Times are tough…. Sue’s update


Not so easy times.. Google images

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 just what to be free of Lymphedema.. Google images

“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.


I am so fed up with this… But what else can I do.. Google images

11 thoughts on “Times are tough…. Sue’s update

  1. I have just recently found this site and Sue’s plight. I know how discouraged she must be. It was certainly a lifestyle change for me for four years. I am wondering how long she has had lymphedema and is it in both legs or one? If it has only been for a short period of time I might be able to offer some encouragement. I have had it in my left leg for six years. For the first four, I was dilegent with MLD and the exercises in the morning and at night. I bandaged every night and I wore compression stockings in the day. My knee cap was hidden, my ankle was quite swollen no matter how compliant I was. I visited a therapist for 2 week durantion several times with limited results, Two years ago, I began swimming laps in an indoor community pool, for 45 minutes two times a week and working out with weights two days a week. My knee cap and ankle have reappeared. I no longer do MLD but I wear a
    velcro appliance instead of bandages at night and always a compression stocking during the day (and when I swim and work out as well) I am not sure if it is the exercise or time but lymphedema no longer rules my life. Is there an in door pool Sue can access?

  2. Thanks so much for all of your kind words of support. I definitely need them right now. Sherry in answer to your question, I have had lymphedema since January of 2008 (one year after cancer surgery with removal of 15 lymph nodes in my groin). I really really appreciate all of the advice everyone is sharing. Thanks Helen for posting my update. I apologize for sounding like Debbie Depressed! I have hope and will hang in there! Sue

  3. So sorry things are not going better, I know how discouraging the whole lymphedema issue is.

    As a lymphedema therapist, I HIGHLY recommend bandaging. Even if it is for 8 hours at night. Bandaging is more effective than garments, because the bandages are adjustable according to what kind of a day your affected limb is having. I am also pro-swimming! I am new to this blog, so not sure if these things have been discussed – kinesiotape can be a very helpful adjunct to compression. Supplements? Although not “proven” there are some supplements some of my clients find very helpful. Here is a link to the National Lymphedema Network’s position paper on the treatment of lymphedema. If you search for supplements, you’ll find the paragraph where they mention several supplements: http://www.lymphnet.org/pdfDocs/nlntreatment.pdf

    There are garments by Circaid (the Juxta line) which are bandaging alternatives and can be worn like bandages – 24/7 – and they are more adjustable than regular garments. Several of my clients are extremely happy w/ these garments (I am not affiliated w/ the company!).

    Good luck – hope you see progress soon.

    • Thanks Jill i will pass this on to Sue but I am sure she is aware of many of these things having been treated since 2008 for her Lymphoedema.. The surgery is her hope for a better outcome in the future but the progress is very very slow which is hard to cope with. I will also look up the site you recommend. Thanks. Helen

  4. Pingback: How is Sue? At last some news… | My Lymph Node Transplant

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