Starting this blog I wanted it to be an honest account of living with lymphoedema and the process of going through surgery. When you live with Lymphoedema you just want it gone.. It takes over your life 24/7 … It is a constant battle to keep it under control and live a “normal” life. For this reason when there is an opportunity for a cure we grab it with both hands. A chance at life with no compression garments, no MLD every day, no bandaging, no infections, in fact a life free of Lymphoedema and the physical and mental anguish it brings. This is why we opt for surgery and the chance of a new life. We throw ourselves out into the darkness and hope for the best!! However what we find is that everyones results are different. Some fast, some slow and some very slow! We find there are hurdles along the way. We find that the emotional toll is more than what we expected. This is Sue’s latest update which I have shared in her own words, please send her your support and encouragement as she is struggling at this time.
“I wanted to report to you on my doctor’s visit yesterday. This was with the lymphedema specialist; the surgeon I will see next Thursday. To put it mildly, I was very disappointed in my progress. My leg, according to the doctor, was the same or worse. There is a lot of pitting in the foot and the measurements have not decreased, despite a month of therapy and daily once or twice a day use of the compression pump. I do have to put some of the blame on my own shoulders, as I should have gone with the compression bandaging, as the doctor and my therapist recommended. But being that I work in a professional office, I thought it would be easier to wear the Reid Sleeve and take it off only to go to lunch. But this was not a good idea. So I am now in wraps all day with the exception of removing them to shower. It is not easy walking around in them, especially when I have to go food shopping, do laundry, clean the house, etc. But I have to bite the bullet and do my best. I am very discouraged as I am not seeing one bit of change in my leg. No knee cap, no bones in the feet, no ankle, the back of the foot is still puffy and unattractive as well.
I wish I had good news to report. I do not know if my surgeon will order any testing for me. I know with the insurance denials he may be reluctant to send me for expensive testing. I hope he will at least listen through his stethescope to see if there is a pulse at the site of the transferred nodes. But I don’t know.
I am doing my best to hang in there, but it is not easy right now. I do not regret getting the surgery as it at least offers some hope to some people, so I don’t have regrets about that choice.
I will report again after I see the surgeon.” From Sue
Thank you Sue for sharing with us this honest account of how you are feeling. I can relate to it totally… We have to remember the stories we see on the TV and in newspapers are only the success stories, that it is only recently the doctors are documenting their results. There is also far more experience with surgery for arms and it is therefore showing good results. However I still feel that that surgical intervention offers help for the future for both arms and legs. This includes liposuction, lymph node transfer and Lymphatic venous anastomoses. The progress maybe slow but we will get there eventually and by writing this blog people will have a better understanding, from a patients point of view.