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Hi! I hope you are all keeping well, in whichever continent your sky covers!

Earlier this week, I reported back on the swelling in my left foot and ankle. I’m pleased to say that after wearing closed toe compression garments, this has finally subsided. I kept a pair of these on so I could hand over my bespoke pairs at the hospital to have them altered. It feels that the ankles were not tight enough to hold the fluid formation back.

On the KTX train on the way to my appointment in Seoul, I found this series of  articles on the justification for a proposed Bill of Rights for patients wanting access to their own stem cells- very interesting reading, as well as the comments made by others. I think this will be a blog worth following in the future…

So- how did it go? Well I was so happy to find 2 previous patients waiting to have their follow up at the same time as me! Comrades without a common tongue, but sharing the same journey. One is the previous breast cancer sufferer, who ended up with Lymphodema in her left arm. The other is a leg Lymphodema lady, who was overjoyed to be free of fluid in her lower limbs after just four months from her operation date.

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She knew it had gone, so had shed her compression garments and filled us all with joy and hope, as she proudly compared her legs with mine. I’m the pair on the left!

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The absence of lymph fluid was confirmed by her sonograph check up, which I couldn’t quite see, but could hear Dr Shim record as no fluid present. The arm lady needs a stem cell top up, but can’t afford it. As she had her arm measured, she sounded despondent.

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I couldn’t understand the words, but the expressions and body language were clear. Her hand and wrist looked a little swollen and I tried to ask if it was painful. Dr Shim informed me that she had Lymphodema only, whereas I was 20% Lymphodema and 80% Lipoedema. Lipoedema fat is painful to touch, hard and  lumpy, so where I would have felt pain, she just felt a restricted movement. She is still wearing a compression sleeve, which is keeping the size down, compared to her pre op picture below.

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In the classic Korean way, I was prodded, pinched and stroked on my legs and other areas by these two lovely ladies- there is such a divide in our cultures where personal space is concerned! The leg lady was trying to tell me she used to have a slight issue in her pubic area and wanted to know if I had, too!

She also noted how white my skin was ( lack of sunshine on lymph damaged areas!) as of course, all asian skin products contain whiteners. Quite funny, when we in the UK love fake tans and think looking tanned equals looking healthy. The other difference is, asian skin, if sheltered from the sun, is milky pale and line free, which makes age guessing quite difficult!

The treatment today was a series of subcutaneous injections, with a cocktail described as containing generic DNA material, local anaesthetic, and something to help reduce the viscosity of the lymph fluid, to encourage it to move away more easily. We all had this, in the spirit of comrades fighting a joint battle. They were injected at the points on each of us that had contained lymph fluid, or still did so. Of course, these ladies bore the painful looking injections without a murmur- but I let the English side down by yelping- they were painful on the ankles! ( but very worth it if it helps them to go down!)

Leg lady having the injections.

Leg lady having the injections.

After being swaddled in compression bandages, I was pleased I’d turned up in loose stretch jeans, which meant I could go home with the bandages on.

Although this story only reveals one potentially ‘cured’ case so far and there were 29 operated on last year and I have personally met 3 ‘still waiting’ others, just to know that one person in 5 has been successful gives me such renewed hope.

That’s a bit of a skewed 20% success rate, but I hope that I will get to meet more on subsequent appointments.

The treatment may take 3 attempts for the stem cells to take, similar in principle to IVF treatment. We all know that procedure works, but sometimes a couple have to have a few attempts before they get pregnant, even if the conditions at the time, although favourable, just don’t work. Its just so expensive to keep re trying, with no guarantee at the end of it.

That doesn’t mean to say it is acceptable to be promoted as having a 100% success rate, but its like the lymph node transplants, these are both kind of Neanderthal, wheel inventing,  pioneering treatments, when we need them to provide guaranteed first class space travel today.

I have shown a definite physical improvement since the pre – op day. The Lipoedema on my thighs has left a weird, doughy appearance, so I won’t be getting them out on the beach, but I would love to keep the 1 day post op legs!

 

 

Dr Shim has recorded my reduced measurements and there has been up to a 3 cm improvement in most areas. I can now wear the English jeans I brought out with me a year ago. I have two theories as to why I ballooned over the last 12 months- one is the menopause triggering off more Lipoedema deposits and the other is the action of heat and humidity on Lymphodemic flesh…. fingers crossed its the former- as I have to get through next summer in temperatures of about 40 degrees at the peak and 90% humidity..I don’t want it coming back!

I can now reduce my compression garments to below knee, but I am concerned about the lumpy knees being made worse, they show up in trousers. Also, the Lipodema in the thighs is likely to come back if the loose skin is left uncompressed, so at this point I don’t think I will ever be free of a compression garment of some kind. I guess I will have to choose whether to go ahead soon with a minor stem cell top up operation, using the cells within the fat tissue in my stomach (Adipose derived stem cells) to sort them out. Its well away from any Lymphoedema alarm area.

The last 9 weeks on the hot sweats side has been really hard work- every night being wide awake at least 5 times, throwing off the covers with my body heat, then being chilled and wrapping up again. We’ve had the bedroom window open when its been minus 5 outside and I’ve been laid there with just  a cotton sheet over me.

Last night was my first night with no compression garments on- and I only had one event, which was when I woke up! Bliss!

So- I’m a much happier person, optimistic again after having met someone who has had their Lymphodema successfully removed, even if I am still waiting for my turn for a ‘cure’! I wouldn’t encourage others to pay to have treatment at this point – its still very biased, with only 1 success story. On the basis of a 20% success rate, I would need to see for myself another 4 cases of people ‘cured’ – which still isn’t enough to consider dropping everything and rushing around the world to try something that has such low odds….

I will post again if there is any significant news, either on my progress or the stem cell world before my next appointment towards the end of March.

Take care and stay well…I’m off to plan a little holiday!

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