » February 12th, 2019, 12:11 am

I went back to the electrocardiologist, he said he couldn't do anything about the stabbing pain in my shoulder because I'm skinny and that's where the wires go in.
About the pain in my shoulder and upper left arm, he
said something fishy; he said EVERYONE comes in and thinks the icd is causing that pain, but it's usually a rotator cuff injury. HUH? How often does he see this?
My D.O. agrees with him and is sending me to a sports medicine specialist. I suspect I'm rolling my left shoulder when I'm half asleep in an effort to relieve the stabbing when I roll on it.
Post script: I was right, they DID tell me I only needed a month to recover.

Leedur
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Joined: May 24th, 2015, 10:25 pm

Re: Well, I have to delurk sometime.

Post by Leedur » February 12th, 2019, 7:58 am

My understanding is the healing period was to allow leads time to attach themselves to heart tissue. As for the shoulder pain, I have gone to a gym most of my life and have had some degree of shoulder pain for as long as I can remember. Did you never experience shoulder pain? Did it start only after the ICD surgery? I have learned to live with many pains related to joint areas and consider it just part of age related deterioration.

ShortyTelameres
Posts: 4
Joined: August 7th, 2018, 11:30 am

Re: Well, I have to delurk sometime.

Post by ShortyTelameres » February 12th, 2019, 12:30 pm

I think I was pretty physically active (gardening , trail crew) and I've never had this type of pain before. This isnt like greensticks in the spring when you start to work outside. I've lost mobility in my left shoulder. It isnt caused purely by my going to the gym either, because I was going to Planet Fitness forc a year before I got my icd and had no problem.
This isnt something can just work through, it's pretty debilitating.

dick
Posts: 345
Joined: September 4th, 2013, 11:49 am

Re: Well, I have to delurk sometime.

Post by dick » February 12th, 2019, 7:41 pm

Is your pain only on the left side? Are you left handed? One month seems a reasonable recovery period. Were you careful during that period-keeping the left arm somewhat immobilized? Some people have found there arm frozen by not using it at all. My young, healthy neighbor put together a foozball table for his kids at Christmas. He thinks he may need his right shoulder operated on-yep, rotator cuff.

You should not have pain and you should not have mobility issues because of the icd. Good luck figuring who to blame

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Ozchrissy
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Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: Well, I have to delurk sometime.

Post by Ozchrissy » February 12th, 2019, 11:59 pm

Hi Mate and welcome to the group.

I know that there was a limitation on what we could do after our insertion even to the extent that we had a Smilie specifically for it. :armdown: Now the common advice was to keep it keep it down for 6 weeks. OBVIOUSLY you took no notice of that by doing your normal gym work. :duh: OK I am the grumpy old woman who speaks her mind. wavhi

When the leads are put into our hearts, they go from the device which is just inserted under your skin, depending on the fat layer. You said you were thin, so probably not a lot of fat layer. If you feel the top of your device, you may feel the connections where the leads attach to the generator. You may also feel the leads coming from those connections and disappearing into your body, where they enter a vein/artery and then goes into your heart. The leads are then attached to the surface of your heart, which beats all the time remember so it is a bit of an active surface to adhere to. Can you imagine all the muscles, nerves and other stuff that I don't know about, that these leads have to go through. The generator doesn't move, but there are heaps of nerves and stuff in that area also. So it is not like having a simple operation but quite an involved process and it does take time for everything to settle down and your leads to attach properly to your heart.

Hopefully the sports physiologist will be able to detect what is happening. I love them, and they were always very helpful to me. He/she will be able to assist you or refer you back to the doc with a Professional opinion on what is going on, which hopefully the doc will take into account.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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