1. < Heart & Blood Health

Stiff Heart

Posted by brittalisse @brittalisse, Sep 21, 2017

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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 19, 2017
In reply to @pepper1311 "In June 2017 ankles swelled to football like sizes. Went to hospital, told heart failure, laxis..." + (show)
@pepper1311

In June 2017 ankles swelled to football like sizes. Went to hospital, told heart failure, laxis 40mg every twelve hours for five days then to cardiologist and PCP. Told right sided heart failure, had tons blood taken when on lasix BUN high and GFR Low off after a week BUN high normal GFR is 60. Weighted self daily then a week ago the show started again Lasix 40mg p.o. for three days ( lost 10 pounds of water) had labs before Lasix normal, after kidney fuction down. More labs Monday. Inbeyween had to have knees scoped and told maybe a year before replacements needed ( both done at same time, and it does hurt) As well after first income tax have red patches under skin on arms, looks like blood blisters but never bleed only under skin, very unsightly. I’m 68 and up till knee surgery did hour a day of hard excersise. It seems like a merry go round, Lasix ro take water offf then kidney dysfunction. On a Beta Blocker for years. Had PVA in 2002 for rapid A- Fib. Still get runs of it but not bad. This not how expected to get old! May as well be dead ! Great retirement, living in a lab or a physicians office. .

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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

REPLY
oldkarl | @oldkarl | Dec 20, 2017
In reply to @pepper1311 "In June 2017 ankles swelled to football like sizes. Went to hospital, told heart failure, laxis..." + (show)
@pepper1311

In June 2017 ankles swelled to football like sizes. Went to hospital, told heart failure, laxis 40mg every twelve hours for five days then to cardiologist and PCP. Told right sided heart failure, had tons blood taken when on lasix BUN high and GFR Low off after a week BUN high normal GFR is 60. Weighted self daily then a week ago the show started again Lasix 40mg p.o. for three days ( lost 10 pounds of water) had labs before Lasix normal, after kidney fuction down. More labs Monday. Inbeyween had to have knees scoped and told maybe a year before replacements needed ( both done at same time, and it does hurt) As well after first income tax have red patches under skin on arms, looks like blood blisters but never bleed only under skin, very unsightly. I’m 68 and up till knee surgery did hour a day of hard excersise. It seems like a merry go round, Lasix ro take water offf then kidney dysfunction. On a Beta Blocker for years. Had PVA in 2002 for rapid A- Fib. Still get runs of it but not bad. This not how expected to get old! May as well be dead ! Great retirement, living in a lab or a physicians office. .

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@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.

REPLY
Martin Jensen, Volunteer Mentor | @predictable | Dec 20, 2017
In reply to @pepper1311 "In June 2017 ankles swelled to football like sizes. Went to hospital, told heart failure, laxis..." + (show)
@pepper1311

In June 2017 ankles swelled to football like sizes. Went to hospital, told heart failure, laxis 40mg every twelve hours for five days then to cardiologist and PCP. Told right sided heart failure, had tons blood taken when on lasix BUN high and GFR Low off after a week BUN high normal GFR is 60. Weighted self daily then a week ago the show started again Lasix 40mg p.o. for three days ( lost 10 pounds of water) had labs before Lasix normal, after kidney fuction down. More labs Monday. Inbeyween had to have knees scoped and told maybe a year before replacements needed ( both done at same time, and it does hurt) As well after first income tax have red patches under skin on arms, looks like blood blisters but never bleed only under skin, very unsightly. I’m 68 and up till knee surgery did hour a day of hard excersise. It seems like a merry go round, Lasix ro take water offf then kidney dysfunction. On a Beta Blocker for years. Had PVA in 2002 for rapid A- Fib. Still get runs of it but not bad. This not how expected to get old! May as well be dead ! Great retirement, living in a lab or a physicians office. .

Jump to this post

@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

REPLY
oldkarl | @oldkarl | Dec 20, 2017
In reply to @pepper1311 "In June 2017 ankles swelled to football like sizes. Went to hospital, told heart failure, laxis..." + (show)
@pepper1311

In June 2017 ankles swelled to football like sizes. Went to hospital, told heart failure, laxis 40mg every twelve hours for five days then to cardiologist and PCP. Told right sided heart failure, had tons blood taken when on lasix BUN high and GFR Low off after a week BUN high normal GFR is 60. Weighted self daily then a week ago the show started again Lasix 40mg p.o. for three days ( lost 10 pounds of water) had labs before Lasix normal, after kidney fuction down. More labs Monday. Inbeyween had to have knees scoped and told maybe a year before replacements needed ( both done at same time, and it does hurt) As well after first income tax have red patches under skin on arms, looks like blood blisters but never bleed only under skin, very unsightly. I’m 68 and up till knee surgery did hour a day of hard excersise. It seems like a merry go round, Lasix ro take water offf then kidney dysfunction. On a Beta Blocker for years. Had PVA in 2002 for rapid A- Fib. Still get runs of it but not bad. This not how expected to get old! May as well be dead ! Great retirement, living in a lab or a physicians office. .

Jump to this post

@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.

REPLY
Martin Jensen, Volunteer Mentor | @predictable | Dec 20, 2017

@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

REPLY
Suzie | @lizzieann | Jul 18, 2023
In reply to @predictable "Hi @pepper1311, I'm glad to join @colleenyoung welcoming you to Connect. Much of your recent six..." + (show)
@predictable

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

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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

REPLY
1 reply
Martin Jensen, Volunteer Mentor | @predictable | Jul 18, 2023
In reply to @lizzieann "I know your post is older but It is an incredible insight into your personal journey..." + (show)
@lizzieann

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

Jump to this post

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

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