how do I get courage to speak up
Pookie and all, you seem so strong in speaking up. Eventhough I think I am an "informed" patient, having had 2 dual pacemakers in 5 months (leads malfunctioning) I find I am gunshy in speaking up. For 5 months I told them, something is not right, and I was told : everything is fine, give it time. But I know my body and can feel if there is no pulse for 3 seconds, then the heart skips happy along with 90 til 100, then goes to 46 or so.
So finally i collapsed on christmas day and had to be rushed to hospital. I am having an interrogation in 1 week and want to ask: is there a way to find out (X-ray?) if the leads have attached properly? My EP is the director of the EPdepartment and well respected. where does your confidence come from? i am scared it could happen again but I don't want to live in fear. Thank you for your encouragement. Any suggestions?
4 Comments
Wow
by pacergirl - 2011-01-14 10:01:50
How to speak up you ask? Well, it took me nearly dying before I spoke up! So, as a result I have decided that I would rather go having my say as opposed to being nice and polite. I respect my Drs. as well, but not at the expense of my wellness.
If you don't feel well, ask for a holter monitor for 24 hrs. The test will show what is happening or not. Ask your dr. to "humor" you if nothing else. I recently asked my dr. to do this and at first they didn't want to and then... I then I said something like this/ "I know you don't want me to kill over on your watch, so why not humor me and hook me up." They did just that. I got a monitor and sure enough it showed that my heart was stopping. It also showed that my PM was doing it's job as well! It is just that I can feel my heart pacing! I have lost some weight and now I feel a lot more than ever before.
So, in closing may I suggest that you forget being afraid. You are an adult and you deserve Good care. If you think there is a problem, insist that someone check it out. Part of being a good patient is speaking up loud and clearly about how you are feeling! Tell them that you understand that they can't read your mind so you are going to tell them how you are feeling. Then do it.
Hey, here is an idea... practice on us! Or your dog, or cat or whomever you trust. Practice makes perfect.
Wishing you tons of luck!
Pacergirl
I know how you feel
by Pookie - 2011-01-15 01:01:13
At first I was shy or intimidated or scared or felt rushed or ALL of the above when I was seen by my cardiologist or the PM Techs, the ER doctors, etc. But then I became very angry because I trusted them, I trusted the tests, I trusted everyone and every thing.....but I still felt SO bad....for way too long.
That is when I started to finally speak up for myself. I had asked questions in the past, but their answers went right over my head, so I left thinking I understood a bit of what they said, but by the time I got home I was more confused and ended up with more questions!!!!!!
So, I actually wrote down what I wanted to tell them in point form then I wrote down every question I had.....AND I brought my husband. He too then started to ask questions because we needed to understand things.
My advice is to write everything down that is bothering you plus any questions you may have and bring someone with you. Someone who is not afraid to speak to a doctor.
AND pass the doctor your list of complaints and questions!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Put it right in his hand or right on his desk.
And if you don't understand what they are telling you, you just have to tell them that you don't understand. It is your right as a patient to understand everything.
I know it can be intimidating and sometimes we even rehearse before we go to an appointment and then when we get there, we lose our nerve....but that is why you should write it all down & bring someone along.
It gets easier.....it really does.
Hugs,
Pookie
I agree with Pookie
by ElectricFrank - 2011-01-15 02:01:11
Write down your questions and symptoms. Give a copy to your doctor and keep one yourself. Have a copy with you when you go to see him, and make it obvious.
There is a lot less tendency to put you off if the doc knows you have evidence of his knowing about your problems. I carry one of the small voice recorders with me during visits. If asked what it is for I tell them I want to be able to listen to it later to be sure I understood everything.
I know it is hard to face off with a professional in a green coat. It isn't easy for most of us. I really refined my ability in 1999 when my wife was in ICU in a coma after her stroke. Her well being depended on me and I learned fast how not to argue, but to make my wishes very clear.
best,
frank
You know you're wired when...
Muggers want your ICD, not your wallet.
Member Quotes
I just had this miracle implanted two weeks ago and Im feeling better.
Yes
by agelbert - 2011-01-14 08:01:30
Thre certainly is a way to check lead position. X-rays are taken from different angles and then compared with the ones you got when initially implanted.
In addition, the interrogation report provides impedance and voltage data which signals lead proper or improper position. Huge threshold capture voltage requirement is another flag of poor lead position.
Good luck to you.