FRUSTRATING ~ ~

Hello all. After a frustrating & emotional time I had at my first 3 month PM check on 1/14/10, I had a scheduled trip to make the next day, and I just am coming back home. Been missing all of you. I tried to "Post" my frustrations here before I left, to no avail. My home at the other ranch does not have high tech "stuff", no phone, no computer, no TV, no etc. so I could not communicate with anyone while there.

A lil' of my history: I had the Boston Scientific PM ablation/implant on 10/2/09, I had asked the Dr. on Duty (weekend sub) a couple of questions during my overnite stay in the hospital. That Dr. told me to ask the PM rep. coming into my room soon. I asked the PM rep. a couple of questions, and he said to ask the person who would do my end of the week check in the PM Clinic, of which I did on 10/9/09. That woman told me to call/ask Boston Scientific if I had any questions. She also told me, after I had asked where my Dr. (my cardio/EP) was (located in same area as PM Clinic), & she said, "He would not need to see me for a year". (I last saw him at my implant surgery).

On 1/14/10 I went to the PM Clinic for my regularly scheduled PM 3 mo. check. I had tried to "Post" to PM Club about 3 wks. ago right after I left the most upsetting PM Clinic appt. After typing, sending, having "Spam Code" returned to me by the PM Club "Post" and after rre-typing my "Post" 3 different times and it going "poof" into thin air, I had to leave for a couple of weeks on a planned trip to the other ranch near San Angelo, Texas.

Anywhoooo, at the 3 month check appt. day, I proceeded in getting to the PM Clinic office, they had nothing showing I had an appt. I pulled out my lil' ol' appt. card filled out by them and they found someone who could put the lil' round "thingee" over my PM & read the computer. I tried to ask her my questions I have tried to ask everybody else since the implant on 10/2/09. She said the questions I had were to be asked of my regular GP! ! ! Now that answer has taken me in a full circle from which I started (pre-PM)! My questions were simple. Why was I having the symptoms post-PM that the Dr. kept asking me months pre-PM, "was I tired, light headed, etc.? Why my left shoulder hurts more at night than the right. Why I had light headiness now & not pre-PM. Why I had "blacked out for less than 10 seconds a couple of times driving a 250 mile trip, etc.".

What was most upsetting of this 3 month check up, besides not being in their computer schedule, was being told I have been in A-fib since 10/2/09! ! ! I almost cried I was in such shock & disbelief! I had thought all along, that if I had the PM implant, it would be to take care of this irregular, abnormal heart beat/blood flow. To hear I still had A-fib was just almost too much to hear/take. I am on Coumadin (Warfarin) for life for clots/stroke. I had one bad clot before Warfarin.

The woman set up my next appt. to be a 3 month appt. in April on my house phone. I put on "bracelets", attach to lil' box they gave me & lay my phone in a place for it to be read by the PM Clinic phone.

I did take some of your advice with me & asked for a "print out" & she said she could give me one, but she did not want to scare me. I asked for a print out for my GP & she said she could do that, but it would only confuse him! I asked what I was paced at & she said I was "80" at a 100% and there is not really a "high" number. I did ask for the monitor to take with me when I travel & she said Boston Scientific PM was not made with that. I asked why I did not get a Medtronics or another PM like other people, and she said the Dr.'s CO-owned Boston Scientific! ! Remember I had to sign I acknowledged & signed I had read where the doctors of the Heart Hospital of Austin owned the hospital as I was admitted for the PM implant.

Thankfully, my GP saw me as soon as I came home yesterday, and said, "yes, my heart is still like "quivering", but the PM is working. He answered all my questions I have built up since October 1, 2009! He just had no answer as to why I "blacked out" when driving exactly a month after the implant.

Here I go again, long winded and now frustrated, hurt, disappointed, and all other emotions not listed because my original problem is still with me ~ A-fib.

Now, the cardio/EP has decided he wants a 6 month appt. w/me in April. For what reason? Pre-recorded message.

Thanks for listening to me, again. If you have any input, please let me know and help me out. You all have been wonderful. POOKIE, thanks so much for caring enough to check on me.

Take care, Carolyn G. in TEXAS ( :

2 Comments

Dear Carolyn

by Pookie - 2010-02-03 07:02:29

I could just cry for you. I've been where you are too. So have many others on this site. So....take a deep breath and wait for our knowledgable membership to help answer some of your questions and support you.

Now, this is just my opinion and what I would do: I would write a letter to ALL the doctors and to anyone else who was/is involved with your case. I would write it chronologically and include the questions you had/have. It is your right as a patient to be informed. It is your right to have the professionals explain things to you....before you leave.

During the past 5+ years of my journey, I have had to do that several times and you know what? ~ It worked!!
And you know who suggested it to me? Electric Frank, of course. Thanks Frank.

Do not allow these professionals to intimidate you and just shove you out the door. Tell them you are not leaving until your questions are answered in a way that you understand them.

The letter (that I would write) might just put some of these people in check. It also shows them you mean business and I think you will find that when they see you again, they will treat you in a better fashion.

Another thing that just came to mind is: if you are feeling "events" with your heart or you feel dizzy or lightheaded, ask your doctor for a 24 hour Holter Monitor or even better...a Loop Recorder.

There's nothing more maddening than getting the infamous run-around. Grrrrrrrrrrrrrr.

Hugs,
Pookie

Pacer and AF

by golden_snitch - 2010-02-04 04:02:35

Hi Carolyn,

I'm sorry you are having such a rough time at the moment. At least your GP seems to be a good one, but you really need a cardio, too, who listens to your and your concerns, and takes time to talk to you.

But what I don't understand is you had thought that the ablation and pacer would stop the Afib. Didn't your EP tell you that it won't actually stop the fibrillation of the atriums? Didn't we tell you (I actually think we did)? If not, then that's really bad. The thing is that the "ablate & pace" strategy only takes care of the irregular (or too slow) rhythm caused by the AF. The atriums still fibrillate but since the AV-node has been ablated the irregular impulses can't travel down to the ventricles. Instead the pacer paces the ventricular at an appropriate and regular rate. So, most of the symptoms from the AF should have disppeared now. However, I do know some patients who say that they can still feel that the atriums are fibrillating but it's not as bad as before since the irregular rhythm is gone.
Since the AF is still there, all of them are still on anticoagulation with Warfarin etc. Are you?

I'm sorry you are disppointed now, and you have the right to be angry, too, because your doctor apparently didn't inform you well enough. But after all, even though the AF is still there, it has been taken care of with the ablate & pace strategy. Your cardio just chose a way that does not involved ablating the AF itself. Maybe he did that because you were in permanent AF. Ablations (pulmonary vein isolations) for permanent AF are not very successful, they work well for patients with paroxysmal AF only. So, in patients who have permanent AF and suffer a lot, ablate and pace is the better treatment.

Best wishes
Inga

You know you're wired when...

Jerry & The Pacemakers is your favorite band.

Member Quotes

I am active and healthy and have been given a second chance.