where to go from here

[bluefields409]

I haven't posted in a while as, to be frank, I have been frustrated with testing and results and thought a "step back" would give a new perspective.

Still not sure where I am on my "heartroad" but I just received notification for further consult & stress testing @ Munk clinic.

I am not sure there is value in having a stress test done, particularly after angio.

While the anemia is improving with the feramax, the side effects from meds trying to stabilize BP etc have again become intolerable. This is not the first round of aggressively trying to control BP , with each time resulting in more favourable BP readings but with the results of worsening AS symptoms :breathlessness, poor tolerance for any incline and/stairs,more palps, feeling faint etc etc.

I have lived with very high BP for so many years, that anything close to "normal"and I feel like crap and struggle with day to day physical demands.

So after angio in November, I was told again surgery will fix valve but no guarantee I will "feel' better. From that point , although mod/severe with symptoms, the Main focus was BP due to risk of heart attack/stroke, although my Cardiologist firmly says my case is , not if but WHEN as repair is inevitable at some point.

NO one will commit to my question of if we repair valve BP will improve? etc etc. IF the BP is risk for surgery, as even in angio it was an issue, it can be controlled and monitored in Hospital in a manner to allow for surgery.

What is worse? Me not tolerating BP meds to "normal" and then being non compliant due to side effects or the risk of trying surgery?

 

[Duffey]

I'm not sure what I would do if I were in your position regarding the stress test.

If the cardiologist states that a repair is inevitable at some point, then you will find an answer to your question as to whether your blood pressure will improve when the repair takes place. I realize that's not much consolation when you're dealing with quality of life issues and bp medication, but that's the spot most of us find ourselves in while awaiting repair or replacement.

I hope you will have some more definitive answers after your upcoming consult at Munk.

 

[Superbob]

I had occasional high blood pressure readings in the years before my surgery, went on bp meds, and luckily have been able to tolerate them. Now, post-surgery, bp meds keep my bp lower than normal as a way to protect the mended heart.

So I don't know if I have a good answer to your questions -- just wondering: have the docs tried to adjust your dosages or tried different bp meds to achieve the desired result without side-effects?

I, too, would wonder about the value of a stress test at this point; would want more explanation of why.

I gather there's no doubt you need the valve surgery, so the course would be to find the best level of pre-op meds possible, have the surgery, and then adjust afterwards to the best maintenance-level meds. I can only say that my bp is very well controlled (with meds) almost 6 years after surgery. Of course following a good diet and exercise routine helps, too. You might want to check out cardiac rehab post-surgery. All best wishes to you....

 

[Jkm7]

I don't pretend to be anything of a medical professional but from a personal viewpoint, I would refuse the stress test after having had angio.

 

[Mentu]

Blue, perhaps this is one time when an unbiased second opinion could be useful to you. If you are at a point, as it seems you are, where you question the necessity or the wisdom of the diagnostic tests your doctor has ordered, then you may really benefit from having your records reviewed by an unrelated cardiologist. The result of an unbiased second opinion could bolster your confidence in your present cardiologist or suggest to you that it is time for you to select a new one. Sometimes our problems are more complex than "out with the old valve in with the new". As you work with your doctor to deal with complex long term problems, it is important for your own frame of mind that you trust your doctor and it sounds to me that you do not.

Larry

 

[bluefields409]

Appreciate the feedback. Still undecided but I have time before proper cancellation notice for the stress test. Might come down to a coin toss

 

[Jkm7]

Do your GP, Cardiologist and Surgeon all think you should have the stress test? That would influence my thinking very much more than if only the doctor who is scheduling it. Have they assured what protection will be provided for you should you decide to go forward with it? Will your personal cardiologist be present or another your trust? We all know there are some risks at stress tests.

Best Wishes.

 

[bluefields409]

Do your GP, Cardiologist and Surgeon all think you should have the stress test? That would influence my thinking very much more than if only the doctor who is scheduling it. Have they assured what protection will be provided for you should you decide to go forward with it? Will your personal cardiologist be present or another your trust? We all know there are some risks at stress tests.

Best Wishes.

Actually...my regular cardiologist could do stress testing at his office but has not done so because of BP and other symptoms. Good point!

 

[bluefields409]

I think I am playing Heart monopoly in the waiting room...do not pass go....do not collect $200.

I haven't been referred to a surgeon as it appears that I have stalled in this cardiac diagnostic limbo.

I had hoped my referral to the Adult Congenital Cardiac Network & Munk clinic and would have resulted in some definite measures towards resolution, but that confidence has been shaken.

In order to accommodate appointments, testing , etc I have even put such practical matters such as employment on hold, as employers, particularly new, are not able to accommodate the time off.The last 6 months, in particular, would have required a significant amount, with weekly cardiologist appts. side effects of meds etc .

And so.... I will now be focusing on the practicalities of trying to secure employment etc, and get back to the game of life.

The cardiac cards will have to fall where they may so until the next "cardiac episode" strikes or the consequences of BP rears its' ugly head I will do my best to live life and enjoy it to the fullest.

I will have confidence in me!

Thanks again to all who have read, and to the responses.

Be blessed !!

 

[Greg a]

Have you ever presented yourself on the doorstep of McMaster ? I would try that and see what comes of it it is just going the other direction on the QEW/403 instead of QEW/Gardiner heck if you wanted stay on the 403 and then wind up at London Health Sciences keep asking until you get SATISFACTORY answers

 

[normofthenorth]

My Cardiologist set me up for an appointment with one of the surgeons at the Munk Clinic maybe 8-ish months before either of us thought I'd actually get the AVR. I don't understand why you're being prevented from picking a surgeon and adding that expert to your discussions.

I've never really seen the value of stress tests EXCEPT to determine how "symptomatic" a patient is, who is relatively sedentary. If somebody is running or playing competitive sports without any SOB, then I think a stress test will usually just confirm that fact. And similarly, if going up a couple of flights of stairs brings on symptoms, then so will the treadmill. Maybe I'm missing some fine points, but that's what I've seen and learned.

My BP has traditionally been on the low side, so I've got nothing to offer there.