still having problems

hello again all,
I saw my cardio on thurs....I dont know.. I feel like I too may be getting the runaround? I still am short of breath and have leg pain when I walk even short distance. I went for the doppler/duplex tests on the legs today- I was told arteries and veins look good. Cardio has me scheduled for stress test on the 17th and a complete pulmonary function test on the 11th.
Well, I guess he is trying to get to the bottom of this. But he had said to me that it probably isnt related to my heart or the PM? He said it may be fibromyalgia? I said that I never heard of shortness of breath with fibromyalgia. He said it can? Ever hear or read that ?
He has not mentioned anything about settings. I didnt mention it because I didnt feel like he was receptive to my input. He said I would probably need to go to a rheumatologist.
They dont tell me anything.all I know is my pacer is set for 60 low and 120 high ( I have ALTRUA 20 model S203) and they say I am pacing at 100% thats it!-oh and I have Guidant leads 2 different ones.
When I had the phone check it took only about 2 min and she said "thats it!" and hung up !--no word of this is OK or nothing!
I dont see the Boston Scientific guy until June 12 ! Maybe I am just fretting? I want to feel better NOW! Its so hard to do everything! Especially work! but I must work because I must keep the health insurance. I like to work but its just so hard right now. The cardio said- " I dont believe we will find anything that will be considered a disabling condition." I think maybe he thinks I am trying to be disabled or something? maybe he thinks because I mention work I am trying to get out of it and get on disability? Gee- I hope not. because its not true. Maybe he doesnt understand where I am coming from? He is like from Pakistan or India or someplace like that.I am the breadwinner for my family I gotta keep going! gotta keep paying stuff!
Anyway I guess my question is Do all Pacemakers have these settings that you all talk about? I looked mine up and it looks like I have the smallest/simplest model.
Thanks for reading folks and so sorry this is sooo long --I just had to talk to somebody!

3 Comments

never have heard of that

by jessie - 2009-03-06 11:03:35

i have never heard of sob with fibromyalgia. i have copd tho and i can be short of breath if i am with a chest infection. otherwise i am good. i know exercise and walking helps. i admire you for going out and doing what needs to be done for your family. we never know what will be expected of us. i hope you can find your answers from others. you could be right on about the dr. his cultural background could influence his thoughts on what is happening with you. keep on bugging him and tell him what you need and what you are doing to keep it all to-gether. jessie

Change doctors

by Suze - 2009-03-07 11:03:59

I would DEFINITELY get a new doctor. I'll bet money (well, not really) that you need to have a setting or two in your pacemaker tweaked. I have two friends with fibromyelgia and I asked them about sob. They say they never noticed any.

I think some cardios and PM techs feel complaints from new PM recipients are voiced simply because the newbies have to get used to having the PM. Many times that is NOT the case. We have to learn to use the phrase "no, that is not acceptable" when they try to blow us off. We are the best advocates for our own medical treatment! It can be difficult to stand up to them, but sometimes we must.

Ask to speak to the doctor (not his receptionist or techs) and explain how you feel. I would jot down some notes so you won't feel intiminated and lose your train of thought during your converstaion. This has worked for me in other areas of medicine. (I have great heart doctors).

Anyway, hang in there. Take one day at a time....

Suze

Getting runaround?

by ElectricFrank - 2009-03-07 12:03:06

It sounds like you are getting the run around with your questions. It isn't easy, but the only way you will get anywhere with that kind of doc is to be firm. Keep in mind that you have the right to answers, but they will try to intimidate you.

I've noticed that a lot of the cardiologists are from Pakistan/India. They seem to be very competent, but haven't adjusted to the US culture where the patient has rights.

frank

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