Is this A) Alarming, or B) Just one of those things?

[scottvant]

Thanks guys, for all your valuable input.

Yet another question--I'm convinced I'm starting to retain water weight. For awhile I thought the spreading around my middle was just because I am nowhere NEAR as active now as I was up until about 9 months ago and that I was just getting fat... But lately I'm feeling swollen in my hands--worse in the morning, lessens as the day goes on, and is back the next morning... (In addition to the new girth around my waist, which seems to come and go a bit more erratically than if it were just fat...)

I haven't been diagnosed full-on CHF but I am being watched for LVH, enlarged LV, and myopathy. Calculated EF at last echo (few months ago) was ~40.

Is this, as my doctor would say, an "important" turn of events or just another one of those things that happens on the road to recovery? (i.e. can this be seen as a "worsening" of the situation or something I should have expected?)

Not that I'm asking you guys, "should I panic," I'm just wondering what the wealth of experience in this group has to say.

Scott

PS--I have placed a call to my doctor and am awaiting a call back...

 

[LoraW30]

Scott,

For me, a little water retention has been normal. I've had it off and on through the years. But, it is good that you have placed a call about it. From the way it sounds we have some similar problems. Fluid retention is something to really watch out for and right now I'm on 20mg Lasix twice a day with permission to take an extra dose if the swelling is really bad. It can cause problems if let untreated. Let us know what you find out. Could be you may just need a mild diuretic.

 

[bvdr]

I agree with Lora, Scott. It is something that needs to be investigated. It may well be fluid build-up. I have to watch my salt very carefully and have for many years. I take a diuretic daily and on rare occasion Lasix. I have never been diagnosed with CHF either. It's good that you are getting it checked. How are you doing as far as shortness of breath?

Betty(bvdr)

 

[Johnny Stephens]

Panic no, investigate yes

Panic no, investigate yes

Hiya Scott
I would be alarmed if this was a sudden change, but that doesn't sound like the case here.

Are you on a beta-blocker? Many have fluid retention (edema) as a common side effect. If it's a gradual change, it may be something they can handle by adding a diuretic (like they did me) or adjusting some other meds.

 

[Nancy]

Hi Scott-

When your doctor calls ask about a BNP test. It detects the presence of CHF.

Then your doctor can take from there, depending on the results.

 

[ALCapshaw2]

Hi Scott,

Moderate fluid retention is not "alarming" but should be monitored and addressed.

The standard test is to press your shin bone along the lower portion of your leg. If you see a depression that does not go away in a few seconds, you are retaining fluid.

I started having symptoms of SOB a few months after my AVR and found that a low dose of Lasix a few days per weak helped me feel a LOT better and more energetic.

I'm still trying to determine if my recent rise in INR and passing blood in my urine are connected to continuous Lasix doses combined with yardwork and LOTS of sweating. I may never know which is disconcerting. Bottom line, if your urine starts to turn dark, back off on the diuretics and drink more fluids! Sort out the SOB issue after making your kidneys happy.

I recommend keeping records of your meds and symptoms and sharing this information with your Cardiologist and / or PCP.

Keeping one's balance on the Medical Tightrope is a constant 'challenge'!

'AL'

 

[scottvant]

BNP test?

BNP test?

Nancy recommended: >>When your doctor calls ask about a BNP test.<<

Got your message too late, Nancy, he had already called and put me on 10mg/day Lasix with almost no questions asked, and in fact said something to the effect of, "that's cos the Coreg is doing its job." Or something. I asked was this a disturbing change of events and he said no, I could keep my regularly scheduled end-of-September appointment with him and we'd discuss everything there. Medicine is weird--those 20mg Lasix are *tiny* pills anyway and I'm supposed to chop them up and take *half*? They don't look like they'd do anything at all...

I have been having weird unexplained chest pains off and on for the last few weeks which everyone has finally decided was gastritis--h.pylori infection in my stomach--great. What next? LOL... So now I have Prevacid, Flagyl, Tetracycline and god knows what all else, in addition to my heart meds. Good news is that it was nothing cardiac, but jeez--I've asked it before and I'll ask it again--when is it your body is supposed to just start falling apart at every turn? Is it really 35?

Now I know what all my HIV+ friends feel like, "One pill twice a day, one pill 1/2 twice day, one pill 3x a day, one last pill 4x a day; two of those with food, two of those on empty stomach, blah blah blah...

It's a brave new world.

Scott, hanging in there tho.

 

[Nancy]

Well, when you see your doctor mention the BNP test to him, so he knows you know about it. It could be an option for the future.

Joe is on 80 mg lasix twice a day each and every day. Even though he's on that much, he can still retain fluid. He has major CHF. When it gets a little bad, he doubles the lasix, when it gets to the SOB stage, he goes on zaroxolyn. He is also on a lot of potassium because the lasix depletes the body of that. He doesn't do any of these changes to the dosage w/o running it by his card. He's been in kidney failure and that could always rear its ugly head again.

It's like dancing on the edge of a sword.

He's on 14 medications per day, all at different times, and some twice a day. It can be daunting.

Whatever it takes. He's still here and vertical.

 

[ALCapshaw2]

Nancy,

Please tell us the signs of Kidney Failure
and how to manage it.

Also, have you ever seen INR be affected
by fluid levels (either high or low)?

I'm still trying to understand why my INR
shot up to 4.7 or greater when I have
been stable for the past 12 months.

My exercise level has increased and I'm
sweating like crazy in the summer heat
but I also developed swollen feet from
standing at a workbench for a couple of
days. I'm still preplexed...and I sure don't
want to go through this again!

BTW, my INR is back in range and my urine
is yellow (but still a little darker than optimal).
I guess that would have been considered to
be 'in control' in the early days !


'AL'

 

[Nancy]

HI Al-

What I'm going to say about kidney failure will all be related to what Joe went through. So it's not anything official. Once you get into kidney failure, it really has to be managed by the doctors. This is going to be more than you ever wanted to know about kidneys, CHF and other things. If anyone gets nervous reading about medical things, this is probably something you would want to skip.

Joe has chronic and severe CHF, plus he's anemic, plus he also has pulmonary hypertension and oh well, I could probably write a book, but you get the drift. His conditions are bad.

He was being treated very aggressively for CHF with lots of diuretics and his kidneys got too "dry". This happened on several occasions. Then they had to back off on his diuretics to let the kidneys normalize. This caused severe CHF, and the anemia didn't help at all, it just made everything worse. His pulmonary hypertension, at the time was not being treated and that contributed to this mess as well. Eventually, everything flared up at once, and he became a very sick man within the period of a couple of weeks. He had back pains, from the kidney failure, and he went into Class IV CHF, severe anemia, severe pulmonary hypertension, liver and spleen distension and he crashed, heading for a coma and probably worse. I was able to get an appointment with a cardiologist who specializes in CHF and pulmonary hypertension, and he was admitted to the hospital where he stayed for a month.

They did back off some on the diuretics at first to give his kidneys a rest. He was put on a renal diet. His anemia was addressed with transfusions and then he was eventually started on Procrit injection. As his fluid started to build back up again, the diuretics were introduced more and more. But he had voluminous labwork during this period, and it became a very technical balance of trying to keep his CHF in line, and keep his kidneys happy. As his anemia became better, and things started to improve, the kidneys did also. Then there was a period of time when they were introducing several drugs in a trial fashion to try to help the Pulmonary Hypertension. Some of them caused enormous fluid buildup, and he just managed to escape getting a dopamine central line put in, by about a hair. This is something that needs a catheter in place because it causes a fire hose deal. Instead they decided to try a huge dose of Lasix and that did the trick. A new medication was given to him for the pulmonary hypertension and that helped almost right from the beginning. Everything started to normalize and all his labs started to improve. His diet was changed from a renal diet (which is pretty terrible) to a low salt diet.

Now that he is home, I have continued the low salt diet and I am very strict about it. I bake his bread and everything else w/o salt, he gets very little sodium. It has helped tremendously by allowing his Lasix dose to be minimal, and to keep his kidneys relatively happy. His CHF is under good control, with an occasional flare-up, but everything seems to be on a pretty even keel.

His Lasix dose is probably larger than most at 80 mg twice a day, but that's is what works for him most of the time. Zaroxolyn when he gets too fluidy. But it is all discussed with the card first. Not a do it yourself thing, because of the kidney situation.

We have found that, just like Coumadin, there is no way to predict when CHF will flare up. Because he is on such a low sodium diet, it isn't related to that, so probably just something peculiar to Joe.

So, anyway, that's what Joe went through. That's why I talk a lot about a low sodium diet if you have CHF. It really helps your kidneys because you won't need as much diuretic.

When you have fluid in your feet and legs, it's not just there only, it's probably in a lot of other areas as well.

And by the way, when people have major kidney problems, they have to go on the renal diet (icky), and their fluid is also restricted, and there are restrictions on a lot of other normal things. It's bad. So if you can keep your kidneys a little happier by staying low sodium, everything will work that much better.

A wet kidney is a happy kidney

 

[Nancy]

You know what, Al-

In all my long winded post, I forgot to address the INR and fluid retention.

Joe has had problems with his INR when he retains too much fluid. He often gets it in the form of ascites (in the abdominal area), and it backs up into his liver. This interferes with the metabolism of Coumadin in some way.

So, yes, we have seen that.

 

[ALCapshaw2]

Nancy,

Just to be sure I understand your comments correctly,
are you saying that when Joe retains excess fluid,
his INR goes UP?

'AL'

 

[Nancy]

That's what happened last time. Then when he went on Zaroxolyn and the fluid situation cleared up, his INR normalized.