I guess you wondered why I was so quiet… well, its been a lovely, busy summer!
We have had some holidays away and visitors here, so time has slipped away fast. It’s still warm out here ( full length compression is too still hot!) and the summer has had consequences…
Firstly, the heat seems to cause more inflammation and I have had a badly swollen left foot and toes. I need to ask Dr Shim to see if he can help locate a manufacturer to make me some toe caps and an ankle sock, as this is the only place I now have any lymph fluid.
Secondly, long plane trips away exacerbate the above, but I would not have missed those trips for the world. Snorkelling on the Great Barrier Reef ( a bucket list ambition) helped soothe those swollen areas and the salt was good for the skin! I wish my GP could prescribe another trip for me!
Thirdly, iced coffee drinks, ice creams and less walking due to the heat of the day and entertaining visitors have taken their toll on the thighs.
I can see they have increased in girth and I have put around 7lbs on. This fluctuates as I try to lose it before it becomes permanent. However, it has been sufficiently noticeable for me to cancel my next appointment with Dr Shim.
No point in wasting money and time to record a backward step of my own making! It is a valuable lesson to learn, in that Lipodema is not easy to shift. In the days since our visitors have gone, I have fasted for up to 3 days to clear the fat away, to no avail. I am also back on my low carbohydrate non inflammatory diet- hopefully I will get the weight back off soon.
There has also been a lot of additional pain, in that the reduced walking and additional sitting has caused very restless legs at night, with more hot sweats and sleep has been elusive. Maybe I should have got up and gone for a walk in the cool nights, but that would have disturbed the person who needs his sleep more than me!
I am back to walking up and down the stairs instead of taking the lifts, and our 10-11km dog walk a day is back in place. Thankfully, although the days are bright and sunny, they are a little cooler and the dogs can cope as well as me.
So, enough of me, how about Dr Shim’s continuing work? I asked him how many Lymphoedema patients he had treated this year and if there were any more ‘cured patients’ apart from the solitary lady I have met.
He kindly updated me with the following statements:-
1) Between 2010 and 2013, he has treated 23 patients. There has been many more this year, but he couldn’t recall exactly how many.
2) Of those 23, there has been a limb reduction of 30-110% depending on the severity of the patients condition.
3) Stem cell therapy combined with Lymphosuction for the first time in the world and getting successful results.
5) A safe procedure, it is possible to repeat stem cell therapy every 2-5 years if required, but so far a 100% success rate since 2010.
He also sent me some pictures of dramatic changes in the shape of his patients legs, they must be so pleased! A 110% reduction for some is no exaggeration and those with terrible ulcers ( lower leg necrosis) show healed, closed up shiny pink new skin.
But statement 5 is the clincher. This is a very expensive treatment, with the patient paying to be part of an experiment ( there have still been no formal clinical trials and no forthcoming papers recording results and outcomes ) Who can afford to keep paying out on a ”maybe next time ‘ basis? The 100% success rate can only refer to the Lymphosuction, as my Lymphoedema is still not cured/fully repaired.
This time last year, the main damaged area was in my left upper calf and knee, with less volume in my right leg, same place and compression garments holding it in place there, in both legs.
After 45 weeks, and for the majority of time since the operation, a little fluid remains in my right leg ( it always was the lesser of the two, a kind of ‘overflow’ leg) and as previously mentioned, the fluid is now in my toes, ankles and top of my left foot.
On the Lymphoedema facebook pages, I have seen comments from others who have had water assisted Liposuction say that this has happened to them, too.
I am not a medical person, so I cannot say if this is a catastrophic failure of the already struggling lymph passages in the knee area giving up and gravity taking over, or if the stem cells are working on building new pathways and somehow needed the fluid out of the way. The other person didn’t have stem cell treatment, though, so I leave you to draw your own conclusions!
I am bandaging at night to get that foot and toe swelling down and give me a fresh start every morning and I can maybe last a couple of hours before I can feel a fizzing, swelling area in my calf, as if there is still a leak and the interstitial tissues are filling up as I move about, or stand up.
I worry about what will happen when I return to the UK and have to find a job… I’m limited to a couple of hours with a leg elevated before I am compelled to move about and shift the building stiffness and pain. Sitting with legs downwards is limited to an hour.
I suspect this is my lot.
But I’m not ungrateful! I still have a much better quality of life and I dread to think what things would be like if I hadn’t had this done. I don’t know what level of improvement, if any, the stem cells have made for me, as I didn’t have a lymphoscintigram to record my starting condition.
What I do know is that I am glad I had this procedure done and I’m glad I wasn’t the one paying for it… as to me- 100% success means no more fluid present and no compression garments needed.
My next post is likely to be my last, as this was a 12 month diary of progress, thoughts and feelings, so I hope to share the situation at the end of November with you.
Please don’t give up on stem cells, though- I still think they hold the key to repairs and regeneration of damaged bodies, its just that there is no money in ‘well’ people for big pharmaceutical companies…they make medicines to keep you alive but still sick….reliant on their product for survival! If they were to give you something to cure you- the money stops coming in!
We just need time and other people’s money to get there..
Stay well and stay positive.. because what’s the alternative!? And for those with a cheeky sense of humour and have found out how alcohol has a very negative effect on your limbs- I hope this makes you laugh!
Here’s some interesting links for you to check out…..enjoy!
2)How Sonograms can distinguish between Lipodema and Lymphoedema
4) Stem cell treatment centres in 2014
5) Taking human cells back to pure stem cells
6) Lymph node transfers – a comparable treatment to this one.