First PM Check Up - medics on the defensive again!

I don't think I am very good at appointments - I have come away with very few answers to my questions and am not terriby clear about the changes that were made.

What I do know is that my pacemaker has been working less than 5% of the time (I think I should be pleased) between the two chambers. For a short time he turned the settings right down and I felt completely different. He didn't actually say he had done this but as I no longer felt my heart beating and my breathing felt better, I asked what he had done. He was really suprised that I noticed the difference! He then decided he would turn the rate response switch to medium level from low. But as I had already explained that my pulse was around 105 with only very gentle movement, surely this would made it worse. He then decided he would switch it off! Turn it up, turn it off! Doesn't seem very scientific. He has also turned down the electrical charge to each lead now that they should have stopped moving about - that seemed to make sense.

I have an appointment in 6 months but he will be happy to see me to make further adjustments if I think it is necessary. When I first went in and he asked me how I was getting on with the PM and I said I felt very breathless and tired, he straight away said that it was very unlikely to be he PM! Why do all the medics seem to go on the defensive if I only hint that I felt much better before the PM implant?

My cardiologist also asked me to ask the technician to give him a call while at my appointment but he insisted it was not necessary as he would be seeing him a bit later and would talk to him then. I am not in awe of doctors and am normally fairly well in control and understand what is going on. But this is different - maybe because it is a piece of equipment - rather than medication or surgery.

I can't get away from the feeling of well-being that I felt when the settings were turned right down (off). I now realise how horrible it is feeling your heart all the time - especially in my neck and fluttering in my chest. Oh well, I just hope these new settings will make me feel better.

Thanks again for this excellent forum.

Sue

7 Comments

having adjustments made

by VonnieVern - 2008-03-20 10:03:32

If you feel uncomfortable, you should continue to let your medical care providers know it. They should be able to make adjustments based on your needs. If the settings make you uncomfortable you should ask to have them changed, and if they are reluctant to do so tell them you want an explanation for why it is necessary for you to live with settings that are uncomfortable. Based on their explanation, you can decide if it is important enough for you to have to adjust to it, or insist that they change it. When I got my pacemaker, after a week or so, I found feeling my heart beat all the time rather bothersome. They adjusted my lower rate from 60 to 45. That helped me sleep better at night, but during the day I was very uncomfortable after walking around (not exercising, just walikg the halls at school). They turned off my rate response, and I felt much better after that. That may or may not be possible for you, but you should insist on trying something.

PM check & defensive attitudes

by harley63 - 2008-03-20 10:03:38

Sue, l can SO relate with you girlfriend!! I too usually am pretty on target with MD's & treatment plans..but now that it's me and my internal bling bling.. well I leave the MD office knowing less than when I got there and have no answers to anything!! I have telephone PM checks between MD office visits. Last week the PM tech said that "everything was fine". No other information, the end! I felt cheated out of quality service from a healthcare provider. However, PM check in December 07 I was told that I was using PM about 5% in the top ventricle and less than 2% in the bottom. Suppose that should be good news.. less risk of development of heart failure. My PM was placed, fitted or whatever term you like.. 12/19/06 due to acute onset of 3rd degree heart block. Looking back I'd say that the signs were there, I just kept on taking care of everyone and shook it off and yearly physicals didn't show any major problems and given "my age" MD's just felt that the fatigue was due to being my being a super Mom/Wife/Daughter/Friend and employee. Since the PM became a part of my body, I have experienced breathlessness or shortness of breath, which is greatly improved in the past year, upper body/arms aches/pains, numbness in lower left lip and left earlobe. My Cardiologist had me go to an outpatient rehab program - "Cardiac Rehab" for 4-6 weeks (I think) which monitored my heart while I slowly built up endurance & strength while exercising. That program was very valuable to me. It gave me the security that I needed to get moving again. Before my PM I walked 9 miles/day so being able to exercise was important to me. I've been sort of chasing a rabbit out here in the cotton patch with my story.. forgive me..back to you... you seem to be very organized, so start a list of what you feel that you should be able to do, or what you want to do, what level/quality of life you want to achieve. Take the list to the MD when you go and use it. It will take time to get there with just having PM inserted last month. I hate to say it in those terms.."it will take time" as I hated that phrase and still do. I've had to be assertive and map out to the MD's and PM tech's what my goals are for life and that I didn't feel that my current quality of life was where it should be. And don't dare give me a pill to take or suggest that I need to go "see" someone! My current Cardio MD is a tad fiesty, like me, and I just said, if we can't get on the same page, then just tell me now so we are not wasting each other's time. He impressed me the first visit, we'll see what he does the next visit. I just found this website (pacemakerclub) this week and I've learned so much already. My support system has been the cardiac rehab staff and my awesome husband. I wish for a local pacemaker club to see actual live people and what they can and have achieved. But this is great here as I can chill in the evenings w/my laptop and learn. Good luck to you and I'm here cheering for you all!!

Rate Response

by susanspurs - 2008-03-21 01:03:16

Thanks Vai. I probably didn't explain things very well. I felt good when he turned the PM right down and left it like that for a few minutes. He also made it go very fast whoich was weird. All the feelings came back when he put it back to its seittings again. It was then we started talking about the rate response switch which is now off. Maybe I feel slightly less breathless but I'm not sure.

I also seem to have some pain and a little s new swelling in the area of the PM since the check - could the weight of the magnet make things a bit sore again?

Sue

Sue...

by heckboy - 2008-03-21 01:03:40

You can get your PM adjusted as much as you like. Do not wait 6 months if you're not feeling great. My PM was functioning fine, but I was short of breath and and asked for settings change which helped. It took me 6 months and probably 6-setting adjustments on my first PM to get it where I liked.


Rate response???

by Swedeheart - 2008-03-21 01:03:50

Okay, I am a newbie. 3 weeks since my pacemaker implant. I am trying to decipher all the jargon... what is "rate response"? And why would it be turned off or on? Sorry to be clueless, if there is somewhere on the website that will explain this please direct me! Thank you.

It does seem I am not alone in not receiving adequate educational information about this technology I have in my body. What is the deal anyway? My hubby is a heart patient (cholesterol/blockage problems) and they have support groups at the hospital, education nurses, etc. But nothing for pacemaker folks!

rate response

by Vai - 2008-03-21 11:03:17

Based on your description, it appears that there is no critical need for your PM rate response to be turned on. At least your doctor seem to say it is okay "medium", "low" or "off". You also felt better when it was turned off during the interrogation and check-up.

You did not say if the rate response is still turned ON and you are still having these "unwell" feelings. If this is the case, I suggest you insist the rate response be turned off. If you want to play it safe, have it turned off and stay in the doctor's office or waiting room for a while, maybe a half-hour or so before you leave the appointment. Give yourself some time to guage how you feel with the rate response turned off.

I must keep at it

by susanspurs - 2008-03-21 11:03:47

I realise I am going to have to stick with this and keep going back if I don't feel right. It isn't easy as I feel maybe they are not REALLY listening to me. It is true that it is only six weeks and maybe I will feel stronger in time. But the breathlessness and the horrible heart beating in my throat needs to be sorted out.

Harley63, I have sent you a private message - look top right in the members menu.

Have a good Easter.

Sue

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