I ask those who actually have CHF & severe edema to reply to me.?

Question

I am afflicted since Nov.'06 with CHF & severe edema. Thiazides & loop diuretics have had NO diuretic effect WHATSOEVER. I researched & now understand that CHF induces changes in kidney function, an increase in ADH (anti-diuretic hormone) & the kidney starts to conserve water & sodium. As soon as my body swelled all over w/edema, I NOTICED my urine output became scanty & concentrated. Also, a defective heart muscle leads to inadequate blood perfusion to the kidneys, in the first place.
I am enduring much pain in my limbs from edema pressure inside. IN my right leg, a scab from surgery dissolved, and cold water(plasma) streams down my leg CONSTANTLY. i wrap with incontinence pads to catch the flow. Is this anasarca? I cannot stop this flow.
those of you who succeeded with diuretics or whatever else, please answer me, how long till the water within your tissues crossed back into your capillaries & veins? I've been told it might never drain off, or that it is unpredictable.

Cardiologists told me various answers that it might drain off, but since my defective heart creates more edema daily, the water gets replaced & it may be difficult to re-absorb the spilled water completely & overtake the edema for good. they said I might never be totally rid of the water in my tissues & the pitting edema. I'm scared & in much pain. the cardiologist listened to my heart & lungs & detected much fluid around the heart & within the lungs. I am badly fluid overloaded. I believe the volume of water spilling down my leg is over 1/2 gallon daily. The ortho surgeon said he never saw this in his entire career & said he could not stitch it shut as long as the water flowed from it. The skin would not fuse & heal.
My legs are rigid as wood & cannot flex at the knee. I take less than l liter fluid daily & <500 mg sodium daily.
I know the stem cell therapy would have regenerated my heart tissues-if it were available. I can afford outpatient ultrafiltration, monthly if needed.

MEG91084- thanks for your input. My kidney function tests are all normal. And Lasix & Thiazides truly have had zero effect. I am trying now to get outpatient ULTRAFILTRATION-

this is not dialysis, but a machine which removes water itself from the bloodstream. Results said to be great. But I worry - how long it takes for the edema water already sitting in the tissues to be re-absorbed back into the bloodstream where it came from??? this is the big unknown. since my defective heart pump will produce more new edema daily, will I ever turn the tide & win this battle? I saw several specialists. They said I will be afflicted for life with this illness, unless I get a new heart. they speak of "coping" strategies, not of cures or resolutions.

Anyway, believe it or not , the diuretics do not work on everyone, all the time. Caffeine seems to produce fair diuresis for me, yet lasix doesn't.
If you know anything about the re-absorption of the edema water back into the veins & capillaries, please share with me. Thanks so much.

Answer 1

I do not have CHF but am a nurse on a kidney floor at Yale and your condition concerns me. I assume you are taking Lasix as it is the standard diuretic for CHF related kidney malfunction. What I saw as a concern was the fact that you said that once you came down with anasarca (generalized edema) your urine output was scanty.

Urination is controlled solely by the kidneys and if they are not working, your urine output will be very little or you will have none at all. That said, the way lasix works is that it blocks the absorbtion of salt and fluid in the kidneys thereby causing a PROFOUND increase in urine output. That said, it should be a matter of days, not weeks for lasix to work.

What you need to do is go for a second opinion. It sounds like your kidneys aren't working properly, and you can have some possible kidney failure. Please do not be alarmed, kidney failure is reversible if caught in time, and right now I you may need to be put on dialysis to rid all of this fluid.

That said, if your edema is as bad as you say it is and the diuretics are not working--PLEASE PLEASE PLEASE get a second opinion and ask if dialysis is an option to rid all this fluid from your body. Dialysis can be done on an outpatient basis and the results are phenomenol.

Hope this helped.

Answer 2

Also, too, I'm not a pt, but have taken care of many with problems you have. I know of some centers that do outpatient therapy with drugs that reduce systemic vascular resistance therby increasing cardiac output, and increasing heart function. And for the life of me, I can't remember the name of the drug. It replaced the drug Inocor. It's given IV. Have you tried staying in be with your legs elevated-I mean for as much of the day as you can? Has your doc recommended wrapping your legs with ACE wraps? Is your protein OK.? A low protein can cause fluid leaks also. These are all considerations I've seen in people I've seen in ICU's/

Answer 3

I think the procedure that you are speaking of is called dyresis this is where you have a short stay in the hospital to where a physician is watching your care remmoves excess water from your body, If you legs are to the point where they are sceeping you really need to seek help from a physician. When sitting place your feet up as high as you can to wear this will help to decrease the swelling. Best of luck to you.