Fluid build-up - ankle swelling

Themister has battled edema for over two years and hates it. You know the drill...diuretics, TEDS socks, and reduction of sodium.

Some weeks nothing seems to work well enough. He seems to carry a lot of fluid all over...hands, face, stomach....puffy looking on bad days (weeks...or months). He gained 20 lbs rapidly when the edema began and goes up and down another 10 lbs. We can only reduce so much and I understand your frustration.

Wardrobe has been a continual problem around here. Themister wears flip flops. He bought bigger tie shoes he can stand to wear for a few hours, when needed. Purchased elastic waist pants (several sizes) and bigger shirts.

Your lungs are a concern to me. Did you call your good NY Hep and run it by him? Big Hugs

Thanks for sharing David and themiz.

I checked my meld a few days ago. Things are status quo. Th only thing right now that is inching up is my bill. I am up to 5.something. My bill was around 2 until the last year (two years?) or so. It has crept up since then.

Other tests are worse than a year ago, but none as dramatically as the bill.

This level of swelling while on diuretics and eating low salt is disturbing. I asked the transplant coordinator what happens next, and he did not really answer. I asked him to ask my MD to give me a call, but I got no call. I was not happy that no one followed up regarding the MD's call. Oh, then the TC sent me an email to lower my prograf. Um....no. I don't take prograf. So, I was not a happy girl. This is how people can die - by a simple mistake.

I do not recall ever being told to wear TEDs. I assume they are tight socks of some sort?

I love the crocs idea. My feet are uncomfortable, even when not in a shoe.

Now, enough of that. It is a magnificent day here - it should be gorgeous by you, David.

I am dyeing the roots of my hair. No more gray for me! So I am hoping the toxic chemicals only scalp go
straight to my liver. We can always hope. The fumes alone are enough to knock you out. Ech.

Have a wonderful weekend, all.

Love,
Schimbare

Schimbare,

Pre TP is tough.

Mike had some of these symptoms pre TP also.

He had full on acute kidney failure twice! Talked about dialysis, but it never got that bad, they had him lie about the hospital for a week and took bloods every few hours and juggled his chemicals around til they were back in balance, kidneys working again, and sent him home TO WAIT SOME MORE.

At one point they changed the tune, like with David, and said he had HYPONATREMIA.

Check it out HERE. https://en.wikipedia.org/wiki/Hyponatremia

When the low sodium diet backfires and kidneys are not working right, you can have too little salt and yor body holds on to whatever fluid it has and thus the edema.

They put him on limited fluids for a few days (in hospital) on an IV drip regulated carefully. When it settled down, they again were having him drink a lot.

Mike's TP coordinator set him up a chart for the fluids in his legs (up to his groin)...his Lasix dosage varied depending on his daily weight...which would vary 5 or 10 pounds over the days (or more). That worked pretty well. With out day after day of mega doses.

You take a potassium spraining diuretic like spirondolactone also, right? YOu can't just have Lasix or it can mess you up when you are ESLD.

What is your sodium? It should be over 135, but definitely 125 or better. If lower, call the coordinator again. She may be looking at too few numbers.

The weather is at least cooler in NY....we are in the topics here just now.

Let us know how you are doing.

Hugs,

Mama Lama