Surgery update

I was discharged to home late this afternoon. Liver is fine, hernia was repaired, but I've blown up like a balloon...VERY swollen, especially tummy, legs, and feet which are all painful. I can barely sit. But nothing they tried in the hosp. was working and I'll do better at home. My Prograf is down to 1/2 mg a day. They had me on Lasix 20 mg twice a day IV in hosp., but all labs are looking great, so they lowered the Lasix to 20 mg orally in the AM.

More later. Just wanted to check in. I'm miserable, but still alive.

Thanks to everyone for helping out with the forum.

Hugs,
Connie

about all I can do is echo what Carol just wrote. At least you're home and hopefully this is your last surgery. I take 1 mg. prograf twice a day and that's on the low side, so half and half sounds great! I wonder why so much fluid buildup? I'm really happy to see you back...

Hi Connie,
I'm envious, that's nothing. Other than lasix, what else are you taking? How much liquid are you drinking each day? Before my transplant, my legs and ankles were terribly swollen, but there wasn't enough in my belly for paracentisis. My pcp had me taking lasix and limiting my intake of fluids. It helped some.

David, Lasix is 20 mg once a day and Prograf 0.5 mg a day, I am on fluid restriction of 1500 mL a day.

Hugs,
Connie

Oh Connie,
I am so sorry that you are struggling. You have been so strong and such a shining light for all of us here on the forum. I am sure that everyone, just like me, wish we could be with you to be your caretaker to help you as you have helped all of us.

Is there anyone that can come stay with you a few days?

Hugs and prayers,
Emma

Thanks, Emma and Splash. No, there is nobody who can stay with me a few days.

Hugs,
Connie

Connie,

  Thinking of you and hope to heck that fluid retention subsides soon.  So sorry you feel so bad. 

Angie1953

Now the swelling has gone to my hands...big balloons. However, I have lost a pound somewhere. I contacted my Transplant Coordinator yesterday and she increased my Lasix to 40 mg in the AM. She consulted with the hep doc and he does not want to add Aldactone because my kidneys are sensitive and in the normal range now. In fact, my labs all look good, though I feel like ---- and am in pain.

Today's my b.d., but it will be cause for celebration if I can walk without crutches. I hope that the swelling has diminished by next Thurs., or I won't be able to get to my Mayo appts.

I'm still miserable.

Hugs,
Connie

Shimbare, thanks. It's going to take months for the swelling to go down, based on prior experience which has never been as bad as this. No quick fixes.

I now have a dark purple bruise at my rt. ankle and a huge blister just above the left ankle. There are new blisters on my rt. ankle and foot as well as one just above the left ankle. I am mostly bedridden. I think the skin can stretch no further, and is finding its way out through the blisters. They do leak fluid.

Hugs,
Connie

Mr. E, Happy Birthday. Now I understand your stubbornness, though I'm not quite as stubborn. Myself, I'm having an Unbirthday.

I put in a call to home health, but they only recommended ER. I won't go, as I know there is nothing they can do. I'm already on increased diuretics and fluid restriction. Also taking pain med, which really isn't helping. It's just a matter of staying in bed and having patience.

Hope you have a good one.

Hugs,
Connie

Stay in bed then - so be it - i'm really hoping your recovery will gain momentum for you.! Happy Unbirthday!! :)

I have a lot of experience suffering with ascites and I am surprised and saddened to hear your doctors refuse to give you Aldactone. They tried the "lasix only" treatment with me at first and it was only slightly more effective than not taking anything. It really wasn't helping much and I was at that time in a lot of pain from it.

I then read somewhere that lasix had to be combined with aldactone (spironolactone) in order to be effective. I went to my doctor and begged that she prescribe it. I finally found relief and went from "pregnant with a basketball" to no discernible ascites in about two years.

I am pre-transplant and I know thats a completely different ball of wax, and your doctors have good reasons for what they do, but perhaps you can try to convince the doctor you need immediate relief from the fluid build up. Its quite unsafe and can lead to SBP among other things. They can monitor your kidneys while you take it, no? I would also insist on a paracentisis, even if they only get a small amount of fluid, it lowers your risk for SPB and will give some relief.

Just angry you are going through the ascites hell that I know so well... Best wishes

That truely sucks, I know how miserable it can make you feel. Best wishes.