drained where?

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drained where?

Postby mama » Fri Jun 30, 2006 1:28 am

My husband Josh has had LE for about 4 years now. Even though I don't have the disease (would we call it a disease?) it has affected every aspect of our lives so I feel just as involved. Josh suffers from many of the same maladies that many of you have mentioned - morbid obesity and back problems that prevent him from doing his own MLD. I try to do as much as possible but my hectic schedule as a young mom, teacher and student doesn't allow me to do effective MLD, and wrapping is nearly impossible. (Wash, dry, roll, wrap...ugh.) He used to go out for MLD by a wonderful therapist here in Rochester, but it was SOOO painful for Josh to leave the house and since we honestly weren't wrapping, we weren't seeing any benefits. (Sad but true!) It doesn't help that he has claustrophobia and goes into panic attacks whenever he is compressed.

As his primary caregiver and wife, I am constantly worried and concerned, which leads to guilt and a whole host of emotions whenever his state gets worse. Three days ago I popped a blister that has triggered his leg to weep. Talk about guilt! (Talk about a new problem to manage as well - Thank God I have the summer off!!)

How do you guys deal with lymphorreah?? I need tips - I have spent $60 in two days on gauze, tape, bandages...laundry! This has to stop at some point, right??

Anyway, my main topic was where does the fluid get drained to...really? Josh's LE started in his foot and calf and stayed there for a year until he was diagnosed and began wearing knee-high compression stockings. That pushed the fluid into his thighs. After wrapping and MLD and a Reid sleeve, it took over his stomach. It has taken over all of the areas inbetween unfortunately as well. :( Josh does not want to continue with any sort of compression because it doesn't seem to be going anywhere. With his back problems, he can't support any more fluid in his stomach. As it is, it hangs down past any size shirt, humiliating him. I know it is supposed to be passed out through urination after MLD, but it's not.

I read your stories and see that you still get infections and sores and pain even when you do the right thing. We are both so discouraged and don't have the energy to follow such a rigid routine when we don't see the light at the end of the tunnel! :cry:
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drained where?

Postby patoco » Sat Jul 01, 2006 11:11 pm

Hi Ya Mama :)

The fluid, when it is drained through decongestive therapy is actually moved into other areas of the body where the lymphatics are better and can moved the fluids on out of the body.

Here is our page on lymphorrhea:


http://www.lymphedemapeople.com/thesite ... orrhea.htm

We need to get that draining stopped for your husband.

Can you let me know how you are wrapping and bandaging it? I'll be keeping an eye out for your note.

I know it is discouraging...OMG...and that is putting it mildly. But the alternative to wrapping, therapy etc is disasterous. When lymphedema is allowed to get to stage four there simply are complications that are incredibly severe and even can be life threatening.

Getting started in a consisten pattern of management will make a big difference, even though it doesn't seem so now.

Give your hubby my best...and let me know about the wound bandaging.

Pat 8)
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stage 4?

Postby djoyner0309 » Sun Jul 02, 2006 5:17 am

I'm new to the world of diagnosed lymphedema. I've evidently had it for about 20 yrs, but I (and family & doctors) thought I was just fat, and retained a lot of water...well, that's another story. I read your reply regarding taking care of the legs but the part about "stage four" puzzled me. I have heard about stage one, two and three (I believe I am in stage 3) but what exactly is stage 4?
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Stage Four Lymphedema

Postby patoco » Sun Jul 02, 2006 5:48 am

Stage Four is actually a newer staging classification.
In my page on Lymphedema Stages, I had proposed the concept the three stages were not sufficient as stage three was far too broad.

"03/10/04 Proposed

Discussion Stage Four:

There have been some voices raised about a Stage Four classification for lymphedema. From my personal experiences, I concur. Both my legs are classified as Stage Three, yet the difference between the two is very dramatic.

Stage Four Classification

The limb is so densely fibrotic that it is not possible to make any indentation when pressed. It becomes impossible for ultrasound testing to pick even the blood pulse. The skin becomes brittle and
even the slight of bumps causes a serious, extensively weeping wound.
Because of the hardness of the tissue, it has become a total septic foci for bacteria and constant cellulitis and systemic infections become the norm. The only treatment for cellulitis is an extended period of IV antibiotics.

There is no treatment option for Stage Four. The complete focus is on management, containment of infections, prevention if at all possible of amputation."

Both of my legs would be considered at the old stage three.

However, the left is so far beyond the right one that they simply can not be described in the same way. Evidently, others have had the same opinion. Dr. Salvador Nieto, an incredible lymphedema doctor in Argentina has proposed changing the classification to include a stage four.

• Corresponds with stage IV of the HCDC.
• Limbs with severe skin disease.
• Limb morphology: monstrous characteristics.
This is the most advanced stage. It is so peculiar that clinical examination makes other studies unnecessary.

Interestingly, the tissue is so fibrotic in my left leg that radiological scans can not penetrate it...ultrasounds bounce right back. Serious, when you consider the risk of a blood clot at this stage.

I do hope this catches on and the medical world will rethink the entire concept of staging.

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Postby marigold » Fri Jul 14, 2006 3:11 am

"Mama" (can you give us another name to call you by? it feels a bit odd to call you Mama!) --
First of all, you truly have my sympathy. You and your husband have been trying to deal with this problem for years and things just get worse. But as is usual on forums like this, I am going to give you my opinions.

First: You are a teacher, student and mom, plus caregiver and emotional supporter for your husband. Clearly, this is too much for one person! You can't give up your job, as evidently your husband cannot work. I presume that you have insurance that has paid for his medical care. You don't say how many children, or how old, but in any case, you can't get rid of the kids! That means that school needs to go. You may say that you need to go to school in order to get a better position, but I think you should look into finding a way to postpone school, or take a lighter schedule. Aside from your husband's situation, the children will suffer from the strain that you are under yourself.

Second: If it is true that there is medical insurance or disability insurance, count yourselves lucky! You will find some people posting here or elsewhere who don't have insurance, can't get SDI, etc., or who live hundreds of miles from a clinic that can treat lymphedema. You, on the other hand, are living in a city. And if Rochester is the one in New York state, you are living in a city with well-known medical facilities. Take every advantage of the help that is available!

Third: While you are suffering from stress, Josh seems to be severely depressed. HE NEEDS TO GET HELP. If "claustrophobia" prevents his from being wrapped, he has got to deal with that on a psychological level. I really recommend seeking some kind of counseling or therapy. And if Josh won't leave the house,...well, as Dear Abby always says, go for counseling yourself, to help deal with the stress.

Fourth: You hate to wash, wrap, and roll those *&@&$ bandages? So do I!! I really hate it! But some people on here have posted about how they work it into their schedule, so I have tried to do that. (I don't have to wear bandages all the time, but I have to sometimes.) I roll the bandages while watching TV and it really doesn't take long. You can do it while chatting with the kids about their day. Surely Josh is able to do rolling?

Fifth: If you both felt that Josh was not getting any benefits in spite of being treated by "a wonderful therapist," then either he didn't go long enough, or the therapist was not wonderful, or ....you both need to get more information. Did you talk to the therapist and ask what his/her experience has been with other patients, or what prognosis he/she saw for Josh?

Sixth: Lymphorrhea is really nasty. I have been draining from the genital region for 16 years...really! At first it was intermittent and very light, and gradually more and more. The doctors I saw (not often, as most of the time I had no insurance and not much money) did not know what to say. I knew what it was--self-diagnosed, as I had slight LE in my left leg--but the medical guys didn't! :roll: I had no idea what to do and just wore pads, which I still do. The only advice I have been given is that compression etc. comes first. Even the experts don't have great solutions for genital lymphorrhea.

Seventh: You are right that treatment CAN make the LE spread. Twoyears ago the edema in my legs got worse after several bouts of infection. I acquired a job with insurance and began getting MLD, and wrapping, etc., but to my dismay, I gradually developed a puffy area on the lower right abdomen--the damned LE was moving up there! I do self-massage daily as instructed by my therapist, and so I keep an eye on that area, but can't seem to make it disappear! :x Here again, I feel that the medical profession is not meeting the challenge of helping us manage LE. Nevertheless, if I had NOT had therapy, my leg would be permanently gigantic by now.

Eighth: You say that Josh is"morbidly obese." When would you say he turned from pleasantly plump to "morbidly obese"? If you cannot attribute all of his obesity to lymph buildup, then Josh really needs to lose weight. It sounds as if he is inactive, as moving is painful. I think it would be a good idea if he could talk to a doctor, and explain that he knows that his weight is interfering with his therapy, and he wants to improve his health in general.

Well, I guess you have noted by now that we LE patients have to totally educate ourselves and be our own advocates both medically and legally. If you are going to save your marriage and your health and Josh's life, I believe you will both need to make a decision to learn all you can, do all you can, do the wrapping, the MLD, the counseling. I wish you the best!

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Postby silkie » Sat Jul 15, 2006 3:08 am

Hi Moma Hi Marigold

I don't think there is any solution for carers

When you need 30 hours in a day and there are only 24 you have to leave something

The one thing i know from experience that kept me sane

was the little time i took myself away and had QUALITY TIME JUST FOR ME

it was not selfish when i shut myself away for an hour and did something just for me (painting) it was re fuelling it was what kept me going

It was an hour or two when i was the most important I was ME

not moma not nurse not councillor, not bread winner not mrs fix it

just me

I think you do well to do schooling it might be hard to fit it in moma
but its something just for you you are important you deserve
a little time thats just yours

Make sure you have that time

you deserve a moment or two just for you


Silks xxxxxxxxxxxxxxxxxxxxxxx
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Postby mama » Sat Jul 15, 2006 1:08 pm

Just a few more hours in the day... :wink: That might just be the answer! It's something we all wish we had. I wish I could cut something out to make more room for Josh's therapy. I wish a lot of things. But I do need to count my blessings.

Because of God...
-My husband gets Disability (due to a major back problem found during
the testing for his swelling.)
-We live near therapists and have very caring, understanding doctors.
-We have a supportive church family that brings The Word to our home
since Josh can't get there.
-We have a beautiful daughter who rubs Daddy's feet and brightens out day!
-I have all of you to go to for advice and support.

Silkie, thank you for your kind words. As hard as grad school is, I do at least get one hour of travel time to relax and listen to audio books!

Marigold, thank you for your advice. Sometimes we all need a little kick in the behind to get us going. I wish cutting school was an option. I put it off when my husband was diagnosed and now I have to get my degree by a certain time or I will loose my teaching job. My heart truly goes out to you and your struggles with Lymphorreah. Josh's only lasted one week and I'm glad I was there to assist him. I realize not everyone is that lucky.

The only way that we have been able to get through this is through God and a sense of humor. When Josh learned what the leaking was called, he said, "Great, now my lymphedema has diarreah." :lol:

Look on the bright side of every situation, as bleak as all of yours may be! God Bless.

Stacy (aka Mama)
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Postby silkie » Sat Jul 15, 2006 3:34 pm

Hiya Stacy moma lol

Hope the schooling leads to wonderful opportunities

and a little more quality time for you and your family

Bless Stacy were here any time you want a chat a giggle or a

venting of frustrations


Silks xxxxxxxxxxxxxxxxxxxx
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where does the fluid go

Postby Teddi » Thu Jul 27, 2006 10:49 pm

That sounds so familiar! Mine is also now in the hips, thighs, belly and butt. I understand that if it goes higher it could be a danger to the lungs and/or heart so I am not tryiing to wrap there either. As so leg wrapping, yes the supplies are expensive but I applied for and received ss disability and they do pay for the tapes, gauze, etc. Perhaps you could do likewise. I also have a problem with morbid obesity but am about to get back on the Atkins diet which seems to work well - you also might think about that for him. Those are my only suggestions - hope something helps.
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