life with icd

Hi,


first I'd like to say that I'm really glad I found this forum.
Week ago I had an icd implanted, following a tachycardia. It was a messy affair, water in my lungs, pneumonia and a bacteria I picked up in hospital. Apparently they had to defibrillate me ten times.

Since I got home I read lots of posts on this site, but still have some questions...

In the Biotronik booklet it says it usually takes some 4 - 6 months before you're fully recovered and ready to start living ' as usual '. Does that mean I'll be able to go back to work in 6 months time ? Being an advertising photographer I often have to go on location, with a carload of gear, and we work almost around the clock.
Doc said I'll have to wait for my first kick before they decide whether I can drive, depending on how I react to defibrillation. Could I expect to be able to drive as before, doing 300 miles par day ?
I read stories where some people never got used to living with icd, and are constantly scared of the next kick. Others say they live as they used to. Also, icd is described as ' an insurance ' - does that mean you can really go on trips to the middle of nowhere ( opposed to stick to places where ER can come in 30 minutes if s..t hits the fan ) ?

I guess I'm just trying to come to terms with the fact my life will change...

Thank you for your answers :-)

4 Comments

I can't give you accurate info

by Theknotguy - 2015-05-15 11:05:43

Sparrow is correct. How people react depends upon them and their situation. I can't comment to your situation as I have a PM and not an ICD. Completely different as far as the ICD side.

Depending upon what happened to you before getting the ICD, your heart situation, and how your body reacts, determines how fast you'll be back on your feet. I was corresponding with a doctor, in France of all places, and he told me it would be a minimum of two years before I would be back to "normal". His prediction has been more accurate than I would like. But it has been nice to have his comment in the back of my mind when something doesn't go right.

As per Sparrow, you've got to find out what happens when the ICD kicks off. How that affects your life is yet to be determined. Once again I can't comment on the ICD side.

As far as being out in the middle of nowhere.... That's a very hard personal decision. I've had to weigh what I do against the feelings of my family. How would they feel if I was way out there and everything went wrong.

Sometimes when a door gets slammed in your face, a window opens. While it may be that your life as you knew it is over, It may also mean another opportunity has opened for you. While you are healing you may want to reflect on what you will do or might want to do if you can no longer be a field advertising photographer?

For me every minute is a bonus minute, every day a bonus day. That's in spite of limitations.

I hope your recovery goes very well.

thank you

by JackCarter - 2015-05-16 10:05:15

Thank you for your answers.
It is obvious that I'm still trying to come to terms with the whole idea of being seriously ill, and the changes I'll have to make.
I had the operation eight days ago, and am still afraid to move at some normal pace, it's very robot - like nowadays. They told me not to raise my left arm higher than horizontal for next 4 - 6 weeks, to prevent electrodes from moving. Today I fell asleep on my back while reading, and woke up with my both hands behind my head. First thought was - what if something moved ?
I know it's not a good idea to be paranoid, but I guess it'll take time to adopt all do's and don'ts.

I guess you're right, Theknotguy. Door closed, and I'll have to look for windows. Luckily, most of my work used to be studio based, and hope I'll be able to go back to that. I'm told it's very common in States to change career after 20 years or so, maybe that's what I'll have to do.

If you'd like to see what I do visit :

www.alanmatuka.com

Thank you again for your help :-)

It simply takes time

by Monarch - 2015-07-31 12:07:48

Hi, I have an ICD and have experienced many of the feelings and questions that you have expressed. I also have a photography business and prior to my heart failure would be out all day in the bush.
Give yourself time to adjust to your diagnosis, give your body time to adjust to having this lovely piece of equipment inside of it :) I was probably acutely aware of my ICD for about six months, and then a day would go by and I realized that I hadn't thought about it.
It will take your care team time to figure out how your heart will react, perhaps changing your settings as your physical health improves to allow you to be more active. They may over time adjust your medications until they find just the right balance.
You will need to find the balance between being sick with all of the restrictions that heart illness brings, and being "normal" and doing things that you love. Be careful not to overstress your heart , but still be active to keep its muscle as strong as possible. Again...a balance.

Once I started going back out to do my photography and I would be alone in the middle of nowhere, there were times when I panicked. What would happen if my device shocked me and there was no cell signal...all kinds of lovely thoughts. And, it was scary. So I put some "safeguards" into place to help ease my anxiety and that helps.

It is also difficult at times to adjust to the weight of your camera equipment. I carry a Nikon with a pretty big lens, plus a backpack with spare lenses, and usually have my border collie attached to me as well. My ICD side tires quite easily...so I have learned to adjust the way that I hold my camera. And, I have learned that I have to take breaks which I never needed before.

Hope this helps. And, good luck.

thanks

by JackCarter - 2015-08-19 02:08:05

@ Monarch

thanks or your comments, I've sent you a message...

You know you're wired when...

Trade secrets can be smuggled inside your device.

Member Quotes

I wouldn't be here if it were not for this amazing technology inside of me.