If you actually live with CHF & its edema, or you are MD, please reply.?

Question

I had an average heart at 55yrs. then car struck me with super force, I bled internally & shock to my body caused MASSIVE MI with large areas of scarring in EVERY WALL of my heart. My ejection fraction is 50%. I take lisinopril for HBP. I have normal creatinine, albumin, liver/kidney panels, lipids,TSH, for months after accident, I had ortho surgery to repair tibial fx. then in Nov.'06 , I noticed rather rapid edema of ankles,calves,thighs, abdomen, to the point of severe painful pressure & stiffness. I can't flex my limbs to climb stairs, wear a pants, get into car. One leg constantly drips out steams of cold, clear water from within my tissues. Liver is engorged with edema, I can't close pants anymore. MDs say I have both right & left sided ventricular dysfunction. , global hypokinesis. MY jugular veins throb all day. I gasp upon any exertion. Months of diuretics failed to reduce edema. When diuretics fail, what is outcome?

Schumac- I thank you for your reply. I just read it now, Tues,AM. Firstly, the radiologist & the tech together measured the ejection fraction as 50% & that is that.But th MD found severe global hypokinesis & severely reduced left ventricular systolic function. I have also the symptoms of right ventricular dysfunction. I tried Zaroxylyn & torsemide & HCTZ, I barely noticed any diuresis at all. Can this perhaps mean that there is not much water left to filter out of blood.? MY gut absorbs all meds well, supremely well, including lisinopril, hydralazine, etc.I have perfect blood sugar. An I don't know why I have good values for liver & kidney but I do. I don't wish to be in hospital, they can keep me there indefinitely without any resolution. For me - diuretics have failed. I absorb meds unusually well. I know my problem is my damaged heart muscle, so severe as to be incompetent for the workload of my body. Drs refused to give nitrates, hydralazine instead. I seek ultrafiltration

Shumacher: well, thanks again for your reply. I only meant that historically, I absorb drugs well, based on experience, whether aspirin or cephradine, etc. Drs mentioned about the Zaroxylyn, followed by a loop diuretic, they mentioned its dangers like you did. But I'm in shock that all the diuretics I tried gave me no perceptible increase in urination.
I am not able to speak about naturemic peptide, I read about it but I am not qualified to judge.
Schumacher: Remember that for me it started with a MASSIVE MI, in which EVERY wall of th heart suffered LARGE infarction & scarring. Even cardiologists were taken aback by severity of damage from MI. (I swear)
You & i speak here generically & conversationally only. But my MDs are tight-lipped on clear, definite answers, they are vague & nebulous.
Now if as you said, something else is at work besides the cardiac damage to give me such symptoms, I just don't know what & neither do the MDs. I want to receive ULTRAFILTRATION. Thanks

Answer 1

Hi, I had most of those,edema in feet ,ankles,legs .and
Throbbing of my heartbeat in my right side of my neck.(haven't found the answer for that for sure yet)
The swelling was due to RA(Rheumatoid arthritis) first was put on a steroid(predisone) to bring the swelling down and stronger diuretics and also a antibiotics and non inflammatory
and i am able to wear shoes again and I'm not sweating or pouring out water anymore.Have Dr check all autoimmune checkers in your blood work.
Always take naprosyn and anibiotic all the time now

steroids(predisone) strong diuritics,anti-ifam,ninosyn sp*(antibiotic) THis from from a RA DR ,A leader in his field.
Hope this helps you
Good luck
I lived like that for over a year...

Answer 2

Something doesn't add up with global hypokinesis and an ejection fraction of 50%. Additionally if your liver is edemetous then your liver function tests should be abnormal as would I expect your albumin to be abnormal.

This all sounds miserable. Its been my experience that when things are this bad that there is no single action that will make everything better - but I am certain things can be improved.

First you fix what you can fix.
If your blood sugars are elevated then get them under control.
If your blood pressure is higher than 120, I would advocate reducing it in these circumstances.
If your pulmonary pressures are elevated then you should be evaluated and treated for sleep apnea - and perhaps treated with a calcium channel blocker.
If you heart is running rapidly (greater than 70) then it should be slowed with a beta blocker.
If you have COPD then that treatment should be optimized.
If you have low protien and/or albumin then that should be addressed with diet.
If you are experiencing active angina (ischemia) then reprofusion either through revascularization or EECP should be attempted.

I think adding a long acting nitrate would be worth while. It enahances perfusion of your heart vessels (perhaps increasing systolic function) as well as kidney and liver function.

Finally regarding your fluid balance:
Sometimes absorption of a particular agent via GI is not good. Using IV medications can greatly enhance their effectiveness. Also you may benefit from Naturemic peptide as a diuretic.
Sometimes pre-treating the kidney with Zaroxyln 30 minutes prior to administering the Loop diuretic (Lasix) will greatly enhance their effectiveness. You will need to be careful as this is a big stick that can harm you kidneys if you are not careful. Lastly while you are doing all of this diuresis, you need to be on strict fluid restriction 1.5 liters a day for your ENTIRE oral intake (food and free fluid included).

This is a very complex set of circumstances that will require some close monitoring - perhaps even a hospitalization. Consulting a specialist - a cardiologist who will take the time to work with you is important. I hope this helps. Good luck.

I just read your addendum - 8:30pm EST.

A couple points to your response.

1. You could not possibly know if you are absorbing medications well or not. The proof is that they are or are not working. You, therefore may substantially benefit from IV Lasix. Pretreating with Zaroxyln prior to Lasix will still be useful. Naturemic peptide is a second alternative but is usually reserved for those with reduced systolic function and poor renal function. These medications are often provided only in a hospital setting. How do you expect your physicians to provide you the care you need by limiting the tools they have e.g. no hospitals, no IV medications to work with?

2. I know what you were told "But the MD found severe global hypokinesis & severely reduced left ventricular systolic function." That by definition means that you have an ejection fraction of less than 35% - something is incompatible with the information your doctor and the radiologist told you.

3. Long acting nitrates are not a substitute for hydralazine, in fact there are studies that those two medications work very well together for CHF especially in patients of african descent - BiDil is a trade name. I prefer using higher doses of hydralazine in porportion to nitrate compared to the combination medication (BiDil), however.

4. I, as a casual observer answering questions on a public forum, can not possibly take the place of your physicians. If you feel like you have exhausted the expertise of your physician and he/she is resistant to using certain medications, perhaps it is time to consider your alternative options - perhaps even consider a specialty center like the Mayo Clinic.

5. I have patients who have dismal heart function (EF of 5%) and are no where nearly as miserable as you describe. There is more to this picture. Even if you have right and left sided failure, I do not think the answer lies entirely with your cardiac function - especially with an ejection fraction of 50%.

6. Ultrafiltration is of course an option. It is usually reserved for patients with poor kidney function - which you apparently don't have. I still think that a trial of IV diuretics should be used before considering ultrafiltration - but it remains an option.