In February 2004 it was confirmed that I have Primary stage 3 Lymphedema with Lipodema. I start Lymphedema Therapy on 2-17-2004. It's been a long hard battle to get this treatment. My PCP (Primary Doctor) was not educated about Lymphedema and I had to help educate them on what they need to do for me to ge this condition under control and ultimately able to have weight loss surgery. Those that don't know about Lymphedema it's also known by the term LE for short.
Just a little history. Back in 2001 I weighed about 300+ pounds, although I was still considered obese my ability to be mobile was not a hindrance. I have been overweight for the majority of my life. As I thought back to some events in my life I remember an instance when we where moving that I had fallen on some concrete steps. I now believe like my therapist that it triggered my LE to come out in full force. Even though it's believed I had Lymphedema all my life, the fall made it come on. Basically if you have Primary Lymphedema there was always a problem with the lymph system and the slightest thing will bring it on. It was a couple of days later. I had got up really fast one morning and needed to slip something on. I put my pants on from the night before. Well, the same pants that fit me the night before didn't fit my calves. I honestly thought at the time that I had just been swollen because of the fall and it would go away, but the swelling never did, in fact it got worse. I didn't think much more about it because I also thought at the time I was gaining weight.
A couple of months later, I had to get even larger pants. I've always been larger in the bottom, than the top. So I set out for more clothes. It was also about this time fitting behind a steering wheel became very hard, again blamed it all on my weight. Around March of 2002 something was not right my socks would not fit anymore. I had to wear bootie type socks because my ankles pretty much disappeared under the new flap that had appeared. I no longer had an ankle. The calf was covering it. They just disappeared. It was at this point I thought I have to get control of my weight. I started looking in the "LAP BAND" which is a type of weight loss surgery. After reading about how it had not been done on many larger patients and the fact I didn't have insurance at the time, I just dismissed it and moved on. Months passed and things got harder and harder. I knew something was wrong again I blamed myself all along getting more and more depressed, yet I had not changed my diet or anything. I didn't know what was happening to me. I prayed for an answer to my problem. I was now down to the point that walking was becoming harder to do, I was very short of breath. My husband was the only one working so living was difficult. We had a business that went bad. My husband Kenneth on November 2002 applied for a new job with the state. We were happy because the job offered insurance benefits. When he had applied they just had the elections for Governor so all jobs where put on hold. I was upset, I knew I'd never get the help I needed. I was so desperate. One day in April of 2003 we got a letter. It was a letter for a job interview for the state job. I just knew when it came that it was an ANSWER. That God had come to help me because I wanted help. Kenneth got the job. By this time things really had got worse. I would not go out of the house. I could not walk any long distances. I didn't want to see people, even family for fear of rejection or ridicule. In May of 2003 I started the Atkins diet, my parents and family were getting very concerned about me. I was concerned too, I was now 599 pounds, I was now down to not going anywhere except to the bathroom, sleep and sit on the couch all day. I was totally dedicated to the diet. I went 2 months. I lost a total of 50 pounds I was so happy, then all of a sudden the diet didn't change, nothing changed. I was not losing, instead was gaining back. I didn't know what was wrong, I was so upset. By this time our insurance had started so I went to our primary doctor. She ordered a blood test. The results came back that I had hypothyroidism. She said that was why my weight was not being consistent and she said not until I get my thyroid under control will I be able to lose weight and keep it off. It was like my body was working against me. I felt almost a relief because I started to realize maybe I had not done all this to my self. I had blamed my self for my weight gain all these months, but it still didn't make sense about my mobility. Something was clearly wrong with my legs. It was about this time I decided again to look back into the gastric bypass. I felt it was my only hope to live. It was August 2003 I went back to my PCP and said there is something wrong with my legs, they are heavy and tight. She said, "Oh it's edema, let me prescribe some Lasix." I was happy because the first few times my legs felt better after taking the pills. As months went by something was still not right. I questioned them again about it and they upped my diuretics more. I was still looking into the gastric bypass. In November 2003 I decided I wanted to go to a support meeting for surgery. We drove all the way to Atlanta. The meeting went great. This lady (Teresa) that was one of the speakers came up to me afterwards and said, "You must have lymphedema, I do too" I was like lympha what? I told her I had no idea what that was, so she started explaining how she had the gastric bypass and suddenly started gaining weight. They found out that she had lymphedema. She said she got into therapy and it did wonders for her. Well, I went home and she had given me some websites, but I just brushed them aside. A couple of weeks past and I thought, well I guess I'll look into this. So I did a web search. I found several picture, but nothing like my legs. Finally one day I got a hold of a site with a lady that weighed 400+ pounds. Her legs looked a lot like mine. I was in shock. So I did more and more studying. I finally came to my own conclusion I had this. It's actually VERY common for a person to self diagnosis this. I went back to my PCP in the beginning of December and asked her about it. She didn't know much about Lymphedema and basically dismissed it. I then got to talking with the main PCP there and he said something about elephantiasis. Again nothing was mentioned about treatment. I had even asked, but they acted like this was NO BIG DEAL. I felt like they were saying you are FAT deal with it. I went home upset and crying. I didn't know what else to do. So I thought about it a couple of days and said NO I am going back they ARE going to get me help. Finally my PCP explained the problem. She could not refer me because the therapist I needed to see was not at a hospital that she could refer to, so she suggested my cardiologist write the referral. That day I came home and we called his office. No one ever called back, it was during the Christmas holiday. The first of 2004 got here and I got a referral in the mail from him. I was so thrilled. FINALLY someone was going to help me. I took it to my PCP for the authorization and she didn't think it was going to work. A couple of days later I finally got a call for an appointment to see this therapist. My first meeting was great, she is very warm and friendly. She knows her stuff and really relates to the patient. She got some of her training in Germany. I start 2-17-2004. She took measurement so I will keep you all up to date on how therapy helps me. This is where I am now, it's been a hard long road, but for those going thru this DO NOT GIVE UP. This is your body and your life. NO ONE ELSE WILL BE YOUR ADVOCATE EXCEPT YOU! This is my story. My most recent updates are at the bottom of this page.
This was the first day that I met my therapist. She is very friendly. The very first visit she basically tells you what all the therapy consist of and what will be expected of you. In order for treatment to work the patient also has to be active in wanting to help them self. She took pictures and measurements. She made me feel very at ease. In my case they have an area in the physical therapy department just for LE patients. It's actually a room in the department. So you are in not front of people. She was very educated about this and I could tell because thankfully I had read a lot about this prior to this visit. She was happy that I knew as much as I did. It's always good to do as much research as you can before going that way you kind of know it something is not right. She also checked for cellutis, they will not start treatment if you have an infection. This whole process took about 2 hours. In my case I will have to pay for the bandages which can be between $50-250. She was very nice saying that payment can be made. I want therapy so bad I'm willing to pay. I was told Primary Stage 3 LE.
|Pictures before treatment|
Tuesday I started my therapy for lymphedema. This therapy is not like what most of you would think, it's quite different. It consist of 2 hours a day everyday. You lay in hospital type bed and the therapist does like a gentle type massage on the lymphs. Right now she is focusing on the upper body to get the lymph system moving. When I started therapy yesterday, I have to be honest I was like yeah right, this is not going to work. She even told me that most people's reaction is yeah I'm sure this is going to work. In most cases the therapy starts showing major differences within the first 2 days. So I got thru yesterday and came home. As the night went on I noticed my bandage was starting to slip. When I went to bed last night as I was getting in it was falling off like a over sized stretched out sock. So Kenneth said we may as well take it off it's falling off. When he took it off he gasped. I said what. He said your leg, it's so much smaller, I can see your ankle. So I sat up and I could not believe it. We had to take a picture. This morning came and my leg was still down, I was surprised being the bandage was not on. I went to the bathroom as usual and as I was standing in front of the mirror, I thought something's different... I was standing more straight, then I thought my goodness I don't have the pain in my ankle and I'm not holding on to the walls like I normally do. I walked back to the bedroom and said Kenneth "I CAN WALK" I started to cry cause this has been very hard on me. Granted I can't walk far still but the pain from walking was gone. I can't wait to see what the full effects of this therapy is going to be. I've known several people that have lost a good bit of weight from this and I can already tell I've lost in my legs. It's truly a miracle.
Just a side not here: I've thought long and hard about posting my pictures of my legs. It's not something I've been comfortable to do, but I want to because in doing my research on lymphedema so many morbidly obese have this (very common) and it's misdiagnosed as simple edema. There is help for it and I wanted to spread awareness to those they may be having abnormal swelling in the leg, legs, thighs, and even the abdomen. So I'm sharing my pictures.
|After day one treatment|
|Right leg with Bandage|
|Before legs and after 1st day|
My ankle did swell up again over night, the bandage came off. We started the treatment again today. It still amazes me, I can now tell a difference in other areas too. My abdomen is smaller feeling and also my thigh.
|You can see where the thigh is smaller looking here on the left.|
Today treatment went well. Yes therapy is everyday 2 hours a day except the weekends. I wished I had my camera with my today, it was very dramatic. I came home and around my ankle area the bandage had some slipping and my therapist tried some foam to help compress that area. It was bothering me, she said if it starts to dig in like it was to take it off, so I have it on my calf area still, but not the ankle. Walking is getting a lot easier. I can't believe this works like it does. I've not had a very good day. My husband ended up last night rewrapping my leg. The bandage completely came off. I was upset because I'm afraid of it coming back and sure don't want to feel this was a waste. I want the best results possible.
Well Celeste my therapist did some measurements today. She was not very happy with the measurement so she took some pictures. You could clearly see some very good results. I was happy but then again still upset that my ankle had swelled back up. I've also been having wheezing, which you have to be VERY careful of. It can over load your body. She wrapped me up for the weekend, I just hope it will stay if not we will have to rewrap them over the weekend. Celeste reassured me that it's because we have not found that perfect wrap and that's why, but once we do I think things will be even better.
Last night my bandage kept slipping, so finally it was bothering my heel. Kenneth said he would rewrap it. When he took it off it's just such a shock to see it like this. I could see the top of my ankle and also veins that I have not seen in a long time. I had also walked from the living room to the bedroom and I could walk straighter. I hate when the bandage comes off, If you don't hurry up and get it rewrapped it seems to want to come back quickly. I also don't know how to explain this to anyone, but I can feel a difference in my body all over, Area that where tight are now loose, my stomach, thighs, butt, hips, arms. It's just amazing me. I don't know if I've lost any weight, but I sure feel different. The wheezing has really backed off. I'm so happy about that. I just hope the lymphs are still open and working.
UNBELIEVABLE DAY 6
Last Tuesday I started treatment for my legs. It's not what most people would think treatment would consist of for therapy on your legs. It's really not physical therapy, it's more of a message type therapy to get your lymph system working. This has been the most amazing thing I've ever had happen to me. I have lost inches all over, my abdomen is smaller, my hips, my butt, my thighs, my arms, my chin even, rings that where tight are now falling off. I can literally feel the difference all over my body. The most unbelieveable was when I did this side by side today, it's just been 6 days! I have atleast 2 weeks still to go. I can't even begin to imagine what my legs will look like then. My therapist has not even started on the left leg yet. The first time in a LONG time my legs are starting to come together instead of in a V position. I feel taller. I thank God for this therapy.
MORE UNBELIEVABLE DAY 7
Got to therapy today and my bandage had not slipped all night. I have happy about that. I hate when it falls off. Kenneth has to help me rewrap when it happens. Celeste my therapist took my bandage off and boy we where all shocked. Everytime I take a look at my leg I can't believe it's mine. I wanted to cry tears of joy. She was debating on wrapping my other leg to get it down. Then she thought about doing it all the way up the leg. I told her I didn't know if I could get around good enough like that. So then she talked about wanting to wrap my left leg, but I told her my concerns about that. I'm afraid the right one will start coming back up. Then we got to talking about compression hose. She got an idea. She went and got something call tubihose, I believe that was the name anyhow. She said she was going to put that on my right leg to keep it down. I was like that is NEVER going to fit. I haven't had anything on my legs sock wise past ankle for over 2 years. She went to stretching it on and IT FIT! I was so excited. So she wrapped my left leg today. I'm still having to get use to my leg being so small on the right. I over step now. It's so funny. I have to say I can't believe still how well this works.
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Yesterday on day 8 I didn't see much of a difference. I wanted to wait and post when I could see a difference. I can not believe my other leg had continued to stay down. I'm just wearing like a compression sock on it. I was so afraid that it was not going to work. Today I could start to see a difference it was actually day 3 before there was a change in the first leg. I'm hoping tomorrow will be even better!
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|Here I am getting my legs unwrapped with my therapist Celeste. You can see all the layers of cotton and bandages|
Things have been going pretty good, but the bandages are being a pain some days. They start slipping down and then they have to be rewrapped. That is the pain! My therapist has come to the conclusion that before we can work on my thigh area we need to order compression hose. She did the measuring today and will do it again tomorrow. The problem is that it can take 3-4 weeks to get my hose. They have to be custom made. I will then be coming in only 2-3 times a week. Until the hose comes in and then she wants to work on my thighs to wrap them next. I can't wait to work on them. Today I was pretty short of breath so I've taken some Lasix to help out.
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|I HAVE LOST 65 pounds, that's right 65 pounds!!!
I can not believe it. When I went on Feb 16th to meet my surgeon, they weighed me in at 615 pounds. Today I went to my mother in laws. She has a scale that I have used a lot, it's an old scale for farm animals. LOL Anyway I get on the scale, Kenneth put the 500 weight on and then moved the weight adjuster all the way over to where it was 599. I stood on the scale and nothing happened. So I told Kenneth, you need to add the other 100 and he said no wait. So he started sliding it over and then said there, it's balanced. I looked down and it was balanced so I got off the scale and we looked at it. 550!! I could NOT believe it. I've seen people lose weight from this therapy, but I can't believe this. I have lost 65 pounds in 20 days. I can walk better, move better. This has been a miracle, thank you Lord!
|I had some requests to share my before and after pictures from the weight loss. This is from therapy for lymphedema. I wanted to add that new picture is with pants I could not fit in. They now are fitting. They are still tight in some areas (thigh). I have not worn these pants for over 2 years now. They would only not fit just because of my legs being to large. I cried tears of joy when they fit today. This is just the beginning. I can't wait for the weight loss surgery!|
It's been 27 days since I started therapy for my lymphedema. It's been an amazing experience. I just got my compression hose in and now I'm not having to get my legs wrapped. My therapist just started to wrap my thigh area. That was fun having to do with the knee area too. I'm been so happy with the results. I've been able to walk farther and also I got shoes on for the first time in 3 years.
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|Copyright © 2004-2010 Amy L H Williams All rights reserved|
All of last week I've been thinking hard about my therapy. We ended up wrapping my one thigh and it didn't go very well. It only stayed on about 4 hours because of the slipping. Then last week Celeste my therapist was on vaction or I didn't get much wrapping done. The plan was to wrap my thigh, but here lays the problem. Once after doing the wraps I have to then go to compression. The compression for the thigh area we determined was going to be done by using like a capri type pant that would also be good for the abdomen and the butt area. The concern that I had was 1] I'm fixing to have surgery which will make it hard to wear the pants in the abdomen area (we are talking tight pants) 2] The pants are going to cost so much to only have to get new ones VERY soon and I will be going thru the sizes so quickly from the weight loss. After talking with Celeste today we came to the conclusion to just maintain my calf area for now and wait until after surgery for the thigh area.
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I wanted to stress the importance of doing therapy on your self. If you don't do it everyday you will pay for it. It's very hard for me to do the therapy to myself so I rely a lot on my husband. Sometimes he's so tired so I don't want to bother him. I went a couple of days without doing it. You really start to pay the price. If you don't do therapy or don't wear your compression hose you are in for a rude awakening. I spoke by email to Celeste today. She and I are still going to be in a magazine this summer on the treatment for Lymphedema. It's going to be in the obestiyhelp.com's magazine. I'm happy to do it to help educated people. We just got all that sent off. I'm insurance has been playing with me about approval for the gastric bypass. I think now it's going to start going fast with approval. The biggest worry I have ever day is that my legs will go back to what they where. I keep a VERY close eye on them. I've also noticed that if I keep my legs down for an hour they start swelling. About once a week now I am still having to take lasix. If I don't my legs seem to get some hardness back to them instead of the jello feel. I've thought long and hard again about going to see Celeste again. I have to be careful doing that cause I'm limited with insurance as to the days I can get therapy. I really have been looking into the reid's sleeve. At night It's impossible to wrap my legs my self, this would give me the ability to have something on it at night and could be used during the day. It's very neat. You can look at how the reid sleeve works at http://www.lymphedema.com/
You can put it on your self and then pump it up. My therapist had recommended it to me, but I was worried with the rapid weight loss from surgery might make it to where I can't wear it. It can accomidate up to 6" difference and they will resize it for free in the first year. So I'm thinking about going ahead and doing it. Celeste told me they would run about $3700.00 and insurance should pay it. I'm going to see her next week for another evaluation of my legs and talk about getting them. So anyway back to what I wanted to say... Make sure to keep close tabs on your legs and the swelling, it's better to get ahold of the problem now and not wait.
Something really sad happened today. Back when I was looking into lymphedema therapy and getting help, I had come across a website of a man who was severely suffering from LE. He's name was Jeff Dorton. Many years doctors didn't know that he had LE, it was left untreated and eventually got worse. I was sad to find out today that Jeff passed away on April 30, 2004. I'm quite upset because this could have been prevented had someone KNOWN about this disease. This in it's self gives me even more reason to educate people about it and also when I am better health wise to fight to get this treatment covered by Medicare. Currently (in some states) they don't cover bandages and sometimes even compression hose, and even some insurance won't. Not to meantion the MANY doctors that don't know ANYTHING about this disease. There is far more education out there about Secondary LE than Primary which I also have. I have made it my goal to get this disease reconized some how. It's such a shame that someone lost their life because of doctors not being educated. No one should have to suffer with this disease.
|Jeffrey S. Dorton
DELTONA - Jeffrey S. Dorton, 41, of North Firwood Drive, died April 30, 2004,
at Rosewood Health and Rehabilitation in Orlando.
Mr. Dorton was a web designer. Born in Scranton, Pa.,
he moved to this area in 1997 from Sanford.
He had an Associate of Arts in mechanical drafting and design
and an Associate of Arts in machine trades.
Mr. Dorton was Lutheran, and enjoyed computers and reading.
He was a past webmaster of the Lymphedema Awareness Foundation at www.elymphnotes.com. The Lymphedema Awareness Foundation will be launching the
Dorton Directory of Lymphatic Resources in his honor this summer.
Mr. Dorton is survived by his brother, Timothy of Deltona,
and his sister-in-law, Penny Dorton of Deltona, who provided his care.
Memorial donations may be made to the Lymphedema Awareness Foundation,
172 Lakeside Circle, Sanford FL 32773. Altman-Long was in charge.
I got to see my Lymphedema therapist today. I had not seen her in almost 2 months. She was so happy about everything with my legs. She said that they have been very well maintained. I was feeling they haven't been. I did have a slight weight gain. Which I'm not happy about, but she said that would improve after my weight loss surgery and my legs should be much more manageable. I'm thrilled about my legs staying pretty much the same in a two month period. It's very hard to do the therapy on yourself every day, but if stop doing what you need to do it shows.
|Here is me and Celeste, my therapist|
It's been 9 days now since I've had weight loss surgery, I just wanted to update and let everyone know what I'm doing great. I can already see a difference in my legs because of some weight loss. I will keep you posted on how my legs do with the weight loss.
It's been 18 days now since surgery and I've now lost 45 pounds which puts me at 525 pounds. I can feel that difference in my legs. They feel even lighter than before. It's really amazing how the weight loss is helping them even more. They feel even more flabby and the skin is hanging more. I don't doubt that I won't need some type of lower body lift once I've lost the majority of my weight. That's not in the future anytime soon, but will probably be the way I have to go.
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|Preop Pictures of legs|
|Postop Picture of legs|
I'm still in the hospital and have no date of release yet.
Friday I had taken a nap when I woke up at 4pm I had something to eat, it was something I've eaten several times. Almost an hour later my meal was still not sitting right and almost felt like I was not digesting it right or something. Next thing I knew is I threw up...UGH! Around 7pm Kenneth called me from work I still felt weird. Right after I got of the phone I started to get very cold, I put on a robe and blanket, I could not stop shaking, my teeth were chattering. I went to lay in our bed and cover up, this AWFUL chill wouldn't stop, my legs where shaking really bad. I ended up calling Kenneth back. I told him I need him to get home and what was happening. He tried leaving as fast as he could and told me to call the ambulance if things get worse. I got off the phone and called my mom, she's a nurse. I told her what was happening and by this time my nails where blue, my feet were freezing. I stayed on the phone for a little while and the shaking backed down. It was almost like having convultions. My mom said you have to call the ambulance. I was fixing to get off the phone to do that, suddenly I needed to go to the bathroom. I told my mom now my left leg is hurting, the first thing that came to mind was BLOOD CLOT. I went back to the bedroom, Kenneth had just walked in the door, He said what is wrong with your leg? I looked down it was BRIGHT red and major pain just suddenly set in. I knew right away what this was from the Lymphedema message boards I'm on. I said Please called Doxie before we leave, he didn't get her so I told him try Christine. I was in so much pain and just needed prayer. (Which I greatly appreciate from all of you, Bless you all) Kenneth was wiping my leg with a cold cloth and steam was literally coming off. We got to the ER and I told them at the desk I have Lymphedema and I know what I have is cellulitis. Lady looked at me weird. I said look and her eyes were huge when she saw just how red my leg was. They rushed me in before everyone else. Once back there unforunately they knew NOTHING about lymphedema, but thankfully did know it was cellulitis. They started an IV. Finally after about 4 hours in the ER triage area they moved me to a room. They drew on my leg to see if it was spreading. It was all like a whirlwind after that. Because of the strength of one of the antibotics I was constantly throwing up, I was freaking out that I had a striture. This antibotic is so strong my veins kept collapsing. After 5 IVs and almost 20 sticks later they said well we are going to have to try a PICC line. The doctor then came back and decided not to do it. I'd now been off ANY meds for almost 24 hours! I was getting highly upset. After fighting with the doctors they said we are going to put you on oral meds. (HUGE PILLS) I said fine, I just want this better. During all of this we had several other events, it took them 3 days to move me to a different room. The air was acting up in the old one and the bed was NOT made for my weight so I'm bottoming out nothing like a concrete bed! LOL.... other than that I'm alive and because I was throwing everything up for 2 days I have now become dehydrated. I don't know what tomorrow is going to hold. I feel much better, but my legs is still red and painful. They are growing cultures to see what type infrection this is I should know tomorrow. The cellulitis is a direct effect of my lymphedema. Sorry to make this so long.
One side note... A lady on another site wrote something depressing. I had wrote back to her. Anyhow my surgeon is also at the hospital I'm at now, so I had requested them to let him know I was admitted. He ended up coming to visit me I had an appointment today to see him anyhow. He came up to see me and he said OH you know that lady from India. I knew exactly what he was talking about, he said she emailed. I said Wow she did? He said you know that I do third world mission work, I said right. He said I think she really needs this surgery. I think I'm going to make a trip to see if I can help her. I wanted to cry. When I think about that it makes me very emotional, this lady had no hope and now she might. I know most of us love our surgeons, but I swear this man is certainly a God send.
I hope to be out and about soon.
Well, I ended up gettting released yesterday. They said my legs looks like it's taking well to the oral antibotics and the insurance would wonder and may not pay because I'm actually in the hospital just taking meds that I could take at home. So they gave us and option, of course we are NOT going to pay out of pocket so I opted to go home. Before we left a couple of interesting things happened. First a long time friend of mine called. She lived across from me for years. Infact where we live now in my parents house her parents are still there. Anyhow the night before Kenneth had told her parents that I was in the hospital and to please watch the house while we where away. They said no problem doing that. So today Amy my old time friend ended up calling the hospital and spoke to Kenneth. I was asleep and the next thing I know is Kenneth said Amy's on her way. Amy and I were very close growing up, but over the years she's had two children and been busy. Which is understandable, life does move on. The last time I had seen Amy was over a year ago. I didn't know how I was going to start to tell her everything! LOL So she arrive and right when she did, this professor came by and was asking me if I would allow him to show and talk about my lymphedema to his med students. I hated to do that with Amy there, but she seemed ok and asked me if I would be ok with her in here. I thought well this would be a good way for her to know what's been going on too. So she stayed and in poured this class of about 25 people all around my bed. It was a good 15-20 minute lecture over my bed. I was happy because he touched so much on lymphedema. They all really seemed to understand it a lot better. It was nice to be able to help educate this upcoming doctors. I felt good about doing it. Hopefully when they get into the field they will remember and help someone else who has this awful disease. I was able to talk and I told them how long I had gone misdiagnosed. It's not any easy thing to put your self on the line to show people your personal things, but again it's all about education. After they left Kenneth had meantioned my website and also told them about being on MTV again this Thursday. A lot of them wrote it down. After the students finally left Amy was like wow you've been thru a lot. I was so happy for her because she too had done something about her weight, last time I saw her she was nearly 300 pounds and she told me she's lost 80, she showed us some pictures. I'm very happy for her. She seemed so much more happier with the loss. You could tell.
After a while Amy left and then the doctors came in to tell us they would be doing the release paperwork and should be about an hour or 2. I was upset cause I had wanted to weigh, so I asked if they had a scale near by. She said she'd look into it. A coupld of minutes later they wheeled this cute little scale in there. I was so happy, I knew though before I even got on there that it was NOT going to be much because my leg swelling is back in the left leg like it was BEFORE I even started my LE treatment, plus with all the added IV fluids I had been getting. So I got on it and was down to 504. That's a little depressioning, but I know it's my leg's weight throwing it off. I must have atleast 20-30 pounds added just in this leg. I tried not to get discouraged. Hopefully by next week when I go see the PCP again my leg will be back down. Wish I'd been able to weigh before all this swelling happened.
By the time we got home I was so tired so I slept and slept. I ended up having to take a percoset last night because the pain was very intense, it worked wonders and helped me to sleep good. The redness seems to have gone down, but the pain level is about a 9. Kenneth is going to have to get a refill on percoset tonight. I only had one dose I brought home incase. I hated to buy them and not use them, but I need pain relief.
|You can see the redness from my leg still and see how tight it is with the shine on the bottom of my leg. You can clearly see the difference in the two legs. This redness was all the way up the knee. This is very painful. The other leg that's not infected the skin is very loose.|
My leg is completely healed now from the infection. I'm so happy that it's gone. All the pain is even gone. I had never before getting the cellulitis had much of any pain associated with the lymphedema. I have a lot of dry skin from my leg being put up for all these weeks, but the difference it's already showing is great. I'm starting to be able to tell that I've lost weight again. It's very hard to tell when you leg feels so heavy from the infection and everything else You can clearly see in the picture the left leg that was infected is quite larger than the other one right now. You can still slighly see where the rash was on my thighs. It looks a lot better than the above picture with the infection is all I can say.
I haven't updated my pictures of my legs in some time so I thought I would do that. I've now lost 213 pounds from having the gastric bypass surgery. It's greatly improved my legs to have this additional weight off. It's nice that my legs are staying pretty well maintained with the additional weight loss. I've gotten to the point that I need to get some new hose. The others don't have the tightness that it did so I'm not getting the full compression that I do need. I also still need to go back about my thighs, but will probably wait a little bit longer to see how things go with the weight loss and then try to have them done. I will need compression for that area too. I took some pictures recently. It's nice to know that with pants on you really can't tell I have lymphedema anymore. My leg almost look normal, however without pants you can clearly see I have this condition still and see the damage that had been caused as a result of this disease.
|After (6months since weight loss surgery)|
|Click Picture to View Larger Image|
It's now been 13 months since I've had surgery. My legs are much better, but I still have swelling if I keep them down for long periods of time. I keep my compression hose on as much as possible and that keeps them more manageable also. I know that because of my weight loss surgery it's what made my legs improve so much more.
|Click Picture to View Larger Image|
|Important: Call to Action for Lymphedema|
|Medicare/Medicaid is now NOT going to cover the treatments for Lymphedema. I'm living proof that with the proper therapy, a certified LE therapist, compression garments that LE can be managed. Please sign this petition to help those in need of this valuable treatment. I can't stress the importance of this to be overturned so many thousands can continue to get the proper treatments and have them available.
WE SHOULD NOT HAVE TO SUFFER FROM THIS!
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It's now been 22 months weight loss surgery. My legs are doing pretty good, but it's very hard to keep them maintained unless I keep them up most of the day. I went out to California and the flight didn't seem to bother them too much. The main problem was having them down all day, by the time I got back home I had gained about 15 pounds, all in the legs. It took about 1 week to get them back to being soft. This was even after I had worn my compression hose and I did the message while in Ca. I'm just blessed I've got a job in which I can get my legs up. Other wise it would be a real struggle all the time. I've got all this loose skin now and I'm not exactly sure what I want to do about it just let. Any type of plastic surgery could VERY possibly make things so much worse for them. I'm still thinking about it, but it would have to be an expert to do the surgery. Here are some current photos along with some photos to show all the loose skin.
|Click Picture to View Larger Image|
It's now been over 3 years since my weight loss surgery. I've been asked to update about my legs for sometime. I went for a follow up with my therapist this past week. I'm still maintaining my weight loss and my legs are so much better. If they are not elevated they do start to swell on me. I've asked my therapist to please meansure to get a pair of reid sleeves when the swelling starts up. For the most part I only get swelling when they are down for long periods of time. Anytime I go on an extended trip they will start swelling. I've got some before and after photos of my therapist and me. I'm thankful everyday for my therapist and WLS.
It has now been about 2 months since I got my Reid Sleeves. I'm extremely happy with how they work. It is so much better than having to wrap my legs when they start to get bad. Sometimes when my legs are down for periods of days I need the wrapping to help them go back down, but as most people know the wrapping becomes hard and you'd rather not fool with it. This has been a great thing to do instead. I was kind of leary about how it might all work out. I don't wear them all the time to bed, but the days my legs have been down for several hours I'll put them on. I was lucky my insurance paid 100% for them. They cost a few thousand dollars for a pair. For more information you can visit this site. Information about Reid Sleeves
I'm very excited because this year I'm attending a conference about lymphedema. It will be this weekend in Atlanta. It is put on by the LightHouse Lymphedema Network. They are going to have a class just about lymphedema and obesity. So I'm excited to hear what they have to say and learn new things about it. This is one of my passions to help educate others on this condition. The medical professionals need to have more education. There are so many who are still suffering needlessly because of lack of education being given. It's very sad.
MTV just did a follow up show on me over the weekend. You can see the original show by following the links below. I'll get some photos up soon with my Reid Sleeves on.
MTV True Life "I'm Obese"
MTV True Life "This is Me Now"
|Statement from Amy:
My site was designed to share my experience with lymphedema and show others what outcome I have had with this condition. The information on my site is not medical advice. Just simply my story and my struggles. I have added to my site a resources page and Lymphedema Awareness page that will be able to guide you to information from organizations that can help and professionals that are certified in this field. Please reference these sites for medical information. I am always willing to give my support and answer questions pertaining to my personal experience. Contact me anytime. Email
My most recent updates are located at the bottom of this page or found on my blog
|This is my story|
|10-5 to 7-2007
Over the weekend I met some people who have saved my life in so many ways at the LightHouse Lymphedema Network conference in Atlanta. Pat O'Connor many years ago started a wedsite called www.lymphedemapeople.com and I had joined a yahoo group when I was first looking for information about lymhphedema and he was one of the first to respond to me and help me get help. I am thankful to him. I had the pleasure of getting a photo with him. Pat has been suffering with lymphedema for many years, they have traced it back in his family since 1890. You can read more about Pat on his site.
|Then there is Joan White, the founder of LightHouse Lymphedema Network who organized the event weekend. She has an amazing drive and has really been key in spreading the word about lympyhedema to the professionals and getting those suffering from LE the support they need.
Probably the most emotional part of this weekend was a class I attended. It was an open forum to talk with Dr. Paula Stewart & Kathleen Frances. I had asked a question during the forum about plastic surgery and lymphedema. During the meeting I kept looking around the room, this lady behind me looked familiar, but I couldn't place where I had known her. So low and behold after the meeting she came up to me and said you had a question about plastic surgery and I said yes, she told me she had some done on her arm. I said oh I've had that done and also the tummy tuck from all the weight I've lost. So somehow we got on the subject of surgery. She told me she had weight loss surgery too. Then I said. What is your name. I looked down at her name tag. It was Teresa!! Anyone who has read my story in the OH Magazine knows the part I talk of about finding out about lymphedema. It was a lady at a support group for weight loss surgery who told I must have it and how to look up more information about it. I got tears in my eyes and she looked at me weird. I said.... Do you know you probably saved my life. She said... HUH? Your surgeon saves your life. I said I know, but do you know who I am? She was so lost. So I got my photo book out from when I was in a wheelchair, that was when I saw her 4 years ago! She said. OH MY GOSH. That is YOU. I remember you. I cannot believe it. I told her that she is the reason I searched out lymphedema, she is the reason I figured out what I had. It was a moment I'll never forget and I'm so upset I wasn't able to catch her to get a photo before she left. However, I have her information from the sheet they passed out to be able to contact attendees.
I then attended a meeting about lymphedema and obesity. I talked with so many professionals this weekend who have told me the rise of patients who are obese that have lymphedema is a large portion. They are not all super obese like I was, but they are seeing more and more. There appears to be a link there, but no studies have been done as of yet. They really need more information about this. In fact the message from this weekend is clear. The word about lymphedema is not getting out enough still. So many people are suffering without any knowledge of the condition and medical professionals especially. If you are obese they are telling them they have edema or that they are "fat". I heard so many stories about people who have been misdiagnosed. I saw people like I once was in wheelchairs, immobile from this condition. I reached out to each one of them with my story, just letting them know they are not alone and can do this! It is so real and I wish I could help them all. My next plans are to continue to attend any meetings I can about lymphedema in the future. They have the large meeting in San Diego next year. I am going to see what I can do to make that meeting. I really want to attend it. Registration alone is $500! Plus the flight out and hotel, but this really is a mission for me to help others and learn ways to advocate to the government the need to cover treatments/bandages/compression hose for thse with Medicare/Medicaid. The treatments are often cut off for people because of the clause in their plan for "physical therapy" and also the bandages are classified as durable medical supplies even though they are a MUST in having the wrapping done. It is such a sad situation.
I went away with a re-newed spirit that I must continue to educate others about lymphedema and support others suffering from it. My journey is far from being over.