My name is Stacie and I'm a 33 year old mother of 3. At my highest, I weighed 450# and have had RNY surgery to lose weight. I stumbled upon this site while searching for information on Lymphedema. Amy Williams's story was an inspiration to me and is my driving force behind pursuing a normal life while managing my own Lymphedema. Here is my story. Any input, advice, or otherwise is welcome.

I was diagnosed with Lymphedema in 2008 after bout after bout of cellulitis infections and hospitalizations. In May of that year, I spent 9 days in the hospital, spiking a fever of 105.4 and having my WBC as high as 26000. I ended up with blisters up the back of my leg and an incredible amount of pain. It was awful. I had infections every 3-4 weeks that year until they finally stopped for the time being.  Over the years, it has been frustrating, especially since I lived an hour away from the nearest Lymphedema Therapist with no vehicle.
 
I entered into the Surgical Weight Loss Program at Geisinger Medical Center in Danville, PA with hopes of having RNY surgery to help lose weight since my doctors told me that losing weight would ease the swelling in my leg (only my lower right leg is affected). I was in the program for well over a year due to 2 barriers to my progress in the program. The first was a fee that the program charged which was not covered by insurance. I simply couldn't come up with the money. The Doctor overseeing the program was considering waiving the fee, but I had to lose a certain amount of weight first. That became my second barrier. I had lost the weight that I needed to lose, but thanks to my lymphedema, I gained it back and the water retention was preventing me from losing anymore.

In a strange twist of fate, I was forced to move from my home and moved down to the Hanover, PA area. I was too far from Danville to continue in the program, so I had to quit. My new doctor was concerned about the swelling in my leg, so I found a Certified Lymphedema Therapist named Cindy and we moved forward with that. Unfortunately, my insurance at the time would only pay for so many sessions. I wasn't able to wrap my own legs and because I was new to the area, didn't have anyone who could help me to wrap daily like I should have. The therapist told me about some compression garments called Farrow Wraps which I could use by myself, but insurance wouldn't pay for them either as they are considered a "luxury". They are pricey and I have to have custom ones because of the shape/size of my leg.  I can't use compression stockings because my ankle is very small while the rest of my leg is large and all the stockings do is slip down my leg, strangle my ankle, and cut off circulation to my foot. I was discharged 2 months later with a BIOCompression Pump, but still had no one to help wrap my leg.

In May of 2011, I was finally eligible for Medicare (I had been pursuing disability for a few years and won in Sept of 2010) and went back for a second course of therapy. While the wrapping, pumping, and manual drainage helped, without wrapping at home, I was stuck in a rut. After 2 more months, was discharged from therapy again.

I also decided to pursue WLS again once I was eligible for Medicare. I contacted Dr. John Monk with Apple Hill Surgical Associates in York, PA and had my first appointment with him in July of 2011. Thanks to my lenghty time with Geisinger, he allowed me to forgo the educational portion of the pre-op process and go straight to the consultations to qualify me for the surgery. During that process, I ended up getting 3 more infections, with 2 hospitalizing me (I should have been hospitalized with the first of the 3, but the hospital I went to sent me home on oral antibiotics). The last infection landed me in the hospital for 10 days. I almost ended up in Critical Care because I spiked a fever of 104.8 (again!) and they were worried. Dr, Monk stressed the importance of having WLS saying it would help to relieve some of the swelling in my leg because I would retain less water.  Finally, in November, I was approved and set the date for RNY surgery.

After my last infection, I started another course of treatment with my Lymphedema Therapist. I really didn't want to go, but this last infection gave me blisters up the back of my leg and the doctor at the Wound Care Center demanded that I go back to her. I went back and we started another aggressive course of manual drainage, wrapping, and pumping. She stated over and over that without wrapping at home, I wouldn't be able to get my leg back to a more normal size. The Farrow Wraps were a necessity. I'm still seeing her twice a week and we are having fun watching my weight drop. As of my surgery, I'm down 56 lbs (I was 412# on the morning of surgery). My weight loss has slowed down and we both think it's because of the water I'm retaining in my leg. I would love to stay home and take the 80 mg of Lasix that I'm prescribed, but I've such an incredible amount of energy that I can't sit still! When I take it, I'm peeing every 3 minutes. Next week, I'll have to slow down a bit, bite the bullet, and take those darn pills so I can see more of these pounds that I know I'm losing come off on the scale. Cindy stresses the importance of moving and exercizing. She says the "muscle pump" gets the fluid moving. I can do so much more and spend more time on exercize equipment than I had before.

I can't wait to finally get my Farrow Wraps within the next month! I will be paying for them on the 2nd when I get my SSDI payment and hopefully they won't take too long to get to me. I'm anxious to see the difference that daily wrapping will have on my leg and hopefully I'll be able to wear shorts/capris/skirts/dresses with pride once again. I must note that I don't care what people think about me or my leg. I've had to overcome the feelings that come with having a misshapen leg and the worry of what people think when they see it. "If they don't like what they see, they don't have to look!"

I'm sharing my story with you in the hopes that I can inspire someone like Amy has inspired me. God Bless you all and good luck with your own journeys!

Wow! You really have been through allot! I can so relate with you and your frustrations with lymphedema. I have lymphedema in both legs, upper and lower. I never got the traditional WLS, but I lost 120 lbs from being sick and had a panniculectomy (extreme tummy tuck) due to all the fat pulling on a hernia. They removed 20 lbs of fat off my hanging belly.My surgeon warned me that this surgery may make my lymphedema worse, since she would have to be cutting real close to my pubic area and lymphnodes. I have been going through a living heII too!

I have gained about 150 lbs and my doc said most of it is most likely from my lymphedema. I dumped that b*tch who ridiculed me. I have been on a waiting list for a lymphedema specialist for over a year now. (i saw the wench while I was waiting for a better one) I had cellulitis too and was hospitalized for it. One of the causes of it.......bedbugs! As we know, any break in the skin can cause us to get cellulitis. Our landlord hardly did anything to get rid of them. (properly, anyway) And due to the bugs, the office manager of my doc's office told me I can't go back to the doc's office until the bugs are gone. My doc tried to get a VNA to come and wrap my legs, because I can't do it myself either, but they won't come because they could accidentally bring the bugs to their next patients home, or even their own home. So now I can't see my doc, nor a VNA, and my number came up on the list I have been waiting for professional lymphedema help, and I had to tell them I can't take it right now due to the damn bugs! I've been to court and everything regarding my landlord and his poor (cheap) treatment of the bugs, and it not working. I have another apartment, to which I hopefully will be moving into next week. (I am also on SSDI)

I haven't seen my doc since August! And due to the fact that I have been unable to treat my lymphedema, I am now around 450 lbs, can't find sneakers (or clothes) that properly fit, and have a wheelchair being delivered because I can barely walk! This past Christmas, I fell in my living room, and couldn't get up for over a 1/2 hour! My legs are so heavy, it was impossible to get up. With my fiance's help and me bearing the excruciating pain of getting on my knees to climb up on a chair, I managed to get up. I am glad there wasn't any fire or anything! My fiancee requested several times that he call the fire department to help me get up, and I said no way in heII!!!! I would just rather die than be the joke those firemen would, no doubt, be telling everyone----about the Christmas they would never forget!

I am trying hard not to care about all the staring and pointing and comments I get from the ignorant public, but it really is hard not to care. I've seen some really pretty hair barrettes that look allot like a tiara. I just may buy one (or 2 or 4) and wear them like a queen! And then when I get stares, pointed fingers, and perhaps questions as to why I am wearing a tiara, I will say it is because I am a princess and I am special!

If you are ever in a bind where you can't get your legs wrapped every day, maybe your doc could hook you up with a VNA to come do them for you.

Well, this has been a long post, but I'm glad I can find others who can relate to what this horrible condition Lymphedema is! Thanks for sharing. (and caring.)   

I was told that because I'm not homebound, the VNA would not come to my home to help me wrap. That was one of the barriers in my treatment. Although I was very big, I've never been one to sit around and am always out an about. It would have been too much to go to my therapist every day to be wrapped and the nurses around here really don't know much about wrapping a limb with LE. I'm confident that the Farrow Wraps are going to be the key to my treatment. They are bandages, joined by a panel in the back, which wrap around the front of the limb you're treating and fasten with velcro. Like I said, they can be pricey. My leg is too big for the off-the-shelf ones, so I have to get them custom made. The good part is, with them being velcro, I won't have to get smaller ones once my limb shrinks in size. I can just overlap them more! That being said, the custom wraps cost $250 and $16 to ship. It's a shame insurance doesn't cover these more for people. They think we can just find people to help us wrap. Makes it harder for those of us who have an easier time getting around......

Good luck to you! I hope it all works out, especially with your living situation. I knew a girl who had bedbugs in her apt because of the people who moved in above her and when she moved, she had to get rid of all of her upholstered furniture. It's quite a frustration because even the exterminators say it's such a difficult problem to treat! 

As far as clothing, have you tried ordering your clothes? I got some pants from WomanWithin that were knit. Although the legs to them shrunk in the wash, they go up to 6x I think. Even without the Lymphedema, I've always had larger thighs which make buying pants difficult. Their jeans are alright. If you let me know what size your bottoms are, maybe I could send the 2 pair of jeans that I have to you. They are a little larger in the legs which will help. I would have to know the circumference of your thighs and your calf so that I could ensure that they wouldn't be too tight for you. You could check them out online as well. They are 38W wide leg elastic top jeans. They aren't stretch material, but they are comfortable. I'm also starting to really swim in the 2 pair of knit pants that I have. They are a little shorter in the legs because they shrunk, but once I'm out of them for good, I would be more than willing to let you have them. I know how hard it can be to find clothing in our sizes and when you do find them, it's not exactly cheap. Do you need a coat? I have a 5X one that I bought last winter that I simply swim in anymore. I got it from WomanWithin as well. It's got a fleece lining that can be removed, so you can wear it for more than just winter. Let me know!

Oh, clothes are always very much appreciated! I agree with you, that plus size clothes (at least the ones that are decent) are really hard to find. And yes I do need a coat. The one I've been wearing is kind of ratty and doesn't button down all the way. I will have to get a tape measurer for my legs. As soon as everything is going right with my moving to a new place and with the post office stuff, I will give you my mailing address. Thank you so much for this help! If there is anything I can do for you, too, just name it, ok? Thanks again.

I accidently emailed the wrong woman asking her for her jacket and clothes! LOL! 

Now that I am in my new place, I can give you my mailing address if you still want to give me the coat.

Traci Wagner
56 Merrimac St.  1st floor
New Bedford, Ma. 02740


I will give you my email address too. I really do apreciate any help you can provide. Thank you.

feline_obsessed@yahoo.com

Keep in touch 

Okay! That would be wonderful! I'm excited to be able to send them to you! Anything I can do to help.....

A little update on my situation. I may not be buying the Farrow Wraps after all! I discovered last night that I am able to wrap my leg myself with the long bandage! I don't get out of breath and it's almost just as if my therapist wrapped it! I'm going to go in to my appointment tomorrow with my leg already wrapped for her to see. I'm really hoping that she says I don't have to buy them. It will save me over $250!

Hi Stacie,

Welcome to the losers bench.  Those of us with BMI over 50 and other disorders have a much harder journey then some of our fellow "losers".   I was 470 lbs. at the time of my surgery.  I had been over 500# at one time and had decided that I would have a panni done, (like the surgery Ms. Kitty explained).  I came home from that surgery 50 lbs less after one day.  I was excited, but I still had really bad knees and quickly fell right back into old habits.  Like many I never thought that i ate a lot, but in essence I did and not being a big mover I would continue to gain.  I only had a block to walk from my car to my job and coming home at night I would cry my eyes out because I was in so much pain.  I knew I had to do something.  I also had frequent bouts of cellulitus but I wasn't seeing the right medical professional and also if the antibiotics made it go away in a few days I was happy.  I can't tell you how lucky I am and also how strong my body must be.  iIn 06 I had RNY and within 3 months I lost over 200 lbs.  My honeymoon period was very short as i only lost another 70 lbs.  I have had another panni along with some other tightenings. 

I then started to gain again.  All the weight loss still wasn't enough to make my walking any easier.   My knees are bone on bone and nothing but new knees were going to help.    In January of this year I have had my first knee replacement and will get the other one at the same time in 2013.  I still have a long weight loss journey ahead of me, but I can't tell you how wonderful it is to be able to walk better.  My other knee is still very painful and I am not 100% back yet, but I will be back on my journey.

I wanted to share a part of my journey with you.  You are doing remarkable.  Please keep up the good work.  Also make sure that your medical people are watching your potasiuum (sp?) levels

I also wanted to invite you to come over to the PA board.  It is a very active board.  I know you live 2 hours away from where the majority of the members are, I am sure that you will enjoy the forum. 

My best wishes to you on your journey, also on your wrappings.  I admire that you are taking the step. 


Jeanne

Hi, just seeing your post from my phone will reply with more later. Are your feet affected by the lymphedema? Mine aren't I actually have lipedema and lymphedema.

Did you get your Farrow wraps? How are you doing overall?