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

@hopeful33250

Hello @brittalisse,

I remember us discussing your mom’s breathing problems in our Parkinson’s discussion group. I also have a Parkinson’s disorder as well as aortic insufficiency, left bundle branch block and diastolic dysfunction. Even with all of this background, I am not always sure of what symptoms relate to what disorder – it can be confusing to say the least!

Regarding the diastolic dysfunction (“DD”), I understand that it is a mild form of heart failure – if there are no other symptoms such as edema in the extremities or around the heart or lungs. This seems to be my case at present. While I have had DD for a number of years, there is no leg, ankle or feet swelling, however, I do have some accumulation of fluid at night in my chest. I still have a strong ejection fraction – so it all looks good on paper 🙂

You don’t mention your mom’s age nor her physical activity level but in my own case, I’ve learned that physical activity is important for both the Parkinson’s as well as the heart issues. While I’m certainly not able to do aerobic work-outs anymore, I do attend PD exercises classes (PD dance classes can all be done in a chair) and I’ve ordered some PD dance DVDs as well as other PD exercise DVDs. Tai-Chi is also offered and is very, very, very good for PD. It helps with memory, range of motion, and lots of other things. I would encourage you to attend some of these classes with your mom (as many caregivers do) as it will benefit both of you.

It is easy to get overwhelmed when you are dealing with a multitude of health problems that involve different body systems, but always remember that exercise, exercise, exercise is key to keeping flexible and healthy as we age, no matter what our medical paperwork says about us. It is important to realize that we each have some control over our health!

Teresa

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I’ve had diastolic dysfunction for years diagnoised via right heart cath & have had symptoms for years. Just went to my cardiologist today & he told me I may increase my Lasix from 20 to 40 mg if symptoms becomes too bothersome. Wish I knew my prognosis; I’ve definitely out lived by at least 3 times the bleak prognosis on some websites. Oh, my symptoms have basically remained the same for at least 15 years. Some good days, some not so good. If I knew about increasing the Lasix a few years ago, perhaps I would have avoided several ER visits due to chest pain and SOB.

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@c410djh Sounds like my story. I have had DF for many years, with all manner of symptoms and signs. I am on 50 mg of furosemide, and had 30 heart cath procedures over about 40 years. So hang in there. You can live a long time with this.

Liked by Solo Act

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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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@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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Hi @pepper1311, welcome to Connect. I can appreciate that you didn’t envision retirement to be spent in a lab or physician’s office. That’s not what the commercials lead us to believe. There are many here on Connect who are managing similar conditions as the ones you describe. Let me introduce you to @predictable and @thankful to begin with. I guess we could call ourselves “ClubMed” of the medical kind.

Pepper, I wasn’t sure from your post if you’ve already had knee replacement surgery or if that is something coming up in the future. Also, is the swelling of your ankles now under control?

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@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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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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@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

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@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.

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@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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@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

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@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 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.

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@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

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