Guestbook Number Twenty

Numbers 476 - 500

August 4, 2005 - February 2, 2006

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500. Keisha mrsthompson61303@yahoo.com
Detroit , U.S.A
February 2, 2006 at 23:42

Hello readers. My name is Keisha and I am currently studing lymphedema in my Biology class. During the course of my studies, I have been to many websites, seen pictures and have read many stories like the ones here. I know that you all might not think that I know what you're going through because I don't have lymphedema, but I couldn't help it to at least try spreading words of encouragement. I just want to let you guys know that even though you may not feel like there will ever be a brighter future today, just know that there is one tomorrow. Dealing with this must not be easy, but it takes a brave bunch of people with an enoromous amount of courage and heart to keep going. I think that every last person here and others like you, have the bravest and most courageous spirits. Don't give up and don't stop fighting. Keep going and continue to show the world who the real people are. E mail me if you need a friend in a time of need or just support because I really do care. Keep going!

499. bonita jellybeankean@hotmail.com
alberta , canada
February 1, 2006 at 22:47

I have had lymphedema in my entire right leg since I was 12 and no, it is not easy. Not a lot of info out there, is there? Not to mention that it can seem HUGE when everyone is running around in the latest jeans or a mini skirt.I had tried bandaging & stockings before with my family doctor all it did was cut off my circulation and make it feel worse. My first stocking was fitted so tight that when I did manage to get it on, my Mom had to help me take it off 5 minute later- my toes were blue! My mom made me pants to get me through life and I was always told it was just something I'd have to live with. I even had a doctor reprimand me for being so vain (he was Mr.Personality!). Anyway, I never had an infection until I was 31 and both times, I had to be hospitalized-Very scary! It dawned on me that the cosmetic factor wasnt'the only thing to worry about- this condition could kill me if I didn't do something. First of all, I started getting regular exercise and drinking more water. If my leg was gonna be big, at least I should be fit enough to carry the extra weight!I turned 33 last year and just finally found a therapist who is treating me and I am starting to see results. There are no in-hospital treatments where I live but I found a compassionate therapist about 2 hours away. I now wear a custom ($) compression garment during the day and bandage at night. The neat part is how the bandaging is possible- the therapist custom cut flat foam pieces to put over trouble spots ,like the back of my knee and calf, then I wind rolls of cotton over the foam, then I bandage and this allows me to really compress my leg. It is bigger when I am done but boy, it really takes it down! Now it It has only been a few months now but I have taken in the legs on some of my homemade pants. And I haven't been in the hospital since last 2004 so I think I am off to a good start. It still sucks, but it doesn't suck as bad. I keep thinking of the day in the hospital when all they could tell me how close I came to dying and I guess that will keep me seeking help. Hang in there everyone!

498. Ed napavalleyvines@aol.com
Vallejo , USA
January 22, 2006 at 09:37

I was recently diagnosed with primary lymphedema in the feet & legs. I had nearly 3 years or 'strange' infections, swellings, etc before a NP in the surgery dept. at Kaiser said 'Have you ever been told you have lymphedema?' I need some help, advice & encouragement. I'm 48 and work all day on my feet. I'm not in a position to change careers as I own my business but this past month has just about put me on the suicide path. My diagnosis came during one of the worst cellulitis infections I've ever had and I may loose a toe before it's over. The discomfort and pain of the swelling has become overwhelming. I am diabetic & have high blood pressure but they are both well under control and I no longer need insulin for the diabetis. I've lost nearly 100 lbs and gotten in better shape but it seems as if the lymphedema is just taking over. Can anyone give me some insight or direction. The medical community doesn't seem to have many answers for my situation.

497. william penswick captainpenswick@adelphia.net
sandwich, massachusetts , united states of america
January 11, 2006 at 22:57

I am a 59 year old male that was diagnosed with lymphedema in both upper and lower legs and abdomen last spring. Why it developed in me has been a mystery. I did undergo serious back surgery 6 years ago that left me in chronic pain. One of my doctors thinks the intravascular delivery of painkillers from an internal pump is the cause. My legs are wrapped in very tight tubi-grip bandages. A special cream is applied to the legs prior to putting on the tubi-grip bandages. Nothing is being done to my upper legs. I am on 120 mg lasix daily. I have had several bouts of cellulitis this past year. There is a constant burning sensation in both lower legs and feet. The lower legs have changed color to red over the past year. I have put so much weight on from the fluid retention, it is getting difficult to move around. I am already disabled and the last thing I needed was lymphedema. Hopefully, in my situation, the cure is near. I feel for anyone living with this nightmare.

496. Colton Gentry physicistcg@aol.com
Spokane, WA , United States
January 2, 2006 at 19:35

Hello, I have had Lymphedema for about two years now. I am 15 years old. I also have Hashimoto's Disease and Hypothyroidism. I have the lymphedema in all of my limbs but it gets worst on the right side of my body. If anybody has any guidance to offer please contact me. thank you. -Colton

495. Bennie Boi spikedog4d5@aol.com
Shell Beach , USA
December 30, 2005 at 20:38

~~~~~~~~~~~~~~~~~~~~~~~~~~~~PLEASE READ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

hi, my name is Ben. I have primary LE. I am 14. The disease exists in both legs. It is embarrising to live with this condition. for instance: in pe we have to change into our pe cloths. I am the only one that wears pants. I change in the bathroom stall. that probably looks weird. and at the end of the year, we take swimming. how in God's name am i going to be able to take my stockings off, change into a bathing suit and into the pool in 5 minuits?? and i dont want to even think about getting out of the pool, trying to get those comopression stockings on, and my cloths on and onto my next class in 5 min. wow, this really stinks. does anyone else share my pain. I just got these stocking. they are so nice compaired to the wraps. okay well PLEASE e-mail me. I would LOVE to hear from you. seriously. just to talk, or ask a question,or to say hello. anything. i would love to hear from you. yours truely. ~Me

494. Christine Jenner chocolatechristine@yahoo.co.uk
Brighton , England
December 29, 2005 at 17:07

I have primary lymphedema and would be interested to hear about the advantages and disadvantages of undergoing a course of lymphatic drainage massage and bandaging. How long would the benefits last and is the outcome worth the treatment.

Thank you.

493. Maryann Maass auntique2@optonline.net
Pompton Plains , USA
December 26, 2005 at 07:00

Hi, I never knew this site existed. It's Christmas night & I sit her @ my PC feeling sorry for myself because I, too, have been diagnosed with lymphoedema. Four days before Christmas, the compression pump, which my wound care DR. ordered was delivered & operation explained to my husband & myself. I have faithfully used it twice a day, 1 hr on each leg but I can't say I'm urinating allot more than usual. I have noticed that the swelling has lessened, e especially on the scar tissue of my knee replacements. A couple of yrs ago, I banged my leg @ wk & ended up with celluitis & MRSA. After a couple hospitalizations & Vanco treatment, my leg cleared up & I went back to wk. Unfortunately, the celluitis reappeared & so did the MRSA.I was again hospitalized & treated with Vanco on two different occasions, but the limbs remain swollen & my one knee replacement was loosened in my tibia. I have had neg bone scans & vascular studies.This wk I'm have a Lymph test done with a tracer.I have severe osteo arthritis & fibromyralgia to complicate matters.Now they suspect I may have a blockage somewhere in the lymph glands in my legs. How can this be possible, if I don't have CA or other surgery. Can a weight problem all of a sudden cause all these problems ?? Coincidently, in August of this year, I had a cardiac cath done & they had a hard time Getting into im groin. They had to eventually go into the other side. Could this attribuate to my problem ? PLease, if anyone could help me would be greatly apprecited. It really does scare me. Thank you, MARYANN

492. Maggie atcs@sympatico.ca
Hamilton, On. , Canada
December 24, 2005 at 01:16

Hello. I have lymphedema in different places. It started at the neck area,in the thoracic outlet area. Later it spred on the right side on my back from the sholder blade area to my waste line, on the collar bone, on the eye lid and underthe eye,and lately on my left side under the arm and the outside brest area. Dos anybody have the same simptoms what I have? I do not have cancer, but I had a neck and head injury. Do anybody know a doctor who looks after this kind of problem? If sombody has this kind of problem, or know a doctor who has interest or knolage in it, please let me know. Thank you, Maggie

491. vicky vicky.wagner@SBC.GLOBAL.NET
cleveland , cuyahoga
December 14, 2005 at 07:16

THIS IS A BLESSING TO FIND A PROGRAM THAT I CAN FINELY FEEL FREE TO EXPRESS MYSELF AND FRUSTRATION THAT I GO THROUGH WITH THIS DISEASE. I HAVE HAD THIS FOR 20 YEARS OR BETTER. IT STARTED OFF WITH A SPRAIN ANKLE. OVER THE YEARS IT HAS GOTTEN LARGER. I HAVE BEEN IN THE HOSPITAL ONCE BECAUSE OF TOXIC SHOCK CONTRIBUTED TO MY LEG. OH WHAT AN EXPERIENCE, I AM SO THANKFUL THAT I AM STILL HERE TO SHARE WITH OTHERS. HOWEVER, IT SEEMS AS IF NO ONE HAS MUCH KNOWLEDGE ON THIS CONDITION. I AM CURRENTLY WEARING SUPPORT STOCKINGS AND USING THE PUMO. THE STOCKINGS WEAR OUT SO FAST. I AM DESPARTELY LOOKING FOR SOMEONE WHO CAN HELP ME MAINTAIN THE SIZE OR EVEN HELP ME REDUCE THE SIZE. I KNOW IF I LOOSE SOME OF THIS WEIGHT IT WILL HELP. I LIVE IN OHIO. IF YOU HAVE ANY SUGGESTIONS: PLEASE! HELP!

490. carolyn c.equal@verizon.net
NJ , US
December 12, 2005 at 20:55

Someone kindly answered the post that I made below re stockings, but I lost the message before I could answer it! If you wrote to me about your similar frustrations with Jobst stockings, please resend the message. I really did appreciate hearing from you!
Thanks,
carolyn

489. Brenda Francis bigmamma2005@charter.net
Granite City , US
December 4, 2005 at 11:03

Both feet up yo the knee. Have a wound for 6-7 years and it won't go away. Tried treatment, but can't keep up with the wrapping 3-4 times a day until things go down and the stockings never fit right. Thank God I can sew my own pants. I get backless shoes that tie, or cheap tennis shoes and smash the back down. Then I shove my feet in and after a while the swelling goes down and can shove my feet in further. By the middle of the day I can wear most any shoe with a low back. I wouldn't mind giving help with sewing.

488. Kathleen Farrell kathleenafarrell8@mchsi.com
Edenton NC , United States
November 29, 2005 at 22:37

I am told I have lymphedema but can not find it on the net. The only thing involved is the breast. It is red swollen hot and sore. I have had this since August. Everything talks about arms and legs, not just the breast. Does anyone have the same symptoms and if so where can I get material to read. Thank you Kathy Farrell

487. Norma Tullo ntullo@bigpond.net.au
victoria , australia
November 25, 2005 at 18:38

What a great site. I have just discovered that I have Lymphedema and could not find answers to my questions, in total until I found this site. Nice to read about "as it is" situations. Thank you.

486. Sharon H. sharonhut01_@hotmail.com
Auckland , New Zealand
November 20, 2005 at 23:22

Hello,

Well good to see this site up and running. Only just found it by mistake. I've had Lymhoedema since I was in my late 20's. it started as having it just slightly in one leg and ankle. Now I am 37 yrs old and apparently have a mild case of Lymhoedema it gets quite bad in both legs. One leg and ankle though gets more swollen than the other one. It can get quite embarrasing sometimes as I would love to wear shorter skirts and shorts in the summer and now I tend to wear long clothes and boots even in the summer. Would be interested in hearing from other young people. I do have the mediven support stockings that were given to me, when I was living in London. The Charing Cross hospital I found were extremely helpful. They knew alot about this condition. Be nice to hear from people this side of the world (New Zealand). See how you cope with the hot summers here.

485. Carolyn c.equal@verizon.net USA
October 7, 2005 at 00:58

I have lymphedema of both legs from feet to knees. After CDT treatment two years ago they are much improved. I wear the wraps all the time except when I am in the Jobst custom stoskings, which have worked well for two years. A year ago I went into Jobst CCL3 version, which worked well.

But, I recently ordered a new pair, as my old ones had some heel holes. The problem is the new pair, although properly measured, was much narrower (when new is put flat on old) (up to one inch at top and 3/4 at ankles) than the older ones, so they are too tight and cause discoloration at the ankle and indents below the knee.

Three more tries with Jobst to get it right have still resulted in too narrow stockings. Has anyone had this problem? Do you know if Jobst has changed their knitting machine settings or changed the material?

I am very concerned re the problem. Jobst will not talk to a patient, just refers me to my therapist, who is doing the best he can, but has not been able to get the right result. Right now, I have given up on the new pairs and am still using my old ones! Thanks fo any help, Carolyn

484. Karen PortersGifts@comcast.net USA
September 29, 2005 at 02:00

Hi... When I first had my cancer surgery and was told that I would never work again I was so depressed that I almost did not want to wake up from the surgery. I went through the surgery just fine and listened to the doctors by not working out for one year, wearing my stocking, keeping my leg elevated, and so on. At the time of surgery I was 25, owned and operated a gym, was a gymnastics coach, and a fitness trainer. Not working out for a whole year was a horrible thought for me! It was not easy trying to run my gym from my hospital bed for a week, then from home, and then eventually from a chair in my gym with my leg up, but I did it and so can you. (I had an amazing staff to be honest.) Eventually I took the chance and eased into working out again and then eventually went a day (One where I knew I would not be standing for an extended period of time) without my compression stocking. I eventually stopped wearing it all together except on days where I knew I'd be standing. I always had to elevate my leg when not in motion. I am not recemmending anyone do this. It's just what I thought was right for me at the time. Cancer surgery with a lymphendectomy is really a life changing event. I just went back into the stocking because I cannot really work out anymore and feel like I am in reverse. I was in an accident and suffered spinal damage. My circulation is not so great from not working out and my lymphedema is becoming more of a problem again. For all those people with lymphedema from a surgery... if you can still exercise appropriately, you should keep doing the program your therapist prescribed because it does help to keep the swelling down and your circulation up. The only reason I am back on the internet looking for lymphedema info at this point is because a friend is about to have a surgery and her lymph nodes removed. I am going through some of the same emotions again because of my recent turn for the worse and now because I know someone special will be dealing with this condition too. She too is the type of person who enjoys being active. I'm looking for accurate, yet simple information for her to read. The National Lymphedema Network has a great site so check it out. This is a really nice guest book with alot of real life experience. It's a bit of a comfort. Best of luck to all of you with your healing and maintenance... Karen

483. Lyn
Queenstown , United States
September 19, 2005 at 21:53

After 18 years post double mastectomies for breast cancer, I have developed lymphedema in my right arm. The doctors are baffled as to why. But we are working on trying to find the reason. In the meantime, I am having therapy and have to wear a compression sleeve when hiking and probably eventually at work. (I work in a Library.) Playing my flute is painful, but thankfully I can still play the piano which I do professionally. However, I have been feeling very down about this and discouraged. I could use a word of encouragement. After 18 years, it brings everything back and it is affecting my everyday life. Thank you for this website and for giving me the opportunity to speak.

482. J. Johnson bookworm04@excite.com
Mahopac,N.Y. , USA
September 13, 2005 at 06:05

Hello Janet Rose, I have had lymphedema in my legs and feet for 20 years. I share your same clothing problems. Look in your phone book under shoe stores and some will say that they can fit large and wide sizes. That is how I buy my shoes. As far as pants, I had to find a tailor or seamstress to make them for me as the pants in the stores are not wide enough. Good luck!

481. MARY ALBERTOLI malbertoli@tactilesystems.com
NEW YORK , U.S.A.
September 10, 2005 at 15:27

Hello everyone, My name is Mary Albertoli and I represent a company that has manufactured a new medical device called the "Flexitouch" that simulates manual lymph drainage in the home. It covers the trunk as well as the arm or the leg to avoid pitting. It continues to reduce the size of the arm and leg by preparing and draining the fluid. Most insurance companies have been covering the cost of this device. Please call for a free demonstration as well as a two month trial. My number is 914-564-1468.

All the Best, Mary Albertoli

Information on the Flexitouch can be found on the website of Lymph Notes.com and on the site of Tactile Systems.
Yvonne Janssen,
owner of this guestbook.

480. Jessie sarahrachel_1956@hotmail.com
Grays River, WA , USA
September 8, 2005 at 12:37

Gosh, it's good to see so many people out there feeling some of the same things I am!

For Michael, I had toxemia with both of my children. My legs were about 2-3 inches larger around than they should have been by the end of my pregnancy. It affected neither of my children. It really shouldn't as there is no real connection to the water in the tissues of the mother's legs and the baby, UNLESS....your girlfriend needs to keep a close eye on her blood pressure.

In general, other than when I was pregant (age ages 22 and 25, I had no other signs of lymphedema and was quite thin (5'6, 115-125 pounds). Started having chronic lymphedema of both legs around age 35. No doctors ever told me it was a condition by itself (except one neurologist who suggested that it was in my left leg because I broke it at 4 years of age and therefore, the lymph glands were probably damaged). All of my docs told me it was cause I was fat! (which I am NOW, and it isn't any worse than when it started, when I was about 70 pounds lighter). My current doctor has been treating it with lasix which seems to work and treating my BP with atenolol, which, for some reason, also seems to help the lymphedema and is one of the only meds I've ever found that actually works on the BP--besides the Lasix). Recently, my doc wrapped my legs. It took 6 weeks (all day and night) for 6 weeks, changing the wraps weekly so that they would be tighter, each week. After 6 weeks, my legs were beautiful! Just like I remembered from the older days.

Anyway, I tried the 30-40 mmHg hose, but they cut into my ankles and don't really hold the swelling down. Can't afford the custom-made ones. But, I noticed some of you said you wrap your legs at night. I'm going to try that and see how that works.

Thanks, everyone, for posting! You have all given me good ideas and I'm going to refer my doc to this website too!

479. JANET ROSE jrose@pediatricsurgicalassociates.com
BROOKLYN PARK , USA
September 7, 2005 at 20:12

I have leg & foot lymphedma in both legs. I was wondering if anyone has suggestions as to where to get wide comfortable shoes and also pants with wide enough legs. This has been problem for me.

478. George Gillham gdubblegee@aol.com
Coral Springs , United States
September 7, 2005 at 00:43

Hi I have had lymphedema in both legs for about twenty years now,I'm 56 years old. I have noticed as I got older I've been having a lot more bouts of infections than before.I used to have about 2 bouts of infection per year when I was in my 40's but now I very rarely go more than 3 months without one.I dont use the wraps as they tend to roll up in a tight wad and cut into my leg cutting off circulation.I have used stockings twice until they wore out but they are very expensive and mine have to be custom built.Usually I just let mine go and as soon as I feel an infection coming on (heat and redness in the leg)I contact my doctor and get a prescription for antibiotics which generally attack the infection and get rid of it in less than 2 weeks ,then I just continue until the next infection,I know I'm not addressing this problem the right way but after so many years of suffering I'm just tired of fighting it and I just do as little as I can to get by.I'm 6' 2 " tall and weigh 355 lbs (maybe 50 lbs in fluids alone)and I am a bus driver not much time for leg elevation during the day.Thank you for allowing me to share with you my condition ,this is a wonderful message board,anyone have any tips to give me can either post it here or EMail me at gdubblegee@aol.com thank you all.

477. Irene kenny.trans.@xtra.co.nz
Mount Maunganui , New Zealand
August 8, 2005 at 04:59

Hi there , I have had Lymphoedema in my left leg for 17 years now due to cancer and radiotherapy treatment . I wear Mediven stockings 30 - 40 mmg , i have used the Sun Ancon Chi Machine and do MLD ( A MILD FORM OF MASSAGE ) have used a flotron pump as well . All these things are good and can be looked up under their names on the web, they are very expensive to buy here in New Zealand . I take Paroven ( 3000 miligramsa day is the recommended dose) and believe they have help with the swelling as my leg isn't that bad, i have taken it for the 17 years . Has anyone heard of a French Surgeon who does Lymph node transplants ? This is a good site and its good to know we aren't alone . Irene

476. Susana Vieira suvieira@hotmail.com
Albufeira , Portugal
August 4, 2005 at 13:09

Hi. This site is very helpfull. I really belive that eache personal experience, can teacht so must to other personne. I'm just recently discover my problem, witch is herditage and second fase. I have many difficulties in finding doctors that even know this word! So, I make the apeal to have feedback from someone in Europe, in order to change ideas, doctors adress, etc... If anyone out there, please writhe. P.S: I'm not puting the US people apart :-), it just that i can not afford to go to America, and I believe i'm not the only one. Best regards and keep the fight alive.

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