Continuing with our coverage of Lymphoedema Awareness Week, today we speak to David Forsythe, one of our patients who shares his lymphoedema journey.

Patient story: Meet David, lymphoedema patient

Lymphoedema Awareness 2023
David shares the swelling caused due to lymphoedema in his leg.

My lymphoedema is secondary but I’ve lived with it since 1995 when amongst some severe life-threatening injuries, I also smashed my left femur into 11 pieces in a road traffic accident. The injury itself and the intervention to save my leg caused irreparable damage to my lymphatic system and nodes. In the few years post-accident, the lymphoedema was out of control with my left calf being bigger than my right thigh.  My leg would hardly bend and every day activities were very difficult. However, I found help through Hospice at Home West Cumbria and their lymphoedema services and we started managing the condition. We found that compression garments worked well for me. The standard Mediven type full leg with a belt reduced the swelling to much more manageable levels and every day activities became easier – to the extent that I thought it was possible to get back to the exercise activities I used to do in my 20s before the accident, such as swimming and cycling. Returning to swimming was pretty easy as the leg would not swell up too much if the compression was removed for just an hour and was mostly submerged during that time.  However, it was always a nuisance trying to get compression garments back on after a swim where it felt impossible to get fully dry.  I got more exercise battling to get the stocking back on than in the swimming itself!

I found that the while the Mediven type garment worked well in reducing overall size, it was awful at keeping my leg ‘leg-shaped’.  My calf needed extra compression through a calf length Mediven over the top of the full leg one.  It worked in reducing calf size but caused the fluid to pool just above the knee making the leg difficult to bend.  I’d wanted to get back to cycling so the nurses suggested a ‘made to measure’ garment.  We tried it and it gave the shape back, but the size increased again.  The answer was to try both at the same time.  A Mediven full length to provide overall compression and a made to measure on top to provide shape and stop the pooling of fluid above the knee. That works brilliantly – even with relatively old and worn garments, the combination is transformational and has been a game changer. It has allowed me to exercise a lot more and that increased exercise has its own positive impacts.  I went through a ten-year period of cycling (yes, in lycra!) to work almost every day clocking up around 4,000 miles a year. My made to measure garments were either blue or grey as I prefer not to hide it and in cycling shorts I’ve often been asked if I have a prosthetic leg!

David lymphoedema patient at Hospice at Home West Cumbria
David is now able to enjoy his passion of karate.

I still cycle but not as much. That’s due to age and creaky joints rather than the lymphoedema though. I was 29 when I crashed the motorbike and at age 44 I had some sort of typical mid-life crisis and decided to have a go at two ambitions that I had dismissed as unachievable much earlier in life.  I wanted to play drums in a rock band and I wanted to learn a martial art. So I started lessons in both.  The lymphoedema was never expected to restrict the drumming and it doesn’t (I’ve played in four bands now), however, I thought my first karate lesson was going to be a disaster as I’d never find the poise, balance, strength and speed needed to learn well and advance through the ranks. I was wrong.  There are a few things to note here. Firstly, everyone looks the same level of silly in a karate suit. Size, shape, gender or ‘big leg’ are all hidden by the bland white suit. Secondly, traditional karate is not about competition or fighting but much more about learning to use your body. It’s about movement, mobility, movement pathways and effective use of your whole body. I’m just starting year 14 on my karate journey and have been teaching classes as well as training for the last seven or eight years. While I don’t move as well as the youngsters and while I’m never going to be kicking as high as in the Hollywood movies, I’d like to think that my lymphoedema has become almost hidden when I’m in the dojo (that’s just a practice hall to you non-karate folk!).

I’m currently training for my shodan (black belt level) grade later this year.  The training regime could not align better to management of lymphoedema. Cycling, long dog walks and swinging a kettlebell all help with general fitness and I do plenty of body weight exercises and mobility work to help with the karate. It all fits together brilliantly. There is nothing better for your mental health than finding that your lymphoedema has become irrelevant and half the people I train with or teach have no idea that I have lymphoedema.  Sometimes people notice the part of the garment that is exposed on my foot and ask about it, but mostly they assume I have a sprain or something. The lymphoedema has presented no barrier to my karate.  I have to say that without the care of Hospice at Home West Cumbria Lymphoedema Specialists and the work to find the two layer solution, the karate would have remained an unticked box on the bucket list. With their help, I sometimes forget I have the condition!  There are still times that it swells up for no obvious reason and I still get cellulitis, but on balance, the benefits I get from what I do far outweigh the risks (which are manageable).

Karate may not be for everyone but finding a passion that lets you at first work around, but then forget about your lymphoedema is the key to building an exercise regime that works for you consistently. I’ve come to love karate, the exercise regime is a joy, not a burden and so it’s easy to keep going. It becomes symbiotic; the karate helps keep the lymphoedema under such good control and the good control is what enables me to do karate.  Try and find your passion and unlock such a positive impact of your own.

To find out more about lymphoedema and the services we provide at Hospice at Home West Cumbria please click here.