I have Severe refractory edema from CHF, after MASSIVE MI. I need some input.?

Question

I have ejection fraction 50% - auto accident provoked massive MI with huge scarring in all walls. I have normal lipids, kidney, liver, blood chemistries. but I am in agony from swollen legs and swollen abdomen & liver. Edema did not respond at all to LASIX, torsemide. HCTZ. No diuretic effects.whatever.
I was advised to try Metalazone, a powerful diuretic of another class. I visited an MD today and he insisted , "Oh try the torsemide another 2 weeks, then I'll consider giving you asmall dose of Metalazone, I reminded him that I tried torsemide 2 weeks already, no results & I'm badly swelling with water. He insisted that it was early to try Matalazone, & it was too powerful &he worried for my safety.But he admitted that I was critically swollen with edema from CHF - yet denied me any Rx for this alternate diuretic. I'm in agony from pain in my body and can't bend my legs to step anymore. Someone please advise me. He smirked at me and said " don't go on the Internet so much"

SOME GUY- I never said you were responsible for my fate. Several MDs kindly replied to me on this site and suggested this diuretic to try, which might work when furosemide & torosemide fail. I only want to help myself. this Dr wants to drag it out although he admits I'm very critically swollen. I have a non-curable illness, it will persist to the death, no definite resolution possible except a new heart. My EF is not considered bad but I'm in danger from massive swelling and my pain & restricted movement, speech, & breathing. so you - SOMEGUY - try to have heart within you and know that it could be you someday. Meantime, I accept my fate in the Lord's hands. I will surrender with joy rather than live with a terminal illness. I will not die in a hospital, but at home with my prayers and devotions.

Answer 1

http://www.medhelp.org/forums/cardio/messages/35430.html

http://umed.med.utah.edu/ms2/renal/Word%20files/c)%20Disorders%20of%20Volume_Ed.htm

Answer 2

besides using the diuretics you will really have to restrict your fluid intake. This can also be a real problem because your system can actually be dehydrating and due to the fluids building up in your extremities. This will be a very hard balance to maintain. Also the MD that smirked at you and said not to go on the Internet should be smacked. He is a jerk. All though sitting in a chair is a real problem for people with CHF since the fluids will go to the lowest point and not be able to get back up. If you have a recliner to get your feet up it will help with the pain in that area. But remember that fluid will be going else where then. So take your diuretic and then get in your recliner.

Other than this bit of info I am of no more help sorry. But there is a great website for you to get info from I will list it below.

Answer 3

My daddy has had the same problem, dealing with the CHF, before hee was invited to this new program for people with this,i think it's called the heart center but any way their number is 352-620-8649. If this is a joke don't call bothering them. These are really a dedicated group of people that have assisted in keeping my Daddy out of the hospital. I do so wish you the best. But please do not suffer when you do not have too

Answer 4

I would advise that you listen to your Dr. If you're not happy with him then seek a second opinion. Frankly, you probably will just worry yourself to death if you keep looking for help on the internet. Certainly, we can give you advice and so forth, but we can't change your prescriptions or treatment. A friend of mine went through something similar although it was congenital and not from a trauma. He gradually declined and ultimately had to have a heart transplant. I'm sorry to say that with that low of an ejection fraction (his was at 12% though) that you may be headed in that direction. Good luck!

Well, EXCUSE the heck out of me. I was just trying to be polite and help.