okay

[creewoman]

I am okay to all who are worried ...sorry.It's just hard to sit with this strange and loathsome body I have now.Too much water w eight and it's exhausting .Can't breathe, sitor bend I feel like I could pop!Nothing helps,so salt...very carefully chosen foods don't help.Dieurietics barely work.Nothing fits anymore!I look terrible and feel even worse.But I keep going the best I can and someday no one will have to go through this I pray.
My Apologies.    Love,Snow

[rivll]

I was hoping Snow's sodium levels were under control now and that perhaps she could be prescribed a more effective diuretic.

I imagine the Transplant Center will address the problem in August. Hang in there, Snow, you are in my thoughts and prayers.

[Advocate1955]

Cree is on diuretics, but because of her recent problem with dangerously low sodium and high potassium, she has a restriction on fluid intake and I imagine a limit on diuretic dosage in order to control her sodium levels and to keep them from dropping too low. Correct me if I'm wrong Cree.
Cree, how is your portal hypertension?
Advocate1955

[rivll]

Please post what is happening (cut and paste?) on the cirrhosis forum too. Maybe someone can advise you from there.
Love,
Crow

[rivll]

Hi Snow,
I hope you can get a ride or shuttle to Seattle. Cannot see how you will be able to take a bus in.
Have you asked your local doc for diuretics? There must be some way to control this edema.
You are in my prayers, love. Hang in there.

[creewoman]

The last of the testing for transplant acceptance is August 19.I am so exhausted with this weight and it is putting pressure on bteathingI wonder if I can keep going until then.I am laying down most of the day,my joints all hurt from weight200 lbs of it!To think in April I weighed 165.
Love you all,I go to sleep now and to have some relief .The hot weather we have is probably not helping .Take good care of yourselves and thank you as always for your true gift of friendship.

[Dee1956]

I am so sorry, I wish I had some words of wisdom to share with you.
I hope your doctors can figure something out.
My thoughts and prayers are with you
Dee

[Advocate1955]

I probably don't fully understand everything about edema, but I think the fluid retention is due to the liver not being able to work well enough to help move the fluids.  The body retains the fluids and gravity prevails sometimes...I know that for people with severe edema in the legs, the build up can be so severe that it makes the skin feel so stretched and tight, as if it's going to burst.  In fact, I have read that often fluid leaks through the skin when the pressure is that great, causing oozing and open wounds that are prone to infection.
Cree, I hope your doctors can help with this painful symptom.  I know you are regulating your salt intake properly, drinking the proper amount of water, and taking a diuretic.  I know you are walking as well as you can to help keep the circulation flowing, and I know you're elevating and resting as you can to try to reduce the swellling and fluid build up.  I don't know what else can be done.  
I know that you will keep on doing the best you can and managing as well as you can.  All of these painful and difficult symptoms will improve or disappear when you get your wonderful new liver.
When is your next trip?
Advocate1955

[orphanedhawk]

Yes, it's hard to have that fluid build up and avoiding salt of any kind only works for so long. There are diuretics that can help too I believe.

Edema didn't affect me until close to my transplant and my fluid problems were all related to ascites.

I'm over 4 years post transplant and people don't believe I could ever have been sick. My recent labs were outstanding.
I did it and you can too. Hang in there !

[rivll]

"So why the water?"  
Simply put:
Hormonal Change
    One cause of edema in cirrhosis patients is the change in the liver's ability to regulate hormones. An abnormality in the liver's functions causes a change in the normal secretion of hormones and fluid regulation, leading to an accumulation of fluids in the body.

Portal Vein Pressure
Cirrhosis causes increased pressure in the portal vein, which is the large vein that carries blood to the liver from the intestines, pancreas, and spleen. This pressure and resulting fluid retention causes the painful swelling in the legs and feet.

http://www.ehow.com/facts_5936444_edema-end-stage-liver-disease.html

Dear Snow, took a little break from my break to respond. I too had edema though not nearly as severe as yours.
If you can get the kind of support you need at the transplant center, they should be able to ease your suffering a bit until you can get a transplant.
Hang in there love, I am praying for you.
Crow

[creewoman]

I go to the PCP and between him and the Gasto they need to try something.It has become difficult to motor.Two recent Creatine tests and an Ultrasound and I have a beautiful set of Kidneys he says!So why the water?It's not Ascites!It is Edema i!Go Away Water!

[mzkity]

Hey it's good to hear from you!! So sorry your not able to get rid of that water.
I can imagine that's just miserable. Please keep us posted if you can. But most of all take care of yourself:):):).     Kitty

[BoceprevirGal]

  Ah, Snow, that must be so hard to deal with.  I am glad you came here, and got educated, so it didn't come as a complete surprise to you~
  Anynews on Liver Transplant dates, I will be praying and praying for you. You are being very brave xoxo Katy