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Lymphland International Lymphedema Online
| Meet the Members and Managers of Lymphland. I'm Tina, the owner. I'll be 45 this year, cancer survivor for 15 years, lymphedema for 12 years. I'm the content editor of ELymphNotes lymphedema magazine, ask-the-expert panelist for lymphedema, Owner of this site and Lymphland International Lymphedema Online support group via yahoo groups, and patient advocate. I love animals of all kinds and own 5 cats who are all siblings. I collect wind chimes, holiday trees and ornaments and I have a tree up for every holiday of the year with matching ornaments. Lighted trees brighten our world. I also collect angel items, holiday ornaments, and I absolutely love butterflies and butterfly items. I love to cook, garden, learn new things, create pages in my scrapbooks, anything relating to dance and dancing, classical music actually all music but especially classical and jazz, poetry, and I'm a major movie buff, I love sci fi, biographies, and comedy. I am disabled but am my parents caretaker. I became frustrated when I had swelling and nobody was able to tell me why. I finally found a surgeon who diagnosed me and when I went to research lymphedema in books, there was nothing. At work I found my time on breaks on the computer and saw Jeff Dorton's story. I was horrified at what happened to him. I drifted away from the lymphedema topic for about 5 years concentrating on working 2 jobs. I got so sick and my body was giving out so I wound up cutting down to 1.5, then 1, then just part time then I was advised by my doctor to stop working. I was devastated and found myself back online looking around. By that time, Jeff Dorton had died. I felt so awful, we were the same age and it was then I realized my calling was to help people not end up like Jeff. I began seeing lymphedema surfacing on the net and decided to start my own site and here I am! My story: Tina’s Story Ok, my story. I developed cancer in 1994 and had surgery that Oct, actually on the 17th which is breast cancer awareness day and became NYS lymphedema day. I developed lymphedema in 1997; actually I think it started in 1996 as I had problems. Anyhow, my friend Kat also had cancer back in 1994, she was ok until it re-occurred in 1998 and she had a mastectomy and wound up in 1999 or 2000 getting le just like mine. She had several re-occurrences and died in 2001. She died from cellulitis that went septic primary cause, cancer secondary. I went to my doctor at the time that blew me off and said lose weight! I can't remember exactly when I had jaw surgery but it was around 96-97 too and at that time my face, neck was swelling too along with the rest. It was pretty bad. I actually did diet a lot and couldn't understand why I was so swollen, and then I started getting pain. I kept looking in medical books trying to figure what happened, my surgeon at the time mentioned Milroy’s. I worked at Lockport Savings Bank at the time and we got computers so on my breaks I would either go to the library almost next door and look in medical books or look online. The first thing I found was Jeff Dorton's story and that floored me. The pictures of his infections blew me away, I thought "No way I don't have that" and then I let it go for awhile until I got cellulltis, then I had another term to work with. I got online, found a lot changed and got into a support group I can't recall which I joined first, I think it was ACOR. Then I joined lymphlistletter. The lady at the time on that was sick and just handed me the group. I didn't know what to do with it. I kept it but made lebuddies. I thought it was dumb to have 2 groups so then we merged into lymphland. I also joined a few other groups, met people and realized I wanted more than just a group; I wanted info out there, charts, pictures, and a place to chat with others so Lymphland the website was born. I used a free site at first, it went out of business, and I kept going for free ones because I didn't have a lot of money, I was going for disability at the time and it was a hard 3 years wait. I used all my savings, charged credit cards up to live, then wound up on public assistance the 3rd year until I was approved. But, after hard work over and over with sites going out of business, I said SCREW THIS, and paid for Lymphland.com because I was sick of redoing the sites over and over. Our members invited friends, family, etc and we grew. We started in 2005 and area close to 600 members today. I wanted the group to be able to share not only lymphedema but our lives and more. I didn't want to be 120% focused on just lymphedema. Lymphedema does control us in some ways but we can control the other parts of us and we have to stick together. I still believe that together we can make a difference but with all our health issues its' hard. It wears on you, you don't feel good, and you don't want to do things, that's where we are in trouble with legislation and change. People have trouble being positive and active; they don't see an immediate change and get discouraged. I get discouraged. I have elderly parents, 5 cats, a ton of responsibility, a support group, a website, a very needy friend who needs my help a lot, a jerk brother who takes no responsibility for his actions, high bills, parents high bills and poor health and.... I have lymphedema, hypothyroid, high blood pressure, chronic fatigue syndrome, anemia, fibromyalgia, lupus, TMJ disorder in which my jaw joint is deteriorating, a ton of allergies that started back awhile ago to the point I use an inhaler, and lastly since this July, 3 herniated neck disks from a car accident on July 17th. And I have an ovarian mass that lupron controls. I have been told I need jaw surgery, possible neck surgery, an ovary removed. Do I do them? NO. I don't rush into anything. My first jaw surgery was a disaster so I learned that we need to research before we jump into anything looking for a cure. But at the same time, I believe in trying new things to try to find that cure or what helps us. I believe in alternative medicine as well as conventional medicine. I also believe it's better to be warned and alert about things even if they are hoaxes than to not know anything and wind up in trouble. I also believe in keeping a positive attitude and an open mind. I believe in fairness, and I don't believe in problem solving unless you have a problem, then you look at all angles to fix it. I don't believe the schools should be teaching problem solving, parents should, and actually if you have common sense you can stop a problem before it becomes a big one you have to solve. BUT I do believe also in working my butt off on the good days to try to change things. I don't want to see a child born today or tomorrow to have to suffer what we do. I believe we need to educate doctors, petition for legislation, and try to change the medical schools course of teaching and educating prospective doctors. If I ever won the lottery I would pay my bills, fix my teeth, get good therapy, get a good car, stick a little in the bank for my future, and then I'd give all the rest away to good causes such as le research, pet organizations, cancer organizations, etc. and friends. I would set up a fund for those of us in need, those of us waiting for disability to cover our needs until we get it, and a place where we can always go for help. That's my story. -------------------------------- Evelyn’s Story My name is Evelyn Briscoe and I’m a Lymphedema patient. I have had Lymphedema in my lower extremities since April 2002. On March 6, 2002 I had a radical vulvectomy. The cancer was malignant and lymph nodes were removed from both sides of my groin for biopsy. My Doctor had said before surgery that I might have some swelling in my legs. He did not say the word lymphdema and I didn’t think anymore about it. He had said only that I might have some swelling . I want to say that I had one of the best Oncologist / surgeons there is. He is Dr. Timothy Vanderkwaak at HOPE a cancer center for women in Asheville, N.C. He prayed for me, himself and staff just before going into surgery. I had the utmost confidence in him and had serene peace and said ,me and Jesus are ready, lets get it over The surgery went well, he got all the cancer . He took 19 lymph nodes from my groin area for biopsy as the cancer was malignant and 3.5 center meters. ,and my lymph nodes were OK. No chemo. Now all I had to do was let my body recover from the trauma of surgery. After 20 days the drainage tubes were removed from my groins .I didn’t understand what they were all about , just that they were draining some yukking looking fluid from my legs. I now felt great, cancer free and on the mend. However in about two weeks I awoke to find my legs swollen and red and hot with fever. My temperature was a 101 degrees. I called the Drs. Office and they said to come in now. Then he said I had lymphedema and I said “what is that”. Because I like everybody else that doesn’t have it or know someone who does , had never heard of it. What I was told is that it was permanent and I was sent to a lymphedema specialist therapist and did I ever get educated about lymphedema. I went 3 times a week for 4 months, I had a manual massage to try to get the fluid moving and reroute it to where it was supposed to go as it could no longer go the way it was supposed to. My legs were then oiled and wrapped first, after protective socks, with a layer of cotton,, followed by a sheet of foam and then special ace bandages and then a net covering to keep it all in place. By this time I looked like Miss Mummy and could not put on any shoes. I waddled out to my car with smurf shoes, ( the kind surgeons and staff wear during surgery),on to keep the bandages from getting dirty. I bought the special shoes that people with a broke foot some times wear and promptly fell flat on my face and could not get up. Took two men to stand me up like a plank. I have a artificial knee That doesn’t bend properIy, so can not get on my knees. I was too grateful to get up to be embarrassed. I was fitted for compression hose, special made from Germany at a cost of $400 for the pair. They rolled and cut off my circulation and hurt like -----. The next thing was a pressure pump with a leg sleeve that I called my space suit. Had to use it for 1 hour a day to try to move the fluid that I now know that if it didn’t would cause me more problems in other parts of my body. So you do what you gotta do. I found out last year the pump was too harsh and not good for me. Now what was I to do. I unfortunately had surgery 3 more times for same kind of cancer, One more time malignant and twice not. It’s been a little over 6 years . I’m cancer free for now and pray that it stays that way. BUT the lymphedema is for life and must be dealt with daily. After doing therapy again with one of the best ,Samantha Cannon of Gwinnette Rehab Center in Lawrenceville, Ga. and a great new massage machine called Flexi Touch, for it does the same massage as a manual massage, Also a new way to wrap the legs with compression. It’s called a Farrow Wrap, so called after DR, Wade Farrow that designed them.. It is fast to put on and off and can be adjusted as needed. I wouldn’t be without them. Compression garments to a lymphedema sufferer is as essential as insulin is to a diabetic. I joined an on line support group called Lymphland Support Group and now talk with a lot of wonderful people with varying degrees of Lymphedema. They all have my heart and prayers. I feel privileged to know them. .Lymphedema Sufferer, Evelyn Briscoe -------------------------------- Benny’s Story I have lymphedema in both legs and severe osteoarthritis in my left hip. My concern in going to my general practitioner was the fact that I had swollen feet and numbness. He checked it and said to cut down on the salt intake and being summer etc. kind of waved it off. This was about 3 years ago. I knew it was something definitely wrong in the way that I had pain so I told him I wanted to see a specialist. He sent me to one and he told me to take water pills which did no good. So he sent me to an internist which diagnosed me verbally as having lymphedema. She told me that the machines do no good and there’s no cure and I would have to live with it. She told me to get some wraps at the drugstore which I didn't have a clue what they were or how they went on. She dismissed me from seeing her and refused to send me to another specialist. I went back to my doctor to get a vascular specialist. Prior to that I found a massage therapist that specializes in lymphedema and it was through her that I learned how to keep it under control. I don't do any exercise or the drainage because she told me I don't have your typical lymphedema. I did the wrapping and once in a while had her come to the home. Now I'm in compression stockings which the government pays 75 per cent for. My grandmother had very thick legs and she thinks cause of the obesity especially on my abdomen that it caused my legs to swell up and that I must have been born with it. I'm 61 years old and was diagnosed with it in 2007 before that I was active and had a quality of life. ---------------------------- Christine’s Story A month or so ago I was driving to Wal-Mart to get a little shopping done. I hadn't felt up to par over the preceding three or four days. But was feeling fine on this particular day. I had been feeling somewhat dizzy over the past couple of days. I now realize that it was probably (the Dr. concurs) a problem with my Potassium levels due to a short term usage of lasix (I would never use it for prolonged periods of time) due to some extreme lower leg edema. Just as a last ditch effort to get it under control before any cellulitus tried to set in. Anyway, I became dizzy while driving and swerved clear into another lane. A police officer saw what had happened and pulled me over. He thought I was drunk!!! OR on drugs!!! I tried to explain lymphedema to him. I offered to call my fiancé to substantiate what I was saying and come pick up my car and me. Promised not to drive until seeing the Doctor the following week. He didn't believe me. He called an ambulance to check me out. They said that all of my vital signs and blood sugar levels were normal. The ambulance drivers had never heard of LE. Still not believing me...the officer impounded my car, told me I was reckless driving and handcuffed me and took me to jail where they issued me a criminal citation for reckless driving. I have never been in any type of trouble in my life!!!! NEVER. I was terrified. I went to court...it wasn't the regular traffic court that I expected. It was some sort of criminal court. Because I apparently committed a traffic CRIME...not a traffic OFFENSE. The judge was nice and so was the D.A. They suggested I get an attorney and set a new court date. The penalty for my dizziness is me losing my license for 90 days, having a criminal record (at 41 years of age). Not to mention increased insurance rates and what I am certain to be large fines. Is there any expert/moderators on here that could write a letter stating that lasix can cause a rapid decline in edema and cause certain body chemistry to become askew. As soon as I began the Potassium supplement everything was fine. And of course I am not taking the lasix anymore. Only took it for about a week or ten days. I think my doctor (not much of an expert regarding LE in the least) will write some sort of a letter too. However, I think it might be good to bring a second for somebody with more expertise regarding lymphedema. I can't imagine losing my license and being labeled as some sort of a criminal. This has been such a traumatic experience for me and it's not over yet. Thank you in advance for any help you may offer. My next court appearance is in the first part of April. The court appointed attorney is meeting with me only a few days prior to the hearing...which also seems kind of odd. -------- Cindy’s Story My lymphedema is secondary. I can't be certain which surgery might have caused the lymph system damage but my suspicions are when I had a colonectomy 2 years ago. It was kind of an emergency surgery as I was losing a lot of blood because of diverticulitis. The swelling of my legs started shortly after that. I just thought I had edema and the Dr. was giving me Lasix to get rid of the fluid. That actually worked for a while but gradually it didn't help. I just had a spinal fusion on Sept. 2 and my legs swelled up so bad I couldn't even get shoes on and the neurosurgeon that did the back surgery sent me to a vascular surgeon to make sure it wasn't blood clots, etc. He was the one that diagnosed me with "lymphedema" which I had never heard of. Of course the first thing I did was get online and do research and was very upset when I realized it was something I'd be dealing with the rest of my life. I had a second back surgery on October 17 because they thought I had a staph infection. Luckily it was not staph and I am recovering from 2 back surgeries now. The vascular guy set me up with a medical company that brought me out a compression pump but I had been reading up on MLD and insisted that he give me a prescription for the MLD therapy. I have a therapist about 2 miles from me and she is wonderful. This weekend has been a little traumatic because it is the first time I have had to go out in public with the bandages on. The only shoes thus far I have found that I can even get on are some men's backless house shoes from Wal-Mart and I have to use a cane because I don't feel steady on my feet. For some reason the bandages make me feel off balance or maybe it is the shoes. I know there are far worse things out there than this but it is still nice to have some support and I would love to be a pen pal via e mail. One of my main concerns is getting back to work. I work for the Post Office and the Postmaster said that as soon as my surgeon says it is alright I can come in for 4 hrs a day and answer the phone and take messages but with all this wrapping I can't wear a closed toe shoe and with them and OSHA it could be a problem. I still have to email them and see what they say. ------------------------- Dave’s Story Let me begin by saying I have been overweight since about seven years old. I had meningitis age fifteen months and I am only alive today because cortisone was in the experimental stages, at I had not too many other health problems since then until I turned 40. I was an avid bicyclist and walker but I still remained overweight. In fact I didn't even own a car until I was 35. But in late 1998 I took a third shift job and had to drive 40 miles one way to work. Obviously I had to sleep during the day and never really could get motivated to walk or bike again. I also had jobs that were all standing. In 19941 had a job in a paper recycling plant and the jobs involved standing on a concrete floor and not a whole lot of movement. Add to that two times I had fallen off my bike and landed on my knees and repeated injuries to my right foot because the meningitis had caused it to turn outward and you can see I have a pretty good start on what later was diagnosed as lymphedema. In June of 1999 my right leg began to dramatically swell up. After a week of fighting it I finally went to the emergency room under protest. I remember telling a close friend. That it would be like being in prison. But about an hour later I was diagnosed with three blood clots in my right leg. The attending physician assured me that I was in no danger and that if something was going to happen it would have happened by now. While in the hospital they did an experimental procedure where an IV was inserted in my leg and TPA was introduced. After 24 hours it was removed a few days later on July Fourth I went home. Three weeks later I quit the recycling plant job and eventually took a third shift job at a new Wal-Mart store 40 miles away. In January 2000 while trying to determine what was causing my blood pressure to remain elevated I was diagnosed with type two diabetes. For five more years I continued to work full time at various jobs. And then in 2005 one night after coming home from work I stopped at my Bible study group. While there I began to have severe chills. I went home and jumped right into bed and covered up. The next day I was fine and then the next day my right leg was extremely swollen. My Sister took me to the hospital and it was unusually busy that day. After waiting about an hour and fielding questions from others who were waiting I was taken into an exam room. This was my first bout of cellulitis. A vascular surgeon on staff then made a diagnosis of lymphedema. I never had any doctor tell me it was weight related. This vascular surgeon also informed me that on my 1999 hospital visit I was not treated properly or it never would have gotten this bad. I assume he was referring to the IV in my leg. After two weeks I went home and was unable to work for about three months. I was scared because I was in danger of not being able to pay the rent or anything else. I later had to file bankruptcy. Trying to get social services was a nightmare so after returning to work part time I asked my doctor for permission to return to full time work. He okayed it and all was well for another year. Then in 2006 I had an open wound get infected.) fought the doctor (not my regular) on going to the hospital. The thought of all those bills again were intimidating. About three weeks later I developed chills again. I was ambulanced to the hospital. Although I never felt faint my BP was very low. I later learned that the wound had almost gone septic on me. Six and a half weeks and 100 Ib weight loss later I went home. I had gone from the hospital to a local rehabilitation hospital where I received intense therapy. I eventually was approved for disability and still work limited hours. I have been fortunate that the pain part of this disease has been almost nonexistent. I still long to be able to work full time but that will probably never happen. ------------------------- Randy’s Story My visit with PT CMLDT went well today, she said my legs and feet look great and I don’t have any swelling so I will continue with bandaging like I have been doing. It is always good to hear good things from someone that knows and understands. Thanks for asking about “my story of lymphedema” and I hope The following is of use to you and your doctors. My story is fairly simple; I started to have symptoms of lymphedema In December 2006 at the age of 53 but of course knew nothing about Lymphedema or the lymphatic system. At that time, I developed a severe case of cellulitis but did not have a formal diagnosis of primary lymphedema tarda until March 2007 by a hospital vascular surgeon that had worked a lot with this lymphatic disorder so he knew all about it and its symptoms. He used doppler testing to confirm his diagnosis and worked with me on wound care, he specialized in that also. I started infusion therapy at the hospital as an outpatient 7 days a week for 30 days where I had an IV in me at all times, 24/7. I was given 1 gram of Rocephin IV and 6 mg. of morphine sulfate IV each day to control the infection and the tremendous pain as well as oral antibiotics, pain medications and topical antibiotics such as mupirocin. In March 2007 I began seeing a hospital pain management specialist who is board certified in pain management as well as board certified in anesthesiology and I take daily pain medications of morphine sulfate extended release and morphine sulfate immediate release and a topical gabapentin/ketamine /lidocaine PLO gel. My pain levels were so severe that I often required going to the ER where I would be given additional IV pain medications to control my pain. Without the expert help of this pain management specialist I don't know where I would be today, it was one of the best decisions that I made and continues to be. It was unfortunate that I went from December 2006 until March 2007 without an accurate diagnosis and I received not very good care from a doctor that did not understand lymphedema or know where to refer me. Had the proper treatments and medications been given much sooner, it would have made things much better for me. Shortly thereafter I began seeing a hospital physical therapist that was certified in manual lymph drainage therapy and I began the traditional bandaging process to force the lymph from both of my legs and feet up and out since my lymphatic system was not working properly and was congenital since it was primary lymphedema. I have had testing by a vascular surgeon to rule out things such as venous insufficiency or any lurking blood clots so that is very positive to know that I don't have either. I continue to see a group of very carefully picked physicians and therapists including an internist, vascular surgeon, pain management specialist, PT CMLDT, gastroentronologist and a psychiatrist as well as a dermatologist to control my lymphedema. I have been fortunate that all of my swelling in my legs and feet has gone away and my only problem now is pain which also impacts sleeping and also affects anxiety and depression. I have only had one episode of cellulitis which is great and I continue to take very good care of myself with what I have learned and continue with medications and traditional bandaging everyday. Unfortunately, there is no cure for lymphedema.. ..we have to constantly manage it. I also have a secondary diagnosis of neuropathy which adds to the pain and again, there is no cure for neuropathy.. .. only management of it's symptoms. Lymphedema impacts so many parts of your life and changes so many things about you and what you used to enjoy doing. It is a terrible disorder that I would not wish on my worst enemy if I had one, which I don't. I do think that to fully understand what all of us deal with in having one type of lymphedema or another that a person would have to be in our place for 24 hours which of course is impossible. If you have it, you understand it much better of all that is involved. I hope this provides somewhat of a history for you Evelyn and that your doctor might find it useful. If you have any Further questions, please ask....it is difficult to put in every bit of information and have it make sense but these are the basics. I think the only good thing about my having lymphedema is meeting all of you and sharing in your lives and how this disorder affects you. It's too bad that we all couldn't have met in a different way but this is the way that was chosen so here we are. I join everyone with wanting to help others for whatever good may come out of that. I couldn't have met a nicer group of people than I have here and I appreciate each of you and your daily struggles trying to live with this disorder. I hope this isn't as boring to you as it seems to be to me ------------------------------- Jenny's Story "I was born with a condition known as Spina Bifida, which, in a nutshell, means I have no use of my legs nor sensation and am a full time wheelchair user. This is not an entirely bad thing ...... I still have a very full life and am a mom to a wonderful thirteen year old girl! (AND I get all the good parking spaces!:) The level of my paralysis is Li-2, which means that from this point down, I have nothing that works...minimal bladder control too. This also means that I have no active "muscle pump" to make the blood that goes to my feet come back up again. Which, in a dependent position, will eventually create swelling. This condition by itself is known as venous insufficiency. In 1982,1 had corrective surgery for scoliosis. I remember after the surgery, my surgeon telling me that my feet would swell up. Well, he was right....but it didn't happen right away, and I already had the venous insufficiency working against me. Between the early go's and 2006,1 had a total of eight cellulitis infections and three osteomyelitis infections in both legs but the right was always much worse. And MANY, MANY wounds!!! My scoliosis surgeon had warned me that my feet would swell, but never told me what I was supposed to DO about it when it happened. There were SO many things that were prescribed for me over the years in an attempt to get my swelling "under control" but none of them were really successful. Diuretics were prescribed, but I have since learned that these are CONTRAINDICATED in lymphedema, because they remove the water but leave harmful proteins behind, which leads to fibrosis in the skin...which probably leads to more infections.. I was also prescribed and provided a pump, but never given specific instructions in its use. I have also learned that these, too, are sometimes contraindicated due to the fact that they can damage the superficial lymphatics. I was also never told that I was NOT to use the pump in the presence of an open wound, due to the possibility of spreading infection ...... hence, the three osteomyelitis infections. My last osteo infection was in 2006. During a post-op visit to my wound care doctor, the nurse gave me a business card to the lymphedema clinic I now go attend. At this time, I still had severe swelling and had an ankle wound that simply would not heal. So many times, doctors of ALL specialties treated my wounds and NEVER addressed the fact that, had I not HAD the swelling, these wounds would have healed much easier and I would have been spared so many infections and so much time lost out of simply LIVING my life! I started CDT in Jan. 2007 and finished Phase I of my treatment in August 2007. By September 2007 I was back in a size 7 shoe again, after not being able to wear shoes since the 90*5. Now I can wear my daughter's!" ------------------------------------------- Nancy’s Storey I was told by my Occupational Therapist that I have probably had lymphedema all of my life but did not immediately recognize the symptoms, since when I was younger, they were not as aggressive or as evident, but it was THERE just waiting to "burst" forth, all the time. I have some early pictures taken of me at 4 and 5 years of age; sure enough, my left leg was just a very little bit "bumpy" and slightly larger than the right one and that is, in fact, my lymphedema leg today. I also had to wear oxford-type tie shoes when most little girls were wearing "Mary Janes" or ankle-strap delicate shoes, so I always had had some sort of "foot" or “leg" problem; we just didn't know what it was back in the 1950s.The shoe store salesman just said that I had "very sensitive" feet, I recall. Lymphedema was probably in my system since birth, no doubt, but it didn't become really noticeable or infected (cellulitis) until my later years. Do any of you have any early memories (childhood) of problems prior to your diagnosis of lymphedema? It must be hereditary; my entire family has heart and circulatory problems due to venous insufficiency. I think my paternal grandfather had similar cardiovascular problems as well, but he died before I was born! It's just in the genes, I guess. Thank goodness though that today we have special garments to wear; back then, there were no readily available treatments so more people ended up hospitalized and/ or died. -------------------------- Annette’s Story I will start of by saying every test done on me since 1994 my results have always been excellent and I am not a very big eater but to date I weight in at 485 lbs. I have had a dietician over see everything I make and all is very good. My story starts in 1993 at the age of 30. I was asleep on the couch not feeling very well with a high temp. When I woke I felt like my left leg was on fire. I looked down to see my leg had blown up from the knee to the toes, it was a deep purple and the pain was beyond anything I had ever felt. Called my husband at work and had him come home and take me to the hospital. By the time I reached the hospital I was going into convulsions from a fever of 105.6 they were panicking all around me, put me directly in isolation and began to get the fever down and put me on antibiotics right away. They did strange markings on my leg and every hour they were checking protection from head to toe then after about 8 hours the with a measuring tape to see if any change was happening. But no one was saying anything to me about what I had. Just come in to check on me dressed in full fever finally broke and I was awake enough to ask what was happening. They told me they aren't quite sure but that they are testing. Well come to find out that they were discussing things with my husband Dave and that they were testing for the flesh eating disease. My leg was 32 inches around the calf, the other 21. at first they were just waiting to get my fever down to take me to surgery to remove the leg , then they told Dave it's not when but if they take the leg because it was starting to respond to the antibiotics . Several hours later they said ok they didn't have to take the leg off it is responding very well to the antibiotics. All I was told by them was that I have a bad infection but that it was coming under control. After a 4 day stay I was told I could go home and the home nurses would be in everyday to change the profore wraps and everything was ok. Take it easy for awhile elevate the leg until the swelling goes away, lose weight and all would be fine. I saw my doctor once a month and he kept telling me the same thing, you have to lose weight, elevate the leg and all will be fine. Well all wasn't fine 18 months later after many infections and hospital stays and I gained 108 Ibs and it had traveled to both legs below the knee and the skin from the just below the calf to the ankle was hard as rock, he finally agreed to let me see someone else . He sent me to a dermatologist who took one look at me and said why haven't you been to see me before now .She said 12 months ago I could have saved your legs but now it is too late to much damage has been done . But that they would try profores and see what happens. Well after 6 weeks of treatment nothing much had changed so they just stopped treating me. They would only take care of infections as they came and went but nothing else .when I went back to my doctor in 1994. I said what is this and why is it always sore and swollen. HE said it is cellulitus with secondary elephantiasis. Your legs are going to get very huge and hard like elephants skin, there is no cure and nothing he could do for it, go home lose weight and learn to live with it. so I did or I tried to .at one point the swelling got so bad that I was hospitalized because the right leg split wide open in a straight line from the just below the knee to just above the foot front shin. I got very depressed and just sat around the house waiting to die wondering every day that it got worse if this was the day I would die. As time went on it spread up my legs to the thigh and groin and up to the waist. In 1997 I had a surgery done to remove an apron of belly that was making my legs worse with all the weight. I will provide pictures for any doctor studying lympodema to look at upon request. They are hard to look at even for me. March 2009, Annette has been in the hospital and has lost over 50 lbs. Any weight loss gives some relief. But it takes knowledgeable doctors to help and to know how to treat this. No-one should be told to go home and live with it. There are things that can be done but the entire medical community needs to up-date their education and this life altering affliction and until you walk a mile in someone else's shoes think (What if it was me what would I want the medical community to know). Not all weight is as simple as go home and lose it; the weight gain from lymphodema is fluid and dangerous - without the proper treatment people suffer and some die. ---------------------------- Angela's Story Wow I guess from reading all of your story's I am feeling pretty lucky. About 2 years ago, I dyed my hair; well being chubby I just get in the shower and Rinse it out. I burned the back of my leg. Then it would not go away. It took 6 month and a hospital stay to heal and yet it was still tender. Then 6 months ago my ankle starting swelling and my leg would get red and Start to swell so I went through vigorous antibiotic treatments. After this last bought of infection I told my doctor to send me somewhere this is not going away she thought it my weight and put me on water pills, I did not take them I work full time. So I went to see a wonderful doctor, Dr. Gupta looked and it and knew right away. I am scheduled for pt and a sock. That's my story. ------------------------- ------------------------------------------------------------------------------------------------ |