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Cholesterol, PAD and now 50-70% blockage of a coronary artery - and my doctors are NOT helping me
I have a pretty straightforward question: what do patients with heart disease do to battle this horrid disease who CANNOT take Statins. None. Nada. Even the newer injectables.
I tried to take a Statin when I was first diagnosed with high cholesterol. In less than 2 months, I developed Every Single Life-threatening side effect, as follows: (a) Pre-Diabetes; (b) Stage II Kidney Disease; (c) crippling Myalgia in both feet and legs. I went from being able to walk 3 miles a day to barely being able to hobble around my cul-de-sac. I also developed brian fog and rapidly worsening eyesight. I stopped taking Atorvastatin, and both the kidney disease and Pre-Diabetes reversed back to normal levels. The myalgia in my feet has taken almost 2 years to finally start to reverse to where I have more strength in my feet and can walk farther. Almost 2 years. That's just crazy.
I know "they" say that adverse side-effects to Statins are rare - but that doesn't mean much when all of them happen to you. My terrible horrible medical karma strikes again.
My cholesterol was normal until I hit Menopause and then Wham! It skyrocketed overnight. Menopause has not been my friend. Kind of hard to avoid, however - unless you die first.
So this is one of my biggest conundrums. And as Albert Einstein said: "The definition of insanity is doing the same thing over and over and expecting different results.
I already know that the statins my cardiologist wants me to take by the bucketfull will put me into kidney failure. And it will happen fast. I know this because it took less than 2 months of Atorvastatin to develop Stage II CKD. I have watch my blood work like a hawk. So what are patients like me supposed to do? The body needs cholesterol, it just doesn't need as much as my body wants to make. Obviously. But I am being told I have to choose between MAYBE dying of coronary artery disease or PAD, or the absolute certainty of developing End Stage Renal Disease if I take massive doses of statins. And the muscle damage in my feet and legs will also happen again. And this time, it will be even worse, because he wants me to take a much higher dose. I don't want to end up in a wheelchair, hooked up to a dialysis machine.
I feel like I am being handed a death sentence no matter what. Die from heart disease if I don't take a Statin, or die from Kidney Failure if I take a Statin. And kidney failure can cause heart failure. And I will, obviously, develop Diabetes. Not just Pre-Diabetes. Adult onset Diabetes. Because it happened once already. Diabetes ALSO contributes to heart disease.
I find it hard to believe that in 2020, there are no other options for patients who cannot jump on the Lipitor bandwagon. I have nothing personally against Statins other than the fact that they will kill me.
I haven't been able to sleep in the 2 weeks since I was given this prognosis. The terror is real. And I know that anxiety will make everything worse. I am so past "mindfulness' being able to calm this anxiety hell, and need chemical help. But there's a problem with that too: I cannot take SSRIs. Because they cause my cholesterol to skyrocket even higher.
I'm a complete mess. And all of my cardiac symptoms are worse now, due in part to the terror I am now experiencing. The frustration. And the fact that this is happening DURING THE WORSE PANDEMIC SINCE THE SPANISH FLU.
I am facing an angioplasty for sure, and probably a STENT. Of that I am almost 99.99% certain. And this is new to me. I never did anything to myself to bring on coronary artery disease. So I'm also a little ****** off. Yeah, I know. Its a mostly useless emotion. But I am also bristling at how long it took before my doctors took me seriously. Had they listened several years ago when I told them I was having scary symptoms, and just told me I was being "nervous" and suffered from "anxiety," perhaps I wouldn't be as sick as I now am. Turns out, it wasn't "plain old anxiety." Had they believed me, and ordering the CT Angiogram I have begged for for 4 years, I know I wouldn't be this sick. I'd have a better chance and more choices.
I have Kaiser Permanente as my health insurance. Their neglect and unwillingness to believe me - a WOMAN - is a big part of why I am now so sick. And I know I am not the only victim of Kaiser neglect. And now, because they know they ******* up, my insurance situation has gone from bad to worse quite quickly. My Primary Care doctor is pulling a vanishing act, right when I need her to coordinate the procedure(s) and hospitalization I'm going to have to endure. During a Pandemic. Where you have a 1 in 5 chance of getting infected with the COVID-19 pathogen.
I need help. I don't want to die from this, and I don't want to be so crippled that I'm hooked up to a dialysis machine like my poor husband. I already know I would NOT survive that.
I have a very strong will to live, but this is the hardest thing I have ever faced, and I'm counting almost dying from a ruptured gallbladder (also medical neglect) and a horrific bladder condition that until recently, was the worst pain I have ever had.
This is purgatory.
Rant over. For now.
AHAASAKatie, July 20, 2020 9:56am EST
I am so very sorry that you are having to manage so much. And it is totally ok that you shared all of it with us on the site, so no worries about the "rant." We have all done that at one juncture or another. I am going to start with the basic information (although I expect you know it already).
Take control of rising cholesterol at menopause (sourced from Harvard Health Publishing)
Menopause and Heart Disease (AHA Article)
I have a few suggestions for you.
1) talk to your pharmacist. Pharmacists are truly the drug experts and they might be able to give you some good talking points to have with your cardiologist.
2) See if you can get your OBGYN (or whoever is managing the menopause, if anyone) to confer with the cardiologist and try to get everyone on the same page about treatment.
3) Who managed the kidney failure, can you get them involved in this discussion and again try to get the medical folks working as a team?
I know from experience with my mother and my daughter (Mom is in her 80's with multiple co-morbidities & my 18-year-old is a special needs cherub) the most important part of treatment is getting the right team together and working in coordination. And unfortunately, it shoulds like you are going to have to be the one that does this for yourself.
I wish I had great answers for you. However, I can sympathize with you about getting doctors & insurance companies working together. I think many of our members probably can as well.
Please know that you are not alone, we are here with you to listen and share experiences as needed.
JamesPL, August 3, 2020 2:36pm EST
I too have a cholesterol problem and am managing it with statins so I can imagine what kind of struggles this is causing you. Katie makes some excellent points to which I’d like to add. I agree that trying to develop a managed plan with your doctor is a good approach. But it may turn out that you will ultimately have to manage without statins as you are discovering. That said, diet and exercise may be your best weapons which I’m sure you already know. But you may have to be very aggressive with it especially since exercise has shown to be a good tool to lowering cholesterol. Research all you can to see what type of exercise is most effective and then pursue it. As with your meds, this should also be discussed with your doctor.
One other item I’d mention is a discussion of what type and how much of blood thinners you should be taking as a preventative.
These all good conversations to have and hopefully it will result in a plan that will work for you.
I wish you the best of luck!
Hear2Heart, September 6, 2020 12:50pm EST
Here's my two cents worth and not to add to your anxiety [anxiety was a trigger to my angina that landing me in the hospital to find that I needed a stent - a "blessing in disguise", but to share my experience.
Ok, my CT scan of the heart showed 60% blockage of the left anterior decending (LAD) artery, but upon heart cathereterization, they found the blockage was actually 80%, which falls into the - not be overly dramatic, but sense of reality - "widow maker" category [widower maker for you]. A couple of webpages that have you validate my understanding of this issue:
The moral of the story appears to be that [not a medical opinion or advice, just my personal experience ] the interventional cardiologist will never get an accurate picture of the amount of actual blockage without a heart cathereterization. The SECOND moral of the story appears to be that a blockage that large to the LAD needs expert medical diagnosis and treatment sooner than later.
I have heard to the frustrations of an HMO and their severe orientation to cost cutting. Here are my ideas from my experience:
- Convey to your cardiologist that you understand how serious this condition is and how you may realistically be beyond the case of "this medicine of that medicine", that you probably need more diagnostic work. "The educated patient is the best patient".
- Can you ask for a second opinion?
- Does Kaiser have a "patient advocate" who can hear your concerns and escalate your case.
I deeply empathisize with the pain and anxiety that you are going through and I don't want to escalate your anxiety. Get professional help for the anxiety please; anxiety can worsen angina or worse exacerbate your cardiace condition. I hope that saying "God bless you and heal you!" doesn't offend you! I wish you all the best in overcoming this condition and situation. PLEASE keep this forum updated of your progress...