What questions to ask the doctor

This is my first post here. Feeling a little overwhelmed and hoping someone can help me make sense of this PM thing. I was diagnosed with 3rd degree heart block in Dec '19 and received a Biotronic Edora PM. By Feb I was feeling much better, but still had heart palpitations. In my follow up visits the cardiologist said they were nothing to be concerned with.

By April, the palpitations started getting worse, my heart rate would jump from 70 to 115 without any activity. Since then it has gotten progressively worse. Practically any movement like walking up the stairs at my house, walking around a grocery store, etc I am so short of breath that I'm about to pass out. Sometimes I can't even stand up without palpitations and shortness of breath, and my heart rate is so irratic that I stopped paying attention. 

I have a long history of doctors ignoring my symptoms and making me feel guilty (I also have RA and morbidly obese) so I've been hesitant to do anything about it. After reading some of the posts here, I see I really need to get checked out, but I don't know how to have the conversation with my doctor. 

Getting the PM was such a whirlwind that I remember little about what happened. I've learned more in 20 minutes on this site than I did from the doctor.

What are some things i should ask my doctor so i can be more informed about my condition? What info do I take with me to my next visit?

I appreciate any direction you can give. 

 


2 Comments

Hope this helps

by Gemita - 2020-08-01 04:43:59

“I dont know how to have the conversation with my cardiologist” tells me that you are an extremely sensitive and intelligent person who needs to work with the right cardiologist to really benefit.  “How to have that conversation” is what I have been striving for too and is at the heart of many of my problems.  I hope the following may help you when you next see your cardiologist or doctor (although it sounds to me as though you should speak to someone sooner rather than later with your worsening symptoms).

... discussion should always focus on your "most troublesome” symptoms.  Do not try to cover too many symptoms during your appointments.  In my experience, it never works.  Time is always limited.  Your cardiologist needs to know “how” your most troublesome symptoms affect you in your daily life.  For example let him/her know that when you try to climb stairs you become breathless, get palpitations, may come over faint. If you get similar symptoms at rest, for example when sitting or when trying to sleep, tell them this as well.  So always describe “how” your symptoms affect you in your day to day activities “rather than focus on your list of symptoms alone”.  This will give your cardiologist a better idea of what might be causing your problems, how to treat them, whether your present pacemaker settings are right for you or whether they need adjusting.

..  you have clearly admitted to us that you have a weight problem, possibly due to your other health conditions like RA and any treatment you might be on.  Please don’t feel guilty.  Many of us struggle daily with pain and mobility problems, leading to weight gain.  I would courteously ask whether the hospital could provide support to help you to control your weight rather than waiting for the cardiologist to suggest that you need to lose weight.  Be ahead and your cardiologist will know that he is dealing with a sensible patient who is in control and prepared to try to help herself?

... importantly you need to get across your concerns about your increased heart rate and palpitations following pacemaker implant.  Despite being told there is nothing to worry about, I would ask whether these symptoms might be (1) pacemaker mediated or caused by (2) a new or worsening arrhythmia??   Explain that even without activity your heart races, you become so short of breath that you are close to passing out (like when you try to rise from a sitting to standing position).

... you should ask whether there has been any deterioration in your heart condition which might require additional treatment/investigation ?

... always take a list of all your meds with you and ask whether any of these might be causing your symptoms, whether doses are right for you, whether any new heart meds you have been given might be interacting adversely with your RA meds for example?

... your cardiologist will need to know about all your past/present health conditions and what investigations/surgery you have had, so take a medical history showing dates of diagnosis, intervention, meds and so on

... finally, I would ask whether you could have a contact number for a member of his team, like a senior nurse in the clinic for instance, who could help you with any further concerns/questions you might have in the future between visits. Tell your cardiologist that you want to learn more about your pacemaker and your condition but you realise that time is limited.  You may find your hospital has a support group you could join ?  I did and it has been immensely beneficial 

I hope you have a very helpful consultation and that your concerns will be addressed.

 

 

 

questions to ask

by Tracey_E - 2020-08-01 08:50:59

Gemita gives very excellent advice. The only thing I would add is to ask if your rate response is turned on. Rate response senses we are moving and raises our rate for us. With av block we don't usually need this and sometimes it can compete with our natural heart rate so it can cause problems, like jumping up quickly on the smallest exertion. If it's on, ask to try having it off for a few weeks and see if that helps. 

It is possible that it is your natural heart rate and it'll just take some getting used to. That happened to me. With av block, the atria works normally but the signal gets blocked on the way to the ventricles so before we were paced our pulse didn't go up and down as it was supposed to. The atrial rate was going up and down, but the ventricles were just chugging along, doing their thing. Now, every time the atria beats, the pacer tells the ventricles to get with the program and the heart stays in sync. That can feel very strange for a while when we aren't used to it. It was a good 6 months for me before the higher rate and the ups and downs felt normal. 

Good luck getting answers! 

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