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First ICD, journey has begun.
Hey everyone, my name is Joe.
I will be 50 this year, 2 kids and a beautiful wife.
In June of 2015, I was diagnosed with congestive heart failure. Echo showed a estimated 15% EF. Heart cath - no blockages. No signs of diabetes.... Nothing.
It was determined mine was caused by a virus that severely weakened my heart.
I was placed in a zoll lifevest.. Yippee..
Started meds of coreg, spironolactone, lasix, potassium.
3 months later I have dropped nearly 50 lbs.(water weight) I am now at 185. Went thru several med dosage changes over the last 3 months. I just had my 2nd Echo done and ol sawbones informed me my EF is 20%. And that I need a single wire ICD implanted. Despite feeling good most of the time throughout and hoping for a EF above 35, just was not gods plan for me.
Having a hard time excepting this and having something implanted in my chest is causing a sleepless night, found the forum and hope I can make some friends to help guide me thru this journey.
6 Comments
Thanks Guys,
by JLK - 2015-10-02 06:10:06
The initial shock is beginning to wear off and coming to terms with getting one is sinking in. I am blessed with a great cardio/Ep.
He recommends the Boston scientific also. I asked him to see it and he said , you have seen a car battery and jumper cables before... Lol.
Y'all make some excellent points, thank you knotguy I had knot thought of it that way and as my EP said think of it like a seatbelt. Lurch, like you my icd should be the least of my concerns, I am hoping with meds and time my quality of life does not diminsh, My new normal is just going to take a little time to get used to. Living with a EF of 20% is a bit concerning.
As to Joe W. I am on the coast of northwest Florida, between the blackflies and skeeters I wouldn't count that out!
I am calling him first of next week to schedule it, no sense in waiting. I was told its a relatively simple procedure, done as a outpatient, and recover time is usually 2 to 7 days. Is this inline with y'alls experience.
Different set of worries, I realize there will be pain associated with healing, and everyone is different. Is it manageable with Tylenol / ibu?
I hope to document my journey and be a asset to the forum.
Thank you for the comments,
Jlk
Thanks Robo
by JLK - 2015-10-02 06:10:40
Ol doc. said the same thing as to why I am getting one. I may not be able to play tackle football with junior, but I can at least watch him play.
It's always a shock
by Theknotguy - 2015-10-02 12:10:41
It's always a shock. You think things are going to work out one way, then they go another.
As for medical equipment being inside of you, that does take a while for you to wrap your mind around it. However, a lot of people wear glasses. We don't think a thing about it. People get lens replacements in their eyes to fix cataracts and we don't think a thing about it. There are hip replacements, knee replacements, ankle and shoulder replacements. We don't think a thing about it. Pretty amazing stuff. Why shouldn't we get something to fix a problem caused by a virus? Just because it's inside you isn't any more amazing than anything else.
What to do now? Educate yourself about you ICD and living with your heart problems. It may not be the life you'd like but it's the one you got. See if you can work closely with your cardiologist/EP and become a part of your solution.
It's a big world out there. You're being given a second chance to enjoy it.
I hope everything goes well for you.
viral cardiomyopathy
by Gulf - 2015-10-02 12:10:46
Hey Joe,
I'm from Mississippi.and I was alco diagnosed with viral cardiomyopathy. It must be the mosquitos down here in the south. I understand your concerns. It does take a little time to get used to the idea. My twin lead Boston Scientific was installed in May of this year. So, I am new to this club myself. The best thing you can do is accept it and move on. Though, it is only been a few months, I find myself forgetting that the ICD is in there. I think part of that is the fact that it gives me some peace of mind.
Joe W.
Good luck and probably soon to follow
by dhusemann - 2015-10-03 02:10:18
Been wearing the Zoll lifevest since early August. Monday I have the 4th Echo in the past 3 years when I had the initial HF.
Initial HF, ef was below 25%, in ER, Got out of hospital, and had a business trip planned already to Maine. went on that trip and struggled through the trip, returned and my cardiologist moved out of state soon after.
after finding a new cardiologist, discussion about an ICD, that is when I initially join this fine community. did a follow up echo, after 7 months and EF was at 43%.
about 3 months ago, woke up, in middle of sleep very nauseous and barely made it the restroom. and the tell tale signs of build up of fluid in the body I recognized from the first heart failure. Trip to Doc and we did a Stress test with Echo. told not to take my coreg as it would prevent my heart rate to rise. did echo my blood pressure was 170/110, they normally don't do a stress test above 100 on the lower number, think it was like 3 mins monitoring and I was so winded. Echo before and after was in the 20% range.
Again talked about ICD. but just talk about highly recommendation. Wasn't until I talked to my Cousin who works as a Rep for St Jude Medical, about the increased chances of a SCA that I decided to start down the path of and ICD, that and the death of my father last year to SCA.
App with EP, Zoll LifeVest,: follow up Echo Monday. and Follow up appt with EP oct 12.
did an heart cath showing no blockage after I woke up and felt like my heart was going to dance out of my body about 6 years ago. BP then was Very High. don't remember the exact number but know the low number was above 200.
Just recently CT scan checking for blockages and came back with less then .1%.
we still don't know why my bp runs so high. (many a test for that over that past decade)
I will turn 48, this year, wish I knew in advance how bad I would feel with CHF, I would have took my meds no matter how bad they made me feel (during the time I had a job past 10 years been tough).
You know you're wired when...
Your kids call you Cyborg.
Member Quotes
I wouldn't be alive if it wasn't for pacemakers. I've had mine for 35+ years. I was fainting all of the time and had flat-lined also. I feel very blessed to live in this time of technology.
Welcome Joe
by Lurch - 2015-10-02 01:10:27
I was assimilated about 16 months ago. Had my ICD implanted at the local hospital. spent the night to ensure that they made a little more money from my insurance, then came home and started my life with the device implanted.
I must admit I was a little concerned about what my life would be like with this thing inside of me, but I have found that the device itself is not really limiting at all. Now, the heart disease that prompted its insertion, that's a different story.
Within about six weeks I was bodysurfing with my Grandson. I have CHF so it slows me down, but the ICD does not.
If you have any questions or concerns, or just want to know what to expect with the implantation, let us know. Lots of very knowledgable and experienced folks here.