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Posted by mz-pink on 24-Jul-2011 19:30 Report
Anyone out there living with a ICD??? (Implantable Cardioverter Deibrillator)
Hello all,

Recently I got struck down with Pneumonia and was hospitalied for 2 weeks. During my stay at the hospital, doctors noticed I had an abnormal heart rhythm which I was then monitored on a heart rhythm machine where they put those sticky dots and give u like a monitor to carry around 24/7. Anyhow, the doctors did furthur investgations and came to the conclusion that I  have VT (( Ventricular Tachycardia ))) so the best treatment for this conditions is to have a ICD. They wanted to do it there and then while I was in the hospital being treated for my pnemonia but I declined and refused to sign a consent to the procedure because I was shocked at the news I had recieved ( mind you I went to hospital for one thing and then another thing was discovered) and also I did not know what an ICD was and didn't quiet understand as to why I needed it so I told the doctors that I need to absorb this new information as it is a big shock to me and so unexpected and also I want to go home and research more about it and talk to my family about it.

I now know why the doctors have decided this treatment for me and it is for my own good and benefit and I would be foolish not to go ahead with the procedure because the risks of not having this device in me is absolutely frightening and just not worth it, I don't want to drop dead by a cardiac arrest or be brain damaged if survived from cardiac arrest.

I am booked in for the procedure in 2 weeks. I am so terrified and I don't know what to expect and how my life will be after this device is implanted. I just turned 30 recently. Some feedback on any members on here who have been through this journey would greatly appreciate it. I just need to know that I am not alone and hopefully someone out there knows what i am going through at this time.

Thanks in advance.

mz-pink
 
Replied by yobbo1 on 24-Jul-2011 20:02 (Ref 2305331) Report
G'day mate...
Where are you and what hospital...?
Lily
Replied by cintra on 24-Jul-2011 20:18 (Ref 2305338) Report
Hi,

I recently had the Holter Monitor also for 24 hours, I'm not sure what it picked up as I haven't had my cardiology appointment yet, but I did have Atrium Fibulation a couple of years ago where they were going to briefly put me under to shock my heart back into proper rythm.  Luckily after about 27 hours of it and a few different medications, my heart suddenly went back to normal.  Heart problems surely do scare you, especially their treatment methods, but you really are in the best experienced hands and should follow their advice.  My heart beats normally for a few beats, then slows down to almost a stop, then heavily thumps back in, it really scares me, so hopefully they can find out whats wrong with me.  I know nothing about your operation, but I wish you luck with it, just know you are in good hands.

Cheers
Cintra
Replied by mz-pink on 24-Jul-2011 20:30 (Ref 2305341) Report
Hello Lilly.

I am in Melbourne, and Alfred Hospital is treating me :)

I'm just so scared... I feel so alone, when I was in the hospital on the Cardiac Ward I felt like I was the only young person there as I only saw elderly patients on my side of the ward :((


Lidija
Replied by mz-pink on 24-Jul-2011 20:39 (Ref 2305343) Report
Cintra,

I appreciate your reply. I hope they find the right diagnosis fr your condition because when it comes to the heart it sure will scare anyone out there.

The saying " everything happens for a reason " i have always believed in this saying ... however I now believe in it more than ever now because I had never ever had previous pneumonia and it felt like i was meant to get this pneumonia and be hospitalised so this condition can be detected by the doctors and treated before it came too late.

I just wanted to talk to someone who has had this procedure done and what were their feelings, emotions, thoughts about it being done and how it has affected their life after it.

I can't believe how common heart disease and disorders have become in young people in this day and age.....

Lidija
Replied by yobbo1 on 24-Jul-2011 20:55 (Ref 2305344) Report
Mate....your in a good place as far as treatment goes......
All I can say to you is.......'ask as many questions as you can think of before hand...as it may help you to understand what the proceedures are etc...and also do as much research as you can so that it may help you to not only understand by also to familiarise yourself with proceedures and post op requiremnts etc.
I have hicups with my right ventrical but I have medication to control this problem at this stage.
You are lucky that the problem was discovered mate.........so in there lies a blessing.
These specialist know what they are on about and you can only be guided by what they say.......they are the experts.
It's the not knowing and not understanding that is the problem and makes it all so scarey for you.....once you know...you will understand what has to be done and know that it is for the best.
Being scared is OK too....but know that you are not alone. 

Age is irrelivant when it comes to problems with the human body.....you don't have to be old to have something go wrong with your heart. You just have to be lucky to have someone discover the problem so as they can fix it.

Keep talking mate......Lily
Replied by junkyardmomma on 24-Jul-2011 21:09 (Ref 2305349) Report
Hi mz-pink, my son was 17 years old when he received his ICD. It was 4 days before Xmas and we were panic stricken.

If the doctors are offering you an ICD then there must be strong evidence that you truly need one as they cost $25,000 to $30,000
The reason my son has an ICD is because my daughter (who was 19 1/2 at the time) had a cardiac arrest whilst down the street with friends.
After a week at the RMH, her battle was lost.
We were devastated to find out that it was an undiagnosed genetic heart condition
Even more devastated to find out that our son has the same condition.
My daughter was perfectly healthy, not even the normal childhood diseases.
My sons lifestyle has not changed. There are of course things to be aware of, which your doctors will tell you (and I mean simple things like magnets as they can affect the device. So no magnetic underlays!!!!)
I don't want to alarm you but an "out of hospital cardiac arrest" is nearly always fatal. I have read far too many statistics in the last 2 years. I even watched a short video showing a soccer player (has an ICD) have a Sudden Cardiac Arrest. He jumped straight up & wanted to keep playing. That one reduced me to tears -


My son had his ICD inserted under "twilight" anasthetic, then a full anasthetic for a couple of minutes so they could stop his heart & test the device. He came out of surgery wanting food..... immediately. He was released from hospital the next day.
Annual checkups & a battery replacement approx. 7 years after insertion.

I would give anything (read everything) to have known about this genetc condition.

My daughter would still be here if she had an ICD



My son has a Medtronic ICD If you want to read some facts about ICD's then go to their website.
http://www.medtronic.com.au/your-health/sudden-cardiac-arrest/device/index.htm
This is the electro magnetic compatability guide.
http://www.medtronic.com.au/wcm/groups/mdtcom_sg/@mdt/@crdm/documents/documents/electromagnetic-compatibility.pdf

My best wishes to you ~ ........ momma
Replied by mz-pink on 24-Jul-2011 21:31 (Ref 2305350) Report
Momma,

Thankyou for your reply and I send my condolenes to you and your family about your daughter. Like you said only if your daughters condition was discovered earlier and she recieved the right treatment she would still be here today. Also as for your son, I am glad to know that he is doing well and living a normal productive life. Yes,  have read up about the device itself and it says to avoid any magnetic obstacles.

May I ask is your son's device implanted sub - dermal ( under the skin ) or sub pectoral ( under the muscle )?

I have requested for a sub - pectoral because i don't like the " protruding bulge " of the device look under the skin.

Thankyou for the links i will read up on them.

I wish you and your family all the best in life

Lily, I have been reading up on it and doing research about it and I have a pad of paper which I write down all the questions I want to ask my cardiologist.

This past week I have been reading non stop about it and i have educated myself about this device and why it is important. to have it because it is a life saver!

Life is too precious and I cherish every day of it.

I will keep an update on this post... so for any of you who want to follow it, please feel free to do so.

I really appreciate all your replies and will keep you posted on the situation.

Lidija :)
Replied by junkyardmomma on 24-Jul-2011 21:51 (Ref 2305352) Report
Hi Lidija, my sons is under the skin. You can see the bulge.

You & my son may never need the assistance of your ICD's but what a relief to know it's there if needed!!!!

I had a giggle at your comment:

"I feel so alone, when I was in the hospital on the Cardiac Ward I felt like I was the only young person there as I only saw elderly patients on my side of the ward :(("

We went for my sons first checkup after surgery. The waiting room was full & I was sitting 4 seats away from him. A text message arrived on my phone & I was wondering why my son had sent a text across the room. I laughed when I read it and have kept it in my phone.

"Love how I'm the only one under 60"

Hate to say it Lidija, but if you had been in that room too, at just 30 years of age, he probably would have classed you as old too!!!


.......momma
Replied by mz-pink on 24-Jul-2011 22:03 (Ref 2305364) Report
Momma,

You made me laugh with your comment. I felt exactly the same as your son did during my time in the hospital. lol

Even though I just turned 30, people think I'm in my early 20's, I don't look 30! ( which is a awesome thing ) one lady at the hospital who was in the next room asked me how old I was  because I looked " like a teenager " to her.

Oh, such is life... but at least the nurses that looked after me were young and around my age, most of them would come into my room for a chat and a laugh because they knew how bored out of my brains I was in that place :)

I feel so much better talking to people like you and the rest who have replied, it has eased my concerns and soul.

: )))
Replied by nefer_sold on 25-Jul-2011 00:48 (Ref 2305376) Report

mz-pink - wishing you well with your surgery.

You should try being in the rehabilitation section of some hospitals - no one is under 80 and most recovering from broken hips - I had to spend 3 weeks in one after a major illness a few years back when I was 40.
Replied by ginger-puss on 25-Jul-2011 06:52 (Ref 2305386) Report
Mz Pink my neice who is now 11 years old as a Pacemaker which is similar to an ICD.  She got hers when she was only two.  This girl is a very active girl with swimming, netball and many other activities.  She is to get her first replacement in a couple of weeks time.  You would hardly know she has one as the "bulge" is not noticeable.

My mother has one also - she wnt in for a pre op check for a hip replacement and said she needed to get one before they operated.  She was 72 at the time and still going strong with it.  She said it felt strange with it implanted inside her but you eventually get used to it being there.  Really it is not worth stressing out about as you will have a great team to guide you through.  Talk to your doctor or specialist and ask as many questions you like.

Good luck.
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