Update from Jennifer

imageJennifer had a Lymph node transfer two years ago in New york with Dr Corrine Becker and Dr. J Levine and Dr Julie Vasile. The next step is maybe some liposuction to get rid of stubborn fatty areas… There has also been a suggestion of a second transplant to the lower leg but Jennifer is unsure of this. However at the moment struggling with the summer heat it is very emotional to see the leg swelling and she does wonder if one transfer is enough…

Jennifer says…
“I actually did very well in the extreme heat! Yes, this is a change from the summer before. I was surprised. I can’t say that the measurements have changed but the big difference is that my leg didn’t swell excessively though it was exposed to some extreme conditions. In fact, there were a few mornings when my ankle didn’t have the round donut ring look, but it doesn’t remain that way. I did hide a lot in air conditioning and only used the gym to do some exercising. Normally, I like to go out on the bicycle. My temperature cut off is 82 degrees.
That being said, 2 days ago, my leg was doing ‘okay’ then all of a sudden, I could ‘feel’ it swelling, more at the calf area and my joints felt achy and tired and swollen. It’s better in the morning after a night’s rest, but creeps back up during the day. So, I don’t dare go without compression, though I’d love to. This change in swelling seems to be cyclical or maybe because I had too much salt in my diet. I seem to be very sensitive to it. Drinking a lot of water and no salt does help.
However a few days later, for whatever reason, my leg is aching and swelling again. I can feel pain in my knee-joint and ankle and there is a familiar bursting sensation. So, this is making me very upset as I feel sometimes that the one transplant is just not enough to alleviate the symptoms entirely.
The top of my foot is full of edema, the ankle is more swollen than usual, and where my stocking ends at the upper thigh, it bulges and pushes the flesh into an unflattering donut shape. My calf area is definitely the problem area, noticeably bulging out and my ankles have some shape but are definitely wider than normal.
So, hot off the press…. A lot of ups and downs for what ever reason at this time..” Jennifer

Thank  you Jennifer for sharing with us and I hope that things start to settle down again for you….. What an emotional roller coaster the decision to have surgery puts you on!!


7 thoughts on “Update from Jennifer

  1. Jennifer–I loved your update–very factual–I have not had a lymph node transplant. I’m not sure if I need one but I want to do something more than the conservative treatments I’ve been using for the past year. As I watch some of the videos about the MLD and the wrapping and the measuring every day, I did all of that too-I was definitely driving myself crazy with the measuring. When I go to bed, I use the bio compression boot with the 8 chambers for about an hour each night. My insurance didn’t cover the flexi-touch. Then I sleep with a Solidaris quilted boot that goes up to my left groin. It’s very thick therefore, I sleep with a fan on (plus I still have hot flashes and that’s why the fan!!!), I have had the lymphedema in my left leg for 1 year….

    .As I read these messages, it’s so wonderful and comforting to have all of the input from people in all walks of life. This messaging back and forth has been better for my psychological health than any treatments I’ve ever received. I still have a 2 inch difference in my left thigh than my right one- my good leg is the right leg–my left calf is 1 1/2 inches bigger than my right one. I wear a 40 mm of mg compression stocking by Jobst under my scrubs to work every day-. I have a lighter compression stocking (recommended by the message therapist), which I wear under dress pants or a maxi dress because I don’t want the “bulk” under my regular clothes. The lighter compression stocking is made by Solidea-still beige BUT less bulk under regular slacks and less bulk in my regular shoes. I’m doing whatever I can to feel “normal” and wear what I used to wear but still not feeling real good about wearing a skirt or a knee length dress.

    -I’m still so distressed and depressed over this whole aggravating event but what can we do but kick butt and go on sharing our heart-felt experiences with each other? I am thinking of a lymphaticovenous bypass procedure being done by a Dr. David Chang from the MD Anderson cancer center in Houston at some point. I’ve had the lymphedema for a year and i’m wondering what my options are.-I can’t wear a skirt or a knee length dress because I’m very self- conscious of the difference of the diameter of the two legs and I’m still not ready to throw out any of my BL shoes (ha ha BL means “before lymphedema”) I am being optimistic in thinking that one day my BL shoes will fit again..;.Luckily, for me, I do not have any pain in the affected LEG–I still go and do the things I love to do and I’m very active but all of the care is tough-Im wondering how will I be able to pull the thick jobst stocking on with the 40 mm of mg on when I’m 80 yrs old?????I sit on the floor now and use rubber gloves to pull it on in the am before I go to work. it’s a bit difficult and I work up a sweat so I keep the fan on me while I do it….Also, I was advised by the lymphedema therapist to purchase the “backcountry” compression tights for running or working out…

    Hang in there girlfriend—we can get thru this—no one said this journey would be easy….

    • Hi Elizabeth… I have past this on to Jennifer in case she misses it on the blog… If you are thinking of surgery with Dr Chang I believe he is moving to a cancer centre in Chicago but his staff can tell you.. I have also heard that the sooner the surgery is done when the Lymphedema starts the better while the Lymphatic vessels are still ok…..Given time the more experience the surgeons get the better the surgery we hope….. But still good to go and have a chat and see what they recommend as you are under no obligation but you can find you options..Helen

      • Helen,
        I want to make sure the surgeons are well versed and experienced in what they are doing before they do the lymphaticovenous bypass or a transplant ….I need to get an evaluation of which procedure would be best for me. I have about a 1 1/2 to 2 inch difference in my left thigh compared to the right one. my left calf is about 1 and 1/2 difference—I/m trying my best to stay positive. Sometimes I feel maybe I should leave well enough alone since nothing has increased or decreased and I have reached a plateau. Tired of all of the efforts for so little change in the last year.

        • It is probably good to sit on the side lines for a while and watch for new results and articles.. The big change will be if they pass Lymfactin for use during the surgery as this helps the new nodes to grow but that is some years away.
          Don’t give up on all the work you are doing as even without surgery the Lymphatics grow and find new routes when one area is damaged.. Over the years I saw my Lymphedema improve,from all the work but my problem was reoccurring infections which got the better of me in the end … My leg looked good and well cared for but the infections would come up and then it was 10 days IV antibiotics.. This just stops everything.. One of the Symposiums from LRF the doctor speak of different “types” of Lymphedema … That there are some that do not have large limbs but get infections and those who swell badly. …. Yes there are days when I lie in bed not wanting to get up and start all the “work”… I just throw in the towel for the day and go on strike!! After the surgery it is still a long drawn out process but there are results just very slow…

  2. Jennifer, how was your care at the hospital in NYC when you had your lymph node transplant? I’m having it done in 3 weeks and just wondering about the hospital, staff, and care. How long were you in the hospital and how long did you have to stay in NYC. Also, how long was the surgery? So sorry for all these questions. It’s nice to be able to actually talk to someone who has the same surgeons and stayed at the same hospital.

    • Kimber I will pass this on to Jennifer in case she misses it on the blog… Time is ticking on for you .. I hope you are going well with all your preparation and you are not to anxious… Will be thinking of you xxxx

  3. Pingback: News from Jennifer … March 2014 | My Lymph Node Transplant

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