When things don’t go right!

Lymph node Polski: Węzeł chłonny Русский: Лимф...

Lymph node Polski: Węzeł chłonny Русский: Лимфатический узел Nederlands: Lymfeklier (Photo credit: Wikipedia)

Cellulitis has been the bane of my life, for the last 11 years, at a time when I had hoped to be rid of it for ever it has reared it’s ugly head and maybe ruined the party! In saying that I am not really expressing the depths of my anguish or the fact that I find it very difficult to write this post.

On Friday I had an appointment with my doctor for a six week check up after my surgery. During the week I had been concerned that the knee was not reducing from the post surgical swelling and that the transferred nodes at the side of the knee were raised and firm to touch. The doctor was equally concerned and felt that there may still be some infection present and once again prescribed more antibiotics for the next month. This in itself would not appear to be a problem, but what I did not know is the infection can damage the transferred Lymph Nodes, causing theme to “die.” What a shock, this was a side effect I had not heard of prior to surgery, nor can I find anything written on this subject. The reality is that all I have been through over the last few weeks may all be for nothing. I find it very difficult to deal with this and though it is not definite yet I am very fearful that it will be so. I am to have an ultrasound at the end of May and see the doctor again on the 7th June, I will then know if there are any viable Lymph nodes present in the transplanted tissue.

I find that my emotions are very up and down at the moment, it has been hard to pull myself out of a black hole I fell in on Friday, however I have to keep moving forward. On the positive side I can start to do more exercise, I am allowed to do what ever I feel physically capable of which gives me some focus. My goal is to re build my fitness to pre surgery levels and to reduce the swelling in my leg back to pre surgery measurements. I am going to have regular MLD and have ordered a set of Ready Wraps for my left leg so I can work on this. I cannot change the results of the ultrasound but I can control other aspects of my life. Until the results are final there is always a glimmer of hope!! Well that is what I keep telling myself!! ( I can almost hear my counselling voice talking to me!!!)

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Lymph node photo Wikipedia

In starting to write this blog I promised to document my journey with Lymphoedema and “My lymph Node Transplant.” I wanted it to be a personal account rather than a medical one and to share others progress along the way. I wanted to bring together the community of Lymphies and bring some hope for the future, if not now then a few years time, every new surgery has to start somewhere. Think about when we heard of the first heart transplant, now they are common place. What ever the outcome for me I have no regrets in making the decision to go ahead with surgery, if I had not I would have always wondered if it would help. I really love writing this blog, it helps me and I will continue as the story is never over!

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Cockatoos feeding on berries.. On my walk today.. Photo Helensamia

14 thoughts on “When things don’t go right!

  1. Good luck Helen and hang in there – you are often in my thoughts, and I think it’s wonderful that you’re sharing your story! Fingers crossed that the ultrasound won’t be as you are fearing 🙂

  2. Hi Helen. Please never give up as you are an inspiration to us!!!!! My wife, Nikki & I are following you with hope for the ongoing success of this operation you have undergone for Nikki’s lymphedema in her left leg after radical cancer surgery many years ago. (Sounds familiar!!!!). Pioneers like yourself, break the ground and lay the trail for the rest to follow. We always believed one day these operations would be possible and it takes a brave soul to be out the front saying “Me First” not knowing what is around the corner, but just having a belief that you must try. Keep the updates coming, your progress is amazing!!!!!!! Pete & Nikki M (Melbourne)

    • Oh I will not stop and I hope that if not me then there will be other successes… Around the world there is more happening all the time… Every surgery brings us a step further to success.. Take care Helen

  3. I am so sad to read this this Helen , i can see how you feel , just wish you the best and please never give up ,
    good luck

    • Very difficult to write i had been putting it off but felt I had to put it in words… The support i have had from everyone has really helped… I still have hope until the ultrasound … I will continue do do everything that may help. Helen

  4. Keep your spirits up because that can never be taken away. Your blog is great and I will continue to read it and watch your positive progress.

  5. Helen, I can only imagine how discouraged you must be feeling. You have done so much to raise awareness on this issue. Please know that there are people out here, thinking of you and praying for you. I’m sure the wait will feel like an eternity, but here’s hoping your blog helps the time go by more quickly. The best to you!

    • Yes my blog and everyone’s support has been a great help.. I found it so hard to have to put into words but felt I needed to.. If not me then hopefully it paves the way for another’s success story… By June I should know for sure if the nodes are ok or not… Thanks Helen

  6. Sending you lots of positive vibes, Helen. So sorry that you are experiencing these complications. I really do hope that the nodes recover. Any way you can have the ultrasound sooner and avoid another month of anxiety?

    • Dr feels he needs to wait and give it a bit of extra time.. .i am doing MLD and working on the area just in case a couple of little nodes have survived! Everyones support is so helpful… Thanks Helen

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