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I have not been writing any posts about my progress as I am awaiting a Lymph MRI at the end of May and will see the Doctor on the 7th June. This MRI will show if there are any viable Lymph Nodes in the transplanted tissue or has the infection damaged them. To say I am not dealing with this is an understatement, my emotions are up and down, I am very, very scared that all this has been for nothing. I cannot blog about this at the moment, but will share other’s stories and progress, plus share with you next week our trip to Western Australia, which I am looking forward to. I need to get away from doctors, physios and hospitals for a while. Yes I do have to fly so will be wearing compression stockings on both good and bad leg!!…. Oh the joys of having Lymphoedema!!

Monkey Mia, Western Australia

Monkey Mia, Western Australia (Photo credit: siska maria eviline)

15 thoughts on “Waiting!

  1. Waiting is hard. When I was working for a not-for-profit that makes social emotional learning programs for children, one of my colleagues wanted to write a song to help 4 and 5 year-olds learn how to wait. I thought it was brilliant.

    Have a wonderful holiday, Helen!

  2. Hi Helen — I am with you as to this being an up and down emotional journey. I started MLD therapy last Monday (am going three times a week for a month at least). I wasn’t real happy when my therapist measured my leg and it was far worse than it had been when I started the second series of MLD treatment from 12/2011 through 4/2012. I am hoping that because she had not seen my leg right before the surgery, that this may not be as bad of news as I thought. I am wearing a Reid Sleeve for now, since it’s easier for me to wear this big compression “boot” from toes to hip than dealing with the foam compression and elastic bandaging. But if the swelling is not significantly better by this Monday, I am going to have to use those darn bandages. I personally see small changes in my leg, and I am just going to have to be patient. The surgeon said 6-8 months to see if it worked.

    If the surgery is successful, then he will do the liposuction to clear out the fat and protein that have settled in the leg, but again only if the surgery is successful.

    I have now returned to work and am glad that I did. Thirty days out of work is enough! I wear the big boot all day and just remove it when I have to go out to lunch or anywhere in public. I just don’t want the stares or questions. It looks like I have a broken leg. Who wants to go into details about lymphedema and now the surgery with strangers who have no idea how difficult living with lymphedema is!

    Also, I am back to using my pump daily at the instructions of the therapist. I seem to think it helps to use the pump along with the compression boot. When I stopped using it for a few days, I didn’t notice any increased swelling but no less swelling either.

    I was happy to read Jennifer’s post. It is good to know what to expect later on down the road!


    • Thanks for the update i will create a post from this. I looked up the Reid Sleeve at least you can take it on and off unlike the bandages that are just on all the time. I am very happy with the Ready Wraps as they seem to help and are less bulky… Also easy to get on and off.i think they work as good as the bandages. I too am above pre surgery measurements in the knee area but keep working at it!!!!! Ankle and upper thigh down to pre surgery levels. Look forward to your updates and Jennifer would love to be in contact with you.

  3. I can really identify with the feeling of needing to get away from hospitals and treatments and everything else that goes along with them Helen. I think you’re amazing to have had this pioneering surgery and hope above all else that your results are good. Enjoy your break, you deserve some down time xoxox

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