Running out of patience.

I don't know where to start. Last week I had a series of scans that will continue tomorrow. I had an MRI with and without contrast. I had a Nuclear Medicine Scan. I had a PET scan. Lots of radioactive dye running through my viens. Tomorrow I will have a thoracic ecocardiagram with tang or something that will be injected. lol Anyway, in the past two weeks my pacemaker was adjusted three times. It doesn't seem to be right... I run. Each morning I set out to do an easy 7 miler. My pace is ultra slow. I don't mind being slow at 64. I stop competing and running really long distances about 17 or 18 years ago. Max is 10 miles versus 100k. Anyway, I head out and I am reduced to a walk every mile or half mile. I am so fatigue and feel as if there is a weight on/in my chest. My body acts as if it is winded but I am not really winded. I'm usually ok afterward but... is this my new normal? Does a pacemaker have to constantly be adjusted? Is it adjusted differently for runners? I hope after tomorrow's tests doctors can tell me if it's my heart that is screwed up or the pacemaker. 



Have you done any graded exercise whilst on an EKG with PM tech observing?

by crustyg - 2020-10-14 04:14:00

Hi Phillip: Sounds to me as though your docs are doing a really great job looking for causes of your reduced athletic ability/reduced cardiac output.  I've been through something similar - post second ablation I had considerable leg oedema which shocked me and my EP-doc.  Triggered a serious search for causes of acquired cardiomyopathy (none of which are much fun), eventually settled on the exclusion diagnosis of prolonged tachycardia induced cardiomyopathy.  Pretty mild, but definitely there.

So for you they are investigating most/all aspects of heart function, looking for areas of poor heart muscle motion, reduced myocardial blood flow, measuring %LVEF, cardiac filling and valve leaking, cardiac size, evidence of pleural and myocardial effusion etc.

I expect they've done all the usual blood tests, HB, ferritin, kidney function, some measures of lung function (FEV1, peak flow before and after exercise - looking for exercise-induced asthma).  A session on a static bike OR a treadmill might also help them to link your sensation of inability to go further when there's no obvious evidence about *why*.  A lab session might also give a hint of PMT (as an example) or an exercise induced SVT which would rapidly drop your cardiac output.

I totally understand the frustration from your point of view: hang in there, they sound really diligent and thorough.  My advice: try to understand more about what's being done, and why - they really are trying to get you back to a better state.  At your (==our) age, you *should* be able to perform better if your heart/lungs are healthy.

And yes, it *may* all turn out to be the PM.


Pace yourself

by Gemita - 2020-10-14 05:21:02


I can understand your frustration, but I agree totally with crustyg that your doctors are really trying to do everything possible to improve your situation and are leaving no stone unturned.

Now I would like you to be kinder to yourself.  Perhaps this is nature's way to tell you to ease off for a short while or perhaps to find a new level of safe exertion which will not trigger your symptoms.  The stress exercise testing will be invaluable to find your safe level and give your doctors more information of what happens when you reach levels which cause unwanted symptoms.  

From a patient's point of view this sounds very much to me like exercise induced cardiomyopathy/arrhythmia, so to find your safe level of exercise to keep these conditions and any symptoms under control will be important.  I await the results of your final tests with interest.

I would ask if you could work with a cardiac physiotherapist to trial some "pacing" exercises to see if you can slowly build up a level of exercise you can happily and safely live with.  I would also ask about your medication and whether this could be adjusted or changed.  Are you still on beta blocker Metoprolol?   Perhaps an alternative med can be tried?  But please be kind and patient with yourself for just a little longer.  You have an excellent team of doctors behind you and I am confident that you will find a way forward 

Thank you

by runpacer - 2020-10-23 16:35:21

Crustyg and Gemita, hi!

Thank you for responding. The both of you helped out before with some of these PM issues. 

Some of the recent tests I had was to rule out Sarcoidosis. It was ruled out. The tests were not explained that well but it was mentioned that in the lower right chamber the pumping of blood improved from I think 45% to 59%. That sounds like a good thing. Other aspects of tests show thicking of some walls of the heart, mitrial valve.. I forget the word with regurgitation (minor amount). Blood panels suggest that I get on Statins (this from my internist and I am suppose to discuss with my cardiologist team soon)... The cardiologist, in response to these tests and my PM focuses on the proper formula when adjusting the pacemaker. After some of the adjustments I do feel and run better. Other times, not so much. Today I was out there and did 7 miles. I was reduced to a walk probably for a quarter of the distance (off and on). The first problem eperienced is this enveloping fatigue. I just feel too tired and my legs can feel weighty. The second problem is if I pick up the speed, at first I feel ok.. Then, I feel a pressure midchest as if a hand is gently pressing on my chest making my breathing, heart beat, and effort hit a ceiling and then the fatigue returns. All of this is under ultra slow speed... we are talking 14 or 15 minute miles... pick up is to 12 minute mile.... I used to run in the high 4s during a hilly 10k when young and maintain fast pace to win double marathons, etc. My last test in the hospital was back on the threadmill with techs placing electrodes pasted to my chest as I ran. For most of the test I would run and than my pulse would drop down. It did take until I reached 5 miles an hour before my pulse went above 100 (barely). I will contact that one doc to see if he has any solutions for what I experience. 

Finally, Last week I was tested on a Friday. The last pill I had was on a Wednesday night. I did not go back on meds until the next Tuesday or Wednesday night. I experienced what it was like running without meds. I could feel some flutter return. I felt as if I was out of sync. My breathing and heart beat were not cooperating with each other. Things seem to have returned to normal since I restarted my Metoprolol. I did feel this heaviness from the med when I first returned...But I think I am use to it by now. 

If things don't get corrected I will make an appointment with the sports cardiologist at UCLA. 

Thanks again!


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