just want to know how other people have coped

hi im 42 just had pacemaker fitted 5 weeks 2day and was told id feel better straight away and im not havent collapsed since but still feel tired have no energy and still sore inside i had heart block 2 and have had a dual pacemaker fitted thats all ive been told the surgery took 3 hrs i have a high clavicle deep veins and the surgeon said things were in the wrong place so the pacemaker is nearly in the middle of my chest just on the outside of my right breast but i still have to sleep sitting up as to uncomfortable to lay down i was to scared to ask any questions at the time as they called consultant in gave me 2 angigarams and fluids tipped me upside slightly then gave me a relaxant was told the next day when i left hospital to try getting back to normal but dont wave arms around 4 6 weeks no booklets nothing i got follow up appointment 3rd feb but just wondered how other people have coped sorry to have gabbled on

8 Comments

thankyou both for imformation

by fiona frisby - 2011-01-19 06:01:13

i was begining to think it was just me being awkward and imagining things i dont think anybody knows how u feel unless they have had it done i think family and friends r giving up on me because i told them what i was told that i should b back to normal straight away i think they think im milking it which is also getting me down just want to get back to normal but pain and tiredness wont let me thankyou 4 understanding and also reading these ill know what questions to ask when i go 4 follow up xxxxx

Be patient

by drashmore - 2011-01-19 07:01:35

I had mine put in on Dec 14th, Two weeks later I was in having a lead reattached due to my coughing with a cold when I came out of the hospital the first time. Last week I couldn't walk around Walmart with out the bottom number of my BP dropping to 42. I felt like I had someone sitting on my chest. They immediately pulled me off the BP medicine one of the cardiologist in the practice had diagnosed. My PM doctor(who is a cardiologist) has agreed to watch my BP over the next month. Today I'm feel totally different than I did just a week ago. I'm actually thinking of going back to work next week. Hang in there and be patient it will get better, from a person that been there. Just keep questioning them.

Awe...how I coped

by harley63 - 2011-01-19 10:01:39

Hello Fiona~

THIS site helped me cope with my new life with a pacemaker. Many many great folks here to help support you along the way and to cheer you along.

I found it difficult that the people who lived around me did not have a pacemaker at 43 years old. They all acted like I was going to break in half and was fragile. So turning to people who were also walking the walk and living the life of having internal bling bling was heaven (no pun intended).

I also called Meditronic and ordered up a set of pacemaker manuals. That helped a lot too.

And only other advise...I forced myself to only think positive thoughts. I'm an optimist 90% of the time. It's normal that we have the negative poor me thoughts and I allowed them for a bit then back to YeeHaw, I'm alive and upright with a pulse and WILL move forward. But that is just me and how I coped with my 'emergent' placement of a pacemaker, dual chamber, at 43 years old just into 6 months of heavenly marriage with NO warning for 3rd degree heart block of quick onset. So they say.. but I have my doubts. I think that there were signs for many years and just due to my age and "energizer bunny" personality the symptoms were dismissed.

So... I will dust off the pom poms and cheer for you from dusty, windy Lubbock, Texas....

Zoom, zoom
Harley63

I was scared too

by 6efrau - 2011-01-19 11:01:24

Hey Fiona
I am 42 also and my pacemaker was implanted back in September. The doctor told me that for the first 3 months I would have more bad days than good days. He told me that initially when the pacemaker paces your heart, it sucks the energy right out of you the higher the voltage is set. He said once they dial it back it would get better. I couldn't wait 3 months so at 7 weeks I called and told them I needed to come in because I couldn't continue to be so tired all the time. They went ahead and brought me back in and dialed me back. It definitely helped.

I basically slept sitting up initially. If you can call it sleeping. The doctor told me not to try to rise up, but rather to roll to my right side in order to get out of bed. Anyway, slowly over 10 weeks, I lowered myself until finally I was able to lay in bed.

Call the manufacturer of your pacemaker for booklets. I did.

It hasn't been easy to adjust, but eventually you do. My kids and husband have had to help out more around the house. Somehow you develop a new routine.

Take care.

It just takes time

by AmyS - 2011-01-19 12:01:51

H Fiona,

So sorry to hear about your experience. It is very difficult to deal with this when you have very little information, no one to ask, are in pain and can't sleep. It all compounds to make us more than a little on edge.

I did not have a difficult implant,as you did. Everything was pretty normal as far as positioning,etc and the incision and pocket heeled well. The pacing was very uncomfortable though and I was able to go in 4 days after the implant and have them adjust the settings. He found multiple settings that I didn't need turned on and switched them off. 5 days later I went back in and he found that I was still being paced way too much. I have 2nd degree heart block like you do, and really, we don't need pacing as much as some do. We just need it to kick in occasionally when we get a skip. Your PM is probably set for lots of pacing and it definitely needs to be turned way down. If possible, try to go in before Feb. 3. If they turn off the settings that you don't need, you will then be able to forget about the PM more and readjust to normal life.

I am now 8 1/2 weeks out and I am just now feeling like this thing isn't going to be a problem forever. I never feel the PM working anymore, it's just the collarbone area occasionally. Good luck and write back if you need someone to "talk" to. --Amy

6 months

by mooremail22 - 2011-01-20 06:01:10

Hi,

It took me about 6 months to feel better regularly.
I just turned 40 and have had my PM for about 15 months.
I do feel better most of the time, but I still have down days.
Those who are caring for you sometimes need to be reminded that you must rest so you can get better. 5 weeks after a PM implant isn't enough recovery time to get you completely back on your feet. Any surgery needs months, and up to 6 months. I have young children and they just understand that I have many more good days than I used to. When I am up, I get busy, but when I am down, let me rest so I can get back up sooner. If I don't let myself rest when I need it, it seems to take much longer to recover.
It took me about 6 months to just get used to the whole idea of all that I've been through. Now, I can finally go a few days without thinking about my PM.
Hope you get back to normal sooner than later
=)



wow

by walkerd - 2011-01-20 06:01:19

I cant believe you didnt recieve a booklet with your pacer in the hospital. I recieved the booklet, a wallet card with the pacemaker Id, model number, lead numbers and model on the card. I read horror stories on this site to what some members go thru with operation and thier doctors I thank god that Ive had the good fortune to have a fantastic cardio doctor. I would call the doctor who put the pm in and ask why you didnt recieve a booklet on the pm when in hospital, it contains alot of info on the company how to contact ect.... well at least mine from Medtronic did.

keep the faith
dave

Heart Block 3

by Jonn - 2011-01-20 08:01:42

Hi Fiona-I have a Medtronic pacer (adapta dr) that was implanted nearly 4 yrs ago. Prior, I was diagnosed with heart block 3. Passing out without notice. Once pacemaker was installed there was no problem. Must admit I did not have problems with the procedure or implant. Took 45 minutes. Mine is located on my left side just under the skin just several inches to the right of my left shoulder. The doctors (surgeon, cardiologist, medtronic rep) went to great lengths to explain the entire experience. The hard part was getting my mind around the fact that there was something foreign in my body. Took me about 6 months to come to grips wit it. Finally realizing that it was sort of my guardian angel watching over me-especially during the night. What ype of pacer do you have? I would definately have your surgeon, cardiologist and pacemaker rep explain everything to you. It is your right to know everything so as to make an informed decision. Hope this helps-as my cardiologist told me the pacemaker is not meant to subtract from your quality of life. It is there to give you your life back-never to take away.

You know you're wired when...

Titanium is your favorite metal.

Member Quotes

I'm 44, active and have had my device for two years. I love it as I can run again and enjoy working out without feeling like I'm an old man.