Newbie with some questions

[JacquieC]

Hi,

My name is Jacquie and I am 44 yrs young, I live right outside of Philly.
Long story short, back in Aug 2006 I came down with my first ever case of cellulitis in my right leg. After about a month of antibiotics it went away, HOWEVER this strange swelling stayed and began to move up to right below my knee. My primary doc kept saying it was from the cellulitis, 4 months after it began I noticed some "pitting", next thing I know I have 4 holes with clear fluid running out of them. Primary doc sends me for DVT ultrasound, no clots, still saying its the cellulitis. Few more months go by and now I am noticing my calf is hard as stone, now he has me taking Lasix, to no avail, all that did was deplete my potassium within 48 hrs.
I had even asked him twice if he thought it could be LE, "No, I don't think so" is his answer.
8 months have gone by now at it April 2007 and I notice my left foot and ankle are now swelling...... I go in and raise hell, I mean I was livid, I kept telling him this was not cellulitis and it certainly wasn't normal.
So he reccomends a Vascular Surgeon near by, takes me a month to get in. As you can imagine by now I am just beside myself with the imagination running wild as to what is wrong, I mean the last 2 weeks before being diagnosed I literally had to take a med for anxiety I was that bad, of course going on the internet and trying to figure it out was the worst thing I could have done.
I met with Dr Brotman the VS 2 weeks ago, turns out he was voted in the top 10 of this years Consumer Reports best surgeons.
Takes a history, reads the reports and examines my legs and looks up at me and says "You have secondary LE"
Then he explains things to me and tells me the next step which will be this Wed when I meet with the LE Therapist for evaluation

So now I have a name for it and of course I want to know as much as my brain will absorb right. I should have just read a little at a time because after reading some stories I find myself back in the panic mode.

I have a few questions if anyone can help me I would appreciate it.

1) Which antibiotics should I have on hand, I have a brand new script of Keflex in case of cellulitis, but what about a sore from say a blister from a shoe, a bug bite, etc...is Keflex ok for that too?

2) Which antibiotic creams or ointments should I keep on hand?

3) I have read stories about the fluids moving up into other parts of the body during therapy, does this happen to everyone?

4) Why does LE never go away, why will I always have this?

I'm so glad to have found this site, its comforting to kow I am not alone and I look forward to getting to know others.

[patoco]

Hi Jacquie

Super welcome to our family here

I'll try to answer your questions:

I have a few questions if anyone can help me I would appreciate it.

1) Which antibiotics should I have on hand, I have a brand new script of Keflex in case of cellulitis, but what about a sore from say a blister from a shoe, a bug bite, etc...is Keflex ok for that too?

2) Which antibiotic creams or ointments should I keep on hand?

3) I have read stories about the fluids moving up into other parts of the body during therapy, does this happen to everyone?

4) Why does LE never go away, why will I always have this?

1.) Keflex is an excellent antibiotic to have on hand. Another good one is Augmentin. These are the two most commonly used.

2.) Any triple action antibiotic cream is good to have on hand.

3.) Part of the process of enabling your system to get rid of the fluid is in moving from the effected areas into other areas where the body is able to take it on out. Part of this is in preparing the nodes and lymph system of the area it is to be moved into.

For example a therapist will "clear" the abdominal lymphatics before they proceed with MLD of the legs. That way, the abdominal lymphatics can keep the fluid moving.

4.) Unfortunately, lymphedema is not curable because they have yet (though they are close) to discover a way to cause regneration of the damaged lymphatics. I would suspect this will change within the next few years as more and more research is being done.

In the meantime, it is managable and you should do all you can to get into treatment and keep it under control.

Here are some basic info pages for newbies that can help provide info:

Leg Lymphedema

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

* * * * *

Leg Lymphedema Forum

http://www.lymphedemapeople.com/phpBB2/ ... m.php?f=29

* * * * *

Lymphedema Cellulitis

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

* * * * *

Lymphedema Complications

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

* * * * *

Lymphedema Decongestive Therapy

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

* * * * *

Lymphedema Wounds

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

* * * * *

Lymphedema Wound Information

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

* * * * *

All About Lymphedema

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

Hope this helps

Pat

[ksl4139]

Jacquie, Hi I am 55yrs. young and you have found an excellent site for all of your questions and for just venting. Everyone in this support group is great and it can really help you. Sometimes it takes a little searching for the answer to your particular question but then there is "Pat" and he can help so much. Its only been 8 months since my diagnosis and this will be my first summer with it and so far I just don't know how I am going to handle it! I just bought a pair of "Crocs", because my right foot is so swollen and when I wrap I can fit into it better than my tennis shoes.
I am hear if you need to vent and can possibly answer some of your questions, though I am a "newbie" still compared to others in this group that have had it for 20 yrs.
Kathy

[JacquieC]

Thanks for everything......and thanks to Pat for supplying me with great accurate information.

Does anyone have the web address for the Croc shoes I keep hearing about....I really want to look into those.

Thanks

JacquieC

[PamelaS]

Pat,

I would be interested in knowing, if you do, whether or not the idea of transplanting lymph nodes into living people has been considered - the way other organs are donated, i.e. the heart, etc.

Is it practical or even been considered? Has any research/studies been done along this line?

Many thanks.

Pamela

[ksl4139]

Jacqui, they can be found at Hallmark stores. I have seen others that look like them in shoe stores, Target etc. I now have them and I love them. I wore them with my leg/foot all wrapped up in bandages and it worked out great. Hope you find them.
Kathy

[JacquieC]

OMG........the ones in the Hallmark stores are Crocs? I have seen them then...cool, thanks for that info.

[patoco]

Hey Pamela

My biggest concern with this procedure is.....

Lymphedema is caused by damage to or an incomplete lymph system.

Sometimes, though the lymph system is at risk after this damsge, lymphedema may nto show for for years.

If you take lymph nodes from one area to transplant in another, it seems like robbing Peter to pay Paul.

You may help the LE in that one area, but then, are you causing another area to be at risk?

There just isn't enough time for there to have been adequate followup on this and checking for long term complications.

That's why I am just not sold on this being a good idea.

Pat

[suzeeq]

Hi Pat and Pamela, this is exactly what I need. I don't have any lymph nodes on my left side. I agree with Pat and would not risk taking nodes from my good right side to transplant to the left. But can you get nodes from fresh cadavers or from other donors, as Pamela said -like other organ transplants? I have tried to research this and know it's being done in Italy, but not sure what nodes they are using. Those sites can get very technical. Susan

[PamelaS]

Jacquie,
About the Crocs there are several websites you can go to and take a look at them. They have their own website:

http://www.crocs.com

Also try these websites:

http://www.shoebuy.com
http://www.zappos.com

Maybe it is just my feet but I prefer to wear socks with my Crocs, which are the clog style. I got blisters walking in them without socks. The only fortunate thing is that I don't have leg lymphadema - it's only in my arm.

Hope that helps you somewhat.

Pamela

[PamelaS]

Suzeeq that is precisely what I was wondering about. I would never mess with my own lymphatic system - that would be crazy! I was more curious if they could be taken from someone who died and implanted into one of us, like any other organ donation procedure.

I agree some of these studies can get really confusing - but we can hope.

Pamela

[carolinabutterfly313]

I was recently in Dick's Sporting Goods (not sure if they're everywhere or not), but I did find they had the best prices on Crocs and seemed to have a bigger selection than most stores I've been in. I even tried on the Mary Jane style and they fit! I was so excited, they're awesome!