I'm feeling neglected by heart doctor

I just had a pacemaker/defibrilator put in on November 2nd. I saw the doctor two weeks later and his nurse raised my heart rate but did not tell me what the numbers are, and I didn't know to ask. Both the nurse and the doctor were shocked when I told them I was not feeling better, but feeling worse. That was the reason they increased my heart rate. It only helped for two days. I am back to so much fatigue. I feel like there is a weight pulling me down. It just sucks.

My history:
Sinus bradycardia
Ventricular premature beats
Nonischemic congestive cardiomyopathy
Congestive Heart Failure
Conduction disorder of the heart

All this since April this year. I was having my final plastic surgery following 2 Breast Cancer and an Ovarian cancer diagnosis (in one week) and then treatment. I thought I was free and clear.

Both my mom and twin have heart attacks in their sleep.

I have called my doctor twice last week and asked to come in. I have an appointment Dec. 23rd but do not want to wait. I am concerned about my fatigue. Is this normal? Am I worrying for nothing. I don't want to be that problem patient but I don't want to be too passive either.

Thank you!

3 Comments

Feelings are normal

by Theknotguy - 2015-12-14 04:12:08

So far your feelings are normal. EP doctors have a wait-and-see attitude sometimes. So if you aren't gasping for breath or clutching your chest they assume you're OK. Unfortunately your mind can be a boiling pot of all sorts of ideas with anything coming to the surface at any time.

How to kinda break the stuff down into what you need? Takes a little organization but it can be done. First is to write down your questions concerning your heart and pacemaker. Use 8x11 tablet, 3x5 cards, slips of paper, whatever works. For you I'd suggest slips of paper.

Write down the questions you have. Organize them into Heart, pacemaker, cancer 1 and cancer 2 piles. Doesn't matter how the questions come or on what subject.

After questions are written down and organized by subject, contact your medical insurance nurses' hotline. Based upon your description I'm assuming you live in the US. Your bio isn't filled out so it's a guess on my part. Anyway, most medical insurance in the US has a nurses' hotline. If you're on medicare, contact your secondary insurance. Start getting answers to your questions. If you have more questions, write down and add to pile.

When you've got a picture of what you want to know, you can contact your EP's office. Ask for his nurse and see if she will answer questions. If necessary, send in a printed copy of questions before you go in to see your EP. If he's a good EP, he/she should be willing to answer your questions when you have an appointment. Hopefully you'll be able to get your questions answered.

Based upon everything you've been through, you're probably still going through a kind of mental shock. So your mind should be going about a thousand different directions at the same time.

As for a heart attack in your sleep - they should have spotted that in your work up to get the ICD. If they haven't addressed it by now, it probably isn't an immediate problem. They would have been going for inserting stints as well as the ICD if it was.

As for your fatigue, yep probably pretty normal for everything you've been through. Under "normal" circumstances they probably wouldn't have implanted the ICD but you probably really needed it. At this time, fatigue is probably a pretty normal feeling.

I just found out about two weeks ago they had almost physically beaten me to death doing CPR. So in an effort to save me, they almost killed me. Problem was, not one person told me. I'm going around trying to figure out why it felt like someone had beaten the snot out of me when actually they had. I had a lot of mental issues with how I felt. I ended up working with a psychologist who helped me sort through issues and get me focused on my priorities.

You've had a similar issue with cancer and now heart problems. If at all possible, I'd suggest you talk with a psychologist type person. Don't care who, but having a disinterested third person help you sort through your priorities I feel would be a great help.

By getting stuff written down you're letting the doctor know you aren't calling with every whim that comes to mind. All of us who have gotten an ICD or PM have a lot of questions at first so you're really not out of line to have a lot of questions.

What I can tell you is there are more people who have had cancer and survived than have had cancer and died. So the medical odds about cancer are in your favor on the cancer side. And cancer research is getting better every day.

With the three million or so in the US who have pacemakers and ICD's, our chances for a good life are really good too. And heart research is getting better every day too. So the odds are in your favor on that side too.

I always ask for a printout of my pacemaker readings every time I get a reading. Can't always read everything on the printout but it's great to have as a reference. I can always go back and find new information.

Feel free to come back to the forum and ask questions. We have a lot of people with a lot of good information on the site.

I hope everything else goes well for you.

Thank you

by Thing1 - 2015-12-14 08:12:05

It is good to here from someone who has been through this. I do need to write down my concerns. Oddly enough the doctor's office called this morning and scheduled an appointment for tomorrow. So I'm going to get started on that list.

The cancer part never really bothered me. The ovarian cancer did for a while, but after my hysterectomy I was relieved. The heart problem doesn't bother me now that I have my device. I just worry about the fatigue. Also I am seeing a counselor, have been since the initial cancer diagnosis, I knew I would need that. She also encourages me to see my doctor and ask questions. I just really do not want to be that annoying patient.

But again thank you. I'm writing my list and taking it with me. My husband told me he would make sure I gave the doctor the list to get the answers I need.

An informed Patient

by BillH - 2015-12-14 11:12:03

" She also encourages me to see my doctor and ask questions. I just really do not want to be that annoying patient."

And informed patient;

1. Knows what they are dealing with and thus usually have less anxiety.

2. Knows what to expect, both good and bad, from the treatment so they know when something is working or not.

3. Makes sure that an important detail is not lost in the shuffle.Such as a allergy to a med that was forgotten to be listed in your record.

You know you're wired when...

You have a 25 year mortgage on your device.

Member Quotes

I wouldn't be alive if it wasn't for pacemakers. I've had mine for 35+ years. I was fainting all of the time and had flat-lined also. I feel very blessed to live in this time of technology.