It's great that Kathy has had the courage to speak about her experience. I too have lymphedema .One thing: on the show it wasn't really clear that lymphedema can be something you are born with and not just get through radical surgery like a mastectomy. I was born with it. Yet after years of being fat shamed by people who should know better, in my late 40's my GP gave me the diagnosis. I am now trying the ketogenic diet which is recommended for this condition and the research is very encouraging. I have started watching U Tube vids put out by Le&rn . So in this image conscious world we live in , just stop and thing: maybe that obese person you just glared at for not meeting standards of beauty as they are these days, stop and think for a moment. They may have an underlying medical condition causing their obesity. They could well be following healthy food/ nutritional guidelines and doing regular exercise!! Things are not always what they seem. Stop assuming it's just another" lard a**se" with no impulse control who pigs out!!! Be kind
My mother had lymphedema in both legs...it's a horrible disease...kathy bates is amazing, a great actress and wonderful for bringing awareness to this horrible disease
Hats off to Kathy for her bravery in raising awareness. My Mom had a mild case like Kathy but even mild is NO FUN. Shedding light, increases consciousness an hopefully lead to better treatment methods. But until then be there for your loved ones carrying this burden or the burden of any illness. There's no better medicine than LOVE!
Thank you Kathy Bates for being a spokesperson on this baffling disease. I have primary lymphedema type 2 : Meige's lymphedema. Though onset was at age 15 it would be another 17 years before I was diagnosed. I saw many doctors over the years who had no idea what was wrong with my left leg. There are videos on my channel regarding this condition to help raise awareness.
Thank you dear Kathy for sharing your story and being an advocate for Lymphedema Education and Research (LE&RN). These are the keys to improving the quality of life for so many sufferers.
I have the lymphdema and lipolymphdema and the swellingg is unbearable my walking is terrible as i have spinal stenois as well not many people and medical personnel understand not many places do the theraphy on long island. I have stage2 and type 1 non cancer related i am in pain 24 hrs a day this is a horrible illness and dr need to bone up on tbe illness a d stop telling people tjey are to loose weight tbanks for listening
She is indeed, Even Judge Judy quoted one of her lines in Fried Green Tomatoes - "you may be younger and faster but I have more insurance". Love me some Kathy Bates. God bless you Kathy for shining a light on Lymphedema instead of standing on a political soapbox.
A wonderful, brave lady-and a great actress! I am so glad she came on The Doctors to help publicize this debilitating and disfiguring condition, which can limit daily activities considerably. I have lymphedema of the legs now at 69; I once had beautiful (if I do say so myself!) legs; now, they are disfigured, heavy and painful. I believe that my condition is hereditary, from a long-deceased relative; however, it is life-changing and limiting. Let us hope that more remedies will be discovered, although it is now totally incurable.
Kathy Bates has always been great, now she is truly wonderful! No one in Hollywood would ever admit that they had lymphoedema let alone speak out on it as agressively as she does and it's amazing!! Too many people suffer with this without support, without a physician who is knowledgeable in this disorder, qmf and they often feel alone and helpless. It takes a certain type of person to speak out the way she does and as often as ahe does because not only I it painful, disfiguring and causes fatigue she also has been low on energy since having breast cancer treatments, etc. So what she is doing I just amazing. Love her and she actually is trying to help and it is working. I ♥️ you Kathy Bates. We all do!!
Health insurance, as someone pointed out - takes care of ZILCH. So, it's DIY, read everything you can, become informed, and continue personal advocacy. And as Ms. Bates said, "Getting angry.." We are fortunate in that hubby and I live in NYC. My husband is a veteran, and our local VA hospital gave us a Flexitone /Tactile Compression Device. They sent a wonderful techie, a former combat medic who saw service in Iraq. This guy gave us the full tutorial, encouraged us to ask questions, and helped us learn how to use the device for maximum benefit to help my husband. We are making diet and lifestyle changes, drinking more water, and I employ a hand massage technique on days we do not use the device. Over time, we should be able to significantly improve his quality of life.. Thank you Ms. Bates for your eloquence and commitment.
Love your attitude and fighting spirit, Kerry. I'm with you. If I'm going out, it's full speed ahead. Edema's a difficult subject to discuss openly & honestly. For myself, I admit I have a personal history of poor dietary habits which set the stage for a cascading event. Why is it we can see it in others and ignore what we're doing to ourselves? My event was a stroke caused by hypertension which I suffered after years of running several miles a day, all the while foolishly thinking I could eat whatever I wanted. While in a stroke rehab hospital I saw almost all patients there immediately developing severe edema in the legs and arms. I manage my edema and my loss of function from stroke by exercising the muscles I can still use with weight training, and instead of driving I ride around in my community on a recumbent trike. My advice would be to not get so caught up in treating symptoms like swelling that you depend on what you take for meds or use for appliances and neglect modification of your eating habits. I eat very little red meat and have gone vegan. I take zero medication, not even aspirin. That's me. It's not for everybody. My doctor was against it but he's come around to my way of thinking. It's been nine years. Still learning thru trial and error what works for me. I wonder if swelling is the body's way of removing large proteins from the lymphatic system and dumping them interstitially. According to what doctors are now saying, these proteins collect in the extremities and block the valves that assist in pushing lymphatic fluids up. Muscles need protein for building, and since other symptoms of lymphedema are increased buildup of fatty tissue and shrinking muscles, weight training exercises seem to me to be a way of killing two birds with one stone.
thank u kathy for bringing light to this issue , i have it in both legs and have for over 20 years, but only found out last year went thru 6 weeks of therapy now my husband does it for me . i have the duel leg pumps i use once a day for one hour, then on to compression socks ,which relly hurt. on Jan.22 i had my a complete knee replacement on my left leg , once healed from it the right one has to done . i hope ppl will learn more about this, thanks again
Lymphedema was not even mentioned when I had my bilateral partial mastectomies in 2015 with axillary dissection of 13 lymph nodes!! When I brought it up with my surgeon and oncologist, as nice as they were, they did not want to address or even admit that I had it! They were skeptical even, maybe because it was mild. But I had pain and tingling and finally swelling of my hand and arm on the side of my node removal. I had to ask for a PT referral and ask for all my therapies (massage, sleeves, pneumatic machine, Jovi Pak etc) all along the way. I had to pull it up on the internet to learn about it. It was a lonely trip but because I forced the issue early on, I was able to keep myself at stage 1 (mild). I know that if I hadn't persisted and worked really hard to get the assistance I needed to manage this, it would have gotten much worse! Thanks Kathy for bringing this out in the limelight!
I suffer with this condition since I was about 30. Now I'm 67 and it has gotten worse. 2018 I was treated as an inpatient and the therapist did an excellent job with massages and wraps, unfortunately for me I require special garments for my legs and thighs but they are not covered by medicare, so for 2019 I have been dealing with swollen legs and thighs, I can't drive and have to use a walker. So yes we need to push Medicare to provide suffers of this painful condition with support.
@@greenleavesofsummer9673 I had my right breast and 14 lymph nodes removed in July after that healed 8 weeks of radiation. I have the issues with swelling, but Kathy is correct most doctors do not pay much attention to this as their concern is the actual cancer or surgery. I constantly search RUclips for help and answers. During my bout with breast cancer, none of the cancers foundations did a thing for me but give me each other's phone numbers. This is not a rare occurrence especially if someone has had lymph node removal, but it also occurs as a result of an accident where lymph nodes have been crushed.
@@greenleavesofsummer9673 no it isn't woman with breast cancer who also have lymph node removal can be affected and it is a chronic condition. If you don't have the lymph node removal you are not considered at risk. A lot of women get it but unfortunately the oncologist is only worried about getting rid of the cancer and could care less about your chances of getting lymphedema. He/She will suggest physical therapy if it does happen. The surgeons will usually bring it up and suggest you seeing a lymphedema doctor or at least one of their therapist to set up appointments for after surgery for massage of the scar tissue from the surgery and to discuss lymphedema. If you have Radiation several weeks after surgery once you healed then after radiation you will go for more physical therapy for the scar tissue from the radiation if necessary. I had 7 weeks of radiation which is the max. You should also get checked to see if you are getting lymphedema because you will always be at risk once the lymph nodes are removed. Meaning years later you can get lymphedema it doesn't have to happen right away and it usually will never go away completely.
YES! PLEASE.HELP ME! Noone listened ! How can I connect. The suffering is unbievable. Especially the fact we are made fools of!❤ For Kathy and those who care.
My journey with lymphoedema began about 16 years ago after a train ride that took approximately 30 or so hours in two sections over two days. I never had cancer, nor was it caused by trauma or surgery. The swelling resides in both legs, both arms and to a lesser extent my belly and buttocks. Because it isn't a "glamorous" disease, there are very few doctors who specialise in it in Australia, and until fairly recently there were NO such doctors in my entire state. This meant all treatments have been assessed and done by nurses, physiotherapists and nurses aids. In fact, I've never even had a FORMAL diagnosis, though not one doctor has doubted that this was what I had. Now, I have struggled for years to cope with the swelling, the pain and a very real mobility issue for so long it lead to other health issues. Three years ago I suffered from one of the common ones: phlebitis... and stupidly neglected it. Why? Because I was only just getting back into normality after 12 month looking after my mother as she was dying of cancer, and I didn't WANT to be sick. After ignoring the phlebitis for 10 days... I was taken to hospital thinking I'd had a heart attack, a strange painless heart attack. The reality? Clots in the lungs and pneumonia. The result? 5 months in hospitals due to losing the ability to even walk. Ironically, I lost 65+ kilograms over that 5 months. So now I have Lasix to prevent fluid build up, blood thinners to prevent more clots, and still no formal treatment for the lymphoedema. I learned via the internet that most likely the cause was my weight, but that is something that I can work on. The dry mouth diuretics can cause is exacerbated in my case by Somac for GERD / GORD (also never formally diagnosed), and a CPAP machine for sleep apneoa... Why am I commenting? Not to whine or complain, because health issues aside I have a terrific life. I am commenting because I wish doctors would not assume ALL lymphoedema comes because of surgery. And because I wish the Australian medical system had America's wealth of specialists, while maintaining its affordability for all. Most of all, I wish education here taught medical people to listen to the PATIENT before you listen to the "usuallies" or the "statisticallies" because when medical people don't understand how patients feel, how we need treatment geared for us as individuals rather than as numbers, examples or curiosities, problems that could be fixed quickly or treatments established that actually work, we get the "Well I don't know" and sometimes realise those words actually mean "You're too hard to treat properly, and brought it on yourself because you're fat and old and no one cares". End of rant... Kathy Bates... you are amazing... Thank you for speaking up for us all.
I applaud you... Wished I had known more about this prior to breast cancer surgery and lymph node removal damn sure I would not be in this position of swollen body parts I would have known to get the drainage system working straight after surgery...
My doctor just prescribed Metolazone to aide with my diuretics. I have just started this new pill but has shown significant improvements. Start out very slow, 1 to 2 mg a week and build up from there. You will need to monitor your blood, especially potassium as you move forward. I hope this helps! I feel your pain!
Madame Kathy Bates je vous adresse mon soutient suite à vos ennuis de santé. Je salue votre courage. Je reste un de vos nombreux admirateurs. Vous demeurez pour l'éternité une grande dame.
I was diagnosed 2 years ago and already at stage 3 (the worst level) because most doctors out there have no medical training on the lymphatic system. It's a fact that more than half the doctors out there have only studied the Lymphatic System for 30 minutes in med school. My lower left leg looks like something from a monster movie. Swollen to twice its normal size, discolored, hard as a leather saddle, lumpy with craters forming. Right after being diagnosed I started to have big oozing wounds develop on that leg, front and back, and have had to be treated at the local Wound Clinic. So far none of the usual treatments have helped stop the advancement of the condition. Compression is painful, raising my legs above my heart is painful, walking is painful, sitting in a chair is painful. My left leg feels like I'm carrying around a 30lbs weight strapped to it.
I have been frustrated for many years because Western Medicine is so far behind concerning Lymphedema. I have learned more from my lymphedema therapists on how to manage . They have made my life more manageable. Let's band together 29 years of lymphedema. We will have to fight for change.
Ive had it in my left leg since an injury to the back of my knee at age 9. Swelling started at 14. Circulation is basicaly nonexistent in my leg. Compression doesnt work. Its so swollen stocking actually wont fit and they cut my circulation more. I used to get wraps but its so restrictive. Once the wraps are off it swells back up. I wanted the fluid drained but no doctor would do it. Im 43 and i havent worn a dress shorts or skirt since i was 18 years old. I dont eat any salt..i walk alot to keep movement in my legs and i want to also raise awareness and find cures to heal this..
I have primary lymphedema in my lower extremities.They only give me Lasix and said to elevate and wear compression stockings. No matter what they swell with any activity. I had to quit my job as a Certified Nursing Asst. And I have sciatic in my lower back. No heavy lifting, no long standing or sitting. It is really aggravating. I feel like they really do not care unless something major happens. And it is painful. Sometimes I can bearly walk. And when they are not swollen they still hurt and are sensitive.
Toliessia Collins I have the same issue & was told to elevate & take the lasixs as well. However I just wasn't taking that as a final answer, I know my body & KNEW there had to be an underlying problem. I was finally sent for a Lymphoscintigraphy test & it came back showing that I definitely have lymphatic obstruction (blockage). So now I have to see my Dr to talk about surgery & getting it scheduled. So if you haven't had a lymphoscintigraphy test, talk to your Dr about having one. The injections they give you between your toes to inject the dye is painful I'm not going to lie, but it's worth it to get the results to see if you have blockage anywhere & be able to then look into what will be the best options for you after that. :-)
Sir, I had cured my father edema, after doing research on ayurveda. Just regular intake of buttermilk At least 1 litre(1kg). Per day, with in 5 days your edema will be cure. If you have fewer, after drinking buttermilk, then think that your edema is started the process of curing 100%. My what's up 0919833531760. Any artery or veins which is blocked, will open after regular intake of butter milk.
I have the same issue and I am currently a student nurse. I am in my final year and have had to take off some time to recoupperate and feel heartbroken because I love what I do but my body let's me down and the hours don't help. Did you continue nursing?
I hope that they would put the massage techniques online or make them available to people free as insurance pays for nothing for this disorder practically an As bates said the surgeons only talk about ending cancer not this consequence.I had not heard of this before my cancer removing surgery. Had I not been in a car accident 4 moths after my hysterectomy that resulted in an infection I would never have gotten a doctor to tell me I had lymphedema. Basically if you have a surgery where a lymph node is removed or biopsied or removed watch out for this disease as it can hit you right away or sneak up on you!
Even surgery that does not involve the lymph nodes can be traumatic enough to cause lymphedema. In my case it was ablation surgery to improve the blood flow back to my heart. Within a month my legs were swollen. They wanted to do further surgery but I went and got a 2nd opinion. That doctor took one look at my leg and said I had lymphedema and sent me to the Lymphedema Clinic. My first visit to the clinic and they diagnosed me as already being stage 3 (scale is 0-3). It's been 2 1/2 years since that and the calf of my left leg measures 30", the skin is tough as leather, I have a large weeping wound, and last year had to go into the hospital for 5 days with cellulitis that went into sepsis. What Kathy Bates didn't mention is that most of the doctors in the US spend only 30 minutes or so studying the lymphatic system in medical school, 30 minutes! Outrageous. That's why you want your primary care doctor to be an Internist, although vascular surgeons, dermatologists and some other specialists might have spent much more time studying the lymph system. Insurance companies, being ignorant about lymphedema, often won't approve of some drugs or treatments.
She’s wonderful. Wish there were more videos of people discussing if they’re seeing results or progress from lymph press machines I’ve had mine 3yrs now and I don’t really see results 😢🥺
I live with this everyday and it's very painful I have it in the legs and in my Back it's not fun 😕 it's very painful anyone that has it sending positive prayers healing power your way because it's very painful. Sometimes I wish people lived in my body for one day soo they would understand. May God bless you and heal you there is no Cure for it but I pray everyday that some day they will find 🙏 one.
This is horrible the public doesn’t hear about!! Thank you for the details, my gosh! Another awful disease maybe to a lesser degree but awfully uncomfortable to my patients is lichen sclerosis associated with auto immune! Wish the Doctors would cover this. Patients ask about skin grafting. Any universities looking into treatments. Sugar and carbs may be in question.
I would like to suggest persons with lymphedema to research the T-TAPP workouts which work the muscles to help alleviate the edema trapped in the tissue. Some of the workouts are available on RUclips! Also body brushing helps stimulate the lymphatic system.
I have lymphedema for 1 year now. I had breast cancer surgery(lumpectomy) the doctor removed 24 lymph-nodes Just 1 lymph-node was positive. I think the doctor removed to much lymph-node, the doctor(s) should be more concerned to remove the lymph-node.
I had a radical mastectomy I had 26 lymph nodes taken out of my arm and I take a Benadryl every night just one Benadryl seems to help a lot with the swelling
i Have Lymphedema and Lipadema both. I found out a month or two before my 62nd birthday and I imagine I've been dealing with the symptoms for a couple of decades just didn't know not to blame my morbid obeisity.
I had breast cancer 22 years ago and developed lymphedema. I have found that going swimming 3 or 4 times a week has kept it under control as I am unable to wear the support sleeves due to having eczema as well
This needs to be better known - I also go swimming almost every day for post mastectomy lymphedema. The water pressure of just standing in a deep pool is very good for circulation; doing laps exercises the entire body without any impact issues.
After many surgeries and blood transfusions, I got a cut on my foot which became a step infection, and lead me to yet another hospitalization where my skin turned to seeping blisters, called Celulitis, which kept me in the hospital for 12 days. I was treated for lymphedema, had therapy and now wear compression stockings 40 lbs of pressure everyday, or I must have my legs up . I was wondering why after a couple of years away from this now that I am still bogged down tired and big legged. This doesn't go away. I need to spend more time with light brushing massage and I think I'll buy a rebounder. This is a terrible illness that stays with you. Please be kind to folks who suffer from this. Thanks, I'm reading all I can about this illness. Thanks I'd just like to feel better.
I am so sorry to hear you are feeling badly. Have you tried a vegan diet? Many people feel so much better on an organic, vegan diet. I will pray for you!
I have lymphedema in my right breast after radiation Severe swelling redness and huge welts Been going through physical therapy and wearing compression bra AMAZING how the massage and exercise helps
I have had lymphedema since December 24th 2015, I was only 12 when I got it, it's in my left leg, it starts at my foot and ends at my knee. It took almost a year to get a test done at pmh (princess Margaret hospital). I get massages done and I have to use compression socks. It makes me very uncomfortable got to the pool and the beach and especially during sport when we have to take off our shoes.
I didn't have cancer or anything like that I was in the car on the way to Perth, I looked down at my foot and it was swollen, since then it has never gone back to the way it was, it has gone smaller but not all the way back down
I understand. Please Stay encouraged. Lymphedema has affected my feet legs abdomen breast and arms. Be careful in the heat. The sun dilates the blood vessels thus affecting the lymphatic system .
I have chronic lymphedema of both legs since 1993,at times very sore and my legs are heavy at times where my knees don't want to bend.very depressed at times. My treatment are not covered by insurance, it costed me a lot for pt,stockings,and my pump.i am now on an antibiotic for an precaution for infection, last summer had 11 infections in my legs,in hospital x3 for it.now no treatment due my md left the area and my primary md does not know to treat my lymphedema.,also depressed at times.
My great grandmother, my grandmother, my mother, and one of her sister had breast cancer. All but one got it twice. All of them did from it except one. Therefore when they found a tumor in the auxiliary region of my left breast we decided to remove it and the lymph node or was next to. The labs came back benign. That was about 18-20 years ago. Just one lymph node but they put the drainage tube in a bad place, left it in too long and it had scar tissue adhesion so when they yanked it out it caused trauma. Yet they never told me about lymph lymphedema. It creeps up on you. Stage 0, then 1, then 2, then 3. Considering how sick I am in other ways and how many doctors I see, that I went to the emergency room last November because my lower left leg lad nearly doubled in size, I couldn't bend my knee, my skin was red, three bottom of my foot was blue (
I had venous insufficiency. And yet they sent me home and told me that it was just regular edema and everything was fine. It wasn't. It took another six before one of my specialist realized what was going on and referred me to a lymphedema Clinic. I have made progress unfortunately for whatever ridiculous reason Medicare does not pay for any of the compression bandages, any of the foam bandages any of the stockings, or any of the compressive sleeves for either the legs or arms, and I sincerely doubt that they pay for the pump either so unless you are like Kathy Bates and you have a great deal of money you can't afford the treatment.
It turns out that I'm stage 3 because none of my medical doctors evidently knew what lymphedema look likebecause the only other alternative is that they did know what it look like and they just didn't care because I'm already so sick anyways it doesn't matter. ahead of therapy infusion test over two weeks ago to find out if I had adrenal insufficiency. I had the results the next day but my endocrinologists claimed that they didn't get it for another week and they claim that they still have had not enough time to review it I have had adrenal insufficiency according to the numbers and the blood test for almost two years and they are not treating. You can die from adrenal insufficiency. That's why I said that about that I think that they just didn't care because I don't matter.
@@juliaeversole905 Darling, YOU DO MATTER. Stand up for yourself, be your own best advocate. You don't have to be rude, or nasty about it; in fact charm them and make them adore you. But be persistent. Ask questions of everyone and research their answers. Everything doesn't work for every body, so do your homework. Do it with a smile, a wink and lots of charm. But DO IT. Don't take no for an answer. This amazing lady I know has been doing this for nearly 40 years, surviving and thriving despite an arm that once weighed over 50 lbs. Lots of hard work got it under control and at 67 years old she is a Diva!!
its a nightmare mine came on without warning and these damn things itch... the massages and exercises help.... i stay active... this came on several years after weight loss of 125 lbs. and dietary change... i drink a gallon of water daily... no high sodium... no longer type 2... walk everyday... recent bloodwork shows great... chest xray perfect... i can still fit my clothes size 14... fortunately my jeans are "virtual stretch" technology and support my legs and upper thighs so compression hosiery not needed... i use a lavendar skin treatment that helps relax my skin and muscles... i'm stymied... i'm like wtf?!
I had breast cancer and lymph node removal and I am so concerned about getting lymphedema. When I tell people I am at risk everyone I know never even heard of it. What kills me is the person I was seeing after my surgery who was a lymphedema specialist was horrible she did absolutely nothing but talk about herself (Heather) She also said Lymphedema isn't painful at all and if these women who have it would where the sleeve for it they would be fine. They are vain that's why they don't want to wear it. I found her obnoxious and thank god she finally went to another physical therapy department but in the same facility unfortunately. I am talking about an employee of Greenwich CT hospital their Rehabilitation & physical therapy department. The Greenwich Hospital is part of Yale New Haven and it is the worst for giving good health care.
boopsynana, I was sitting at my kitchen island on a tall chair. When I got up, I didn't realize my leg was numb and fell on the tile. I broke my elbow!
I’m 15 and was recently diagnosed with lymphedema. From my hip to my left toes, my whole leg and foot swells up. (My swollen leg can reach up to 15cm bigger than the other) Does anyone know of any ways to cope and reduce swelling as being a young woman, I’m struggling physically and mentally with having to deal with this everyday 😓
Hi Sweetheart. I have it too. Be thankful you have a diagnosis. Get your physician to refer you to physical therapy for manual lymphatic drainage.There are specialists trained to help you manage this condition. Stay encouraged. Use compression garments that is essential for managing condition. If you need to talk angeladaye97@gmail.com.
I'm so sorry I've had a radical mastectomy which is a surgery to remove the breast I have lymphedema and I found it helps to take a Benadryl every night try taking some Benadryl at night and also get you some compression hosiery ask the pharmacist if you don't know what they are and they'll find them for you also put your feet up above your head lay down and put your feet up above your head
I'm kind of upset because mine is irreversible and I had been going to doctors since I was in my late teens and no one ever thought to check to see, now it's a monster for me affecting my life and I'm learning that it could have been prevented
My mother has it. She had her overlies removed in 2006 because of cancer and was given Radiotherapy at that time. For the past 8 months, her one leg has been swollen to a massive size. We're from India and aren't that well off. I'm in agony thinking about how I can get her help. And does this mean she has to live with it for the rest of her life?
My mother has lymphedema. It's 3 years since her leg has been swollen. I have read the symptom about it and they say that a long time with lymphedema without treatment will cause lymphangiosarcoma. So is that true? What percentage of causing this disease? I live in vietnam where lymphedema is not popular and there is no treatment about it. I am very nervous about her disease. How can i do know? Please lead me some solutions with it, thank you!
Why not enough PR & focus on CURING the very painful crippling condition Lymphedema attached to breast cancer where, by the way, we no longer want to just 'prolong death' but having been CURED for good. Now. We don't have time.
+grace sullivan I am so sorry you are struggling with Lymphedema at your age. You most likely have what is called, Primary Lymphedema; meaning that in your case, it is not caused by injury to the affected area such as breast cancer or other types that invade the lymphatic system. I have read that it is rare in young people as well as small children. Sometimes genetics plays a role. Do you know if there is a history of this in your family ... even grandparents or great-grandparents?
+grace sullivan Primary Lymphedema darling... there now exists a special MRI for the lymphatic system which can show up the exact problems going on under the skin. I have Primary Lymphedema too, check out my blog because I just had surgery to fix it and already have had significant improvement in my leg (5 days after surgery today!).... lymphosaurusrex.wordpress.com/ xoxoxo
Most probably U have from birth, U need to wear medical graduated compression stockings having minimum 32mmHg pressure for couple of months/years depends on the condition. Pls contact +91-9810321015
i wrote this a year ago and have gone to multiple doctors and have had many tests done since. my doctors are thinking about when I'm 18 and done growing to put a stunt in my leg to help my lymph flow. i would love to read your blog! i have never heard of someone cure their lymphedema other then becoming a vegan which only helped a little.
I have it from the waist down and I didn't have cancer. It's miserable. Took years to even be diagnosed because I live in a rural area where they know nothing about it.
It makes me so sad to see that this is addressing a problem which need never happen. Lymph node removal along with breast surgery is for diagnostic purposes only, and has nothing to do with the progression of the breast cancer. When I had a double mastectomy in 1987, I told the surgeons to only remove one lymph node on each side, since I did not need my breast cancer to be staged, because I was opting not to have chemotherapy anyway. I have never had any lymphedema whatsoever in either arm. When one gets a diagnosis of any kind of cancer, they should read everything they can find and educate themselves on their options. I did, and that’s when I decided to not have the standard number of lymph nodes removed, and not to have the standard chemotherapy and radiation treatments.
I developed lymphedema after having my 1st baby 9 years ago. My one foot is forever swollen and won’t go down. Using compression stockings to help pain. Not fun!
As a person fighting with stage 4 metastatic carcinoma, i can better understand the meaning of real pain. I have few experiences relavtive to mastectomy and edema..need to very careful
Finding an affordable lymphedema therapist is like finding a needle in a haystack. I live in a suburb outside of Atlanta. There is only 1 therapist in my huge county. Since she is with hospital rehabilitation my insurance requires a $2000 deductible. In other words I have to pay $547.29 for each visit until I reach $2000. I just don't have that money. So discouraging.
I am not afraid to talk about it kathy help me I been told I had lympho cancer and there is no cure my said this IS a cancer that if it wakes up you will not die of cancer you will WITH cancer And deep down in my heart I knew there was more to that! N I refuse to give bottom line please need have some to listen to me👵🏻💖🙏🥺
Awesome I have one. I use it twice a day for 1 hour. Its referred to as the Cadillac of all pumps. I'm so grateful because it accommodates my arms legs and trunk. Best wishes.
zehnsechz thousands. If you have any type of cancer where multiple lymph nodes were removed, you most probably will develop it. When you take them out the reminder are overtaxed. Think of it as if you had 1000 people continuously bailing out a boat and 150 of them stopped. The rest just can’t keep up. I have a friend who weighs about 110 and her left leg is normal and her right is twice the size and she wears a compression stocking 24/7. Most of her lymph nodes in her right groin had to be removed because cervical cancer spread to the nodes.
Doctors need better training in recognizing this debilitating disease. I started showing symptoms over 20 years ago. Five different doctors, the same two responses: hmmm it looks circulatory and you need to lose weight. Over the years, the swelling, the pain and other symptoms have taken me lower than I can imagine. Had they taken their bias off the table and treated my disease, I would not be in such bad shape today. The swelling, pain and discoloration make me a hermit who never shows skin. Stop telling people they are just fat!
I did not have cancer or surgery, I had no trauma to my body and there is no family history. So how (and why!) do I have Lymphedema in my legs! P.S. One leg is larger.
She is talking about it because she is a beautiful, caring, amazing woman. She wants the hundreds of thousands of women out there who are suffering (like my mom) so they don't feel alone and scared. Education and knowledge is empowering.
Because the powers-that-be will pay more attention to someone like her then they will to everyday people, even one who's been dealing with it for almost 40 years. It also makes Miss C feel less alone knowing it's not just her. It's good to spread Hope. Thank you, Kathy Bates.
![Felix "Unfair" | [Stray Kids : SKZ-PLAYER]](http://i.ytimg.com/vi/Oswujxm2Ag0/mqdefault.jpg)
It's great that Kathy has had the courage to speak about her experience. I too have lymphedema .One thing: on the show it wasn't really clear that lymphedema can be something you are born with and not just get through radical surgery like a mastectomy. I was born with it. Yet after years of being fat shamed by people who should know better, in my late 40's my GP gave me the diagnosis. I am now trying the ketogenic diet which is recommended for this condition and the research is very encouraging. I have started watching U Tube vids put out by Le&rn . So in this image conscious world we live in , just stop and thing: maybe that obese person you just glared at for not meeting standards of beauty as they are these days, stop and think for a moment. They may have an underlying medical condition causing their obesity. They could well be following healthy food/ nutritional guidelines and doing regular exercise!! Things are not always what they seem. Stop assuming it's just another" lard a**se" with no impulse control who pigs out!!! Be kind
My mother had lymphedema in both legs...it's a horrible disease...kathy bates is amazing, a great actress and wonderful for bringing awareness to this horrible disease
Hats off to Kathy for her bravery in raising awareness. My Mom had a mild case like Kathy but even mild is NO FUN.
Shedding light, increases consciousness an hopefully lead to better treatment methods. But until then be there for
your loved ones carrying this burden or the burden of any illness. There's no better medicine than LOVE!
Thank you, Kathy Bates, for bringing attention to this seldom mentioned condition. Your bravery is inspiring.
Kathy should get an Oscar for her work to help those with lymphoedema
Thank you Kathy Bates for being a spokesperson on this baffling disease. I have primary lymphedema type 2 : Meige's lymphedema. Though onset was at age 15 it would be another 17 years before I was diagnosed. I saw many doctors over the years who had no idea what was wrong with my left leg. There are videos on my channel regarding this condition to help raise awareness.
Thank you dear Kathy for sharing your story and being an advocate for Lymphedema Education and Research (LE&RN). These are the keys to improving the quality of life for so many sufferers.
Lymphedma education and research
She is so courageous. Made my day. All she spoke is so true. The struggle is real. Physically, mentally and emotionally.
Bravo Ms. Bates!! It’s so important to eliminate shame from all diseases. Your body isn’t who you are. 🥰
This woman is an incredible talent! What she did with the character of Annie Wilks can never be replicated!
I have the lymphdema and lipolymphdema and the swellingg is unbearable my walking is terrible as i have spinal stenois as well not many people and medical personnel understand not many places do the theraphy on long island. I have stage2 and type 1 non cancer related i am in pain 24 hrs a day this is a horrible illness and dr need to bone up on tbe illness a d stop telling people tjey are to loose weight tbanks for listening
She is indeed, Even Judge Judy quoted one of her lines in Fried Green Tomatoes - "you may be younger and faster but I have more insurance". Love me some Kathy Bates. God bless you Kathy for shining a light on Lymphedema instead of standing on a political soapbox.
A wonderful, brave lady-and a great actress! I am so glad she came on The Doctors to help publicize this debilitating and disfiguring condition, which can limit daily activities considerably. I have lymphedema of the legs now at 69; I once had beautiful (if I do say so myself!) legs; now, they are disfigured, heavy and painful. I believe that my condition is hereditary, from a long-deceased relative; however, it is life-changing and limiting. Let us hope that more remedies will be discovered, although it is now totally incurable.
Kathy Bates has always been great, now she is truly wonderful! No one in Hollywood would ever admit that they had lymphoedema let alone speak out on it as agressively as she does and it's amazing!! Too many people suffer with this without support, without a physician who is knowledgeable in this disorder, qmf and they often feel alone and helpless. It takes a certain type of person to speak out the way she does and as often as ahe does because not only I it painful, disfiguring and causes fatigue she also has been low on energy since having breast cancer treatments, etc. So what she is doing I just amazing. Love her and she actually is trying to help and it is working. I ♥️ you Kathy Bates. We all do!!
So glad you touched on this topic. I have suffered from this for 10 years. I sure wish Kathy could have talked more
Health insurance, as someone pointed out - takes care of ZILCH. So, it's DIY, read everything you can, become informed, and continue personal advocacy. And as Ms. Bates said, "Getting angry.." We are fortunate in that hubby and I live in NYC. My husband is a veteran, and our local VA hospital gave us a Flexitone /Tactile Compression Device. They sent a wonderful techie, a former combat medic who saw service in Iraq. This guy gave us the full tutorial, encouraged us to ask questions, and helped us learn how to use the device for maximum benefit to help my husband. We are making diet and lifestyle changes, drinking more water, and I employ a hand massage technique on days we do not use the device. Over time, we should be able to significantly improve his quality of life.. Thank you Ms. Bates for your eloquence and commitment.
I have a FLEXITOUCH. It's sad that insurance companies wont help.
Love your attitude and fighting spirit, Kerry. I'm with you. If I'm going out, it's full speed ahead.
Edema's a difficult subject to discuss openly & honestly. For myself, I admit I have a personal history of poor dietary habits which set the stage for a cascading event. Why is it we can see it in others and ignore what we're doing to ourselves? My event was a stroke caused by hypertension which I suffered after years of running several miles a day, all the while foolishly thinking I could eat whatever I wanted.
While in a stroke rehab hospital I saw almost all patients there immediately developing severe edema in the legs and arms. I manage my edema and my loss of function from stroke by exercising the muscles I can still use with weight training, and instead of driving I ride around in my community on a recumbent trike.
My advice would be to not get so caught up in treating symptoms like swelling that you depend on what you take for meds or use for appliances and neglect modification of your eating habits. I eat very little red meat and have gone vegan. I take zero medication, not even aspirin. That's me. It's not for everybody. My doctor was against it but he's come around to my way of thinking. It's been nine years. Still learning thru trial and error what works for me.
I wonder if swelling is the body's way of removing large proteins from the lymphatic system and dumping them interstitially. According to what doctors are now saying, these proteins collect in the extremities and block the valves that assist in pushing lymphatic fluids up. Muscles need protein for building, and since other symptoms of lymphedema are increased buildup of fatty tissue and shrinking muscles, weight training exercises seem to me to be a way of killing two birds with one stone.
thank u kathy for bringing light to this issue , i have it in both legs and have for over 20 years, but only found out last year went thru 6 weeks of therapy now my husband does it for me . i have the duel leg pumps i use once a day for one hour, then on to compression socks ,which relly hurt. on Jan.22 i had my a complete knee replacement on my left leg , once healed from it the right one has to done . i hope ppl will learn more about this, thanks again
Lymphedema was not even mentioned when I had my bilateral partial mastectomies in 2015 with axillary dissection of 13 lymph nodes!! When I brought it up with my surgeon and oncologist, as nice as they were, they did not want to address or even admit that I had it! They were skeptical even, maybe because it was mild. But I had pain and tingling and finally swelling of my hand and arm on the side of my node removal. I had to ask for a PT referral and ask for all my therapies (massage, sleeves, pneumatic machine, Jovi Pak etc) all along the way. I had to pull it up on the internet to learn about it. It was a lonely trip but because I forced the issue early on, I was able to keep myself at stage 1 (mild). I know that if I hadn't persisted and worked really hard to get the assistance I needed to manage this, it would have gotten much worse! Thanks Kathy for bringing this out in the limelight!
I suffer with this condition since I was about 30. Now I'm 67 and it has gotten worse. 2018 I was treated as an inpatient and the therapist did an excellent job with massages and wraps, unfortunately for me I require special garments for my legs and thighs but they are not covered by medicare, so for 2019 I have been dealing with swollen legs and thighs, I can't drive and have to use a walker. So yes we need to push Medicare to provide suffers of this painful condition with support.
Is this a rare occurrence because the public doesn’t hear about the condition!
I would think beast cancer research would be studying this!!
@@greenleavesofsummer9673 I had my right breast and 14 lymph nodes removed in July after that healed 8 weeks of radiation. I have the issues with swelling, but Kathy is correct most doctors do not pay much attention to this as their concern is the actual cancer or surgery. I constantly search RUclips for help and answers. During my bout with breast cancer, none of the cancers foundations did a thing for me but give me each other's phone numbers. This is not a rare occurrence especially if someone has had lymph node removal, but it also occurs as a result of an accident where lymph nodes have been crushed.
@@greenleavesofsummer9673 no it isn't woman with breast cancer who also have lymph node removal can be affected and it is a chronic condition. If you don't have the lymph node removal you are not considered at risk. A lot of women get it but unfortunately the oncologist is only worried about getting rid of the cancer and could care less about your chances of getting lymphedema. He/She will suggest physical therapy if it does happen. The surgeons will usually bring it up and suggest you seeing a lymphedema doctor or at least one of their therapist to set up appointments for after surgery for massage of the scar tissue from the surgery and to discuss lymphedema. If you have Radiation several weeks after surgery once you healed then after radiation you will go for more physical therapy for the scar tissue from the radiation if necessary. I had 7 weeks of radiation which is the max. You should also get checked to see if you are getting lymphedema because you will always be at risk once the lymph nodes are removed. Meaning years later you can get lymphedema it doesn't have to happen right away and it usually will never go away completely.
@@gia6743 k
Thanks Kathy Bates and the interview panel. This is great information.
YES! PLEASE.HELP ME!
Noone listened ! How can I connect. The suffering is unbievable. Especially the fact we are made fools of!❤ For Kathy and those who care.
Not sure if anyone will see this, but I have lymphedema of the left ankle/leg, green tea helps so much. Please try it!
thanks. :)
Pls try medically proven management to reduce oedema, contact +91-9810321015
Christina hello which type of green tea do you drink? Thank tou
VIJAY WADHAWAN I have seen that I am going to try the green tea
Thank you. I also have it in my lower left leg.
My mother had this , I am getting the lumps under the knees , I have flabby under the arms . Like she did . God bless everyone that has this .
Elizabeth, I have the lumps under the knees too! I have had pain for 2 years, and was diagnosed 2 weeks ago. God bless you too Elizabeth.
Push your representative to support the LTA, Lymphedema Treatment Act, get the treatment and devices covered by medicare!!
My journey with lymphoedema began about 16 years ago after a train ride that took approximately 30 or so hours in two sections over two days. I never had cancer, nor was it caused by trauma or surgery. The swelling resides in both legs, both arms and to a lesser extent my belly and buttocks. Because it isn't a "glamorous" disease, there are very few doctors who specialise in it in Australia, and until fairly recently there were NO such doctors in my entire state. This meant all treatments have been assessed and done by nurses, physiotherapists and nurses aids. In fact, I've never even had a FORMAL diagnosis, though not one doctor has doubted that this was what I had.
Now, I have struggled for years to cope with the swelling, the pain and a very real mobility issue for so long it lead to other health issues. Three years ago I suffered from one of the common ones: phlebitis... and stupidly neglected it. Why? Because I was only just getting back into normality after 12 month looking after my mother as she was dying of cancer, and I didn't WANT to be sick. After ignoring the phlebitis for 10 days... I was taken to hospital thinking I'd had a heart attack, a strange painless heart attack. The reality? Clots in the lungs and pneumonia. The result? 5 months in hospitals due to losing the ability to even walk. Ironically, I lost 65+ kilograms over that 5 months.
So now I have Lasix to prevent fluid build up, blood thinners to prevent more clots, and still no formal treatment for the lymphoedema. I learned via the internet that most likely the cause was my weight, but that is something that I can work on. The dry mouth diuretics can cause is exacerbated in my case by Somac for GERD / GORD (also never formally diagnosed), and a CPAP machine for sleep apneoa...
Why am I commenting? Not to whine or complain, because health issues aside I have a terrific life. I am commenting because I wish doctors would not assume ALL lymphoedema comes because of surgery. And because I wish the Australian medical system had America's wealth of specialists, while maintaining its affordability for all. Most of all, I wish education here taught medical people to listen to the PATIENT before you listen to the "usuallies" or the "statisticallies" because when medical people don't understand how patients feel, how we need treatment geared for us as individuals rather than as numbers, examples or curiosities, problems that could be fixed quickly or treatments established that actually work, we get the "Well I don't know" and sometimes realise those words actually mean "You're too hard to treat properly, and brought it on yourself because you're fat and old and no one cares".
End of rant... Kathy Bates... you are amazing... Thank you for speaking up for us all.
citrine dragon. It's possible your lymphedema started as lipoedema. Here's a link to support and information in Australia. www.lass.org.au/
I believe I have it and have lived 9 years with it and I’m in Australia too
Most doctors here have no idea it’s frustrating!!!!
I applaud you... Wished I had known more about this prior to breast cancer surgery and lymph node removal damn sure I would not be in this position of swollen body parts I would have known to get the drainage system working straight after surgery...
My doctor just prescribed Metolazone to aide with my diuretics. I have just started this new pill but has shown significant improvements. Start out very slow, 1 to 2 mg a week and build up from there. You will need to monitor your blood, especially potassium as you move forward. I hope this helps! I feel your pain!
citrine dragon ?
Madame Kathy Bates je vous adresse mon soutient suite à vos ennuis de santé. Je salue votre courage. Je reste un de vos nombreux admirateurs. Vous demeurez pour l'éternité une grande dame.
I was diagnosed 2 years ago and already at stage 3 (the worst level) because most doctors out there have no medical training on the lymphatic system. It's a fact that more than half the doctors out there have only studied the Lymphatic System for 30 minutes in med school.
My lower left leg looks like something from a monster movie. Swollen to twice its normal size, discolored, hard as a leather saddle, lumpy with craters forming. Right after being diagnosed I started to have big oozing wounds develop on that leg, front and back, and have had to be treated at the local Wound Clinic. So far none of the usual treatments have helped stop the advancement of the condition. Compression is painful, raising my legs above my heart is painful, walking is painful, sitting in a chair is painful. My left leg feels like I'm carrying around a 30lbs weight strapped to it.
I have been frustrated for many years because Western Medicine is so far behind concerning Lymphedema. I have learned more from my lymphedema therapists on how to manage . They have made my life more manageable. Let's band together 29 years of lymphedema. We will have to fight for change.
Ive had it in my left leg since an injury to the back of my knee at age 9. Swelling started at 14. Circulation is basicaly nonexistent in my leg. Compression doesnt work. Its so swollen stocking actually wont fit and they cut my circulation more. I used to get wraps but its so restrictive. Once the wraps are off it swells back up. I wanted the fluid drained but no doctor would do it. Im 43 and i havent worn a dress shorts or skirt since i was 18 years old. I dont eat any salt..i walk alot to keep movement in my legs and i want to also raise awareness and find cures to heal this..
I have primary lymphedema in my lower extremities.They only give me Lasix and said to elevate and wear compression stockings. No matter what they swell with any activity. I had to quit my job as a Certified Nursing Asst. And I have sciatic in my lower back. No heavy lifting, no long standing or sitting. It is really aggravating. I feel like they really do not care unless something major happens. And it is painful. Sometimes I can bearly walk. And when they are not swollen they still hurt and are sensitive.
Toliessia Collins I have the same issue & was told to elevate & take the lasixs as well. However I just wasn't taking that as a final answer, I know my body & KNEW there had to be an underlying problem. I was finally sent for a Lymphoscintigraphy test & it came back showing that I definitely have lymphatic obstruction (blockage). So now I have to see my Dr to talk about surgery & getting it scheduled. So if you haven't had a lymphoscintigraphy test, talk to your Dr about having one. The injections they give you between your toes to inject the dye is painful I'm not going to lie, but it's worth it to get the results to see if you have blockage anywhere & be able to then look into what will be the best options for you after that. :-)
Toliessia Collins same
Sir, I had cured my father edema, after doing research on ayurveda. Just regular intake of buttermilk At least 1 litre(1kg). Per day, with in 5 days your edema will be cure. If you have fewer, after drinking buttermilk, then think that your edema is started the process of curing 100%. My what's up 0919833531760. Any artery or veins which is blocked, will open after regular intake of butter milk.
I have the same issue and I am currently a student nurse. I am in my final year and have had to take off some time to recoupperate and feel heartbroken because I love what I do but my body let's me down and the hours don't help. Did you continue nursing?
SANTOSH KADAM butter milk u mean with salt r plain and is your fathers edema caused due to cancer?
I love she is advocating. I am an occupational therapist and certified lymphedema therapist.
Thank you Bernadette for your assistance and valuable most needed support to patients with lymphedema. You serve a great purpose.
I hope that they would put the massage techniques online or make them available to people free as insurance pays for nothing for this disorder practically an As bates said the surgeons only talk about ending cancer not this consequence.I had not heard of this before my cancer removing surgery. Had I not been in a car accident 4 moths after my hysterectomy that resulted in an infection I would never have gotten a doctor to tell me I had lymphedema. Basically if you have a surgery where a lymph node is removed or biopsied or removed watch out for this disease as it can hit you right away or sneak up on you!
It 's good idea for people who have lymphedema all around the world
good to know
Even surgery that does not involve the lymph nodes can be traumatic enough to cause lymphedema. In my case it was ablation surgery to improve the blood flow back to my heart. Within a month my legs were swollen. They wanted to do further surgery but I went and got a 2nd opinion. That doctor took one look at my leg and said I had lymphedema and sent me to the Lymphedema Clinic. My first visit to the clinic and they diagnosed me as already being stage 3 (scale is 0-3). It's been 2 1/2 years since that and the calf of my left leg measures 30", the skin is tough as leather, I have a large weeping wound, and last year had to go into the hospital for 5 days with cellulitis that went into sepsis.
What Kathy Bates didn't mention is that most of the doctors in the US spend only 30 minutes or so studying the lymphatic system in medical school, 30 minutes! Outrageous. That's why you want your primary care doctor to be an Internist, although vascular surgeons, dermatologists and some other specialists might have spent much more time studying the lymph system.
Insurance companies, being ignorant about lymphedema, often won't approve of some drugs or treatments.
She's amazing.
She’s wonderful.
Wish there were more videos of people discussing if they’re seeing results or progress from lymph press machines
I’ve had mine 3yrs now and I don’t really see results 😢🥺
I love Kathy Bates . I now want to see another katht Bates movie
I applaud her for standing up for herself and advocating the spread of awareness and education, she's great!!!
I live with this everyday and it's very painful I have it in the legs and in my Back it's not fun 😕 it's very painful anyone that has it sending positive prayers healing power your way because it's very painful. Sometimes I wish people lived in my body for one day soo they would understand. May God bless you and heal you there is no Cure for it but I pray everyday that some day they will find 🙏 one.
I admire her sooooo much ❤️
Good topic, Thank you.
This is horrible the public doesn’t hear about!! Thank you for the details, my gosh! Another awful disease maybe to a lesser degree but awfully uncomfortable to my patients is lichen sclerosis associated with auto immune!
Wish the Doctors would cover this. Patients ask about skin grafting. Any universities looking into treatments. Sugar and carbs may be in question.
I love Kathy Bates.
She's a god send....❤❤❤
I would like to suggest persons with lymphedema to research the T-TAPP workouts which work the muscles to help alleviate the edema trapped in the tissue. Some of the workouts are available on RUclips! Also body brushing helps stimulate the lymphatic system.
I have lymphedema for 1 year now. I had breast cancer surgery(lumpectomy) the doctor removed 24 lymph-nodes Just 1 lymph-node was positive. I think the doctor removed to much lymph-node, the doctor(s) should be more concerned to remove the lymph-node.
I had a radical mastectomy I had 26 lymph nodes taken out of my arm and I take a Benadryl every night just one Benadryl seems to help a lot with the swelling
She's is amazing and awesome
i Have Lymphedema and Lipadema both. I found out a month or two before my 62nd birthday and I imagine I've been dealing with the symptoms for a couple of decades just didn't know not to blame my morbid obeisity.
We so need your voice
I had breast cancer 22 years ago and developed lymphedema. I have found that going swimming 3 or 4 times a week has kept it under control as I am unable to wear the support sleeves due to having eczema as well
This needs to be better known - I also go swimming almost every day for post mastectomy lymphedema. The water pressure of just standing in a deep pool is very good for circulation; doing laps exercises the entire body without any impact issues.
After many surgeries and blood transfusions, I got a cut on my foot which became a step infection, and lead me to yet another hospitalization where my skin turned to seeping blisters, called Celulitis, which kept me in the hospital for 12 days. I was treated for lymphedema, had therapy and now wear compression stockings 40 lbs of pressure everyday, or I must have my legs up . I was wondering why after a couple of years away from this now that I am still bogged down tired and big legged. This doesn't go away. I need to spend more time with light brushing massage and I think I'll buy a rebounder. This is a terrible illness that stays with you. Please be kind to folks who suffer from this. Thanks, I'm reading all I can about this illness. Thanks I'd just like to feel better.
I am so sorry to hear you are feeling badly. Have you tried a vegan diet? Many people feel so much better on an organic, vegan diet.
I will pray for you!
I have lymphedema in my right breast after radiation Severe swelling redness and huge welts Been going through physical therapy and wearing compression bra AMAZING how the massage and exercise helps
Love Kathy Bates
I have had lymphedema since December 24th 2015, I was only 12 when I got it, it's in my left leg, it starts at my foot and ends at my knee. It took almost a year to get a test done at pmh (princess Margaret hospital). I get massages done and I have to use compression socks. It makes me very uncomfortable got to the pool and the beach and especially during sport when we have to take off our shoes.
I didn't have cancer or anything like that I was in the car on the way to Perth, I looked down at my foot and it was swollen, since then it has never gone back to the way it was, it has gone smaller but not all the way back down
I understand. Please Stay encouraged. Lymphedema has affected my feet legs abdomen breast and arms. Be careful in the heat. The sun dilates the blood vessels thus affecting the lymphatic system .
I have chronic lymphedema of both legs since 1993,at times very sore and my legs are heavy at times where my knees don't want to bend.very depressed at times. My treatment are not covered by insurance, it costed me a lot for pt,stockings,and my pump.i am now on an antibiotic for an precaution for infection, last summer had 11 infections in my legs,in hospital x3 for it.now no treatment due my md left the area and my primary md does not know to treat my lymphedema.,also depressed at times.
I have it in my armpit. It sucks. Breast cancer sucks.
I love Cathy😃💜🇦🇺
My great grandmother, my grandmother, my mother, and one of her sister had breast cancer. All but one got it twice. All of them did from it except one. Therefore when they found a tumor in the auxiliary region of my left breast we decided to remove it and the lymph node or was next to. The labs came back benign. That was about 18-20 years ago. Just one lymph node but they put the drainage tube in a bad place, left it in too long and it had scar tissue adhesion so when they yanked it out it caused trauma. Yet they never told me about lymph lymphedema. It creeps up on you. Stage 0, then 1, then 2, then 3. Considering how sick I am in other ways and how many doctors I see, that I went to the emergency room last November because my lower left leg lad nearly doubled in size, I couldn't bend my knee, my skin was red, three bottom of my foot was blue (
I had venous insufficiency. And yet they sent me home and told me that it was just regular edema and everything was fine. It wasn't. It took another six before one of my specialist realized what was going on and referred me to a lymphedema Clinic. I have made progress unfortunately for whatever ridiculous reason Medicare does not pay for any of the compression bandages, any of the foam bandages any of the stockings, or any of the compressive sleeves for either the legs or arms, and I sincerely doubt that they pay for the pump either so unless you are like Kathy Bates and you have a great deal of money you can't afford the treatment.
It turns out that I'm stage 3 because none of my medical doctors evidently knew what lymphedema look likebecause the only other alternative is that they did know what it look like and they just didn't care because I'm already so sick anyways it doesn't matter. ahead of therapy infusion test over two weeks ago to find out if I had adrenal insufficiency. I had the results the next day but my endocrinologists claimed that they didn't get it for another week and they claim that they still have had not enough time to review it I have had adrenal insufficiency according to the numbers and the blood test for almost two years and they are not treating. You can die from adrenal insufficiency. That's why I said that about that I think that they just didn't care because I don't matter.
@@juliaeversole905 Darling, YOU DO MATTER. Stand up for yourself, be your own best advocate. You don't have to be rude, or nasty about it; in fact charm them and make them adore you. But be persistent. Ask questions of everyone and research their answers. Everything doesn't work for every body, so do your homework. Do it with a smile, a wink and lots of charm. But DO IT. Don't take no for an answer. This amazing lady I know has been doing this for nearly 40 years, surviving and thriving despite an arm that once weighed over 50 lbs. Lots of hard work got it under control and at 67 years old she is a Diva!!
its a nightmare mine came on without warning and these damn things itch... the massages and exercises help.... i stay active... this came on several years after weight loss of 125 lbs. and dietary change... i drink a gallon of water daily... no high sodium... no longer type 2... walk everyday... recent bloodwork shows great... chest xray perfect... i can still fit my clothes size 14... fortunately my jeans are "virtual stretch" technology and support my legs and upper thighs so compression hosiery not needed... i use a lavendar skin treatment that helps relax my skin and muscles... i'm stymied... i'm like wtf?!
Thank you kathy..
I have stage 4 and my insurance keeps denying me needed pumps
I had breast cancer and lymph node removal and I am so concerned about getting lymphedema. When I tell people I am at risk everyone I know never even heard of it. What kills me is the person I was seeing after my surgery who was a lymphedema specialist was horrible she did absolutely nothing but talk about herself (Heather) She also said Lymphedema isn't painful at all and if these women who have it would where the sleeve for it they would be fine. They are vain that's why they don't want to wear it. I found her obnoxious and thank god she finally went to another physical therapy department but in the same facility unfortunately. I am talking about an employee of Greenwich CT hospital their Rehabilitation & physical therapy department. The Greenwich Hospital is part of Yale New Haven and it is the worst for giving good health care.
Those high chairs are not comfortable for older people-cuts of circ in the thighs
boopsynana, I was sitting at my kitchen island on a tall chair. When I got up, I didn't realize my leg was numb and fell on the tile. I broke my elbow!
I’m 15 and was recently diagnosed with lymphedema. From my hip to my left toes, my whole leg and foot swells up. (My swollen leg can reach up to 15cm bigger than the other) Does anyone know of any ways to cope and reduce swelling as being a young woman, I’m struggling physically and mentally with having to deal with this everyday 😓
Hi Sweetheart. I have it too. Be thankful you have a diagnosis. Get your physician to refer you to physical therapy for manual lymphatic drainage.There are specialists trained to help you manage this condition. Stay encouraged. Use compression garments that is essential for managing condition. If you need to talk angeladaye97@gmail.com.
I'm so sorry I've had a radical mastectomy which is a surgery to remove the breast I have lymphedema and I found it helps to take a Benadryl every night try taking some Benadryl at night and also get you some compression hosiery ask the pharmacist if you don't know what they are and they'll find them for you also put your feet up above your head lay down and put your feet up above your head
Crying again because I have it in my legs it's alot to deal with
My doctor thinks my legs are suffering from Lymphedema. I am also prediabetic so I can't do a lot of juices to help the pain.
.Gog bless you Kathy
I'm kind of upset because mine is irreversible and I had been going to doctors since I was in my late teens and no one ever thought to check to see, now it's a monster for me affecting my life and I'm learning that it could have been prevented
@Northern I am so sorry to hear this! I will pray for you!
I have suffered with lymphedema for 8 years now ther is no treatment by doctors thay do not treat this sickness it is all so very painfull 😢😢😢😢
Ingrid Bergman also wore an arm stocking for her medical situation. Love you Cathy Bates.
My mother has it. She had her overlies removed in 2006 because of cancer and was given Radiotherapy at that time. For the past 8 months, her one leg has been swollen to a massive size. We're from India and aren't that well off. I'm in agony thinking about how I can get her help. And does this mean she has to live with it for the rest of her life?
Pls contact +91-9810321015 to reduce oedema on your mother's Leg .....
My doctor address this problem before surgery. But I still have issues with it.
My mother has lymphedema. It's 3 years since her leg has been swollen. I have read the symptom about it and they say that a long time with lymphedema without treatment will cause lymphangiosarcoma. So is that true? What percentage of causing this disease? I live in vietnam where lymphedema is not popular and there is no treatment about it. I am very nervous about her disease. How can i do know? Please lead me some solutions with it, thank you!
vânn pé I
why after 28yrs having breast cancer and Lymphnode removed now 1yr8months Lymphedeama
Why not enough PR & focus on CURING the very painful crippling condition Lymphedema attached to breast cancer where, by the way, we no longer want to just 'prolong death' but having been CURED for good. Now. We don't have time.
i have it in my legs. yep. I'm 15. never had cancer before. no one seems to know why i have it
grace sullivan Really :S ?. I am 21 and I have it on my legs too. Started suddenly about 4 months ago.
+grace sullivan I am so sorry you are struggling with Lymphedema at your age. You most likely have what is called, Primary Lymphedema; meaning that in your case, it is not caused by injury to the affected area such as breast cancer or other types that invade the lymphatic system. I have read that it is rare in young people as well as small children. Sometimes genetics plays a role. Do you know if there is a history of this in your family ... even grandparents or great-grandparents?
+grace sullivan
Primary Lymphedema darling... there now exists a special MRI for the lymphatic system which can show up the exact problems going on under the skin. I have Primary Lymphedema too, check out my blog because I just had surgery to fix it and already have had significant improvement in my leg (5 days after surgery today!).... lymphosaurusrex.wordpress.com/ xoxoxo
Most probably U have from birth, U need to wear medical graduated compression stockings having minimum 32mmHg pressure for couple of months/years depends on the condition.
Pls contact +91-9810321015
i wrote this a year ago and have gone to multiple doctors and have had many tests done since. my doctors are thinking about when I'm 18 and done growing to put a stunt in my leg to help my lymph flow. i would love to read your blog! i have never heard of someone cure their lymphedema other then becoming a vegan which only helped a little.
I've got it with 13 on my left leg
I have it from the waist down and I didn't have cancer. It's miserable. Took years to even be diagnosed because I live in a rural area where they know nothing about it.
Blessings to you Angie. I understand. I've had lymphedema for over 20 years.
It makes me so sad to see that this is addressing a problem which need never happen. Lymph node removal along with breast surgery is for diagnostic purposes only, and has nothing to do with the progression of the breast cancer. When I had a double mastectomy in 1987, I told the surgeons to only remove one lymph node on each side, since I did not need my breast cancer to be staged, because I was opting not to have chemotherapy anyway. I have never had any lymphedema whatsoever in either arm. When one gets a diagnosis of any kind of cancer, they should read everything they can find and educate themselves on their options. I did, and that’s when I decided to not have the standard number of lymph nodes removed, and not to have the standard chemotherapy and radiation treatments.
I developed lymphedema after having my 1st baby 9 years ago. My one foot is forever swollen and won’t go down. Using compression stockings to help pain. Not fun!
As a person fighting with stage 4 metastatic carcinoma, i can better understand the meaning of real pain. I have few experiences relavtive to mastectomy and edema..need to very careful
VOLUME !!!
Finding an affordable lymphedema therapist is like finding a needle in a haystack. I live in a suburb outside of Atlanta. There is only 1 therapist in my huge county. Since she is with hospital rehabilitation my insurance requires a $2000 deductible. In other words I have to pay $547.29 for each visit until I reach $2000. I just don't have that money. So discouraging.
I am not afraid to talk about it kathy help me I been told I had lympho cancer and there is no cure my said this IS a cancer that if it wakes up you will not die of cancer you will WITH cancer
And deep down in my heart I knew there was more to that! N I refuse to give bottom line please need have some to listen to me👵🏻💖🙏🥺
Omg.....it's scary 😮
My apologies: I meant FLEXITOUCH.
Awesome I have one. I use it twice a day for 1 hour. Its referred to as the Cadillac of all pumps. I'm so grateful because it accommodates my arms legs and trunk. Best wishes.
how many skinny people have lymphedema?
zehnsechz thousands. If you have any type of cancer where multiple lymph nodes were removed, you most probably will develop it. When you take them out the reminder are overtaxed. Think of it as if you had 1000 people continuously bailing out a boat and 150 of them stopped. The rest just can’t keep up. I have a friend who weighs about 110 and her left leg is normal and her right is twice the size and she wears a compression stocking 24/7. Most of her lymph nodes in her right groin had to be removed because cervical cancer spread to the nodes.
Doctors need better training in recognizing this debilitating disease. I started showing symptoms over 20 years ago. Five different doctors, the same two responses: hmmm it looks circulatory and you need to lose weight. Over the years, the swelling, the pain and other symptoms have taken me lower than I can imagine. Had they taken their bias off the table and treated my disease, I would not be in such bad shape today. The swelling, pain and discoloration make me a hermit who never shows skin. Stop telling people they are just fat!
I did not have cancer or surgery, I had no trauma to my body and there is no family history. So how (and why!) do I have Lymphedema in my legs! P.S. One leg is larger.
Vodder therapy
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We are so celebrity-obsessed in the U.S.
Weren't you intrigued with Kathy Bates appearing on The Doctors?
I see celebrities as regular people. They just have money and exposure.
CANNIBALS OIL!!!!!!!
😂😂😂
DANGEROUS to wear a sleeve without hand protection (Gauntlet or glove)
Actually it isn't. These are medically fitted compression garments. You should read up on it.
Why does she need to talk about it on TV? Its personal.
She is talking about it because she is a beautiful, caring, amazing woman. She wants the hundreds of thousands of women out there who are suffering (like my mom) so they don't feel alone and scared.
Education and knowledge is empowering.
Susie Arviso Because she is trying to help other people.
Because the powers-that-be will pay more attention to someone like her then they will to everyday people, even one who's been dealing with it for almost 40 years. It also makes Miss C feel less alone knowing it's not just her. It's good to spread Hope. Thank you, Kathy Bates.
I have lymphedema. I look up to her.
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