My experience started in 1992, at the tender age of nineteen when my left leg started to swell. I was admitted to hospital for what was thought to be a blood clot. I was treated with medications and advised to keep my leg elevated. The following month, I developed cellulitis in my leg (a soft tissue infection), I was prescribed antibiotics and other than been given support stockings to keep the swelling at bay, I was given no other advice. Over the course of the next few years, I developed several more bouts of cellulitis.
I moved to the UK a few years later, after I secured a job in London. I sought the advice of a GP there, relaying my medical history. He was at a loss as to why the cellulitis was recurring, so he referred me to the Vascular Department at Charring Cross Hospital, over the course of the next period, I tried many different types of compression garments, but unfortunately they didn’t contain the swelling.
As time went on, I was getting more and more frustrated as to the cause of the swelling. In the meantime I had moved to a different part of London. One day while attending another GP, I noticed a picture on his desk of his daughter. At the end of my tether, I demanded to know what he would do if his daughter had the same complaint as me. I explained my leg was getting bigger and bigger and I wanted answers as to what was causing it and where I could go to have it seen to properly. I am a firm believer in “the one that shouts the loudest gets listened to”, as a week later I had a referral letter to see Professor Mortimer (one of the leading specialists in Lymphoedema) at St. George’s Hospital in Tooting. I was fortunate to get a consultation with Professor Mortimer himself, who confirmed I had lymphoedema. At last I had a diagnosis and found out that others also had the same condition as me! Mine is a primary lymphoedema, it can’t be cured but it can be controlled, involving lifelong follow up. He also delved in to the fact that it was probably as a result of insect bites that may have weakened my lymphatic system or it may have presented as an adolescent as a result of too few lymphatic vessels being developed. I informed him of my battle to date since its development, however he assured me that I was not the first person to be wrongly diagnosed.
I continued to see the Lymphoedema Nurse at St Georges for the remainder of my time in the UK. I received a three-week course of intensive treatment – Manual Lymphatic Drainage, skin care, exercises and multi-layer bandaging, to which I responded very well. I was followed up then with maintenance therapy – compression hosiery, Circaid, exercise, self-administered massage and skin care.
During this time I became a member of the Lymphoedema Support Network (LSN), where I gained tips such as placing a shoulder pad from an old blouse behind my knee when breaking in new compression stockings; about the benefits of using an inexpensive but effective moisturising cream such as Aqueous or Emulsifying ointment to keep the skin in good condition.
To be honest, I found the advice from the network of patients on this forum far better than any GP discussions I had had.
After I returned to Ireland, as I had NHS Contributions, I continued to be followed up in St George’s hospital for a year. After that, with the assistance of a Vascular Consultant here in Ireland, who explained to the South Eastern Health Board, the lack of services here, I received further follow up treatment in St. George’s with funding from my local health board.
As the Lymphoedema team in the UK were simply monitoring my condition, I was referred back to the Vascular Clinic in St. James’s Hospital who in turn referred me to Jean Marc in the physiotherapy department, who provides care for patients with both primary and secondary lymphoedema. I have an annual appointment with him for measuring and prescribing compression hosiery; he also gave me a session multi layer lymphoedema bandaging to improve my leg shape. On occasion, I treat myself to a session of MLD therapy with a private practitioner when I feel a build up of fluid. Recently, under her recommendation, I have purchased the Farrow Wrap. I have worked it into my night and weekend routine but not quite managed to do it for the three weeks as recommended, similar to the bandaging concept.
I continue to be in control of the Lymphoedema rather than letting it control me, I now know that if I do a day of work in a standing capacity, the leg will reflect hard swelling as opposed to soft, it can cause pain and I have developed many bouts of Cellulitis over the past decade. As a result I try to keep standing to a minimum; I always carry antibiotics for that just in case moment and I listen to my body, to know when I’ve done enough. I use a graduated pillow to elevate the leg in my sleep and although tricky at the start, you get used to it and it now feels weird to not elevate at night. I certainly went through the anger mode and the questions of why me, then I saw people in clinics that had no legs and realised how grateful I was for how well I was . . . my attitude towards Lymphoedema now is like any other condition that you wake up with each morning, such as diabetics who need to control insulin, it’s about not letting it beat us, but also to live with it and have a daily routine that just works and each individual is different. The Internet is a mine of international information about the condition and I even signed up to a guy called “Lymphoedema Guru” on Facebook to keep up to speed on new research. Of course, I too am hopeful that the Dr Mortimer’s and the research teams will one day find a cure. To all of you that feel your GP isn’t listening to you – you need to be heard, get a second opinion. As someone told me GPs are General Practitioners – they cannot be specialists in everything – hence the early referral to a specialist is key.
By Kay White
A Lymphoedema Ireland Member