Stiff Heart
Hi there -
My mother (76 yrs) is at Mayo Clinic trying to figure out what is causing her shortness of breath. She has Parkinson's, but we didn't think that was the cause. We found out that she has a "stiff heart" and will be taking lasiks to remove fluid. I'm trying to learn more - anyone have experience with this?
Thanks and well wishes,
Britt
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Hello @predictable
Your HMO is certainly enlightened. I'm glad to hear that you received such diligent care.That is something we all should look into to. Thank you for that great post.
Teresa
@predictable Hi, friend. You really make the case for one of my favorite points. That is, that so many of our diseases and disorders can come from a single issue OR that a single sort of disease or disorder presented by a few different people can have a plethora of causes. I have a stiff heart, and Docs have used that single presentation to diagnose me with at least 25 difference diseases or disorders. From about 30 different mutations of Amyloidosis to Xanth...something. And it can be a case of multiple presentations in one person. I.E., we are pretty sure I have Primary Systemic Cardiac LiteChain Deposit Disease, and Multiple Myeloma And cancer in several body parts and Gelsolin and Cystatin-C Amyloidosis AND damage from repeated concussions and ...... I think this makes the point that it is not wise to lock in on one favorite diagnosis too quickly, and to do as much of your own study as you can. I have fighting this for many years, and I will find out later this week about a tumor now growing again in one of my kidneys, 40 years after it was removed the first time. So be patient.
@oldkarl, I'm puzzled by your conclusions about my symptoms and diagnoses. I have noticed that you seem to link your maladies to Amyloidosis. In my case, the diagnoses that worked and those that didn't are multiple and very different, and none of them seemed to be a singular cause of the conditions I have. Perhaps you'd be willing to say more about how you see my symptoms as emerging from a single cause.
Martin
@predictable Sorry about that. I was trying to make the point that, with the stuff you and I have, it can be either one malady or a bucket-full of issues involved. Far too often I have been told by two or three doctors, just minutes apart, that my problems is SSSSSS and the other doc says NO, it is a whole package of diseases which happen to run together, or another says Karl, you are just lazy. I was trying to support your efforts to find the truth, wherever that may lead. At our age, I suspect most of us on these lines present multiple disorders. And to make matters worse, there are well over a thousand recognized forms of Amyloidosis. Labs have found several in my blood, bones, urine, skin and other tissues. MM, AL, hATTRwt, CGel, CCys, AH, AAlz, Crohn's, Lupus and more., all part of the Amyloidosis family.
@oldkarl, clearly you and I value highly the medical professionals who go the extra mile to find the root causes of a particular condition -- whether those causes be one or two or a plethora of them. Liddle Syndrome clearly is a sole cause of my Hypertension, and it operately secretly for years to deny me the potassium I need. But of my other foremost conditions, none is attributable to Liddle Syndrome in my estimation. So my search for physicians goes on -- physicians who can't go home at night having simply treated a symptom, rather than probing for a cause. 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
Hi @lizzieann. Glad to make your acquaintance 5-1/2 years after my original posting. In general, I'm still in pretty good health overall, thanks to the work of my medical team at the HMO here in Northern Virginia. It's important to know that my team has moved forward with insights on my symptoms, and that has resulted in better readings on my tests and exams. For example, my HTN has now declined into a non-serious level in my daily blood pressure readings -- almost always in the 140s/80s range (not bad for an octogenarian), and my chronic kidney disease filtration has stopped declining as before. My bladder and prostate problems have stabilized into constant symptoms over time, so I get no surprises any more. And it's all been helped by a return of my ability to get a nap whenever I feel like it. Let me know if I can give you any more information from my experience that might be helpful or encouraging to you in your plans for living better for years. Martin