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Bob in Texas
09-12-2009, 09:08 AM
Been on the above meds for three months. My wife says I look like I am retaining water (abdomen only) and I have gained at least 20 pounds in the last 6 weeks. Nothing like a supportive spouse. What drug is most likely causing the water? The Spiro med is part of a clinical study and may be a placebo. I use to be muscular and defined but have noticed I am losing alot of muscle. This is not gonna work hopefully the myectomy on Oct 26 will do the trick. After surgery what determines if you stay on meds. I know the doctor :). Is it possible to not need them any longer. As always thanks.


Bob

LindaSo
09-12-2009, 09:33 AM
Bob,
I doubt your fluid issues are related to your medications at all, it due to your hearts stiffness and pumping action. I cannot speak to Nadolol, but Verapamil does not cause water retention and Spironalacatone is a diuretic, although the study is looking at possibly decreasing fibrosis.

I do hope you get some relief from your myectomy. In my case, my post op medications were decreased immediately post op, but I was back on all my former large doses within 6 months. Other folks have been able to have doses decreased. As always, our hearts have their individual qualities. What works for me, may not work for John. What works for John, may not work for Sue. Your LV will still be stiff. The myectomy has no effect on that. But symptoms related to the obstruction hopefully will be diminished, if not gone. Unfortunately, no one can tell you what symptoms and to what degree those symptoms are related to the obstruction. You won't know until after the surgery.

Wishing you the best.
L

Eileen2345
09-12-2009, 02:12 PM
Hi Bob,

After my surgery, I still took the same amount of Verapamil as I did before my myectomy. The only difference is that they changed it to the extended release.

I retain fluid in my abdomen too, and also around my lungs (I think so because of my breathing).
The cardiologist always looks at my ankles and says I am not retaining that much fluid, but I try to tell him I retain fluid in my abdomen, he just ignores it.

Some days my pants are so tight I can barely button them, other days those same pants are loose on me. I will ask my doctor for a diuretic when I see him in 2 weeks.

I will ask him about Spironolactone.
Maybe you have the placebo?

Best Always,
Eve

Shelly
09-13-2009, 03:18 PM
I just went on the spironolactone 3 or 4 months ago, and my surgery will be 2 years ago this Nov.

The surgery is to improve your heart and loose your gradient. We all get a quick study on the heart at some time or another after we get our diagnosis. This isn't the life we have picked, but we are learning to adjust. Keep strong and I hope have a great support system.

Equestriansrock
09-13-2009, 06:01 PM
From what I have been told, I believe the myectomy only serves to help the blood flow better through the chamber, and help to eliminate any obstruction. However, it does not fix any of the electrical problems associated with HCM. Medications will still be needed to help control the hearts rhythm. This is why we are still dependent on ICD's even with the reduction. The gradient isn't our biggest enemy, it's the arrhythmia's, v-fib's and other electrically rooted issues that kill us.

gfox42
09-13-2009, 06:20 PM
Right. The surgery can relieve obstruction in the heart, but drugs are the only treatment for the stiffness of the ventricle. I take exactly the same dose of beta blocker as I did before my myectomy.

Gordon

Pam Alexson
09-14-2009, 09:49 AM
Post surgery for a very short interval I took much smaller doses of my BB( atenolol) and diuretic( lasix)..

I think it was weeks to months and I was working my way back up to high levels..

Within 3 months of the surgery I added CCB ( diltiazem)

Since the surgery 5 almost 6 years ago, I have added others....

Added sotalol and coumadin for a-fib at year 3 post surgery@ same time reduced the BB.

At year 4 added Lisinopril (ace inhibitor).
At year 5 doubled Ace inhibitor( lisinopril) and added potassium replacement( Klor-Con)