DOC WON'T LISTEN

My first pacemaker was inserted on February 4, 2010. Within 4-days, I felt so much better, I remembered what it was like to feel normal. This lasted only 4-days and then I went back to shortness of breath, swelling in feet/ankles, rash on the top of my feet, back gas pains, chest pressure, and dizziness when standing.

When standing, it feels like my heart literally jumps up into my throat, I can't catch my breath, and I think I will pass out. It took 5-days to get in to see the doctor.

He said my heart was fine, based on an EKG in the office, and the pacemaker was working. He also said he had told me the pacemaker would not take care of these symptoms, but would only take care of the sinus pauses found on an Event Monitor.

I dislike being unable to live a normal life. I know my body and I just happen to be one of those 1-3% people you're reading about with complications from just about everything. But, I don't run to doctors and I don't stretch the truth on health issues.

What he did do was take over my blood pressure medications. I had been taking 4 pills a day. Two of those pills were Atenolol 50 mg. He said this drug could cause sinus pauses and I was on a relatively high dosage. I was cut down to 25 mg at bedtime for 1 week and then off the medication. I go back in a month. He said I might feel better off the medication.

When I asked if there could be another heart problem, since I had been hospitalized in January 2010 for AFIB I didn't know I had and then a pacemaker a month later, I thought there just might be more to the story. His reply was he did a good cardiac workup on me in fall of 2008 and he saw no damage to my heart or clogged arteries then or when inserting the pacemaker.

Next I asked what if being off the medication didn't help. He replied he didn't know what else to do and anything else outside of the heart would have to be addressed by another specialist but he had no idea as to who that would be.

Now I have to tell you, his nurse said I was his first pacemaker patient to call with complications. So, I'm wondering if his ego got in the way of his judgment.

I also need to tell you, he saved my daughter's life, with a big helping from God tossed in there. He has been a good cardiologist for my husband. In our area, he is noted as the best in his field.

Just before this all happened, I was preparing to go to John Hopkins for an adrenal tumor. My endocrinologist suspects Metabolic Syndrome at the least and Cushing's Syndrome at the most. Barnes Jewish Hospital wants the tumor doubled in size before taking out the tumor and adrenal gland. John Hopkins says if the tests prove it to be the problem, then the sooner it is taken out in a new minimal invasive procedure, the better off I would be.

My family says to go on to John Hopkins as I am now, but in all truthfulness, I could not make the trip alone, which was what I had intended to do. If surgery was warranted, then my husband would fly out there.

This is not normal, for I cannot drive, cannot be on my feet long enough to go anywhere. I can't get personal hygiene completed without resting in between. I can't load the dishwasher without resting or cook a simple supper without resting. I certainly cannot go to the grocery store, and someone has to take me to do my weekly blood work for Warfarin.

The days and nights are pretty long and the visit to the doctor's office was frustrating. I might add, two of the papers sent home with me after pacemaker surgery said to immediately contact your doctor if you had any of these symptoms: All the ones I am currently having.

Does my cardiologist have an ego problem? What is he missing? How do I handle this if he refuses to listen to me?

8 Comments

what a pm can do

by Tracey_E - 2010-02-25 07:02:46

What changed 5 days ago? It's odd that your symptoms came back so suddenly. The rash and gas almost sounds like an allergic reaction.

I am not a doctor! But it sounds to me like you have a lot more going on than just your heart. A pm can only pace, add beats when your heart goes too slowly or pauses. That's all it can do.

Fibrillation can cause some of these things- sob, dizziness, chest pressure. It's usually controlled with beta blockers (Atenolol) to slow your heart down. All the pm can do when you're in afib is sit back and watch, it has no way of slowing down your heart if it goes too fast on its own.

If your cardiologist has done a complete work up and says your heart is fine, then I would pursue the adrenal problems. I wouldn't consider an ekg a complete work up.

hmmmmmm

by Pookie - 2010-02-25 09:02:21

I'd be getting a second opinion as fast as I could and I'd be asking to be seen by an EP (if you have not been to see one already) as soon as possible.!!!!!!!!1

There are a lot of heart test out there...which ones did you have????? More importantly, which ones did you NOT have????

Sorry, but it's just my opinion but something doesn't sit right with me regarding your cardiologist.

An EKG in an office is what?...a total of 15 seconds at most and your pacemaker is probably working just fine, like Tracey said....however, your pacemaker might need some more adjustments.


Good luck

Pookie

Another opinion

by lenora - 2010-02-25 10:02:16

Have you considered that the adrenal tumor could be the cause of most of these symptoms you describe, perhaps even the arrhythmia itself? I think you need to be talking to your endocrinologist because the adrenal tumor is not a cardiac issue.

I agree with lenora

by ElectricFrank - 2010-02-26 01:02:21

An adrenal tumor can cause all sorts of problems. One of them is creating a panic/anxiety situation if it is putting out excess adrenaline. The 4 day reprieve after surgery could have been the result of having given you antianxiety meds during the procedure. It can take several days for them to get totally out of your system during which time you had some protection against the adrenal condition.

Not a doc, just guessing,

frank

Thanks

by Madelen - 2010-02-28 01:02:41

All of you had some good thoughts.

I had an attack of A-Fib on Friday, lasting most of the day. It was the first one I recognized since having the PM inserted, and it showed up on my BP machine.

My last good cardiac workup was fall of 2008, before the doctor knew I had any heart problems. He was checking because I had been hospitalized with a TIA for 5-days.

The health insurance nurse assigned to me after being in the hospital called on Thursday. We went through all the problems, what the doctor had said, what the PM rep had told me, etc.

She asked me to get my medical papers from the hospital and see if I had an ultra-sound of the heart. If not, she asked me to have the cardiologist order one. Seems she feels this is not asking too much of the doctor considering I'm still having complications.

She also added, John Hopkins will not see me for an adrenal tumor work up having these cardiac problems. They will want to know that my heart is under control first. She suggested getting everything done to prove the heart is healthy or find another heart problem in the process.

She also suggested a second opinion, but where I live, doing this could get you black-balled and you could find yourself without a cardiologist. We have two big hospitals here, but only two cardiologist groups. Word gets around quickly, and there is no way my doctor would not find out about this. I really can't take the chance of a second opinion in my city.

Friday, I was not up to doing much. I had the jitters inside. I finally realized this was probably the results of having the Altenolol cut from 100 mg per day to 25 mg. My BP was too high, my heart rate was ranging between 105-120 most of the day, so I did not get to the hospital for medical records. Personally, I think this is what set off the A-Fib.

My cardiologist told me Altenolol can cause Sinus pauses requiring a pacemaker. He said it can cause complications of sob, dizziness, chest pressure, swelling. I've been on it for a long time, I'm getting older, I may have gotten sensitive to the med, and he feels it is worth going off of at this point.

It really gets hard knowing who to believe. But I am finding the people here, my family, and the health nurse all feel not enough has been done to rule out something else going on in the heart.

I do understand the way the PM works and that it will not control A-Fib. I found the comment about the anti-anxiety meds given during the surgical procedure as a possible reason for having 4 good days, an interesting thought.

Thanks for taking the time to reply. My most useful information has come from this place. I am so glad I found this PM Club the first week home from the hospital. I especially want to thank those of you, who seem to be so dedicated to helping new people understand what to expect and what could be problems they need to have checked.

Thanks again...Madelen

pacemakers and Dr's

by jan - 2010-02-28 07:02:01

I could only smile when you said if you complained you would be black balled. i called my pacer company and they called my Dr. and all hell broke lose. He informed me that if I could not take his opinion I should seek another Dr. I did not know about ego's at the time. I read the book Hospital which makes you realize that they are just people trying to help us all and we each tick just a bit different. I had 20 years before the pacer with about 10 or 12 different Dr. as we lived in different area and when I would have a spell, i either had the flu, closed glands and numerous other things. Well finally I told a nurse friend I'd had it and would not be doing any more Dr. -she happened to be in the emergency room when they hauled me in and detected 3rd Degree heart block. In the 20 years since I have had a lot of funny things happen and a lot of disappointing things with the Dr. but i've had more good days than bad. I will be getting my third pacer in the next 3 to 6 months and hope it will be my last.

Strange

by ElectricFrank - 2010-03-01 12:03:03

Some of your experiences with second opinions are strange. With all of my demands and second guessing I've never had a doctor refuse or even threaten to cut me off.

My real concern is the movement toward universal medical records. While there are advantages to having a doc be able to access records in a city far from home, I concerned that it will make second opinions useless. The second doc with just check the records and back up the first.

frank

Cushing's syndrome

by zelda - 2010-11-20 10:11:29

Hi Madeline,

I have pituitary tumour and also being tested for Adrenal and pheo tumours. I have elevated cortisol.
.

The problem is my body is rejecting the pacemaker. Cushing's people don't heal well and I warned the surgeon that when I was in ER and waiting for pacemaker surgery. I was back for second surgery due to infection that did not get to the leads.
Now I'm showing symptoms of infection again and I want my pacemaker out.

I believe my heart problems are from the endocrine tumours and once the tumours are removed and hormones regulated my heart problems will improve.
For example: below range Renin and Aldosterone

I'm curious if you had a BLA and still have your pacemaker.

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