| • About us | ||
| • Lymphoedema | ||
| • Treatment | ||
| • Articles | ||
| • Contacts | ||
| • Messages | ||
| • Useful Links | ||
| • Join up | ||
| • Information day | ||
|
• Home page
|
Messages
| If you have an experience or a tip you would like to share with others - please email us. It may help someone. If you have an enquiry about treatment, please email us. There may be help for you. |
|
Steph Elisa Galbreath [email protected] Baton Rouge, LA United States * I found a link to you on another site * -Friday, February 09, 2001 at 14:05:38 (EST) Hi! My name is Pat. Iam 60 yrs old. I was born with hereditary lymphoedema. I have written a history of my battles. This includes operations - medications - infections - hygiene. The book is not for publication it is only a guide for future generations to help them deal with the problems. I can email you a copy for free and hope there is some help for you in it. feel free to email my daughter Bronwyn for more info Pat Jagodic Barham, NSW Australia * From a Search Engine * -Thursday, November 16, 2000 at 20:40:03 (EST) Hello, I'm a 48 yr.and have had lymphedema for at least the last 8 yrs.but was not diagnois till about the last 4 yrs.at first my left leg started to get bigger than the rest of my body and then over time I got biger all over but in different degrees.after dozens of test for many things a doctor finally told me what I had and that there was no cure but some things I could do to help live a better life. I wear compression stockings on both my legs and have manage to bring down the fluid in them alot.the left leg at one time look like it belong to an elephant and the right was more normal looking.they had me put stockings on both, so that the right would not get to where the left had gone to. I have had to go ontotal disability, which has been hard since i've always worked on my feet and atleast 12-14 hr.days.most of my days are spent with my legs raised up on pillows above my heart while I wear my stockings, except when I sleep. I've learn to schedule my days and make the most of my time up and about and can have almost a normal lifestyle.when this started I manage to go from about 165lbs. to 355lbs and it was almost all fluid.with keeping my legs up and using the stockings I have actually managed to get my weight down to 220lbs and still going.the doctor has said that 95% of it has been fluid that has gone into the working lymphatic channels that still work.my left leg still is bigger than my right and there are signs that it is now in my right leg, but it won't get as big as the left did.it is in some of my arms and hands but not all over, and i'm going to try compression on my arms.what really concerns me the most, is that as the fluid moves from my legs my abdomen has gotten some what bloated and with the weigth/fluid loose, I thought it would go down.my doctor was not sure if you could get lymphedema in the stomach and if so can you wear a compression girdle? I just came from having my leg wrapped for the first time in 6 months, I feel a little nauseated, is this normal? Massage then wrap. I guess it makes sense, or either I am digesting the fact that I will always suffer with lympheodema. please answer if possible. Phyllis Scott columbia, sc -Wednesday, November 08, 2000 at 05:36:35 (EST) I have lymphoedema in my left leg to to node dissection, I was working out and running but my left leg just blew up on me, any advise for me, I am starting therapy tomorrow with a lymphoedema therapist. Phyllis Scott columbia, sc United States -Tuesday, November 07, 2000 at 07:50:51 (EST) I have only recently been informed about the possibility of developing lymphoedema since surgery for cervical cancer 2 years ago. How can I avoid its onset, is it inevitable? Can anyone advise me? Thankyou Chriswhich Chris Leeds, Great Britain -Sunday, November 05, 2000 at 03:17:27 (EST) I'm almost 42 and have lymphoedema in my right leg for approx 3 yrs - triggered off by the trauma of divorce. I wear a compression stocking custom made in Germany. I have recently started Aquarobics 2 nights a week and find this is helping both with my leg and general fitness. Massage morning and night and exercises provided by physio in charge at Mater Hospital - Waratah, also helps. It is more a nuisance than anything. Any tips would be appreciated. Thanx heaps. shirley germon lemon tree passage , nsw Australia -Friday, November 03, 2000 at 10:39:05 (EST) Hi, I have a daughter Sam who is now 16. She has has lymphoedema in both legs since she was 6 and has worn pressure bandages on both legs for the last 9 years. Sam also has a constant flow of chylometrorrhea from her genital area. I need to find out more about this condition and what can be done. Wendy Selby, Vic Australia -Friday, October 27, 2000 at 20:09:33 (EST) Hi, my son has lymphangiomatosis, it is like Lymphoedema, but he has a lymphatic mass internally which leaks fluid around his heart and lungs and turns his bone to fluid, he is the only one in Australia and finding information is almost impossible, I was wondering if there is anyone who can help me by letting me know if there are any any Drs in sydney that are currently treating lymphatic diseases (not in hospitals), Josh is treated at the new childrens hospital but I would like to find him another good Dr who can help us, I hope somebody from the lymphoedema support group can help as I have no were else to go, and have search for three years now....... Rhonda Seven Hills, NSW Australia -Saturday, October 21, 2000 at 12:08:28 (EST) Sadly, Josh has passed away and is now at peace. Editor. After breast cancer surgery I have lymphoedema in my hand and fingers - phyiso and exercise do not help - any suggestions Jenny Jones Newcastle, NSW Australia -Thursday, October 12, 2000 at 10:16:37 (EST) Hi! Dear Smile:) I live in Belfast, Northern Ireland and would like to contact anyone who could help me with my problem of lymphoedema in my legs.My doctor said nothing could be done. Dear Maura, Hi. I have lymphedema of both legs...i have a few questions that I thought maybe someone could answer for me: Dear Tiny, Hi, I have both legs in garments. What do other people do to stay comfortable during hot summers like Australia's? Helen McKay Toongabbie, NSW Australia -Monday, August 21, 2000 at 23:02:39 (EST) |
|
Lymphoedema Support Group of NSW Articles, news contributions - Liane O'Brien, Physiotherapy Dept. St. George Hospital, Gray St. Kogarah NSW 2217, Fax: (02) 9350 3075 Support - Barbara Smith, 9402 5625 Membership - $10 to Box 58, Wahroonga NSW 2076
|
