Kimber’s third LNT… And Update

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Kimber has been updating us regularly since her original Lymph Node Transfers last year in New York. Kimber has Primary Lymphedema in her legs and has lived with this since a child. The lymph nodes in Kimber’s entire body have been mapped by the use of a specialist MRI and are normal in the upper body but the nodes are missing in her legs. It is very important with Primary LE that these test are done so that nodes are not removed from an area that is short of nodes. Therefore only surgeons who have access to these tests should perform this surgery on someone with Primary LE.. This will be Kimber’s 3rd LNT.. Below is Kimber’s latest update before she heads of to New York for surgery..

“It’s been over a year since my last update from having two LNT’s back in September 2013 with Dr. Becker and Dr. Vasile in NYC. A couple of positive and interesting things have taken place since those surgeries. The most positive is that I’ve had no hospitalizations due to those God awful staph/cellulitis infections. I should have been in the hospital six or seven times by now. I can’t even begin to tell you how life changing this has been. The benefit of me not living in and out of the hospital and not just for me but for my husband and our three kids as well…kids have their mother, husband gets his wife, and I finally get myself. Not only have I managed to avoid the hospital but I was also able to start working part-time. I haven’t been able to work in over sixteen years because of having chronic infections pausing my life and those around me. After I complete the next two LNT’s that are needed, my next goal will be to eventually transition to working full-time. Another positive aspect, although a minor one, is that I am able to ski again. I had to stop skiing about twelve years ago due to the LE as it truly had taken over my legs. Along with all the extreme swelling they also felt like tree trunks and I couldn’t fit into my ski boots no matter how hard I tried. Skiing last winter with my family felt so exhilarating that at one point when I reached the bottom of the mountain tears streamed down my face. I truly couldn’t believe I was able to do this with my family. I also noticed this past summer it was a little easier with the heat. My legs are definitely still swollen but I was surprised how they responded better as long as I was wearing my compression stockings. I will never be able to go with out compression but the legs didn’t get as large in the heat and humidity like they have in the past.

The interesting aspect during all of this was having to switch surgeons. Unfortunately, Dr. Becker no longer has her license to practice medicine in the United States. Not because of her own doing but the laws are completely different in the U.S. and Europe. From what I understand, when she went to reapply for her medical license wasn’t approved. It was upsetting and shocking how things turned out and took place. However, because of Helen and the wonderful women who I’ve met through her that are near and dear to my heart (you know who you are), they helped me to keep my head up and to remain focused on the goal. These women gave me wonderful advice and encouraged me to set up an appointment with two surgeons who also perform LNTs. Dr. Smith and Dr. Dayan are top surgeons in their field, come from respective hospitals in NYC, and they’re both extremely involved with LE and LNT’s. I can’t thank Helen and our friends enough. When I thought all hope was lost they stood beside me and lifted my spirits and helped me move forward so that I could continue my quest for better health as I still needed two more LNT’s.

I’m about to have my third LNT this Monday, December 15th, in NYC with Dr. Mark Smith. I’m having lymph nodes removed from the neck and transplanted to below my right knee. He’s also going to try to “clean up” the top of my right thigh from botched surgeries that I had when I was a teenager. So, tomorrow I leave for NYC and surgery on Monday morning and be a temporary resident for three weeks before I’m able to return home 🙂 Just like last year, I’m a BUNDLE of nerves and will be happy when it’s over. I know I’m in extremely good hands with Dr. Smith and believe things will turn out very well.

I feel extremely blessed and never take for granted about my lack of hospital stays. LNT’s are still extremely new and cutting edge in the medical world, but there isn’t a doubt in my mind that it’s due to this as to why my health has improved, greatly…fingers crossed that things can only keep improving in this battle called Lymphedema.” From Kimber

Thank you Kimber for sharing this with us…I will be thinking of you on Monday and wishing you well xxxx

These are some links to Kimber’s previous updates

https://lymphnodetransplant.wordpress.com/2013/08/07/i-have-had-primary-lymphedema-since-i-was-six-years-old/

https://lymphnodetransplant.wordpress.com/2013/09/23/i-have-primary-lymphedema-update/

https://lymphnodetransplant.wordpress.com/2013/10/30/kimber-five-weeks-post-surgery-for-primary-lymphedema/

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9 thoughts on “Kimber’s third LNT… And Update

  1. I’m holding your hand Kimber…you are in good hands…lots of us from all over are sending love!!
    Thank you for your post!! I’ll be in touch.
    ❤️Deb in New Mexico

    • Kimber-I’m thinking about you today and praying you have a speedy recovery. I too am having the LNT in Chicago with Dr. Chang-I had a lymphscintigram in Sept and really want to get this whole process going and over. I didn’t know which other surgeons did this procedure but while reading these messages one day I read Dr. Chang’s name mentioned repeatedly and I started doing the research. I went to Chicago and met him after my lymphoscintogram.–I wanted to hear the measurements in my left leg will decrease and the legs will start resembling each other. I wanted reassurance since I am naturally nervous about making matters worse in the donor site (neck). My left leg is about 2-21/2 inches bigger in the thigh and 2 1/2 in the calf than my right leg, which is still normal. I am just concerned about removing lymph nodes from a site and perhaps having swelling at some time in the future at that site. Oh the frustrations with this condition–You are amazing to have come so far in this treatment regime–Thank you so much for sharing this with us. Good luck to you in your recovery. Liz

      • I will make sure Kimber sees this message. No one that am in contact with has had LE start in the doner site. They say we haveots if nodes in the neck. Good luck with your surgery and keep us posted

  2. Best of Luck Kimber!! I am so happy for you and family! I too know how awesome it is not to have infection after infection!! Its been over 3 yrs since my last infection and I am beyond thrilled I have my life back!! Keep up the great work and love hearing your updates!!

  3. Pingback: Weekly Round Up: Getting Off The Hamster Wheel | Journeying Beyond Breast Cancer

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