Hi @pepper1311, I'm glad to join @colleenyoung welcoming you to Connect. Much of your recent six months of troubles remind me of the problems I've been dealing with for several years, including a comment one day from a PhD pharmacist about my "heart failure" -- a term no other doctor had used to describe my symptoms. But that term woke me up and -- more important -- injected reason and logic into my diagnoses over the years involving Hypertension on the one hand and Chronic Kidney Disease on the other. Fortunately, my current therapy -- based on exotically proper and effective mix of medications -- has me feeling pretty well, as active as always in the past, optimistic about the next 20 years (taking me past 100), and confident of my medical team and grateful for their relentless pursuit of the causes in my symptoms.
What has been the secret to make my situation manageable and encouraging? Nephrology! My HMO adopted a policy several years ago of referring Hypertension cases first to a kidney doctor and of giving her the flexibility to spend up to three years tracking down the demonstrable causes of high blood pressure -- rather than taking the customary cheap route of a simple diagnosis of "essential hypertension" -- which essentially means the doctor(s) don't have the slightest idea of the causes in an individual case. The HMO told me the main reason they rely on nephrology at the outset is that most of the symptoms that cause Hypertension are rooted in the kidneys, the adrenalin glands posted on the top of the kidneys, and components of the brain that interact with both of them as well as the circulatory system of arteries and veins.
In my case, as in others I know about at my HMO, my nephrologist took special pains and invested special effort over several months of investigation to find the basic cause. To do that, she enlisted an endocrinologist in tracking and studying the hormones and other factors in my blood and consulted regularly with her father, the leading cardiologist in the state where she grew up and got her medical training.
However, I can't suggest that my experience contains answers that apply to your situation (despite the similarity in our symptoms). The medical team that has examined you and treated your symptoms are your only reasonable recourse in a search for either a cure or a stabilization of your condition. If you aren't satisfied with their treatment, I'm confident they would help you find another team to give you second opinions that might be different. And perhaps most important, they will help you find the best available nephrologist -- hopefully to give you the kind of study and discovery that I have enjoyed. Martin
I know your post is older but It is an incredible insight into your personal journey regarding your medical team and illness.
Loved your post. Very encouraging
Elizabeth