One of the joys of writing this blog is bringing people together, being able to support them while they go through the process of surgery for Lymphedema, both before and after. I love getting emails and comments with questions plus news of decisions made to have a Lymph node transfer, lymphovenous bypass surgery or liposuction or a mixture of all! Two weeks ago Jeanie contacted me with news that she would be having surgery with Dr Chang the next day..(http://www.uchospitals.edu/specialties/cancer/lymphedema-surgery/) She was feeling a mix of nervousness and excitement, which is quite normal given the surgery is elective and a huge decision to make. She had also wanted to share her story to help others in the future.
Jeanie wrote before surgery…..
“I’ve been reading your blog about your experience with the Lymph node transplant. I, too, am having the surgery (my LE is right leg and basically from the waist down) on Tuesday, May 6th with Dr. Chang!! I’m so nervous, and hopeful, ….yet scared beyond belief!
I had uterine cancer in december 1999 and the lymphedema started about 5 years later. I have done everything. Everything!
I hope you get this message – I just found your Facebook page….https://www.facebook.com/Mylymphnodetransplant?ref=hl
Thank you for your informative sites and pioneering soul!!”
“I am so happy that I was able to connect with you. You have been such a pioneer – and I am so grateful for your experience and your wonderful way of putting ‘words’ to all the complex emotions that go with lymphedema and now the lymph node transplant decisions. I am feeling very very nervous…and a little excited about the surgery. Dr. Chang is taking the lymph nodes from the neck area on my left side. I don’t know how many places they put the nodes into my leg. I will find that out this morning, I think. I believe he mentioned 6 or 7 areas?…..I’m not quite sure of that right now. He’s also doing a lymphovenous bypass at the same time.(https://lymphnodetransplant.wordpress.com/2014/04/10/dr-chang-improvements-in-microsurgery/)He said the surgery can take 7-9 hours. That part probably makes me the most nervous! I’m a little scared of anaesthesia for that long. ….So, all prayers are most appreciated! 🙂
I would love to put my information on your blog. Please feel free to add any of my I formation if you think it could be helpful to anyone else. The decision of whether to do the LNT or not was difficult, but ultimately I decided to pursue the surgery when the reality of my leg continually getting worse was harder to face than the surgery. The entire right side (waist and abdomen) has started to get larger over the past couple years. My right side is approximately 1-3 inches larger than my left side..it gets worse at the top of my leg. …And I have been the most compliant wrapper, daily compression wearer and in the last 6 months – pump user! I have mixed emotions about the pump, but from what I understood, insurance is more likely to help out, if they feel we have gone through all the proper – insurance recognised – channels. I have been told that my insurance will pay half. I have received pre-approval, so I am hopeful they will come through for me. Insurance is always one of the most anxiety riddled areas for new technology…so, cross your fingers! I have blue cross/blue shield of Minnesota.”
Jeanie wrote two weeks post surgery….
“Thank you for touching base! It has been two weeks (yesterday) since my surgery. My stitches are still in and there is still a little discomfort at the incision sites, but over all – the pain isn’t too bad.
I think I can see a little difference in the lower part of my leg. Dr Chang did two Lymphovenous bypass surgeries in my lower calf and the transplant/transfer from my neck to the groin on my right side. They took the nodes from my neck, so I’ve got a 6-7 inch scar on my neck and at my groin! Adorable – not! The bypass areas each have about a two inch scar with stitches.
I can’t remember what it’s like from others who have had this procedure….but, after 2 weeks, I have to admit, at times I wonder if all the discomfort and inconvenience is worth it. I think it is….and I do know that all the results won’t be available until a year from now…….maybe longer. So,I have to remind myself to be patient. I am supposed to keep my leg elevated as much as possible (70-90%of the time) for the first 4 weeks…..And for the next couple weeks after that, just minimal activity….i.e. light walking and golf….no strenuous activity i.e. No swimming until at least 8 weeks out. Im trying to stay immobile and give the lymph nodes a gentle, non-gravity bearing environment to establish themselves. 🙂 ….even though I’m getting bored, I try to stay positive that this is the first stage of the journey.
Also, there is such interesting research occurring right now, with lymphactin….I think the future looks better and better. I would have loved to be able to have the lymphactin with the transfer….but, it isn’t approved for the U.S. yet. It is currently in clinical human trials. Do you know anyone who has had lymphactin with the transfer?
At this time I only have a little pain at my neck incision and at the area below the groin incision.
Thanks for staying in touch!!
If you hear anything new in the world of research (especially with lymphactin with patients who’ve had a transfer) …..please let me know.” Jeanie
Thank you so much Jeanie for sharing the start of your journey after a LNT and Lymphovenous bypass. These surgeries are so new but no one need be alone and there are now others to ask questions of .. One thing for sure is that it brings a roller coaster of emotions along the way!!! Plus much patience is needed for results… I hope that you will allow us to follow your progress over the next few months and years as it does so help those who follow behind!! Thank you so much..
If any one would like to contact me my email is firstname.lastname@example.org
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