Major drainage and it's effects good or bad???

[teddiv]

I know it's been a long time since I've been here but it's been hard trying to cope with feeling lousy about half the time and trying to work so that we are not always overdrawn. I can't get anywhere to work a 'real' job so I have found a position working on the internet which helps me a lot. I feel useful and make a few bucks.

But not to digress, lately I have been having major drainage from my hip. But it does not seem to make me any smaller and when this happens it is not just a dripping but like someone turned on a faucet. My husband felt that we ought to measure to know just how much I'm losing and a few minutes ago, I lost a little over two cups of yellowish fluid.

The doctor I had been going to has left the practice and I have not been able to find anyone to take me on. The county nursing service decided a few weeks ago that I did not need nursing so they discharged me and even though I cannot clean my house or get around enough to cook and do laundry etc., they also decided to discharge me from home help. So I now have no doctor, no nurse and no home health aid. I seem to have been cast adrift by the system and in the meantime, I am feeling bad more and more of the time. I just don't know what to do - nor do I know what this drainage means nor how bad it is for me or what to do about it.

My question is, has anyone here ever experienced major leakage and does anyone know what it means or what I can do about it. Any help greatly appreciated.

Teddi

[patoco]

Hi Ya Teddi

That is major fluid lossThe concerns and I have are multiple about that draining.

First, it really opens you up to an infection. Is there any way of you getting antibiotics as a preventative measure?

Secondly, the fluid, called lymphorrhea

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

is terribly destructive to the skin it gets onto. This could lead to a larger wound and even more draining.

Third, according to a LE doc I know, when you have major drainage like that, your body sense the loss of protein in the interstitial tissues. Even though it is basically waste protein, your system will "dump" protein to compensate. This could potentially create a protein leve problem for you.

Are you able to bandage it or wrap it in any way? It really needs compression bandages.

Wish i could do more....one thing you might do is to get to an ER room or
a wound clinic (ASAP) . The ER people could either admit you or clear that way for you to get to the wound clinic.

How did all this start?

Pat

[teddiv]

Pat - Thanks for the reply. First, there is no way to get preventative antibiotics which I would always like to have around but since I have no doctor now and no nurse, there is no one to call.

I have always had drainage to some extent but when it was in my legs, it was easier to deal with. Even when it was on the side of my hip at least we could pack some chocks around it when lying down and they would soak up most of it.

This is coming from a spot on the back of my hip that has been that way for over a month. We are keeping it dry with chocks and Michael does not want to use tape because any tape just makes more sores as my skin is so thin. The strange thing is that I do not leak at night when I am lying down.

The last time I called the 911 and ended up in the er, they not only admitted me, they did every test in the book, then they sent me up to Mayo where they did even more testing. They were extremely inconsiderate at the Mayo and did not seem to care that I am an actual 'person.' Their diagnosis was "end stage morbid obesity!" They never even mentioned the le in their report. They sent me back to Mercy and they put me on intravenous antibiotics for a month. Altogether, I was away from home for almost two months and neither place wanted to let me get up and walk. I now walk again but with a walker and this due only to my own efforts, not theirs. I really hate to get back in their clutches. There is a doctor I would like to go to in Charles City but he has a full patient roster so I don't have much hope.

Pat, I'm just so tired - This whole thing has worn me down so much.

Teddi

[patoco]

Hey Teddi

I understand how you feel, trust me, the last year has been the toughest possible.

I imagine that it doesn't leak at night due to the pressure being so much less when your lying down. Lying down decreases the overall selling and that allows the wound to close easier.

Michael is right about tape...bad news there. I would be in serious trouble using any type of tape on my legs. When I have a drainy area, I cover it with gauze, then wrap the leg with rolled gauze, then use a short stretch bandage on it.

Trying to think how could we get some compression on that area. Is there anyway you can get a wrap on it?

Ring that county health nurse again, do they know of the draining?

You know what Teddi, I'd call them again and if they flat refused, I would tell them I'm going to contact the newspaper - and then do it. Let them know they are going to get some bad press for denying you health care.

I know how tired you must be emotionally, but ya gotta keep fighting...somehow..Teddi, ya just gotta get the boxing glove on with these people.

When you lay down at night do you lay on the draining area?

Pat

[debbiek]

I have the large amounts of drainage too, i am leaking out of my genital area, only when I lay down, the doctors i've been to said there is nothing they can do, and i have questioned them , i am extremely obese, the protein that comes out with the fluid is stringy long chunks, what is this doing to the protein in my body, is there a conection between low protein and weight gain. I just don't understand where all this waste protein is coming from? Thanks in advance for any advice on what to do to help solve this problem.

[patoco]

Hi Debbie

Yes, absolutely there is a correlation between a low protein level and weight gain. But - that weight gain that comes from it isn't fat - it's fluid. A low protein level will in and of itself cause generalized edema. If it is very low, it will cause an extensive
increase in the swelling. With the drainage - even though it's waste protein - your body still "sees" it as a protein loss. So it 'sends" protein out to compensate.

I would urge your doctors to test your protein levels and if they are low you should be on protein supplements.

Also, just want to ask if you have a lymphedema therapist?

Pat

[debbiek]

I went to mld therapy in march of 2009, i wrap and do mld therapy at home, i do have an appointment at the clinic in febuary, the lymphedema doctor does know about the protein loss, but doesn't know how to control it. my regular doctor is the one that tested the pieces of protein to find they were protein, at first he was thinking it was a yeast infection, i found out it was protein in November 2009. i seem to be kind of a medical mystery, hopefully at my appointment in feb, we can figure something out. My reg doctor tested the protein in my blood and said it was just a little low, but should he also check my urine for protein? Thanks for any help or info you can give me.

[patoco]

Hey Debbie

If the loss comes strictly from the drainage of fluid from the leg, then you probably can resolve most of it by having the draining areas closed up.

If the loss is due to a combination of factors, like mine, I'm not sure there actually is an immediate way of controlling the loss of protein. They haven't been able to with me yet. You'll need to compensate and take in extra protein to help your body get as much as it can. If you re not lactose intolerant, yogurt and diary products (cheese) are an excellent way and you'll need to really increase your meat consumption. The other way that can really help is through protein supplements, such as the powder mixes. I use whey protein - not soy - as my LE doctor feels it is easier for your body to utilize.

Remember, with protein loss will come additional swelling that will cause the lymphatics of the abdomen to dilate. When that happens the system just isn't able to process proteins and fats properly. You can loose a tremendous amount of protein through that process. if - if the lymph system will go back to normal, then the protein loss resolves. that only occurs though if the lymphatic dilation is short term. The longer it is dilated, the more unlikely it is that they will go back to regular size.

My doctor also tried albumin IV therapy, which didn't turn out to help hardly at all. So, the diet seems to be the most important thing in uping your protein levels.

While measuring the amount of protein loss in the urine is important, but, the standard for determining protein levels would still be blood tests, specifically tracking the albumin levels.

I can imagine this is a mystery to the doctors. Lymphedema is by itself confusing to them as they know so little about it - when you throw in things like protein loss, pleural effusions and the like it absolutely throws them into a daze.

Pat

[debbiek]

The doctor checked my protein levels, he said they are normal, i did go through mld twice (in jan 2008 and feb 2009) i do therapy at home and i have a lympapress pump for my right leg. i have been improving (lost 25 lbs) since the first of the year. I've been following a high protein, low carb diet and drinking lots of water, it seems to help. i still have the leaking and long strands of protein that come out when i lay down and elevate my legs.

[patoco]

Hey Debbie

Wow...super congrats - 25lbs is a lot of fluids...keep up the good work

Glad to hear the drainage has slowed down too and taht your protein levels are normal.....all good, positive signs.

I'm afraid my left leg actually started draining again....ugh.......I went through this last year too and it took almost forever (it seemed) to get the drainage stopped.

Lymphedema - always full of surprises and changes, right?

LOL.....I prefer other types of surprises

Pat

[centurynative]

Hi Everybody!

Although this is my first post, I wanted to thank all of you for teaching me about this process. My doctors say they are learning from the information that you provide. The first time that I was fortunate enough to trip across the website, I read a little while and excitedly yelled to my daughter that I had found “my people”! Thank you for providing so much help and support.

Drainage is one issue that I constantly guard against. In November 2008 I was hospitalized several days with large amounts of skin excoriation on both legs. A number of doctors were brought in on consults and no one knew much. When they set up appointments for me at the wound center, I had to teach them how to dress the affected areas. No one understood the amount of fluid dripping out or how to do a heavy dressing without using tape. Every day I had to drag my exhausted self to the center, along with my personal supplies, only to show yet another nurse how to use peri-pads, rolled gauze, and stretch wraps to hold it all together without tape. The excoriations were so bad and the drainage so heavy that it took six pads taped together to handle the fluid for a few hours. Needless to say my primary doctor was upset because the blood protein levels indicated that I was malnourished. It took forever, or so it seemed, to heal.

Teddi and Debbie, please hold on. I know the exhaustion that is part of this illness, both mental and physical. Pat is right about having to fight for assistance. When I lived alone, none of the agencies would provide help. I live with my son and daughter-in-law now because last January a mishap with my power chair resulted in a bad laceration on my lower left leg. That’s another story! Thanks to Kristy’s perseverance, we have an aide three days each week and Elder Affairs and Counsel on Aging are providing supplies, ex. protein supplements. We are slowly beginning to qualify for other types of assistance, but it is a long, slow process.

Do either of your states have a Home and Community Based Services (HCBS) Waiver or a Consumer-Directed Care Plus program? If you contact Elder Affairs or Counsel on Aging they could direct you to the right place, even if you do not qualify with them because of age. Possibly the Center for Independent Living could provide assistance or suggestions. We have to learn to be very proactive toward our health care. Please hold on and be strong. The bad times do not last forever, it only seems that way sometimes.

Barbara

[patoco]

Hey Barbara

Super welcome to our family

Thanks so much for your post too.

This drainage issue is absolutely maddening for me. Like most leg lymphers I have always from time to time had a drainging spot. But, I've always been able to get it closed within a few days. That all changed a couple years ago and now it seems, both legs are in a conest to see which one can drain the most.

Now it takes forever. I get one area closed - and a few days later, it's back.

The very important thing is that you make sure you change the dressing/bandage every day (or more if needed); use a gentle antiseptic on it and keep it as bacteria free as you can. Barbara is right. These spots can be a major source of infection/cellulitis so it is critical to take care of them.

Also, compression is a critical element in treating them. While it make take forever while using compression, if I didn't do it then it would go totally balistic in a second.

Teddi, the problem is that the fluid interrupts the healing process as is so harmful to the surrounding skin area.

What happened with your hip drainage?????? Were you ever able to find another doctor - how about that doctor in Charles City????

Pat