more counselling needed

hi everyone ive been bowled over by some of the stories i have read here. so many people have gone through so much it is hard to think that they just keep going.i thought once i had the pacemaker fitted it would all be over and done with operation wise. in three days i go in again to have more procedures done i wasnt expecting to have to do this again.i suppose i hadnt really thought about it.i had to make the decision to have one very quickly and i had no counselling . when all said and done it is a life changing thing. one that you are stuck with for life.i think there should be more advice and help in the medical profession. i went home without any information or help i had to work it out for my self i wish i had found this site earlier. i find the not sleeping the worse thing to handle i was always a good sleeper before and for nearly 3 months now i have between 3-4 hours sleep a night and its really getting to me . i have also put on alot of weight could anyone tell me if they have the same problems its lovely to know that someone cares. i was looking forward to talking to like minded people in the chat room but there is never any one there

6 Comments

you got that right

by jessie - 2008-09-27 03:09:59

that is why we have the p.m. family. everyone here knows how we feel as it is us who have one or the other or both. not sleeping can increase weight as you are eating more in the wee hours is what i think. mine was an e.r. thing with no prep just put in ion a hurry a temporary one. no one in the meduical profession has ever discussed this with me. i have had no problems and i am 20 years older. just came back from europe . went on a cruise to 5 countries. very nice. i just try to forget about it and live my life. if it wasn't for it there would not be a life. my pulse was in the 20's and i had 3rd degree heart block. i don't know why they implanted it so near your arm pit. i am not uncomfortable. sometimes it is a little sore when i am doing a lot of physical work. otherwise no. i sleep on my left side. my p.m. is on my right. usually tho it is on the left. hope this helps. i don't think much of the dr. saying you have to put up with the pain. that is just plain crap. there should be no pain for the most part after about three months. so i would keep bugging them. get another opinion. pure nonsense. jessie

Counselling

by Pookie - 2008-09-27 10:09:02

Hi Alice.

You are 100% correct when you said that having a pacemaker (or a defib) is a life changing event. Unfortunately, most doctors don't consider our devices, let alone the surgeries, as something major. I suppose it's because thats all they see day in and day out.

Regardless, I agree with you...there should be some kind of counselling before and after these procedures, but there is not...not where I live (Nova Scotia, Canada). SO... that is why I searched and found this wonderful site, thank goodness. The support and encouragement I have received here is staggering. I truly don't know where I'd be mentally without everyone here. So, on that note...thanks to everyone who has supported me!! I appreciate it.

I too could not sleep well so I spoke with my family doctor and have been taking a sleeping pill which is a life saver. A good pillow helps too!! You need to get an answer to your sleeping problem because lack of quality sleep can effect every aspect of your life!

Another suggestion would be to talk to your doctor IF you are experiencing stress and/or depression as they can help. I also put on some weight after having my pacemaker but I truly believe it was because I found food being a subsitute for my depression and stress, also I wasn't very active.

There are answers and help out there...you just have to go find it. But the biggest step you've made (in my opinion) is just being here and asking for help and suggestions...then, if ever you need to, you might be able to share it with the next person.

And just to let you know so that you know that you're not alone...prior to my surgery, the doctor said it was not major and that I'd feel a lot better, the recovery time would be short and I might feel "uncomfortable" for a few days! Well, not true, not true, not true, and not true. I am okay now but it did take me a good year to feel "normal" again. Everyone heals at a different rate, etc. So, I guess what I'm saying is that we learn to be our own advocates! Research and ask lots of questions. Knowledge is power. (I stole that from Oprah!!)

Good luck and keep us posted. and oh...I'm usually in the chat room at night...hope to see you there sometime soon.

Pookie

Counseling

by Ladybrack - 2008-09-28 05:09:05

I agree that more counseling is needed prior to or at least immediately after PM implants. I was told NOTHING about what to expect and when I questioned at a check-up was told you should read the manual that was given to me prior to leaving the hospital. It has been a little over a year since my implant and I still have times when yes, I do worry altho I am very grateful for the PM. I have since changed doctors but still do not trust him. I have been through counseling which has helped me very much and still go when necessary.

Sharon B.

Exactly Right!

by bobad - 2008-09-28 09:09:32

Yes, the docs should tell you more. Unfortunately, sometimes they don't know a lot more. In many cases, I think all they know or care about is that a pacemaker is indicated for your symptoms. Beyond that, you're on your own. In other words, the docs feel they should only be involved with diagnosis, surgery, and occasional followup exams.

Never mind that the pacemaker makes you feel different. Never mind that it causes strange chest and head sensations, pain, depression, anxiety, complications you never dreamed of, and even family problems.

All we are told is "There can be surgical complications, .2% lung puncture, .5% infection" or whatever. All they want to discuss is he surgery, not discuss living with the infernal device long term. Just reading around on this and other forums, it appears that no less that half of PM recipients have complications of some sort.

I don't want to discourage or frighten anyone. PM'c can be a wonderful device that can save your life or at least improve your quality of life. The docs will say they didn't promise us a rose garden. But they also didn't warn us about medieval practices complete with pain and torture, either. They didn't warn us about waking up during surgery, hemorrhages, hematomas, painful oozing wounds, multiple surgeries, antibiotics that make snake venom look mild, damaged shoulders, multiple trips to the ER, no prospects of near term advances, and absolutely stunning medical bills.

I think someone should spend a significant amount of time with you, telling you not just the benefits, but the pitfalls to living with a pacemaker. Not that you have any choice in the matter, but at least you won't be blindsided like many of us are.

Best of luck and health,,,

Weight gain!!!!!

by pacergirl - 2008-09-28 10:09:13

My goodness, I have been trying to loose 10 pounds for what seems like forever!

For me it seems that I cannot take generic medications. For some reason they just don't work! I was retaining water and getting fat. My docs were telling me to loose 10 pounds and I was telling them I eat like a bird and because of the ziac I can't get my heart rate up! So what is a poor girl to do?????

After a heated discussion with the thyroid Dr. she figured out that the insurance company would only pay for the cheap pills for me. So now I am on the expensive original pills and feel a ton better! I have lost 6 pounds as of today and about $50 a month!

So yes, the medical profession needs some learning lessons on how to help us be healthy after we leave the hospital with our new computers. A followup training/support group would be nice.... we could serve healthy drinks... I am thinking something with a flower it it! he he... yes of course as decoration!

Pacergirl

thank you all

by alice G - 2008-09-28 10:09:34

thank you all for your care and concern it was lovely to read your messages. as you say they arent worried about how your going to cope .i had the operation and i was out early the very next morning no advice or anything sorry a leaflet with very little information on it i didnt even have my pacemaker checked before they sent me home. within 2 days i was at the doctors and if they hadnt changed my bandages they wouldnt have known that my stictches had come undone and my chest was laying open. they told me to keep the dressing on for 5 days it was waterproof and that was it . i had a infection and had to keep going back to the doc for 3 weeks with pains in my chest and feeling terrible. i felt let down and fed up with it all i had no one to talk to or explain. you might be right about the weight gain to do with depression. i dont think i have felt so lonely and low in my life.when i said it was early to go home the lady said that my bed had already been filled before i had even left the building. and they have to do so many operations in a week. which made me feel worse they just didnt care... i wish i had found you 2 months ago... well i have now you have made me feel better in the 5 days since i have joined as you said you do know what iam going through and iam thankful for that.iam pinning all my hopes on this next surgery maybe i shouldnt i just want to get back to some aspects of normal life if i remember what that is.

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So, my advice is to go about your daily routine and forget that you have a pacemaker implanted in your body.