Hi everyone! I just wanted tell you my story so maybe I could save lives.
I have had Type 1 Diabetes for 43 years and have never had my A1C over 7. That sounds pretty good but I do have a lot of fluctuations in my BS. As you know heart disease is high in Diabetes and it also runs in my family.
I have always had a high heart rate (100) and am pretty proactive with getting tests on my heart. Last year I had an exercise stress test which came back normal. For the past 5 months I was experiencing chest pressure with and without excursion. It felt like someone was sitting on my chest but went away quickly once I rested. I was also having palpitations that were not normal for me. Palpitations can be normal but these were happening ever third beat and it felt like my heart was flipping in my chest. I finally went to the doctors after I did some research on my symptoms. She did an EKG which only showed palpitations. I asked my doctor if she could do a nuclear stress test which looks closer at the vessels. She agreed and ordered it. I also had to set up a new cardiology appointment just to be safe. I had that appointment one week later and this cardiologist told me I didn’t need it because I had a normal exercise stress test last year. I did it anyways because I knew something wasn’t right.
I went in for my nuclear stress test and that evening my primary called me back to say it looked like I had a few blockages. I then went to the ER because I couldn’t get any answers from my cardiologist because she was on vacation. Once there they admitted me and said I needed a cardiac cath and will probably need a Stent. After the procedure I woke up and heard the word bypass. I couldn’t believe that at the age of 47 I had three blockages, 2 at 80% and one at 70%. The doctors were surprised of these results. After I had my open heart surgery they found another blockage. I had a quadruple bypass!! None of these showed up on my EKG, exercise stress test or an echocardiogram.
I’m a firm believer in the nuclear stress test!! If I wouldn’t have pushed for that test, I may not be writing this message. I didn’t realize that diabetes can show different signs of cardiac issues so if you are not sure please go in and ask for this test. The cardiologist did tell me because I’m a diabetic that I will probably need another bypass wiithin 10-15 years . I am one month post-op and doing great! I know this was long but I hope this story saves someone’s life
Hi everyone! I just wanted tell you my story so maybe I could save lives.
Out of curiosity, have they considered doing atherectomy in place of a bypass?
Jenni, welcome and thank you so much for posting. I am so glad that you are doing well after going through so much. It was very smart of you to request a nuclear stress test after being told that a regular stress test was good enough. I just had another nuclear stress test and you have helped me have more confidence in the results. Unfortunately, according to more than two of my cardiologists, they see many diabetics who need their help.
Yes I did ask about this. At least I think this is what we talked about. They did not get good results from this so for good long term results getting the bypass was the result
I am a firm believer in the nuclear stress test! I’m glad you have gotten one. I was so mad when he told me it was my diabetes.
Thank you, Jenni. I’m so glad you are ok. We really cannot be too proactive about this stuff. I’ve see a lot of these situations not turn out so well during covid and in the last few years. Great job advocating for yourself!!! Your a rockstar!
Thank you so much! It’s just scary to think how many of us are walking around like ticking time bombs.
Welcome to the group.Thank you are for sharing ,very informative. Nancy50
Thanks for relating your experience to us, @Jenni1052021. I’m glad to read that you survived this serious situation. Heart disease is the number one killer of people with diabetes.
It’s good to be proactive in pushing your doctors for tests and treatments but sometimes it’s hard for the patient to discern whether to push the doctor. We all like to think that the doctor is the expert and we should naturally defer to their judgement in every situation. But we’ve also heard many stories like yours where patients seem to fall through the cracks and suffer adverse outcomes by doing or failing to do some test or treatment.
I’m curious if any of your doctors ever offered to perform a coronary artery calcium (CAC) scan. This is a non-invasive CT scan with little risk to the patient. It looks at the heart’s coronary arteries and detects the amount of calcium in those arteries. From this calcium measurement it can extrapolate the total amount of plaque, including soft and fibrous plaque, that has built up. It is not definitive in the way a cardiac catheterization is but it also is non-invasive, easy to do, and relatively inexpensive.
In an emergency situation like you found yourself in, I can see why the doctors chose the cardiac catheterization as that allows them to see the disease directly. But what about the years leading up to this event? It seems to me that a CAC scan would have alerted you and your doctors about the seriousness of your situation earlier.
Congrats on advocating for yourself and influentially steering the treatment that brought you a favorable outcome!
I have never heard of this! I just don’t think they took me seriously because I was so well controlled. I work in the medical field and know doctors are like robots. They offer what they know just to get through to see their next patient. I’m not saying all doctors are like this but the hospitals are pushing to see more patients and this has caused fatigue. The pressure is real to make money and see more patients. It’s really sad. I’m just glad I got the doctor that wanted to listen. I’m glad you are ok
Terry, you might want to look at what the Mayo Clinic and other sites have to say about the CAC scan. Apparently this test is not recommended for people with diabetes at Mayo nor is it recommended for people who have serious arteriosclerosis. Of course, I don’t know if this is true, but just what I read during a brief search.
I do know that the CAC scan technology was resisted by most mainstream medical institutions when it first started to gain public awareness 20-30 years ago. I think the cardiologists took a dim view of this tech and that influenced institutional opinion about it.
Now, many hospitals do have one of these machines and the doctors are keeping it busy. Most insurance plans, however, do not cover this test.
The way I think of the CAC scan is this. Would you rather directly image plaque in arteries or would you rather look at blood cholesterol levels as a proxy of artery health?
Medicine resists change and I see marquis name clinic’s reluctance to embrace this technology as symptomatic of that phenomena. There’s little risk to undergoing a CAC scan. It does not replace other tools cardiologists have at their disposal but this tech should be used when appropriate.
If the original poster had the benefit of a CAC scan five years ago, she would not have been subjected to a medical emergency with rushed decisions and attendant risks. Atheroscelerosis does not appear overnight; it takes many years, even decades, to develop.
Another marquis name with a different take on the CAC scan, Johns Hopkins:
Oh sure, I agree that 5 years ago the CAC would have been a great test for Jenni just like I think it would be for anybody. I am going to ask our cardiologist about one for my husband. I wish I could have had a warning scan, I can’t remember if I ever even had a regular stress test before suddenly needing stents.
Mayo was saying that for someone with more than moderate heart disease that the nuclear stress test is a better test to have. They believe it is a better test for anyone with diabetes and that seems debatable. They didn’t say anything about just going by blood pressure and cholesterol numbers, but I am sure many doctors do which is too bad.
Which is kind of a blessing because it would probably cost $5,000 with insurance. Our hospital charges $100 for this test.
That’s a shame because this is the only test that saved my life.
I am 55 this week… I had a treadmill and nuclear stress test done maybe 3 years ago.
Everything was fine. My control now is really good but it was terrible in my 20s. Moderate in my 30s
There is a large genetics influence with heart disease as well as diet.
Diabetes is not the single cause. My father had a little scare at 71, and he got stented. So I do keep a careful eye on it.
However he is not diabetic, normal weight and he gets a lot of exercise.
So it’s a bit of a crap shoot