Stem cell therapy for Lymphedema

A while ago I got a tip about an online diary of a woman who is undergoing a new kind of treatment for Lymphodema in South Korea. It is a combination of Liposuction and Lymphosuction, to clear the site where the lymphatic system has been damaged, followed by intravenous stem cell therapy.

This lady has Lymphedema an Lipedema in both her legs due to surgery that went wrong. On her blog she shares her experiences from before her surgery and up till now where she is today, which is a very good place, it seems.

You can read her very first post shortly before the surgery here, where she explains a little about the procedure. On the mainsite you can find the posts that followed.

This lady links to another online surgery diary. I am not sure whether they are having the exact same operation but do check it out.

I am sorry it has been so long since my last post. I am well and things are good. Still no sign of a job, but things seems to be picking up a little and there have been more openings lately so I am hopeful. The wonderful man is still here and still wonderful. His name is Glenn. He really doesn't care about my leg. He sometimes helps me roll up bandages, how sweet is that! I think we are good together. While being in the middle of it I am also observing this wonderful thing that has happened to me. It is kind of unreal and very different - good different - than other attemps into relationsships I have had. I can be me.

I recently recieved the maxi dress on the pictures below, it is really not too bad. I will see if I can take a picture wearing it so you can see what it really looks like. I need to stop buying clothes from China on eBay as the quality is often not very good and the pictures can be very different from what you actually get but I was lucky with this one. The quality is not too bad. The dress is quite long too and not Asian sized. I am 168 cm high and is long enough for me. It comes in many different colours. I bought it here. The colour is a little bit different from the pictures but not dramatically.

Lymphedema patient weekend 2012

This weekend I attended the annual patient weekend with the Lymphedema Patient Association of my country. It was a really good weekend, very positive and very giving. It's been so good to interact with other lymphers, discussing various matters, sharing info and generally just being with others with the same condition. Not feeling like a freak. Many of the others were breastcancer related arm lymphers but there were also some legs. We all wore nametags, blue for legs, green for arm and yellow for lipedema. A P or an S indicated if we were Primary or Secondary. Really good, and a good "ice-breaker". People would say to each other "I can see you're a primary too (there weren't that many Primary), have you had it since Birth" and then a conversation was on the way.
The weekend was a mix of speaks (a German Lymphedema specialist, a therapist, Lymphedema doctors, a fitter, a stylist etc.), workshops, a showing of a new DVD about Lymphedema the association has created, and various distributors showing off their products (garments, shoes, pumps etc.). One of them was this product (for now I link instead of writing the name). Apparently it can be an alternative to a Lymphedema pump. A Lymphedema therapist spoke about the product, she had had good results with it. Also this product was available to see and learn about. I'd like to investigate more on both of them once I get time.
The workshops was a chance to try or hear about Mensendieck system, acupuncture and water gymnastics. I had signed up for acupuncture, very interesting. The acupuncturist said that Lymphedema is related to the spleen meridian. I thought that was particularly interesting as the Qi Gong training I do also deals with meridians and I'm wondering if there are exercises I can do to stimulate the spleen. I will ask my trainer. I tried acupuncture 14 times when Lymphedema first started, nothing happened. However, the clinic represented at the weekend had good results, they specialised in Lymphedema. Still, now that I know more about Lymphedema I am terrified of triggering another outbreak, so I won't try again.

I met some really nice people. Most of the people there were probably 60+ but there were also some younger than that. I spoke to a 37-year old woman with Primary Lymphedema in both legs. I could relate to her, and I'm glad I got to talk to her. Her legs were huge. I also hung out with a very stylish woman that I had seen two years ago but didn't speak to at that time. When I saw her back then I thought she was around 30 or so but when we sat at the same table for dinner the first night this weekend she mentioned her 25-years wedding aniversary last year. "Huh?" – I thought. It turned out she was 48! She looked so good and she really knew how to dress around her condition and make the most of her options. She had secondary Lymphedema in one leg. She was indeed an inspiration, more about her in a separate post soon.

There were lots of socialising at breaks, mealtimes and at a walkingtour in the beautful surroundings. The hotel was really nice, great pool and most important – a pancake station at the breakfast buffet ;-)
I am glad I went. I can strongly recommend other Lymphedema sufferes to join a patient association and attend their meetings etc., if possible.

Coming up: At the fitter, swimming and sophisticated Tina.

Wrapped again

I am wrapped up again, now the whole leg. It feels rather stiff, but that's how it is, isn't it. It does sit fairly good, although slightly tight on top of the ankle, I hope I can endure having in on till tomorrow where I am seeing the Physio again. I am curious of how it will look when we take it off.I'm tired. Off work tomorrow and had planned to go to a Qi Gong class in the morning before physio but I think I'll stay at home and relax, don't feel like going anyway with the leg all stiff. The not-going will give me plenty of time to indulge in freshly baked roles, I have just made the dough.

MLD

On Thursdag I went to my second time with MLD. Oh man, how comfy it is. Very relaxing, I almost fell asleep. I really feel I am in good hands.
As of measurements of the other night, three of the six was smaller than in the morning, but I can see that has happened before. One would think that they would always be slightly larger in the evening than the morning, and that is often the case, but not always. It shall be interesting to see if all the measuments generally goes down a little when treatment has gone on for a little longer.
The physiotherapist gave me a little task, use a tennis ball to sort of knead/massage the foot with in order to make the foot softer and more flexible as it apparently is a little stiff for the time being. I am going to do that, will buy a tennisball next week. I sit down most of the time on my work, so I can easyly do it under my desk. In one of those "1$-shops" very near the clinic I bought a small vaporizer that I will bring on a trip, I'll be going on soon. The physiotherapist gave me a "hot-weather-tip"; to spray water on the stocking in 
order to cool.

My first MLD

Today I have been to my first Manual Lymph Drainage with a physiotherapist, and it went really well. My leg is quite soft and the lymph fluid is mobile, so that's good. The massage was very comfortable and my therapist is really sweet and very knowledgeable. Immediately after, it was clear to see that the forefoot had gone down a fair bit. I walk around almost with a little cushion much of the time but she managed to almost make it disappear. She said that it is in the hours just after drainage that the body is really working with the treatment, so I am curious to see what the measurements say tonight. I measure my legs six places every morning and evening monitoring the development. Next session is on Thursday where another hour on the couch awaits me, feeling excited about it. The strategy is to give me a couple of long and very thorough treatments, kickstarting the body and then see how how I react to it.
I am so glad that I found this clinic.

Gratitude

Today was the day when I was to have a consultation with a physiotherapist specializing in Lymphedema. A day I have been anticipating. The therapist was very, very kind and seemed very competent. We had a long talk and she examined my leg. It seems that my leg is very cooperative and the fluid quite mobile, so that's good. She explained a lot about the lymphatic system and also gave me a short session of manual drainage.
We talked about the lymphedema pump and she too said that it is very important to open up the system before pumping away, since at worst it may cause lymphedema elsewhere, ie in the genitals! I look forward to her showing me how I can open up the right way myself, it would be really good. I find it appalling that I have not been informed about this neither by the hospital where I had treatment before nor by the company that delivered the pump. Shame on them!
Anyway, next week I will go there for treatment two times of one hour. Feeling excited about that. After the two treatments we are going to evaluate how my leg is reacting and then make a plan. The plan could be five days of treatment in a row, possibly with wrapping. It all should end up with a new compression stocking and hopefully a somewhat smaller leg. She said that I will be done by November where I am going on a long trip to Thailand, so that's good. Maybe there is even time to make two stockings, that would be fantastic.
Already after the short session of manual drainage today my leg feels a tiny bit different (better) when I bend it. Not so tense and filled with fluid.
I am so happy that I will be starting treatment there and now I finally feel that I am being "taken care of." Yippiii!

Hope

Wednesday I went to see my GP to discuss the possibility of recieving treatment at the Danish Lymphedema Clinic in Skodsborg north of Copenhagen. My GP could not say if treatment there was possible because it didn't appear whether the clinic has agreements with the public health insurance or not. I called the clinic Friday to ask, but it was closed for vacation. To be honest I think a GP should sort such matters out for their patients, but never mind.
I gave her three leaflets about lymphedema I had from the supportgroup, one for each of the doctors in the practice, to bring their attention to this condition and hopefully help others in the future. It was pure luck that my lymphedema was discovered and dealt with as when I went to my GP when the swelling started, she thought I may had had a thrombosis and send me to, which turned out to be completely irrelevant examinations at the cardio section, but then they send me on to the hospitals lymphdepartment and I was diagnosed. So many GP's just don't know anything about Lymphedema.
Earlier this year I went to a workshop with the patients organisation and at dinner I sat next to a woman born with LE in both legs. I don't know her age, but she had grandchildren, so I suppose she would have been around 45 or more (looked 45-ish), and it was only 12 years ago she was diagnosed - upon reading about a Lymphedemasufferer in a womans magazine, and then telling her doctor "listen, I think I know what's wrong with me"! That goes to show just how little knowlegde about LE there is even among doctors.
Anyway, I am holding my breath until the the clinic up north opens again on 26. July and I can ring them. I am wondering how it will be to have treatment there, and I wonder if I am doing the right thing, moving away from the hospital where they also are supposed to be real good, though this is not my experience. Nothing else to do but try, see what happens.

The right treatment for me

I am receiving treatment for my lymphedema at a hospital here in Copenhagen. Presumably they should be some of the best in this field, yet I doubt I am getting the treatment best for me. The treatment I receive is limited to lymphedema-pump and bandaging. Bandaging however, I get in abundance, recently I was bandaged for six weeks, the bandages was changed every four or five days. Unfortunately it did not lead to a slimmer leg, almost the contrary, as I, when it was finally over, was left with a leg barely bendable, and a sore and very swollen knee filled with fluid. Reflecting on it I suppose it is logical that this would happen, a limb being tied up and not able to move will wither and languish. Now it's some weeks ago and my leg is somewhat better than when the bandages first came off. However, I now have to wear the toecap every day – before I almost never used it, and all in all I feel my leg is worse now than before. It is harder to keep the edema down, especially my ankle is very swollen, and I can no longer potter around at home for just five minutes without the stocking on (gotta take it off for washing sometimes...). I have to, once I have left it to soak, go lie on the sofa with the leg elevated, and then later quickly rinse it and then straight to bed.
The chiefnurse will not hear of anything other than lymphedema-pump and bandaging, there will be no manual lymphatic drainage.
After this last episode I feel I have to try something else. It is my body and I can not accept my leg getting worse than it could have been, because of hidebound, bustle and sloppiness.
What to do? I called a a renowned lymphedema therapist (Skodsborg) to have a chat, and she was absolutely mortified to hear that I had been bandaged for six weeks, and that I only got IPC pump, not hands-on massage. "A machine can never replace a pair of human hands." So true. This practice only does bandaging for one day at a time, and always with MLD first. How I would like to try this place for treatment... Unfortunately, this is a private clinic and so I would have to pay for this myself and since my income is currently very limited, this is not possible. I have now made an appointment with my GP, to see if there is anything she can do to get me in there instead the hospital, I know there are lymphedema patients receiving treatment there, paid for by public health insurance.
I should be SO grateful for ANY input on this matter, particularly about manual lymphatic drainage on legs (massage). Thank you heaps!