Great News.. Lymph Node Transfer going well!!

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This time a year ago I was preparing for my Lymph node Transfer or as I called it “My Lymph Node Transplant”… March 14th 2013 was surgery day. Things did not run as smoothly as I had hoped, after nearly nine hours of surgery I returned to my room, bloated all over, in pain and very uncomfortable, ready to fight all the staff due to the effects of anaesthetic!! Tubes out of everywhere, drains in the surgery sites and still nil by mouth till the next morning, so I could go back to surgery if there was no blood supply to the transferred tissue!!! My daughter wrote about this long day while my family and friends waited for news in the post called “The Big Day” . These are such clear memories for me. I remember laying there thinking, What have I done to myself? Why was I so crazy as to put myself through this? I am all swollen up I have made my Lymphoedema worse!! all these thoughts were buzzing round my head. Then on the second day my temperature went up and the area round the newly implanted nodes was red and hot, cellulitis had hit!!! This was very scary as the infection could destroy the transferred tissue and enclosed nodes. There followed a two-week stay in hospital on IV antibiotics and when I was allowed home another month of oral antibiotics. Three months after my surgery I had an ultrasound to see if any nodes had survived the infection. I was so thrilled when it showed one and maybe a second one… Phewwwww!! It was difficult for the technicians to see as there was still a lot of surgical swelling.

Then we come to today, as this is nearly one year post surgery, I was due another ultrasound. I had felt there was some improvement in my lower leg but I have lost all perspective as to what my leg was like. I thought maybe I was just imagining changes!! I am always anxious before any scans or tests and these are no different, especially when this was elective surgery and if there are no nodes then it would all be for nothing. The technician was quite serious and said, “Do you know this is experimental surgery?” I thought oh no he is preparing me for bad news, then his face lit up and he said, “There is one and there is a second and maybe that could be a third.” He did look quite amazed and me I wanted to burst in to tears I was so relieved and happy!! This year has been such an emotional roller coaster it was good to have positive news.

My Lymph Node Transfer / Transplant is on track. The nodes will continue to grow and create new Lymphatic vessels. It is just so very exciting that this new surgery will shine a light at the end of the tunnel for everyone with Lymphoedema. The more surgery and more experience these surgeons have the better this will become. Thanks Dr Quan Ngo for allowing me this opportunity and to Macquarie University Hospital for allowing me to be part of their research. I see Quan next week and will have measures done and an L-Dex reading as part of the research program. At 18 months and 2 year I will have more measures and scans to check progress.. It is a slow process but this is heading in the right direction!!

I would also like to thank EVERYONE who has and is supporting me, my friends and family. To Jennifer who had her Transfer done over a year ahead of me, she has been my guiding light each step of the way. Jennifer was able to tell me what to expect, when I got dishearten she would say, ” Just wait it will be ok!!” To all my friends who have Lymphoedema, you are the people I talk to and you really understand where I am coming from!! To those who have had surgery after me, “Yeh  it works!” To my Husband for putting up with some major mood swings over the past year, a big hug to you. ❀❀ To everyone who reads my blog and has helped it to grow and become something very special to me..

THANK YOU ALL πŸ˜ƒπŸ˜ƒ
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47 thoughts on “Great News.. Lymph Node Transfer going well!!

  1. Hopefully the start of better things to come!! β€β€πŸ˜„πŸ˜„any improvement is a plus. A big day. ….

    • Buenas tardes a usted Senora . Mi nombre es Lisset pascual y tengo el gusto de dirigirme a usted mediante este medio , para primero que nada bendecirla y felicitarla a la vez por ser una persona de mucha valentia, y coraje al decidirse a dar el paso tan importante en relacion a su salud, y de echo todo ha estado evolucionando bien que es lo mas importante de este transplante tan delicado y riesgoso por lo que he podido leer e interpreter en su comentario que recibi en mi correo , aunque la que le escribe es similar a su valentia y mas por mi sanidad ya que sufro hace 4 anos de piernas inflamadas despues de una operacion pelvica en el 2009 cual a las 72 horas se present este cuadro clinic donde comenzo piernas pezadas , retencion de liquidos, pesadez e inconmodida al permanecer largo tiempo de pie o largo tiempo sentada, enrrojecidas, caliente , piel tensa , brillosa y finalmente aqui en Miami Florida donde vivo me sometieron a varios estudios invasivos de todos tipos como Doppler, ST Scan MRI , Lymphocintigrafy y otros dando un diagnostico final que tengo una insuficiencia venosa Tiny por mal funcionamiento de alguna o algunas valvulitas en la extremidad inferior haciendote ya este problema no en la pierna derecha que fue donde comenzo , sino al mes de operada se me hizo bilateral a la pierna izquierda. Entonces pues le deseo lo major que logre por complete su sanidad total y que se le cumplan todos sus deseos y planes en su vida , cordialmente de mi parte para usted. podria usted darme la forma de contactar con el Doctor que le hizo este procedimiento de tan gran dedicacion e importancia. Se lo agradecere mucho tengo 42 anos y luzco pero mucho menos, y he sufrido mucho hasta hoy aun que le escribo, porque si algo yo cuide en mi cuerpo fueron mis piernas y mira hoy me encuentro en esta condicion inflamadas , reteniendo liquid, pesadez y usando medias todo el dia de compression , solo descanzo de ellas cuando voy a la cama a dormer en las noches. Gracias que Dios cuide mucho de usted y derrame sanidad sobre su cuerpo. Bendiciones .

      • Thanks you much for your kind words.. I used the google translate to help me understand… I am so sorry that you live with Lymphoedema it is such a difficult problem to have. My surgery was done in Sydney Australia but there are surgeons in US who are doing the same. It is very new but I think over the next few years we will see great improvements in this area.. Thank you for reading my blog.. Take care …Helen

  2. Alright Helen! What a good news! This i so good to hear, very hopefull news and your patience is rewarded As It Should! You deserve it…i am looking forward to your post in one yearπŸ˜‰ XXX

  3. As I read your post today I have flashbacks to my first surgery which was March 13, 2012, I too remember feeling the same way after my own 9 hr surgery. “Did I do the right thing? Did I make everything worse? Will I get a raging infection?” All these thoughts racing through my head as I am dealing with the pain. Dr. Becker comes in and says that everything went fine, all good! What a relief!! Helen I am so happy things are going great and right on track! Yes it is a slow process but so worth it in the end!!! So heres to you and your continued success!! Cheers!!!πŸ™‚

    • March must be the best month of the year!! I feel we are all so lucky to have this opportunity and to start to see results is very exciting!! Thanks for your support and encouragement πŸ˜„πŸ˜„

    • No it is available in many places now… Dr Corrine Becker has been doing it for years in Paris and New York and many surgeons have learnt from her… Problem was she kept no on going follow up or research results!! So Drs are doing this more to monitor progress.. My surgery was in Sydney, Australia and the unit was set up by a Breast Cancer specialist to give help to his BC patients who have LE.. Plus including people like me who had a a gynaecological cancer.. Anyone can be assessed to be part of the program and then become part of the research .. I therefore am monitored more than usual at six monthly intervals to document results… It is exciting..πŸ˜ƒπŸ˜ƒ

    • Thank you ..it has been just the last few weeks I am thinking at the end of the day my ankle still looks good not all puffed up.. Such patience is needed when you see no changes for so long… I look forward to hearing how you go when you visit NY πŸ˜ƒπŸ˜ƒ

  4. Helen, this is such wonderful news! The worst is behind you and you can feel encouraged that your leg and life will continue to improve. Thank you for all you do for our lymphie worldπŸ™‚ xo

    • Leslie it was such a relief as I had seen little changes but had not dared to hope it was all progressing well.. You spend so long with nothing happening you start to doubt that the nodes are there and growing!! I nearly burst into tears !!! .. πŸ˜ƒπŸ˜ƒ

  5. Great news!! This is wonderful. Your story was heartfelt and very uplifting. Good luck and keep up the fight.

  6. Hi Helen, I have been following your blog for a while now and this latest post has made me smile. I am delighted things are progressing so well, I can just imagine that you must be floating! I am mum of 2 gorgeous children, one of whom was born with Primary Lymphoedema in her legs and feet. She will be 2 next week. Your post makes me feel so positive about what the future may hold for my little girl. I am currently starting a blog about our family life so will send you the link. I hope to be up and running soon. Thank you for helping us see that the future of Lymphoedema may be bright!x

    • I am so glad that this helps you … Yes it does give hope to the future… Please send me the link when you start so that I can share it with others and connect with the community … I wish you well πŸ˜ƒπŸ˜ƒ

      • That would be great. Thank you. I will be in touch and look forward to your next post following your next appointment.x

  7. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  8. Thank you for trail blazing Helen, it’s only because people like you are willing to try these procedures that we all eventually benefit. Long may your successes continue xoxox

    • Thank you so much… There are times when I thought I was a little crazy but where ever this leads to I will never regret my decision. In a year I have already seen the progress being made by the medical community to try to achieve better outcomes for those with Lymphedema … πŸ˜ƒπŸ˜ƒ

  9. Hi Helen, Just to let you know I am up and running! If you would like to have a look and spread the word that would be great x

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