My Positive Mojo is Back!

Surgery

Surgery (Photo credit: Army Medicine)

I suggest that those of you who get a little queazy with medical details should maybe not read this post, as I will give details of surgery!

Firstly I am still in hospital and only allowed to the bathroom keeping my leg straight, otherwise sitting with leg up or on the bed. At the moment I am only allowed to bend leg to 30 degrees, let me tell you getting in and out of bed is a real trick!!! Cellulitis appears to have made its last stand by coming up around the knee incision, so some very strong IV antibiotics. I am tired but in no pain, as areas appear numb, but as of yesterday my sense of humor returned and I think my “positive mojo” is back! In the last couple of days I had truly thought myself a lunatic to go through with this!

I have said before that every surgery is different and every doctor has a different plan, due to the needs of the patient. This is the story of my surgery, my experience, as the techniques are so new world wide there is no set procedure, so this may not be the norm but a way towards it.

The last thing I remember before surgery started was the ” Sandman” setting up his lines and then nothing, no pretty pictures or sweet dreams. Waking 8 hours later I felt like shit! I was bloated all over, when you have lymphoedema this is a nightmare, I felt scared,  lost and my mouth felt like a sewer! I had drains, catheter and IV fluids, I was still nil by mouth so no water just an ice cube! That night is a blur, until the doctor came the next morning to explain how the surgery had gone and what the next steps were to be. The first thing he did was to put a small machine on my knee over the transplant to check there was a good blood flow, the reason for nil by mouth, as if no blood flow it would be back to surgery. Imagine my joy when I could hear a strong whooshing or pulsing sound, the doctor was happy too! At last I could have a shower, food, drink, of course my own nighty and the catheter gone. Being able to go to the loo by yourself is one of life’s little treasures when you are in hospital!

The surgery had gone well, though I should now call it a Lymph Node Transfer, as Lymph nodes are transferred from one part of the body to another. The source of the nodes in my case was the neck, so far I have not seen the incision as it is well covered but it is near my collar bone. The doctor said he has got a “nice little bunch of nodes” but it had taken longer to harvest them with a vein and artery as my vein was different anatomically to the norm. An incision was then made down the inside of my left knee, about 10cm. Using micro surgery the bunch of nodes were attached to their new vein and artery, over time these should start to work as “filtration stations” and to form new lymph vessels. However this is a long process and improvement can be seen over years as lymph vessels grow slowly. After the surgery my knee looked like a football and the leg swollen, it is difficult to tell what is caused by the surgery and what is the existing Lymphoedema, I do think it may have gone down a tiny bit but that could be my imagination!

Due to the Cellulitus I have gone two steps forward and three back, so I am sitting waiting for the doctor to visit today and see what next. Thank goodness for the internet and my trusty iPad that keeps me in contact with the world. My time revolves around breakfast at 8am, lunch at 12.30pm and dinner at 5pm! You know you are in hospital when dinner arrives at 5pm!

Lymph Nodes of the head and neck, from Gray's ...

Lymph Nodes of the head and neck, from Gray’s Anatomy (click image to enlarge) (Photo credit: Wikipedia)

22 thoughts on “My Positive Mojo is Back!

  1. Yay! I’m glad you are inching your way along. I love it when I get to use the hospital bathroom, too. One more step to independence and going home! Finally, positive mojo is powerful and I’m glad you’ve got yours back.

    • At the moment i am here till the weekend at very least… Responding well to antibiotics but cellulitis has set things back a bit… Dr is being very careful which i like…

  2. First thing every morning I log on looking and hoping for your blog. I was truly worried after reading your first blog after the surgery but so happy to read your positive attitude is back. My surgery is scheduled for April 12th so I am avidly reading about your experiences. Thank you so very much for this blog. You are truly an inspiration and a guiding light to those of us having or contemplating this new procedure. I look forward to reading your updates. Take care and God Bless you for your courage. I pray for your continued recovery. Bridget

    • Had some days when just could not write as head to fuzzy but felt clearer today… Took me a while but got it posted…. Feel stronger everyday but will take a while … I love your support too…

  3. New York New York! Your pioneering and concern for others is bearing fruit quickly. Your informative blog will help many as they journey through this poorly documented issue . All my love

  4. Great to hear your positive mojo is back! Attitude can make all the difference. I look forward to following your recovery and path to better health! Sorry to hear the lymphs are slow-growing though! I hope you have more patience than I do! 🙂 My best to you!

  5. Reblogged this on My Lymph Node Transplant and commented:

    I thought that I would reblog this to remind myself of how far I have come and for those of you who are new to my blog… this is where it all started!! Hospital was not the best for me, due to an infection but now I am building fitness and hoping those little nodes will grow and create new pathways. I am now 3 months since surgery and wear a compression stocking each day and Ready Wrap sometimes.. lower leg looks good and knee and lower thigh gradually improving.. At six months I will have an MRI and Lymphescitagraph to check progress. I also have regular MLD and Deep Lymphatic Drainage… It is slow progress but in the right direction!!!

    • Hi there:
      I too have left leg lymphedema set in after cancer surgery. 6 yrs now. I work hard to keep it under control, but can feel it gradually progressing. I wanted to ask you two things: what was your leg like before your decision to have this surgery, and how did you decide upon a surgeon and/or the particular technique of lymph node transfer vs microanastomoses of the lymph vessels to the veins in the leg? I am following this with great interest, and trying to decide if I should proceed, simply to try and make management of the lymphedema easier for the time when I am older and will not be able to easily care for this leg in the intense way that I do now.
      Thanks for your thoughts on this, and I truly respect what you have done, and appreciate so very very much your candid blogs!
      Take good care!

      • I live in Australia so only one Doctor was doing the surgery… I went to the clinic and was assessed as suitable for Lymph node transfer… It was the doctors decision as to what I should have… My leg was not very big but I had problems with many infections and the hope is this surgery will help this..it is also hoped that the Lymphoedema will improve to make care easier..but it is very slow progress… Where do you live ? In the USA there are a few Doctors… I feel over the next few years this surgery will improve for the legs …. as they have more experience with arm surgery and that is going well…legs are slower to see results.. What I notice is every doctor has a different protocol at this time so I hope eventually they sort out what is the best procedure overall.. It is interesting times …very new.. From what I gather most doctors respond to email questions… Also every patient is different so it is an individual case as to what is needed and some times a combination.. Good luck .. Helen

        • HI Helen: thanks for your reply. I live in Canada. No docs doing this here. I would have to travel to USA or Europe to do. But I would probably go to US. Thanks for your note…keep up your positive mojo! its all going to work I think! Debbie

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