I have severe refractory edema from CHF - I value hearing your insights?

Question

I got CHF after MASSIVE MI post car crash. Today, my Ejection fraction is 50% & holding steady. My kidney functions, creatinine clearance, albumin, liver panel & lipids are fine. 9 months after car crash, I thought myself stable. slowly, urination dwindled & fluids swelled up throughout lower trunk & liver area. I am nauseous, can barely drink a bit of liquid. I can't sleep lying down, breathing worsens, I sleep standing up,(U figure) I gasp upon exertion, mild activity, I have legs rigid and swollen like pressurized balloon. AM in agony from pain. Drs gave me torsemide diuretic. Totally failed to expel fluids. (btw I take lisinopril & hydralazine for HTN) Tell me, someone, anyone, when diuretics fail, & fluid swells the body, what are possible treatments? I won't enter hospital;- I'm terrified,uninsured & I've been told that diuretics are their only reliance also. Any uncommon meds U know of for outpatients? If I am hopeless, how will my death come about?? PRAY FOR ME, PLEASE!

To DREW - Your thinking is what frightens me. that's why I never give my real # or address at MD's office. I have legal right not to be abducted by force into any hospital. My lawyer told me I have the right to die at home and refuse to go with the EMTs. Your thinking is FASCIST and dangerous.;

to SRS629 - thanks for your kind reply. Sadly, the torsemide never produced a drop of urine. HCTZ had faint activity only. I speculate that my damaged heart pump does not perfuse the kidneys with enough blood to function, regardless of drugs used. I consume less than 500 mg. sodium daily. i do severe fluid restriction. And i will try for Rx for drug you mentioned & hope it might help. I researched that 25 mg.spironolactone in those who take ACE-inhibitors has a synergism.for severe edema. I hope to try that, if MDs agree. Specialists told me the in hospitals they rely on same drugs as outside. I prefer natural death at home and will refuse forcible entry to med facilities. CHF is insurable and has no definite resolution, is a lifelong struggle to the end - just like AIDS. Please Doctor, your comments?? Thanks and God bless you.

MEEP_MEEP - does every hospital have ultrafiltration equipment and staff trained for it? Or is it some rarely available modality? You know, I am in medical debt already from th eauto which struck me. I owe 100K in bills. Hospitals might treat me, but will sue me in court to recover daily charges , avg.=5000/day. They can reeze my Bank assets and make me homeless. Yes , it matters to me to not be sued by hospitals. It's happened. And I',m alone with no one to see me in the hospital. That's when they abuse people when no relatives come to investigate.pt. treatment.

Answer 1

To be honest, ir oral torsemide isn't cutting it any more then you're probably stuck needing an IV diuretic. If you can still afford to see your doctor (even if you can't afford to be hospitalized), you might want to ask to add zaroxylyn (a different type of oral diuretic) to take before the torsemide--it can help to potentiate it. Strict blood pressure control with the hydralazine and lisinopril will also in the long run help you to mobilize fluids. It doesn't sound like salt or fluid restriction will help much at this point.

Just saw your update--if you're not getting any urine output from torsemide, you're absolutely right, you're not perfusing your kidneys well enough right now. Yes, if I were admitting you to the hospital, I'd use IV toresemide, but it gets absorbed about 2-3x as well as oral torsemide, as when you're in florid CHF your gut become swollen and can't absorb meds. At this point aldactone, while an excellent med, won't give you the diuresis you need. I've seen a lot of patients turn around with a few days of IV torsemide. That being said, if your kidneys aren't working very well, you could get IV meds that aren't available to outpatients, namely natrecor and dobutamine, which would help take the fluid off and improve the pumping power of your heart. This isn't a hopeless situation, the meds can make you feel a heckuva lot better--it's not just diuretics. You should take a trip to the local ER ASAP.

Answer 2

You have a lot of good answers already listed, and it appears to be that your still in a fluid crisis situation. CHF IS TREATED FOR THOSE THAT ARE UNINSURED. With CHF, the reason that you go to a hospital is that your body can't get back to a workable fluid status for your heart to take it alone. The longer you may wait, weakens the heart further and reduces your chances of bouncing back to a workable level of fluid. Going to the hospital now, can help you to get back to being able to work more productively, and just plain enjoy everyday activities more. It appears that you have diuretic-resistant CHF, which CAN BE TREATED, but these treatments can only be done in a hospital. Ultrafiltration, listed earlier in the answers, actually pulls the water from the blood and has been shown to quickly pull off 1-5liters of fluid off a day (2-12lbs of weight), depending on how your blood pressure tolerates this.
Other treatments exist, yet this is one that I know works for 9 out of 10 people (in my experience). Look up an article (google or some other search engine) from Dr. William Abraham on "diuretic resistance."
You can get back to a workable level of CHF, and then you will be able to get the most out of life again. CHF is not curable, but neither does it need to cause so much pain, and constant discomfort.
Yes, I will pray for you.

Answer 3

Sounds to me like you have some liver disfunction of some sort, being swollen in that area would indicate that. Also, being swollen in your legs is a flair up of your CHF. Now, Im not sure of your reasoning to not go to the hospital. If you are terrified of the hospital, I think you need to decide what is more important to you. R u terrified more to die or go to the hospital? Diuretics are not the only options, but they are a big part of it.
Your death will come about when your lungs are so full of fluids that you cant breath at all anymore, and i would imagine its not a nice way to die. At least at the hospital, you could get some pain medicine. I wish you luck and will pray for you.

Answer 4

Your doctor might try different diuretics, most CHF patients wind up on Lasix which seems to work well for them. You really need to see a specialized doctor (cardiologist) for specific treatment; a general doctor can try his best but he doesn't have the specific knowledge for a case like yours. You really need to get treatment for this, even if it means being admitted to the hospital, because things can rapidly go downhill. Don't worry about the insurance, nearly all hospitals will treat you no matter your ability to pay. A lot of CHF patients need to go to the hospital to get their edema under control - it's quite common. In the hospital, they can give you treatment that they can't give you as an out patient.
You aren't hopeless, you and your doctor just need to find the treatment that works best for you.
Good wishes...

Answer 5

Lasix but it only last six hours hint to the name.

Death from CHF is axphision yes the person will drown in the own fluids.

Since you are noncomplying once you go unconscious and can no longer say no there is a duty to act and if some one calls 911 you will end up at the Hosp.

I wish the best for you.

Answer 6

You really can't mess around with CHF. In my opinion you need to be admited to the hospital and be given lasix or ultra filtration.

the only home thing I can think of since you refuse to go to the hospital is to avoid sodium all together and put yourself on a fluid restriction.