If any of you actually HAVE CHF & severe edema - then please inform me?

Question

I'm suffering in great pain from severe edema which made my legs rigid and unable to bend at all. My liver is swollen with ascites. I have a bit of fluid in base of lungs. since oral diuretics have not diminished the edema yet - I'm worsening daily. I want to go for a relatively recent powerful treatment called ultrafiltration where they hook someone up to 2 catheters, left & right, & using a special filtration machine (not dialysis) they can filter the blood andremove up to 5 liters of water during a 8-hour stretch to relieve the systemic edema. But here in NY city - I called many doctors, cardiology depts., hospitals, and they scowled and gave me no help to track down how to receive this treatment & where it is done. Most knew what it was but refused to guide me to how to get it. Please can anyone help me to locate a facility in NYCity which accepts CHF patients for this dramatic, powerful, rapid method of resolving their edema. All whom I spoke to scorned me. Please help me.

Answer 1

Be wary with ultrafiltration--it is dramatic, but it's not a permanent solution. It is approved for therapy, and we do use it frequently for patients with acute renal failure or severely decompensated CHF, but usually only when high dose IV diuretics/natrecor/inotropes (medicines usually only administered in a hospital CCU) have failed. There are centers that will use ultrafiltration as a 1st line therapy for certain patients , but the trials to determine whether it SHOULD be used this way are ongoing. The most recent trial I read about this was UNLOAD. There's a cardiologist by the name of Restaino at Columbia/Presbyterian who was one of the authors--he could probably give you the best advice in the city on whether you're a candidate. Best of luck.

Answer 2

I don't know of any hospitals in this country that offer that particular treatment. Last I heard of it, it was being trialed in Europe. Most cardiologists will not do it, because while the fluid is indeed drawn off as you say, it simply causes the body to produce that much more and the edema comes back two or three times worse than it was to begin with. You have a chronic condition, and it isn't going to get better. With medications and proper dietary controls it is possible to control it. Unfortunately, once CHF has taken hold, it will progress over time. The best medicine can do is slow the process. I empathize with your situation, my CHF is controlled, but both my parents died from it.

Answer 3

If you were not guided by reputable hospitals, I suggest the filtration may not be approved by the FDA and in fact, may not help CHF.

I have a website where many folks have CHF and could help you...the URL is:

http://www.heart-help.net

And here is a link to an article you may want to read:

http://cardiology.jwatch.org/cgi/content/full/2006/119/1

Please get that fluid taken care of.
Lee