Don’t worry ….Be Happy!!!

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I was able to collect my results on Friday but sadly they were in “doctor speak” and I need my doctor to translate them, as to me it is like comparing the good old apples and oranges again, as there is no constant. The constant needs to be my good leg but all those measurements changed too and the Lymphasytagraph this time finished after two hours instead of the four hours of last time!! When I speak to my doctor maybe he will be able to shed more light in the reports provided. I had an MRI which measures levels of fluid in both legs and compares them. The Lymphasytagraph involves an injection between the toes of radioactive fluid which can then be traced as it passes up the legs all the way to the liver. This maps the lymphatics in both legs and shows the time it takes for the  tracer to reach the liver and if there is any pooling or back flow along the way.

The fluid levels in my bad leg may have reduced and maybe the tracers moved faster up my lower leg, but at two hours it shows the fluid collecting in the thigh more than previously. However cutting the Lymphasytagraph by two hours does not then show if it clears. Pre surgery the fluid collected in my calf and was still there after four hours. My feeling is that at this stage there has been no miracle cure!!! I do feel my lower leg responds better and clears overnight, but as this is a two-year project we will give it time and see what the next six months will bring. I am not going to worry about this, as I cannot change the outcome. Either things will get better or they will stay as they are now, nothing else I can do but look after my leg. I will continue with my therapy and try to remain positive…yes there will be some dark moments when I wonder if I should have gone ahead with this surgery, but I can only move forward not back.

In the mean time this is a very exciting month as my daughter gets married on 28th September. There are lots of visitors, including my son who will arrive from Denmark with his girlfriend. I have much to look forward to, so this month will be wedding month… Here comes the bride and groom……very exciting.

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Exciting news from New York… Nodes are growing!!!!

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Lymph node showing Lymph Vessels Google images

Imagine my excitement this morning when I got an email from Jennifer in the USA. Jennifer had a Lymph node Transplant two years ago in New York, her surgeons were Dr Corrine Becker, Dr J. Levine and Dr Julie Vasile. The first part of her story is posted in “Two years after Lymph Node Transfer In New York“. She had some fantastic news which I will post in her own words.

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Showing Lymphatic vessels and the valves that stop the back flow in the vessels.. Google images

“Follow up visit – 2 years post surgery:
Last year, in April, 1 year after my actual lymph node surgery, I had an MRI that showed the 3 nodes implanted and the very beginning of the lymph vessel growing. They referred to the nodes as small. But my surgeon explained that all nodes are small…
I had a 2nd MRI in March of this year and received results in May at my follow-up appointment. The news was very good! The nodes are visualized, there are actually 5 on the right side (including the 3 newly transplanted ones) and 2 lymphatic vessels connected and growing. From what I understand, a lymph vessel has reached half way down to my knee, and it is 1 millimeter in diameter. When I asked if that was a good sized diameter the Dr. responded, “That’s like a Highway!”
So, I left the appointment with a lot of hope. I was told that my leg was continuing to do well, the tissue feels very soft and moveable.
The reality though is I still wear a compression stocking during the day and a tribute sleeve at night. It was suggested that I try going without the stocking during the day at times when I am active, as in walking around, moving about, no long time standing/sitting in other words. Hard to do!! I am complying by not putting the stocking on first thing when I get up. I do morning routine stuff for about 1 hour. I am leery of this because I am so conditioned not to let any additional swelling take hold. I might take a bike ride without a stocking, and see what happens. Oh the freedom of not being encased!
In comparison between 2 years ago, pre-surgery and today: I can do so much more physical activity without ‘feeling’ the fatigue, achiness, swelling, etc. I forget what it was like. I just realized this last night, as it had been beastly hot here, and I am doing really well! Don’t get me wrong, it’s still there, the swelling, but it is definitely getting better. My shoes fit better, my toes aren’t sausages, the top of my foot has lost the camel hump (though edema is still trapped there) I see more definition to my knee, I see some muscle definition when I flex my leg (I have to flex pretty hard, but nonetheless!).

We are talking about a second lymph node transfer to the ankle region as well as some “mini lipo” to the outside of the leg where fat has deposited that doesn’t’ belong. This scares me, but I had a consensus of three wonderful doctors who agreed with it. No need to wear permanent stockings afterward, because this is not the ‘debulking’ method, but judiciously removing a little fat from the problem areas. I have an ugly lump where my thigh high stocking ends. It looks like a have a bagel around my leg….Ughh…
The MRI is a super valuable exam as it shows where the fluid is trapped and how much, as well as visualizing the lymph nodes and vessels. Also, it’s valuable for the lymphedema therapist to know this information as well, as they then know exactly where to send fluid for better results.
This is a specialized Lymph MRI I had done at Weill-Cornell in NYC.

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Google images

So, all in all, I feel encouraged and I hope that you will feel encouraged and hopeful as well. We may never have what we had prior to Lymphedema but at least the worst of the nightmare is hopefully coming to an end”…. Jennifer

So it is true they really do grow!!! All of us who are waiting for things to happen Jennifer says, “If you can, to have as much lymphatic massage as possible. In the first few months of the transplant it’s very important. Even if you can self massage as best you can. You want to ‘wake up’ those newly transplanted nodes and get them working full time.”

Thank you so much Jennifer for sharing, it is so helpful to hear other’s progress. Anyone else who would like to share their experience please email me at helenbrd@bigpond.net.au I will change your name if you wish to retain your privacy.
Thanks Helen

The Noise Tunnel… Bang! Bang! Bang!

Magnetic Resonance Imaging / Résonance magnétique

Magnetic Resonance Imaging / Résonance magnétique (Photo credit: http://www.cihr-irsc.gc.ca)

Loud environment headphones

Loud environment headphones (Photo credit: Wikipedia) I think these headphones would have done a better job!!!!

Just a quick post, with only a week to go, as I start the final count down in preparation for myself and the surgeon.

Today I had an MRI, needed for the surgery to map the structures for placement of the nodes behind my knee. I  had no idea what it would be like but should have guessed when they gave me a set of headphones!  The noise, it was indescribable, like laying on the floor with a bucket on your head and someone bangs it! I kept trying to imagine what the noises sounded like to distract myself, car horns, a gong, guns, hammers, sirens and a continuous hand on a car horn? I began to feel myself starting to giggle as I thought this is crazy, I’m in a tunnel with the worst noise possible and a useless set of headphones to help. Then came a voice, “Just one more to go then the other leg”. The giggle changed to a tear but thankfully a lady came and said, “We will just put these ear plugs in”. Oh I thought, a bit late, I have already been in the noise tunnel for 45 minutes, had my ears assaulted, but you gave me fodder for my blog!!

My preparation is to be as healthy as possible, so the juice machine has come out of the cupboard. Every now and then the juicer emerges from the depths of the cupboard as I go on a health kick. Today …

Carrot, ginger, celery and beetroot or carrot ginger and apple!
Fruit and vegetables are great for good health.