I have Primary Lymphedema .. Update

imageThis is an update from Kimber the night before she is due to have two Lymph Node Transplants to treat her Primary Lymphedema. Kimber promised to keep us updated  through this process and so I share the latest post with you. This is a link to her first post in case you have not read it https://lymphnodetransplant.wordpress.com/2013/08/07/i-have-had-primary-lymphedema-since-i-was-six-years-old/
I am sure that I can say from all of us that we wish Kimber all the best and may she come through this with flying colours. Thank you so much for allowing us to share your journey in the quest for better outcomes for those with Lymphedema….

Kimber’s words…

“Just a quick update as it’s the night before my first transplant. It’s almost midnight and I can’t sleep due to the ton of emotions and nerves that I’m currently feeling. About two weeks ago I received a call from Dr. Vasile asking if I was willing to have two lymph node transplants instead of one. At first I was hesitate but after we spoke at length I agreed to do it. So, tomorrow at 7:30am I’m having the first transplant along with a de-balking procedure on my right leg. Then on Tuesday I will have the second transplant on my left knee. I know this is a lot to have done in a 24 hour span but I’m completely up for it and feel it’s in my best interest. I’m excited for what I believe could potentially change my life in a much positive way.

More importantly, I have drawn so much strength from all the support I’ve been receiving. From words of encouragement to people who follow Helen’s website along with my family and friends. I’ve never felt so loved and humbled in my entire life. It makes me feel even more confident about these procedures. I promise to post another update in a couple of days. So, let’s hope and pray I can get this lymph nodes up and running the way they should have always been from the start :)”

Good luck over the next few days Kimber, we will be thinking of you….

19 thoughts on “I have Primary Lymphedema .. Update

  1. Dear Kimber,

    I am really stunned with your courage! It sounds really crazy to have both lymph node transfers in 24 hours, as I am already nervous to have one…
    I wonder why they called you to have both almost in the same time. But in a way it sounds logic, if you are dealing with a big problem, it needs big solutions. And maybe two in the same time will give your leg the boost in one time! I wish you all the best with your surgery, and even though I never met you in person, we both have this le in common… Although off course every single story is different. But my thoughts are with you and as a brave person you deserve the best outcome!!! Take care and have a good recovery! Thank you for your update.

  2. You are in very good hands! I had my transplant surgeries last year. Dr. Becker, Dr. Vasile and Dr. Levine are amazing!! Do everything they say and listen to your body because its very fragile for the first few weeks after the transplant!! Best of Luck 🙂

      • I have lymphedema in my right leg due to cancer, all nodes were removed in groin. The first surgery they took the node from left groin and transferred it to the right groin. They also removed a lot of hard tissue from my thigh. My leg was so deformed and huge. 3 months later I had the 2nd surgery and they removed the node from under my left arm and transferred it behind my right knee. They again removed hard tissue from the calf and shaped my leg. I cannot believe what my leg looks like now! Its incredible!! I got results right away from just the reshaping. The transplant takes awhile to see the results but I do have to say my leg doesn’t “blow up” as fast as it used to and no infections in over a year and a half! I did have a 3rd surgery but that wasn’t a transplant it was a huge surgery to removed 11 lbs of hard lymph tissue from my stomach/groin area. It had gotten extremely bad from using the pump 😦 and it was hard and sometimes very painful. It would look like I was 9 months pregnant. So glad I had that done so worth the pain!!!

        • Thank you for sharing as it helps others who are looking into this… It must have made a huge difference to your life… The removal of the hard tissue makes such an improvement… Do you have to wear compression all the time still ? I have heard that about the pumps that it can push the fluid and tissue to the abdomen.. I had a nodes taken from neck to left knee.. Mine is left leg due to cancer treatment.. Slow progress but I feel it clears easier and does not swell as much as before.. As you say you do feel fragile for quite a while after… My knee is still settling!!! Helen

  3. Kimber wishing much luck and success. I want to share this with you, and the others. Calm is the key; like love is the answer. Spent this weekend in nature, flowing with yoga and surroundered by wonderful friends and the focus was on “calm.” Calm is what puts us at the bindu (center) of the moment; it is what balances us, and balance is needed to stay present and joyful. It is also what keeps our stress hormones down and our GABA levels up so breathe and see the positive results of your courage.

  4. Music is moral law. It gives a soul to the universe, wings to the mind, flight to the imagination, a charm to sadness and a gaiety and life to everything. It is the essence of order and leads to all that is good, true and beautiful.

    Plato 427-347 B.C.
    My mom told me this when I had to go back into surgery. Set those feeling free so that you can hear the music and dance to rejoice the splendor and magic that lies in God’s universe. Best wishes, can’t wait to hear the good news…JBC

  5. My best to Kimber. I know where she us, since we share the same Doc. I was at the same hospital etc My only advice is the same advice. I give myself….Patience! I believe we will all be healed by this new procedure

    Sent from my iPhone

  6. Pingback: Kimber.. Five weeks post surgery for Primary Lymphedema | My Lymph Node Transplant

  7. Pingback: Guest Column: Primary Lymphedema since I was six years old | Lymphedema Diary by Britta Vander Linden

  8. Its very disheartening to be told that unless you are a nurse, you can not go anywhere to learn the massage needed. I have spent years watching what was once my life, draining away:( My husband feels so helpless.We do not have insurance and spent over 10k on professional therapy which never led to my being able to wear compression stockings. We want to learn PROPER massage.This is a “LIFER”. Why cant we be taught and certified for the massage? I just dont get it. I have machine here that now I am afraid to use. I now have the belly apron.Its disgusting and painful. I have huge lumps on my thighs. All from IMproper massage of the toxins. Its truly a living hell. 😦 I cant be the only one who feels this way. How can we go about CHANGING it?

    • It is important to build awareness where you live so that others understand the difficulties… It is terrible that you have to live as you do with pain and discomfort… Have you tried seeking help again as sometimes things change and you could be eligible for more treatment…

  9. Pingback: Kimber’s third LNT… And Update | My Lymph Node Transplant

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