Page 1 of 1

Lymphodema anyone?

Posted: Sun May 21, 2023 7:52 am
by WightPolly
Just wondering if anyone, either on dialysis or post kidney transplant is experiencing the joys of Lymphodema? I'm 2 yrs post tx and my kidney is doing well. But my quality of life is impeded by the swelling in my legs, feet, and to a certain degree, my arms. I elevate my legs as much as possible, keep my skin moisturised, try to keep mobile with daily walks and am awaiting another fit for compression wear (not had anything suitable so far).
My aim is to stop it from progressing. There is, currently, no cure and it seems to be a chronic condition (of the lymphatic system) which is not yet fully understood. Personally, I feel it is connected to my immune suppressants, as the lymphatic drainage system is part of our immune system. But, no immune suppressants, no kidney.........
So, it would be interesting to hear of any Lymphodema experiences and coping mechanisms.

Re: Lymphodema anyone?

Posted: Fri Jun 23, 2023 3:08 pm
by wagolynn
Have you looked at

It would appear there isn't any medication to cure this condition.
As I understand it, the Lymphatic system doe's not have a pump like the vascular system.
Fluids are moved through the Lymphatic system by muscle movement when you are active, it dumps fluid into the blood circulation close to the heart on the inlet side.

A Physiotherapist should be able to show you how by massaging you can help this along.

The fluid causing the swelling is called 'extracellular fluid', this is fluid that escaped through cell walls, this is normally removed by the Lymphatic system, and if the conditions are right, some may move back into the cells and back into the blood stream.

Drinking too much liquid can make this worse but take medical advise before reducing your water intake.

I hope this helps.

Re: Lymphodema anyone?

Posted: Sun Jun 25, 2023 10:34 am
by WightPolly
Hi there and thanks for posting a reply.
Yes, the NHS site is good, as is The Lymphodema Support Network.
I'm under the NHS for my lipo/lymphedema and, fortunately, a clinic here. I had a very good appointment recently with another fitting for compression wear (looks promising this time). We also discussed appropriate exercises and self lymphatic massage to help with drainage.
The nurses specialise in Lipoedema/Lymphodema and so are very knowledgeable in that area. One of the things they stressed was the importance of staying hydrated and drinking a good amount of fluids - which ties in nicely with looking after my kidney. :D
I was wondering how people who have this condition manage on a day to day basis. Have they managed to stop it progressing through self maintenance? Any pearls of wisdom that can help me going forward?
Many thanks.

Re: Lymphodema anyone?

Posted: Sun Jun 25, 2023 3:18 pm
by wagolynn
Hi WightPolly,
This forum is about kidneys, I don't recall anyone posting with lymphatic problems.

Have you tried searching the internet for Lymphodema forums?

Best wishes.