Exercise and fluid retention

[Laoshur]

Between Saturday and today I have gained a number of pounds of fluid, which is sitting around my ankles and probably some in my abdomen and a little in my lungs judging by the gurgling I hear lying down. I am sure that this is the direct result of smoking a turkey and cooking for a party at my home on Saturday. We have one of our students visiting us from China, so I threw a party (small for me with only about 16 people).

I have two questions: 1) How many of you who have chf get hf symptoms from working hard? I always seem to have this, but I rarely hear others discuss it or say what they do about it.
2) Why is it that sometimes the fluid comes right off and other times it doesn't? I have taken triple the normal dose of spironolactone and furosemide today to no apparent avail. I am finally lying down with my feet above my heart (hard to type this way!) and it is starting to come off, but I have been lounging on the couch all afternoon with my feet up but below my heart to no avail.

Any ideas on these?

Thanks, Rhoda

[Pam Alexson]

That's a trick Rhoda and as you know I have similar issues and it is a maticulous path we travel and not of our choosing. You HAVE to get those feet up and get in the cooler environment if it is hot where you are and you must take the diuretic when that protocol fits into your day of activity . Working hard or any work on my feet gets me in the same predicament these days so I, like you, must put the laptop on my belly and work that way.
I do not think, HOPE... a LOT of people are not like you and I here with regards to the extreme fluid issue.There are a few of us though and I believe they will jump in with us. My brother does not deal w/ it as I do either and rest assured I know what you are dealing with. I have been forced to function as best I can with previously scheduled commitments while lying on my back and it seems to be the only way to keep the fluid from bursting my legs open. In one week and 1/2 I have taken off 17 pounds YES!! 17 with an increase of Lasix to 80 mgs 2 times / day.
Now I also have a new diagnosis GOUT, but it was found before the increase of lasix. Diuretics and some heart meds can bring it to those of us, post menopausal women. FIGURES though, a disease that is 9x's more common in men and I get it. I believe it has been with me for a while and is responsible for my kidney stones.

You probably need( that is the plan for me as this is not in control even w/ the weight/ fluid loss) to have a right heart cath if it has been a while since your last and your HCM guy will be looking for increased intracardiac pressures( signs of the dreaded right heart failure) to go w/ the left heart failure of HCM.
I have found compression stockings 20-30 mm strength( not to be confused w/ the hospital teds) helpful but so awful in the heat. When I take them off at night the edema( pitting) is there but much less. It comes back if I get up and am about and do not have them on.

1.So I am here w/ you in this little club of fluid filled, CHFers, w/ HCM. It is nice to hear from you though I am sorry you are also having these issues. So you have one friend signed up.
2. I think the reasons are somewhat obvious as to why it comes off sometimes and not others.You are on your backside and it is coming off a little. The kidneys did not know it was down in your legs and in your tissues hiding so it said .. hold everything all the water must stay and any new water too!
Simply we cannot have a life that we choose w/ this fluid issue and I like you am having to make some huge adjustments and compensations, to do anything. I do worry that my kidneys will be next and cannot help but think from time to time of the route that Burton and some others took. It is very hard to think that life may become as fragile as it sometimes seems it is becoming with heart failure and huge amounts of fluid being trapped in our bodies and wearing our hearts down faster. I do think also from time to time about what if things go sour fast and I do not have a chance to turn around and run back to the other side. LOL I will not be able to run! I am becoming more aware of the frightening visions that may loom ahead and it is VERY hard to feel alone at times in this category, so I am at least happy you stepped forward and had a question..You dear Rhoda have identified that there is possibly an elephant in some of our living rooms.

Thank you

Here is a link to the stockings:

http://www.compressionstore.com/

Pam

[Pam Alexson]

Congestive heart failure is a condition sometimes referred to as pump failure. The muscle of the heart fails to properly pump blood through the circulatory system. Because blood flow to the kidneys is reduced, they retain sodium and water. That water enters the circulation, and the excess volume accumulates in the lungs, abdominal organs, and the feet and ankles. There are many different ways to categorize heart failure, including the side of the heart involved (left heart failure vs. right heart failure) or whether the abnormality is due to contraction or relaxation of the heart (systolic heart failure vs. diastolic heart failure). Heart failure can be classified as either a pump problem, where not enough blood is squeezed out of the heart to the body, known as systolic dysfunction, or a filling problem due to a stiff heart, known as diastolic dysfunction. Systolic failure can lead to blood backing up into the lungs, causing shortness of breath, also known as pulmonary edema. Problems with the heart's pump function can also create problems for the rest of the body, such as kidney problems, liver problems, fluid retention and lower extremity edema. Even when the heart's pump function is normal, if the heart is thickened and stiff, congestive problems can arise. Specifically, if it takes higher pressure to fill the heart, then the lungs again can become full of fluid and shortness of breath can occur. Though heart failure may be limited to systolic or diastolic dysfunction, having one type often leads to having the other as well.

The heart consists of four chambers: the right atrium, the left atrium, the right ventricle, and the left ventricle, and four major valves: the mitral valve, the tricuspid valve, the aortic valve, and the pulmonary valve. Atria are relatively thin-walled chambers that receive blood from the circulatory system and from the lungs. Ventricles are muscular chambers that pump blood into the circulatory system and into the lungs. Blood passes from the atria into the ventricles through two processes. During the "resting phase," when the ventricles are not contracting, the tricuspid and mitral valves open and allow some of the blood that has accumulated in the atria to flow passively through the valves into the ventricles. Then, the atria contract and actively pump blood out through the valves and into the ventricles. Once the ventricles fill with blood, they contract, pumping blood to the lungs and the rest of the body.

When the left ventricle cannot adequately pump blood out of the left atrium, or when one or more of the heart valves becomes leaky or narrowed (stenotic), blood can "back up" into the lungs, causing "left-sided" heart failure. When this occurs, the lungs become congested with fluid (called pulmonary edema), causing difficulty breathing and interfering with the movement of oxygen from the lungs into the bloodstream, causing fatigue. When an abnormality or condition affects the flow of blood through the right ventricle, pressure in the blood vessels increases and fluid is forced from the blood vessels into body tissues. This "right-sided" heart failure causes swelling (edema), usually in the feet and legs, and sometimes, in the abdomen.




So Rhoda,
It has a lot to do w/ the kidneys making mistakes as they just do not know they can't get the message accurately if the fluid is hiding so they think we are short on fluid. And our hearts are stiff and always behind in meeting demands so add some activity and we are WAY,WAY behind in meeting the demands and balancing everything out.
Pam

[Bucky]

Hi Pam:

Hang in there. I am suffering on the fluid side also, but it seems to be a much lesser degree than you're speaking above. I keep an eye on it and as your advised me a few weeks ago pick my time for the diuretic and get my feet up. Yes, life is fragile.....much more so than it used to seem.

Now personally and on the less serious side (I couldn't resist this), I think Rhodas problem has to do with "Smoking A Turkey". I smoked some strange stuff in my younger days, but I don't recall ever smoking a Turkey. I mean, which end would you start at????????


bucky

[Pam Alexson]

OMG... I think you can hear me laughing all the way to Las Vegas!I laughed so hard I cried. I can't wait for Rhoda to see your post she will laugh also and you know laughter is the best medicine and you do not have to pay for it. Doug..thanks I needed that! WooHooo!!!

Pam

[angall]

When I was hospitalized for heart failure, one of the heart failure specialist told me to lie down for at least 1/2 hour after taking lasix, furosimide etc., and to elevate me feet. I still do this because of retaining fluid. I also wear compression stockings and I was told to make sure I put them on when I get up in the morning, before doing anything, and not to take them off until I go to bed at night.
I hope this helps

[Laoshur]

Thanks, my fellow floaters!

Bucky, hmmm, can't figure out which end to stick in your mouth when smoking a turkey? Just think about it a minute. Which end would you put in your mouth? ;)

Pam, I think you hit the nail on the head about the fear that someday this will just be the end of my freedom to choose what I do. Some of my earliest memories are of my two aunts who were constantly having to take to bed to get the fluid off. The fact that they struggled with this for years and died much younger than I am is not encouraging. However, in many ways I feel blessed because from most perspectives it seems to me that my problems seem pretty mild most of the time.

I do have one other question: Do others get intense pain just below the ribcage on the left side when they have fluid problems? It seems to me that there is a connection, but with my pancreatic neuroendocrine tumor surgery and subsequent pancreatic problems, it is also possible that the same exhaustion that leads to fluid problems, also causes pancreatic pain. I would love to know if others with hf have pain in that area.

Rhoda

[Bucky]

Hi Rhoda:

Your absolutely right. Hope I didn't offend you, just trying to make light of what for us HCM'ers is another thing to have to worry about. As you know, Pam is the source and that's where I go for Info. The best of luck to you.

bucky

[Reenie]

Rhoda, you just brought up something very weird and unexplained in my household, pain under the lower left ribcage. My husband has suffered with this for years, since he was a kid. It's not constant and sometimes doesn't occur for weeks or more at a time, but we've never been able to figure it out. Originally he thought it was due to his kidneys because he had urinary reflux as a child, but they fixed that problem. We've speculated about more urinary/kidney problems, gall bladder problems, even spleen problems, but nobody has been able to figure this out. Can you please explain what you feel when you hurt there? His is a heavy, dull ache I think. I'm very interested in seeing if this is HCM related.

Does anyone else have this particular symptom from time to time?

[Pam Alexson]

I think this is it and you could still have the displaced liver, pancreatic swelling w/ increased fluid retention.The abdominal swelling pushes on all abdominal organs and HURTS.I do not believe it is exclusively right sided failure as we all seem to have it if we have fluid accumulation and none of us have been told we have right sided failure.

{This "right-sided" heart failure causes swelling (edema), usually in the feet and legs, and sometimes, in the abdomen.
Heart failure can be classified as either a pump problem, where not enough blood is squeezed out of the heart to the body, known as systolic dysfunction, or a filling problem due to a stiff heart, known as diastolic dysfunction.
Problems with the heart's pump function can also create problems for the rest of the body, such as kidney problems, liver problems, fluid retention and lower extremity edema.}

This above snippet from the article I took it from says it , PUMP function is the general term. If the ventricle( due to stiffness) is not receiving enough volume to meet the bodies demand..and demand goes up when activity increases , the heart rate has increased, the heart is working hard and there is a back log and hence a glut of fluid accumulated. It has to go somewhere so it begins to inundate the organs and tissues .

I have had this feeling for the duration of my HCM and it does get worse if I am retaining too much fluid . I have had a lot of re-arangement of internal anatomy due to many surgeries( one was the myectomy). The pain is still there when I swell just shifts from left to right and even to the back in vicinity of lower lung lobes as well. That's when I am seen rubbing the areas ( as if that will make it go away). I have complained about it to my family and I do not, am not able to eat much of anything when this happens ..just seem to want more and more fluids. It subsides when the diuretic has worked and I have been in bed mode resting and decreasing the edema all the way around.

[Pam Alexson]

http://www.proresourcenet.com/diagnoses/congestive_heart_failure.htm

SOME HCM hearts have what's called subtle systolic dysfunction. As this is a "blurry" area at times understanding the differences and then progression of heart failure , THERE is a little crossover of symptoms between right sided failure and left sided failure and that seems to be one reasoning why some of us present with the liver engorgement , pain and swelling that seems to be of the right sided failure. This is one question we need to have more information on and I will ask at my visit next week. Perhaps Lisa could get us more info in the meantime from expert opinion.

See pages 12& 13 ist :
http://books.google.com/books?id=ratuo8Jzim0C&pg=PA13&lpg=PA13&dq=subtle+systolic+dysfunction+in+HCM&source=web&ots=c1M4j0VmL0&sig=Oz4ScedFxzFQdD8JfyS6kpXCrqs&hl=en&sa=X&oi=book_result&resnum=7&ct=result#PPA25,M1

http://cardio.bjmu.edu.cn/reference/1178.pdf

http://cardiovascres.oxfordjournals.org/cgi/content/full/64/1/9

[Midge Rollins]

I too had this pain even in college and did not have a clue why. After HF symptoms began it became worse. I do believe it is fluid in the abdominal cavity. that is where I carried fluid much more so than my feet and legs. Love that pregnant belly. Doug, I too loved the smoked turkey statement. Meeting you and being able to put a face to the guy with the great quips was fun.

[Bucky]

Thanks Midge:

That kind of silly stuff just pops into my head once in awhile.....go figure. Probably caused by lack of oxygen from HCM...who knows.

Pam:

Regarding fluid retention.......

I seem to have this almost constant feeling of fullness in my stomach these days. Some days more, some less....but always just kind of hanging around. I first noticed this symptom years ago when I would eat a meal and felt fuller than I thought I should, based on how much I ate.

Is this fullness fluid retention, I have kind of assumed this.

Also, some nights when things aren't going too well I'll get lung pains which seem to emanate from the bottom of my lungs.....again, I've always assumed this is fluid retention.....

Re right sided versus left sided.....I have symtoms of both right and left side heart failure. Is this common for HCM'ers and is it not necessarily an indication of impending rapid HF as it is an indication that the dyastolic dysfunction we have creates both kinds of symptoms.

No more turkey jokes until tomorrow.

doug

[Laoshur]

Bucky, actually I was being funny back. My actual smoker smokes the whole turkey at once, but if I were to ever smoke one the way you meant, I would definitely start at the head end.

Reenie, as far as the pain is concerned, it is to the left of center, below the rib cage, starts as dull pain, but as the fluid problems or activity levels get worse, the pain increases to a fairly severe one. Eventually it can reach the point where it dominates me to the point where I cannot think about much else. It can keep me awake at night, but is never as bad in the morning as it was the night before.

I feel blessed in some ways because no doctor has ever denied the reality of the pain, but no one has really offered a solution. Occasionally I have pancreatic enzyme tests, but they only came back elevated once that I know of. Since I have had the pancreatic cancer, surgery and fistula, all the doctors seem eager to claim this pain as an important symptom, but personally, I lean to the heart explanation more than to the pancreas.

Rhoda

[Pam Alexson]

Doug..it does sound like fluid problems as you describe them.. one way to see is when you are feeling those increased feelings of fullness, pain or pressure from the increased fluid and you can visibly see them ..try lying down for a period of 1 1/2 - 2 hours and see if the sensation decreases and the actual visual signs of fluid leaves the area of question or decreases.. Remember I told you you can actually measure the areas also? That is a technique that CHF nurses teach their patients.
Everyone gets a little bloated after they eat BUT that should dissipate after a little bit. We are talking about fluid that comes on as the day advances and stays until you get into bed and is much less by morning ( or looks back to normal).
If one is that swollen of course it will impact on all the internal organs and cause some pressure/ stretching, discomfort and even shortness of breath from the diaphragm being displaced upward.

You are right DF creates similar symptoms of right and left ..there is SOME cross over of appearance/ symptoms. Though the general is more increases lower extremity fluid w/ right sided. The right sided failure will reveal itself in changes in EF and appearance of the heart function with regards to systolic functioning.

Remember and I asked this of the transplant speaker at the conference and he agreed. An HCM heart may not dilate as a traditional standard in advancing heart failure. A belief is that when an HCM person is diagnosed, their heart is thick...when the cavity begins to open up( it may do so a little but still be viewed as thick or even normal). It may be very difficult to know what was an actual "normal" diameter for the unique individual HCM heart due to the appearance and cavity obliteration at diagnosis. This is often discussed in the literature as "subtle" systolic ( right sided) dysfunction/ failure with preserved ejection fraction. I have been reading a LOT about this of course as it SEEMS to pertain to my case and some others.
Another speaker at the conference talked about symptoms of the patient as being a big indicator of how to treat the patient in diastolic heart failure. He talked about when heart failure is present and the patients quality of life is pretty hampered.. The clinician must "treat heart failure as heart failure" to give some quality of life back. He indicated that this is done with medication and by allowing that stiff left ventricle to fill as quickly as it can as opposed to prolonging the filling time as is traditional treatment for HCM . Makes sense when an individual is huffing and puffing about trying to LIVE a life.

My recent EF was actually 65% which is simply a reading and realize that that could also be 50 or 55% on another day, time and circumstance. However, symptoms of HF have been getting worse over the last year. Remember I just brought my weight down abruptly with increased diuretic? The shock was that I ( my heart) did not even flinch...so the fluid was there waiting to be taken.

I ( as planned with my cardiologist) am presently starting ACE inhibitor therapy with my 2 beta blockers , calcium channel blocker, diuretic, anticoagulation med and gout medication. It is early but I do feel changes already and THEY ARE NOT NEGATIVE changes .. COULD be placebo effect because I am such an eternal optimist, so I will refrain from over zealousness at this date.
If it is true effect I will let you know in a few weeks when all balances out. I am also going to have to increase it ..so that is going to take time.

Fingers crossed ..this empirical treatment for my HCM /failure may be of benefit to others like me.

Pam

[dannicki]

You know, over the past couple years I have been having a horrible time with leg and feet swelling. I was hospitalized a couple weeks ago and they told me that my heart doesn't pump efficiently so there is a back-up of fluid in my lower extremites. They put me on lasic but what is so odd is that no one has mentioned that their doctor had fears about giving them water pills. It was such a big thing for my doctors to give me water pills because they said my heart already doesn't fill with enough fluid and to give me water pills would reduce it even further and cause a whole host of new problems. So now they have me on 20mg a day and if I get lightheaded I'll have to go to every other day.

[Pam Alexson]

It is quite a diverse disease as you have read and just to add to that..I take 160 mgs of Lasix a day. One year ago I barely remembered to take 20 mg as needed as I was directed to do. Now the 80mgs 2x's a day and no falling flat on my face as I expected. I am supposed to increase to 120mgs in AM and 80 mgs in PM BUT am scared once again that it may be too much.
Here I am supposed to keep hydrated and am having to wring myself out..it is a very diverse disease indeed.

[Bucky]

HCM sucks!!!!!!

Power to the people!!!!!


bucky

[Mary O'Shannon]

To Pam and all who are struggling with the fluid imbalance issue... I'm sorry things have to be so complicated and difficult for some of us. I've been pretty lucky so far, but I know some of you have had such a rough way to go. That makes me sad. I just keep you in my prayers.

I've been having a problem with fluids, too, for the last three months or so. Before my knee surgery it was all in my ankles, aggravated by a lot of traveling. But since my surgery, I have my legs up a lot so my ankles are so much better. Unfortunately, I think it all went to my tummy! ARGH!

I pray for all of us, for strength and courage, wisdom and healing..... Mary

[mtlieb]

Hi Rhoda,

I know I'm late to the party but just to let you know I'm as frustrated as you sometimes when it comes to the water issue. At times it seems like just a few Lasix and a couple hours on my back gets the job done, and other times it can take up to a whole week to finally get it all off. It's just so variable it peeves me off.

Hope you are doing well at present.

Jim