Edema causing pain standing and walking...help

@jeanne5009, Please call your transplant coordinator or doctor. I am not a medical person at all, but with ESLD, it is possible to develop Kidney failure. Since you say this is getting progressively worse, do not wait for your PCP to return.

Are you elevating your legs? This is the only thing I know to do in addition to what you have mentioned.

In my situation, I was swollen with abdominal ascites, and edema made breathing difficult and any movement I had edema and my legs and ankles were swollen. I was miserable, and too weak to do much of anything. I don't know how much was related to my kidneys, but I did have acute renal failure and needed dialysis until I could transplant. Don't wait until it could becomes an emergency!

jeanne5009, Let me know what you find out.
Rosemary

@jeanne5009, I agree with Rosemary. Better to be safe than sorry and seek medical treatment and not wait for your PCP's return from vacation.

@rosemarya @colleenyoung
Talked to nurse coordinator. They are increasing Spirolactone and fu with blood work to check kidney function.
Family Dr. substitute sent me for xrays and will follow up next week. So Im on it. Thanks for your good advice as always.

Thanks for updating us on the situation. I was holding my breath if truth be told. Good to hear you and your team are on it.

@jeanne5009, I am glad that they are on top of it. With ESLD, it is always best to make the call to your coordinator, even if you feel awkward about it. A person in normal health might be able to wait something out, but not someone with a compromised organ. You did the best thing for you. I hope you get some relief.
Hugs and prayers,
Rosemary

@colleenyoung
Just an update on my pain in the heels....or neck lol
Xrays indicate that I have small stress fractures and bone spurs in both heels. Ugh!! So the edema compounds this and I will be losing some weight and visiting a podiatrist in the near future....
I have been closed out with my insurance with Optum for now since I am to early to list at Mayo. Some decomposition is present but meld is only 7. So I go back to Tampa General for care until which time I am ready to list. At that time I will choose which center I feel suits my needs. Tampa General has told me that I can only be listed with one center. I have to verify that because I am under the impression that I can list with more than one. Anyone out there have info on this??
So... I'm patiently waiting and while I am.... I will continue to support all of you as you proceed towards the receipt of a wonderful new liver.
This group is unbelievably helpful. It is a source of knowledge and support for all of us... thank you.

So sorry to hear about the stress fractures @jeanne5009! What a pain (literally) on top of everything else you're dealing with. That's odd that Tampa General said you can only be listed with one transplant center. Here's a resource from UNOS that hopefully clears up any confusion regarding being dual listed: https://unos.org/wp-content/uploads/unos/Multiple_Listing.pdf

@jeanne5009... my edema comes and goes but is very bad right now. Making it hard to breathe. My MELD is 27 so they have me on furosemide and spironolactone. Fairly high doses of each. Problem is the side effects the worst being diziness, nausea and loss of appetite. It does reduce the water build up though.

Thanks for the update, @jeanne5009. I'm glad that you have some answers to the pain and worsening edema. My understanding is that you can be listed at multiple centers. @bobbutler asked a similar question a while back on Connect:

- How do I get on multiple transplant lists for a liver? https://connect.mayoclinic.org/discussion/i-have-been-added-to-the-transplant-list-for-a-liver-at/

@jeanne5009 Once I was attached to the transplant center my PCP had very little to do with anything that was related to my liver for the most part.
I too was on two diuretics as things progressed, and I remember looking down at my feet one night, they were up on an ottoman, and there was water leaking out of them. That was really disheartening, that I was so full of fluid it had to go somewhere. Up until then I was amazingly well.
When things started to go downhill like that I was very anxious for a transplant. Prior to that I sort of wondered if I really did want one.
No wonder you are in pain, with stress fractures. The only pain I was in was from my skin being so stretched. I am surprised you have so much fluid retention with such a low MELD but I have learned that we are all quite different in how this disease effects us.
I was told at one point, and I am not sure if it is true, that you can only list at one center in each region. Perhaps that is what they meant when they told you that you can only list at one.
JK