My husband has inherited familial hypercholestermia as has my son. We try to keep ourselves very educated on this and in partner with this adjust our lifestyle and meds to keep this condition at bay. Last year my husband starting having chest pain and was finnally diagnosed with 100% RCA blockage. A cardiac cath and 2 coated stents later all is clear.
The question is this: He is a long distance runner and otherwise in great shape. Prior to the cardiac cath and stents he had a thallium stress test, echo, ekg and none of these tests found any blockage. We were quite vigilant to get this taken care of and consquentely paid $1500.00 for a 64 slice cardiac scan which immediately gave us a diagnosis. Our insurance for some insane reason refuses to pay for the 64 slice cardiac and would perfer invasive cardiac caths!
So the question is...it has been a year and he feels great and so we have to have some kind of check up and determine if he is ok and can get off plavix. The docs first said to do a echo and a regular stress test. I tried very hard to communicate to them that these were not diagnostic for him 1 year ago for RCA 100% blockage so what alternatives do we have. They came back at me and said to get echo and a thallium stress. I cant say I understand why it is worth doing if it was not diagnostic a year ago. If the only screening tool has already proven to be a 64 slice cardiac scan or a cardiac cath then why do the stress test. It actually is more costly than a 64 slice ct and the cath is invasice.
I would like to know if there is any test that I dont know about that would be diagnostic for RCA blockage or are we just supposed to wait for an event of chest pain.
Thanks for your help and information.
Your husband is fortunate that he has chest pain when there is a problem. Thats good because one way to handle this is to look out for re occurrence of chest pain, if it even ever comes back. I would have to agree with your doctors regarding the CT scan. It is not a good test to begin with because of numerous possible artifacts, but furthermore, once a patient has stents deployed in any of the coronary arteries, the scan can't evaluate for recurrence of blockage which is most common, referred to as in stent restenosis. Furthermore, the reason why your husband did not have any ischemia on the thallium stress test is bacause he is very well conditioned and has developed collaterals to the blocked RCA territory. It is a good sign for him that he can make collaterals because his heart function did not suffer even when his artery was completely blocked. I think getting the echo and considering a stress test is not a bad idea. Also, the most important thing is to look out for symptoms. As far as the plavix is concerned, I would stay on it as long as possible. The longer the better is his condition. Now to answer your original question, the catheterization is the goal standard. Thallium stress test is a good screening test with an 80% stensitivity, which means that it can miss up to 20% of patients who have true disease. Sestamibi stress test is a bit more accurate than thallium, maybe up to 85% and is performed in a similar fashion. The CT angiogram is considered an intermediate test between thallium/mibi and the angiogram but in my opinion it is not a very useful test at all.
I read your post above and hope you don't mind me asking a couple questions that came up.
First, I agree and understand with your frustration about stress tests and heart scans...it makes no sense to me why someone who has already (1) had a negative stress test AND (2) a subsequent positive heart scan would ever be asked to go through the motions again...my off the cuff advice would be to go see a preventative cardiologist who would be more amenable to your request...or make the request himself. I agree that it is insane that insurance carriers (almost all from what I understand) refuse to pay for the most predictive test related to heart disease...a heart scan.
Hope you don't mind if I ask a couple questions...it is always disconcerting to read about a healthy runner like you husband who basically develops some form of CAD despite exercise and diet changes. Has he been on cholesterol meds for a while...do the docs give any indication of why they were not successful?
Does your husband's hypercholestermia manifest in high TC, LDL...or is low HDL also a factor?
Does he have a family history of heart disease?
Thanks for the feedback and I have a feeling the CCF will have good info to pass along.
I was another "healthy runner" that experience a blockage at age 54. My HDL ran in the low 60s and LDL about 130 with low trigly. I had been competitively running and cycling for 30 years. My family history was essentially negtive. The only risk factors I can identify are that I am something of a worrier and react fairly stronly to work stress. I also found that my homocysteine was high. My question has always been that if the root cause of my illness is found and addressed, what is going to keep it from coming back? My answer was to retire at age 59 and maintain very low LDL (63) with drugs. Even though my insurance paid for the 64 slice scan last year, it wasn't too useful in that the calcification hid many of the areas of interest. Unfortunately, what is did show was that my mammary graft to the LAD has essentially closed off, but I am without symptoms and continue to run.
A more troubling bit of info was a case history I ran into in my research where a physician marathon runner was found to have extensive calcification and atheroschlerosis. Testing showed his blood pressure to rise fairly high during running and this was blamed for his disease.
I always tell people I plan to keep running in spite of the fact it may be killing me.
Thanks so much for the feedback. Hate to read stuff like that because (while I know it is an isolated example) it seems to totally debunk everything they tell you to do...for crying out loud...you had and HDL of SIXTY and were a runner?!?!
Sorry to hear about your problems...I think you have handled them extraordinarily well. Do they blame your disease on bordeline high LDL? I mean 130 isn't even that high is it?
Makes me frustrated with the whole medical community...just that they seem to make too many assertions based simply on stats.
At this point, I really don't have one factor I blame for my disease. I don't think it was cholesterol, because like you said, it really wasn't high for such a high HDL. I am suspicious of the blood pressure connection since I spend so many hours at high heart rate in both running and cycling. I have heard anecdotal accounts through this forum of a number of runners/cyclists with blockages at the same point as mine (LAD at the bifurcation). I haven't found even one cardiologist that agrees with this point of view however.
maddening...you read paper after paper and article after article that says, "exercise and manage your cholesterol" and neither seem to have helped you and one quite possibly could have hurt you? Makes me feel very frustrated that docs really know what they are talking about.
Why does it seem that for every obese or bad family history or smoking person on this board who has CAD there are THREE that are in shape with seemingly no risk factors...makes me sad.
I had two stress tests that were normal except were terminated due to "hypertensive response to exercise". My peak systolic was about 220 mm. In further reading, I find that this is quite normal, particularly among athletes with greater stroke volume.
I guess the short answer is that the docs really don't know it all. The best we can do is control the risk factors we are aware of. I take a low dose beta blocker to reduce bp during exercise, folic acid + B6 +B12 for homocysteine, and vytorin for cholesterol. Retirement has lowered my daily stress significantly, Now, if I could only get rid of a teenage daughter....
Wow, what a situation you have! Makes you wonder what chances the average guy has. Look at me, I am 49 yrs, 50 lbs overweight (but down 60 recently through exercise and diet) I have controlled HP, 110/70 no other risk factors, even my HDL to LDL ratio is rediculasly low with an HDL of 40 and an LDL of 51. I treadmill 45-60 minutes a day, I can't run due to arthitic knees, but I can easily sustain 85% of my maximum heart rate without any difficulty or symptoms of any kind and I have normal BP and HR response. I have had two normal Thallium stress tests in 3 years and echos each of the past 3 years as part of a routine cardiac work up. all normal.
When I compare myself with someone like you that did everything right, it just makes you wonder, what's the use? I guess its like you said you play the cards you're dealt and manage your risk factors as well as you can. I admire your determination.
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