2 Doctor Appointments Today!

[AJVDK]

Well today I was off to see a cardio doctor 2 hours away. I saw him 6 months ago and new what POTs was but not really sure how to treat. So I thoug at least he knows what t is, hopfully he could work with Cleveland to get my treatment undercontrol. Was I wrong. I was the wrost appointment I have had yet. !st last time I was there I went though 2 day of test stress test, pacemaker checks..... Today he tried 3 pacer machies ( all they wrong companys) to test my pacer before he got the right one. Then the 4th one was broken so he said I would have to come back later in the week once I they get it fixed. He asked how I been feeling I said they same thing I tell them all I feel bad even since they put the pacer in in 2004. That O am dizzt, and lighhead. I have vision changes, and my b/p seem to go all over the place. I went on and on about how I was feeling. He asked if I ever though about taking the pacer out I said yes, but I am pretty sure that I can't due to fact it was placed after two abltions and I could keep my heart rate very high it was in the 30's- 40's. I don't think we beleived my even though if he look at my records he could see that. SO anyways he says, let stop your meds and think about removing the pacer the next time I see you. I am liking to my self what is going on??? So he leaves and a rn comes in and said that the found a St. Judes Pacer machine to chack my pacer. So she checks it to see and to keep my heart beating at 70 beats per min. I am paced 70 beats per min. On top of it I was very upset and my b/p at the doctor was very high for me it was 131/61. So she asked if I wanted to wait because the doctor had to go down stairs to the morge to turn a ICD off on a dead man. Wow can you beleive shw saud that? SO I went to the waiting room where I waited for a long time close to an hour to come back and say we will see you in 2-3 months and we will see how you are feeling once you go off the meds, and we want you to call this man who restore energy . THey use this guy when meds don't work. I can't beleive the want me to go see a new age person. By this time I am really hot.

So I called my family doctor office and the worked me in. So we drove the two hours home to see my family doctor who I just as upset as I am. He siad he is going to take over my full care, and go ahead and do the ekgs, hotlers, what ever I need and just work with Cleveland himself. He seemed very upset with the fact no one knows anything about POTS and that they all treat me like I am crasy, or try to pawn me off on somthing else. So at least I have one person fighting for me! And is going to work to get thw right treatment. He was really mad to that the want to stop all the meds we have work a very long time to get what I have. I am not always sure they are working but I wouldn't want to see the fall out if I stopped them all. Anyways thought I would vent about my day!

Have a great night!

[Ernie]

Wow,

I am really negatively impressed with this doctor. I wonder how she thinks you will manage without the pacer and the meds!

I am glad that your other doctor is willing to take your case. I think you will be in good hands.

[dizzygirl]

jesus!! I am so very sorry that you had to deal wit such ignorance today.. I really hope that yb working with your PCP that you wil start tof ell better

HUGS to you dear!

[gdomaracki]

~Sorry you are having so much trouble right now. I do hope that this doctor can get everything straightened out for you. I am learning how illiterate doctors really are about illnesses, especially pots. I went to the doctors the other day about a stomach bug, or possible side effects of a new drug. And I mentioned what I had been diagnosed with, pots. She was like, ummm...I just knew she had NO idea, and then mentioned, "isn't that what baby's develop, an irregular kidney or something." I wanted to get up and leave. Of course I informed her of what it was not like she cared, but...anyways!

I have found a doctor that knows some about my condition and is willing to push to have things done for me and it is truly a blessing. I mean whatever referrals, paperwork, tests, ect I need all I have to do is call.

In my thoughts and prayers.

Nicole

[taylortotmom]

So sorry you had such a bad experience. Your PCP sounds like winner, though. Hang in there- I know all this is terribly frustrating.

Carmen

[goldicedance]

You really had a nasty experience with your cardiologist--how terrible!

I too have had a sinus node ablation which then necessitated a pacemaker because of bradycardia. After a number of adjustments, my pacer is now set at 82 beats a minute which seems to work best for me.

After a few years of having this thumping feeling of my heart beating (junctional tachycardia), I could not take it anymore. An EP study showed that I felt better when they were able to test the effects of ablating the AV node. After a few weeks of pondering whether I should have the second ablation since it meant that I would be 100% pacer dependent, I decided to have the AV node ablated. It was a good move in that I no longer experience this terrible thumping feeling. The downside is that my heart rate does not accelerate too much during walking, etc.

Perhaps this might be an option for you.

It is strange that he suggested removing the pacer. He could have suggested turning off the pacer and having a trial run to see how you do. Pacers can be programmed to do all sorts of things.

Good luck and be grateful your internist is willing to take over your overall care.

Lois