Go Back   Lymph Notes Forums > Life With Lymphedema > Share Your Stories

Thread Tools Search this Thread Display Modes
Old Apr 15, 2011, 06:27 PM
jam jam is offline
Registered User
Join Date: Apr 2011
Posts: 2
Weeping legs-blood clots-no insurance

We sure could use some help. My guy has blisters, some broken and constantly weeping legs. It seems the fluid laying in bandages on his legs is just breaking his skin down more. Now burning has started. He has no insurance. Oh, also a diabetic.

What do we do? Right now we are using Xero Form on the open blisters and that's it. We now know to not use Zero Form, but the recommended absorbent foam with silver is incredibly expensive. If we get it, do we put it all over his legs or just on open areas? How often do you need to change it? We are changing dressings now every couple of hours. He is taking Comadin and shots to thin his blood and I guess we can wrap once his blood is thin enough.

Second question, we are hanging our hopes on Social Security Disability (he's 57 yrs old.) They have turned his down once. He is now much worse and has been hospitalized twice because of being so full of fluid. Do we have a chance with SSD?

I would appreciate any ideas.
Reply With Quote
Old Apr 16, 2011, 07:05 AM
Linda Linda is offline
Registered User
Join Date: Jun 2003
Location: New England
Posts: 35
Try Diapers

I read about weeping lymphedema in the book titled "Lymphedema Caregivers Guide."* One of the suggestions is the use of disposable diapers under wraps to absorb the fluid and to keep the area dry. This is very important in preventing the area from becoming infected.

* To learn more about this book, go to the Lymph Notes home page.

Reply With Quote
Old Apr 18, 2011, 03:00 PM
Cassie Cassie is offline
Registered User
Join Date: Oct 2004
Location: Arizona
Posts: 188
Jam, I'm so sorry for all you're facing -- how frightening and frustrating! I asked a friend who's a well-qualified and experienced lymphedema therapist and here's the information he suggested:

"As someone just mentioned, you can try disposable diapers but these may bulge and cause more problems with blisters. Someone else tried women's MaxiPads with some success because they can hold fluid under pressure but they're not sterile. Regular or bulk gauze tend to compress under pressure and can't absorb anything. As for medical type gauze, we've used Xtrasorb pads in large (7x9) sizes that did extremely well with excessive drainage, don't stick to wounds and keep the skin dry. Wrap these in inexpensive rolled gauze to keep in place and to absorbe any fluids that get past the Xtrasorb pads. Don't use ABD pads if you're going to wrap as they compress also and won't absorbe much under pressure.

Instead of using compression wraps, switch to Profore 4-layered wraps. They're not real cheap but they're not real expensive either. You can try using zinc oxide with calamine wraps over the skin before applying the pads to help with the healing and compression but if there is a lot of drainage, might not be real effective.

The Profore is great for reducing the edema, which in turn should reduce the incidence of blisters and drainage. Also, check for fungal infection. When you have a lot of moisture, fungus can set in and cause a lot of skin damage. Keep some prescription antifungal cream or ointment (not sprays) handy to apply to areas that do not weep to keep fungus from spreading or starting.

Also, mix some vinegar and water in a CLEAN spray bottle (1/3 vinegar, 2/3 water) and spray all over the legs. This will help discourage fungal growth (but won't kill it). Also, to keep infection at bay, purchase a bottle of Hibiclens foam. You can get this and some of the things above at for about $12 a bottle, which should last a long time. Hibiclens is the best thing on the market for killing germs and bacteria.

The important thing is to keep the legs DRY as much as possible AND reduce the edema. Avoid heavy compression to avoid pain. Use lighter compression over a longer period of time."

Also, in response to your question about SSD, he had this to add:
"Don't give up!!! SS will turn you down almost every time on the first, second and even third try but your chances of success continues with each try."

Praying you'll get this under control quickly. Please let us know how it goes.
Reply With Quote
Old Apr 18, 2011, 07:35 PM
jam jam is offline
Registered User
Join Date: Apr 2011
Posts: 2
Cassie and Linda,

Thanks for taking the time to help us. He is better! We have been using diapers and covering just the open areas with the Xero Form to try to avoid infection. The burning from the acidity in the fluid was terrible for him. We started rinsing his legs 3-4 times a day with sterile water and it pretty much stopped the burning.

Actually, there are a series of posts from a few years ago that helped immensely. A woman was just where my guy, Jim, was and she posted for sometime as she recovered. Bed rest is what worked for her with getting up and walking around several times a day. We found him an adjustable bed because he has had problems with breathing laying down. It has done wonders overnight! He slept for 15 hours and the swelling in his feet and legs has gone down substantially. He feels so much better.

He has a strong core: has the heart of a lion, hasn't gotten infected so far and heals quickly, thank goodness.

I will make notes on all the good advice from you, Cassie. You answered several questions that have come up in the last few days.
Reply With Quote
Old May 22, 2012, 09:04 AM
renita renita is offline
Registered User
Join Date: Aug 2006
Posts: 43
Sounds like he has Cellulitis with the Lymphedema to me? I have had it horrible, gained over 200 lbs. with the fluid that had filled my body. My lymphatic system totally shut down. My family rinsed my legs daily and I kept them propped up and when covered with clean t-shirts, they seemed to just get too hot and fester worse. When I went to the hospital, they immediately had me on a drip of antibiotics and put me on Lasix and I had a cathedar in also. I started losing 20 lbs. a week if not more and I was eating a balanced diet. Anyway, Physical Therapist came in and wrapped my legs every other morning. She first washed them with an antifungal wash and then put what she called UNNA Boots on me. It was a 3 layer process. 1st-she put Amlactin lotion on my legs, then 2nd-she wrapped my legs loosly with some gauze that was covered in Zinc Oxide, 3rd, she wrapped my legs in Kerlix (dry sterile gauze), the 4th and last, she covered my legs in a layer of the stretchy brown or tan wraps that are short stretch and they stick to themselves. Can't think of the name of them at the moment. I bought mine through many companies, but you can purchase all of this at Walmart. You wrap tightly at the foot, and work your way up. You don't want it so tight it cuts off circulation, and it needs to be a gradual loosening as you get up to the top of your knee.

I wore these for a year. My daughters and husband learned how to change them, and we only wrapped them 2-3 times/week. I had to change them, once they started itching. It would drive me crazy. You can't scratch, because you'll get a sore and the cellulitis will start all over again. It's rough. I'm through that now and all I wear are compression stockings for my legs. I buy mine on line. I buy the ones that are toeless and sometimes with the toes. They run around $28./pair. So much cheaper than the Unna Boots, but the Unna Boots are a Necessity while healing. Also go online and watch some the videos on Youtube for MLD (Manual Lymph Drainage Massage) This is a must to keep your Lymph flowing. You can do most of this yourself. I have my husband do my back occasionally, but I do around the shoulders and neck and stomach and fronts of my legs and backside on my own. It is a necessity, if you can't afford a therapist, do it yourself. I'm so sorry you are struggling. I too am a pay out of pocket person. I have no insurance. I do go to a teaching hospital where they have real Drs., Interns and student Drs., and it is a discount hospital, and I also can get a lower bill by prompt payment. You get like 20% off of your total bill if you pay within a month over the phone. Good luck with all of it. I know it's a trial. I hope your husband is doing better dear. My best to the both of you. My heart really does go out to you. I know where you're at and how you feel. I'm so sorry for what it's worth.
Reply With Quote

blisters, burning, diabetes, ssd, weeping

Thread Tools Search this Thread
Search this Thread:

Advanced Search
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump

All times are GMT -8. The time now is 10:55 PM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2016, Jelsoft Enterprises Ltd.
2009 by Lymph Notes, all rights reserved.