Guestbook Number 21

Numbers 501 - 525

February 26, 2006 - September 12, 2006

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525. Cindy
Lorain
September 12, 2006 at 07:01

My name is Cindy. I have had lymphedema sincs Dec 5th 1998. I developed it after a severe infection. I have it from the waist down. I am homebound and can only go to the doc or hospital by ambulance. I am 46 years old. My husband passed away five years ago. He was the one that took care of me. We had been childhood sweethearts. He passed away 2 days after our 21st anniversary. I have been truly blessed with a loving son who is a paramedic. He stays with me to make sure I'm taken care of. I have home health aids to help me; they are also family. So my loving life-long friends that always spend time with me. I have 2 beautiful granddaughters and a new grandson due in Oct. But I understand the loneliness and isolation of this horrible condition. I am scared to leave my home. I can't handle the way people stare and the comments they make. I don't like to meet new people. My legs are so deformed and heavy I can'y wear any shoes and only wear very full dressing gowns that come to the floor. I had a pen pal in March of 2001. All at once her mail stopped coming. I don't know what happened to her. I would love to find someone to talk to that understands the depression and isolation that goes with this condition. Please feel free to contact me. God Bless You ALL!

524. Stephanie E. Phillips
Detroit
September 9, 2006 at 02:45

Hello:

I am glad I found this website and wonderful guest book. I am in my late thirties and have just completed therapy for lymphedma. I was first diagnosed in my late teen years. I have extreme swelling in my right lower leg which is the problem area. Sometimes both legs will swell.

For years I have found minimal treatment for this condition. After years of waiting and research, I found out about wrappings and compression sleeves. Unfortunately, my health insurance will not cover supplies for this treatment.$$$$$$ So, I not only is this an uncurable and explainable disorder, I must pay for the treatment that will only help the symptoms and not cure the disease. I must wear the wrappings day and night to control the swelling. Shopping for shoes is even more difficult now.

It was refreshing to see that I am not alone. I am not the only one trying to hide my swelling, and getting strange looks and 20 questions about my foot and ankle swelling. I am not the only one that look at cute strappy sandals, and sexy skirts as window treatments, smile and have to walk away. I am not the only one that has to find Wide and double wide shoes to accommodate my swelling and the multiple wrappings I must wear.

I won't complain. I will continue to do what I must. And now I have an incentive. There is support abroad. Thank you.

523. Yvonne Janssen
Nijmegen
September 7, 2006 at 09:42

Hello Lynette,
I'm sure that if you've lost weight, your lymphedema will get less.
Best regards,
Yvon
Owner of the Lymphedema Guestbook

522. LYNETTE CLOSE
HOUSTON
September 1, 2006 at 01:04

HELLO IM 41 BLACK FEMALE WITH LYPHEDEMA. I WAS TOLD BY A SPECIALIST AT HERMAN HOSPITAL THE ONLY THING THAT WILL HELP IT GO AWAY IS GASTRIC BYPASS SURGERY. BECAUSE IT HAS WENT TOO FAR, I NEED TO KNOW WHAT CAN I DO UNTIL THEN? I CAN HARDLY WALK. ITS MOSLY IN MY RIGHT LEG AFTER HAVING A CYST REMOVED 4 OR 5 YRS AGO. WHAT KIND OF FOODS I AVOID AND WHAT KIND DO I EAT TO HELP IT? PLEASE HELP. I AM MISERABLE AND USE TO BE A VERY OUTGOING PERSON 2 YRS AGO. I HOPE AND PRAY I REGAIN MY STRENGHT AFTER I RECEIVE THIS WEIGHT LOSS SURGERY. THANK YOU AND PRAY FOR ME.

521. Evelyn Alvir
Oakland Gardens, New York
August 13, 2006 at 20:56

Trite but true, you never know how it feels until it happens to you!! My lymphadema is secondary, occurred after my kidney transplant in April 2004. It started with just a swollen foot three months after my transplant. My nephrologist suspected my blood pressure pill and changed it from Norvasc to Cozaar. It subsided but six months after, my thigh blew up three times the normal size. Finally my other nephrologist (a local one in my county) referred me to an oncologist/general surgeon who definitely thought that I had lymphadema. However, he does not believe in any therapy (wrappins, MLD, etc.) and refused to refer me to a therapy place in Long Island, New York. So I sought my GP to fill out the forms and I will have my first session in a day or two. The forums on lymphadema are so supportive, informative and helpful... Thank God for the internet. I so emphatize with all the pleas I read and I wish you all well and hope for better times. I see some desperation in others and can only say, been there, done that! One thing for sure, this leg lymphadema I'm suffering from is farless desperate than being on dialysis. Another thought, can I sue my renal transplant team? It seems that among the hundreds they have done, I am the only one that got the lymph nodes snipped during surgery. Not for the money, tho' I'm not loaded....but maybe I can donate whatever to the Lymphadema Society.

520. Yvonne Janssen
Nijmegen
July 27, 2006 at 09:57

Hello Tina,
I think there is a chance both you and your mother have lymphedema.
Your mother's Doctor probably doesn't know about lymphedema, like so many doctors don't.
Lymphedema doesn't have anything to do with blood vessels.
When you have lymphedema your lymph system is not working properly. The lymph fluid in your limbs, cannot be abducted and heaps up. That's where the swelling comes from.
Good luck,
Yvonne,
Owner of this website.

519. Tina
Calhoun
July 25, 2006 at 07:01

I was diagnosed with Lymphedema a couple of months ago and just started my therapy this week.
I was also just diagnosed with Sleep Apnea back in March, so when the Doctor told me I had Lymphedema, I din't know what to think. I wasn't sure what it all it consist of or anything until I went on-line and got information about lymphedema. When I did get the info. I was really depressed. I work 12 hour swing shifts and it is difficult because I have so much pain in my legs.
Their saying mine are not real bad and my therapy may not take as long. To me that would kind-a hard to say because at times my legs swell bad and it takes a few days for them to go down. My mother and husband don't want to believe that I have Lymphedema. My mom keeps telling me how her ankles swell and that she has indentions also and she's been to her Doctor and he hasn't told her that she has lymphedema. So, How can you tell if you for sure have it without having to pay out alot of money to different Doctor's to find out? My Doctor said he would send me to a vascular doctor but it would cost a lot of money and I told him I would just keep my therapy appointment and go from there.
So if anyone has any information that may help, please e-mail me. I would greatly appreciate it. Good Luck to Everyone with this condition!

518. Marie
Palm Springs
July 13, 2006 at 18:54

I must agree with Carol. Helen what you have stated is against basic science and anatomy. Can you provide the evidence to substantiate what you have claimed? Thank you. Marie

517. carol
July 8, 2006 at 02:22

Re Helen, 517
I'm sorry, but your description of the lymph, neck, food etc sounds very inaccurate. What have you been reading? Please give a reference. Thanks

516. Helen
Edmonton
June 4, 2006 at 04:44

Hi: I have primary lymphedema. I am near retirement age and am not working.
Because I have experimented with myself over many years, I have learned some helpful eating habits that some of you might like to try.
The body is made so that a lot of bacteria from what you eat, is collected in the lymph before it goes down your throat and, also, it is my understanding, it is in the neck area where circulating lymph is finally dumped for drainage out of the body. There are ingredients in foods that will go immediately into the lymph nodes as you are eating and cause swelling - ie: foods containing bacteria cultures, preservatives, pressed meats, --. If you cut out these foods, your neck area will feel better.
Now, because this happens in the neck, I know it is the same for other lymph nodes, glands, etc. If you cut out these foods, the various areas in the abdomen where lymph is, will not swell as much either.
Lastly, we are told to cut salt intake way low; I have learned that any form of sugar intake will cause as much or more swelling than salt.
I would like help with what to do with the very painful bone in the leg that lasts a long time after cellulitis or lymphangitis has been present.

515. London
May 8, 2006 at 03:22

Hello I have inherited lymphadema of both my lower legs from my Gran. Annoyingly everyone in my family keeps saying show your legs and ignore comments off people. I know its vain, but i find it too embaressing.

On the plus side, my Gran lived to 98 and was the fittest person in the old people's home. Probably cos she walked 6 miles everyday for her legs.

514. rose mcneil
st. thomas, ontario
April 28, 2006 at 01:39

In June of 2005 I fractured my ankle in 2 places. I was in a cast for 6 wks. After the cast came off my ankle,foot, and leg kept swelling. I was unable to wear a shoe until Oct. 2005. I was diagnosed with primary lymphedema on Oct.27/06. in both legs. All my life I have had these legs with no shape..straight down no curves. It was a family joke but a joke no longer. I am having the lymphatic drainage treatment done regularly. I have also had the compression therapy done with success but the fluid came back. I also wear support stockings. Had the full length panty hose but was unable to wear them. They kept slipping down my leg and gathering behind my knee causing alot of pain and discomfort. I now have the stockings to the knee which are much better but if I am on my feet alot then they still swell. I also do aquatic exercise class as often as I can. I am trying to lose some weight. My doctor says it will help some but it will never go away. I used to work f/t and now I am off indefinitely. Its very frustrating. Its good to read other lympedema cases. Thanks for sharing.

513. bree
el mirage
April 21, 2006 at 08:45

hi everbody

i have lymphedema since i was 20 year old. now im 32 year old.
i have been suffer so long and i did tried do threapy.
i find it soo humliated for me to go through. therefore it did seem work but then later on it grow back three time bigger than usual. after that i stop doing threapy for long long time ....
i dont understand how you did able to get it back normal.
i wish these doctor to do surgery to remove it out to get me feel comfortable again and rid of these super wart off on my toe .........
beside pls give me tip, anything and also i would love to get know you guys. if you are intrest pls email me
i appericate it alot and i would need your support and understand how it works and how to convict my doctor to get it done before i losing my life or something ..... thanks soo much.

512. John O'Toole
Los Angeles
April 20, 2006 at 17:12

Thanks, Carol. It's good to know my friend isn't the only one having problems with Jobst.

511. carol
nj
April 19, 2006 at 03:14

In 511 John O'Toole wrote

"Since these two engineers resigned, my friend has been getting pressure garments from Jobst that simply do not fit right, to the extent that they cut into her legs and feet."

You can use my conirming experience if needed: I had never had a fit problem in three years of Jobst, but recently I have had the same problem. We had to send back several pair of CCL3 and CCL2 stockings that were too short and too tight, causing pain and reduced circulation. I was very frustrated. They finally got one about right, but didn't admit there has been any change in manufactring. I had wondered if they were setting the knitting machines incorrectly. Juzo was able to do the right size, but I don't like the fabric as well.

510. John O'Toole
Los Angeles
April 11, 2006 at 01:44

A friend of mine is required to wear 100 psi pressure garments for her lymphedema. She has purchased them custom-made from Jobst USA for 37 years, but recently the two engineers who specially designed and constructed them left Jobst, and cannot continue to make them for her because Jobst has the patent on the special material used for that amount of pressure. Since these two engineers resigned, my friend has been getting pressure garments from Jobst that simply do not fit right, to the extent that they cut into her legs and feet. At 100 psi, the slightest manufacturing error can cut like a knife. She has therefore been returning them to Jobst for replacements. But Jobst now says that they will no longer do business with her, because she is too "difficult."

Does anyone out there know of any law that requires a manufacturer of medical devices such as these to provide them to people who need them? My friend could lose one or both legs, or possibly her life. At the very least it would end her life as she knows it (She is extremely active helping disabled children.) There is no other therapy that works for her, and, as I indicated, there is literally no other company that makes these pressure garments at 100 psi. Believe me, we've done our homework on that.

Thanks for any help any one of you can give.

509. Becky
April 9, 2006 at 00:22

Hello! My name is Becky and I have primary lymphedema in my left and right legs. I first noticed the swelling at the age of 16 and never got treatment. Last year for the first time I was introduced to MLD and I try to do that. My problem is although my leg used to swell considerably, it was not painful. Now, (10 years later) my leg does not have to swell much at all, but it is very painful. I have had several of these painful episodes and been prescribed antibiotics for each "infection". I have had an infection about 5 times in the last year and have had to be on bed rest for 2-3 weeks at a time with the antibiotics. This is very depressing and financially straining, since I have been out of work and even had to withdrawl from college because of recurrant "infections". Does anyone have any knowledge of infections without much swelling? I fear that the condition has worsened because I was never treated when the problem began. I would love to hear from others who have primary lymphedema. God Bless you all and don't give up hope!!

508. WENDELL KALCK
LONGWOOD
March 31, 2006 at 15:30

When my lymphedema started, it was 1990 and no one could explain what was happening to my leg.
I went for an exam and a doctor showed me a picture of a person with this problem and I was told to just live with it.
This went on for 10 years with several doctors who said the same.
I was depressed and worried about the end result of losing my leg some day. Then one day a friend was looking into lymphedema on the internet for me and I found a doctor who could help me. He did a wonderful job reducing my leg size with 50% and I have been able to maintain this improvement for 3 years now.
I saw results of other patients he had and I was astounded as to the results. I'm just saying that there is effective treatment and lots of hope to improve and enjoy your life with minimal discomfort and fear.
Good wishes to all.

507. carolyn c.equal@verizon.net
NJ , USA
March 20, 2006 at 21:14

Dear Rach, (re post 505) Here is a response for you from an expert in our field, "Yes, that sounds like primary lymphedema. I would suggest that this person contact the Australian Lymphedema Support Group and Lymphedema Association. They may know about therapists in NZ. That would be a start. By the way, the swelling (if it is lymphedema) may be uncomfortable for the baby but most likely doesn't hurt - so the baby is most likely not in pain because of the swelling." Good luck, Carolyn

506. Carolyn c.equal@verizon.net
NJ , USA
March 19, 2006 at 00:45

The Fetus net.
Here is one article I found. At the end are pictures that you might compare with your baby just as a rough guide. Take care, Carolyn

505. Carolyn c.equal@verizon.net
NJ , USA
March 19, 2006 at 00:30

Dear Rach, I am sorry to hear of your concern re your baby's feet. I have been told by my MLD therapist, Guenter Klose, who has written some articles and done presentations re children with lymphedema that it can happen that young. A doctor from Germany who was visiting him told me about working with baby twins who had the problem and teaching the parents how to do the treatment. I believe that New Zeland has some good LE schools/therpaists, who might be helpful to you as a consult. Good luck! Carolyn

504. Rach rachelstarkey@hotmail.com
Porirua , New Zealand
March 17, 2006 at 11:06

I have just given birth to a beautiful little boy. He was born 8 weeks early (due to Placental Abruption) after going into spontaneous labour and delivered by emergency caesarian. After seeing him for the first time I was surprised to see his feet were filled with fluid and very swollen. I was told not to worry and that it would go away. We are now just over 8 weeks later and yes, they are as swollen and huge as ever. The doctors are not sure what is going on but have mentioned Milroy Syndrome. Does anyone else out there have children who have had similar and what do you do to care for these big puffy feet. It is quite disturbing and hopefully they may go down with age but in the meantime look very painful and sore. We are all searching for answers but unfortunately this is as far as I have come to any sort of answer. If you can help me, please feel free to drop me a line or comment. Thanks.

503. Ruth USA
March 9, 2006 at 22:18

Keisha,

Thank you from all of us who fight lymphedema every day for your kind words. It is always nice to see that others who don't have a certain disease still recognize that those who do fight a disease day by day are facing an extra challenge in their lives. I always admire someone who I see facing a terminal disease and yet fighting with everything they have and maintaining a positive attitude. Yes, I do think of them as brave individuals who are courageous and inspiring. I know that certainly inspire me after my two bouts of breast cancer and the resulting lyphedema. I always think of anyone who is physically or mentally challenged or battling a disease as a special person who is an inspiration to all, not someone to pity or look down upon. If someone wants to consider me as an inspiration for my battle with breast cancer twice, dealing with hereditary breast cancer issues and multiple surgeries to deal with that, and my daily battle with lymphedema, then hey, let them think that. It makes me feel good and hopefully gives others hope and inspiration. I think Carolyn is way off base here in her comments and like the other person who responded, I felt I needed to commend you and tell you thank you.

502. Dotty dottydotty282@hoymail.com
manchester , england
February 26, 2006 at 21:23

Hi everyone
Irene, i have heard of heard of the french surgeon was reading about him actually removing nodes from the abdominal area Sounds great that the lady that had the mastectomy has no swelling in the arm now I just wonder though Surely node removal and damage to the lymphatic system causes secondary lymph then what is going to happen to the part of her body the nodes have been removed from?

I have primary lymph both legs and arms and lipeodema to It seems logical to me that unless the problem at the sourse is corrected which is not possible at this moment in time lymph is for life

Unless stage one then with care MLD it can be sometimes reversed

Dotty

501. Pat O'Connor lymphedemapeople@aol.com
Atlanta, GA , USA
February 26, 2006 at 10:55

Hi Carolyn

I have not posted here in almost two years, but just can't pass this one up.

Your post was hilarious, spoken like a true social engineer from the university of political correctness.

I am a survivor and overcomer of lymphedema for 53 years and of two lymphatic cancers for 11 years and I simply do not have the hang ups about these words you do. Infact, I don't think the overwhelming majority of us have them either.

I also don't feel like some helpless victim who society picks on and discriminates against; nor do I expect society to pity me and have everything handed to me without any effort on my part. I do not experience prejudice because of lymphedema or cancer.

I am not angry and bitter because of having been born with lymphedema nor with having the cancers. Quite frankly, I like and accept who I am and the type of person I am. I would also rather be myself with both conditions then be anyone else in the world.

Life is what we choose it to be...that is true for all people.

You might have meant well from your post, Carolyn, but I found it offensive, condescending and patronizing.

I for one appreciate the fact that Keisha showed enough of an interest in lymphedema to take the time to learn about it and help educate her classmates on it.

Write on Keisha! (pun intended)

Pat O'Connor

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