1 year on and feeling no benefit

Waiting Lists

by Penguin - 2023-04-05 11:57:53

I empathise. There's little hope of seeing an EP at the moment although your situation sounds pretty difficult and I'm sorry to hear that you're so symptomatic. 

I imagine your GP is referring to the conditions which are already diagnosed and the medications to treat them, rather than considering how pacemaker settings adjustments might help you or anything else that might be going on or progression of your cardiac issues.  

I read one of your past posts which referred to cardiomyopathy in your family. Is pacing induced cardiomyopathy your concern and if so have you voiced this to your GP? I think that there is a blood test for this which the GP could perform in the first instance.  Have you had it (BNP?)

As you correctly point out you need to see someone with some medical / pacing knowledge to confirm a cause for VT / breathlessness, near syncope and ankle swelling.  When is the last time that you saw an EP or Cardiologist?  If the GP won't refer, could you speak to the pacing clinic manager and explain your concerns perhaps? 

Not feeling better

by Julros - 2023-04-06 00:33:29

I am sorry you are feeling poorly. I am a little unclear about your actual medical diagnoses. You report having a biventricular pacer which are usually placed for reduced heart function, or ejection fraction. Have you had an echocardiogram to assess this? If you function is reduced, this may be the reason for ankle swelling and shortness of breath. Unfortunately, bi-v pacers cannot always improve this. If you do have a reduced ejection fraction, there are other medications that may help. 

Another thought regarding your swelling and discolored limbs would be reduced venous or arterial blood flow. Of course, I cannot offer diagnosis or solutions, but I would ask your GP about this, and whether compression hose could be of use. 

As far as I know, a pacer does not cause atrial fibrillation or ventricular tachycardia. These may be caused by an enlarged heart, which again may be related to reduced heart function. And sometimes they just happen. I have had 2 cardioversions, and both lasted 2 days. 

Perhaps your doctor can try an anti-arrhythmic. These are not suitable for everyone, but I have had reduced episodes of  a fib and a flutter with sotalol, and few episodes of nonsustained ventricular tachycardia. 

Dual chamber or biventricular pacemaker?

by Rch - 2023-04-06 02:15:19

In one of your earlier posts you had said it was dual chamber pm for CHB and also that you were on Apixaban for A.Fib. 

I need to clarify one more thing- were you diagnosed with hyper or hypothyroidism? 

As to polycythemia, did your provider mention whether it was primary or secondary due to sleep apnea? Some of your lower extremity echymotic patches could be due to either Warfarin and/or polycythemia. Also, depending on your BMI, you could have sleep apnea, ankle swelling and postural SOB- I'm just guessing!! My honest opinion is that an Internist ( PCP) should be able to diagnose your symptoms and treat with medications and/or lifestyle changes, and if there is no improvement, then refer to a Cardiologist.