What are you doing about that Lymphodema?

by Helen McKay

The day was the 19th of January. It was now 1pm and the surgery was scheduled for 3pm. My daughter, a good friend and I, had been waiting a couple of hours prior to this examination, for me to be admitted for surgery that afternoon.

It was only when I told the anaesthetist, who was examining me, about the embolus I'd had on my lung, some years before, and the multiple episodes of deep vein thrombosis, that he realised my anxiety about the anaesthetic had a firm foundation. Oh, he was so relieved that he knew before the operation had begun.

"Why have I not received any of your medical history?" He waved the empty file at me.

"But my GP and I gave all the details to the surgeon." I explained.

Somehow over the run-up to the Christmas break, the surgeon's secretary had not passed the details on to the hospital.

The anaesthetist grimaced and closed the empty file. "I'm sorry love, but to be on the safe side, we'll have to cancel today and reschedule your operation for another time. "

I looked at my daughter. She looked totally gob-smacked. She had taken a week off from her marketing consultancy in New Zealand at great expense, and travelled across to Sydney, to help me, following the operation.

"There's some tests I need you to have," he said. "I'll bring you in and do a full workup, the day before your surgery."

He shook my hand, as I was about to leave, and said,

"What are you doing about that Lymphoedema?"

"What lymphoedema?" I asked.

"The swelling in your ankles, love," he said. "Blind Freddy could see you've got lymphoedema! Get your doctor on to it."

I came back into the room. "But I've seen many specialists about it - some of them specialist physicians - and they've usually given me diuretics, many of which I had problems with."

"I'm not surprised," he said. "You should never have been prescribed diuretics for lymphoedema. When I examined you, I noticed your ankles were leaking lymph fluid."

"That's right, my body has devised its own way of getting rid of it. There are times when my legs drip," I said smugly.

He shook his head in despair. "I suppose you told your doctors this. Yeah. well, I must go and see to the patients on my list."

I left, my mind in a whirl. What the Hell was lymphoedema?

Stunned by this event, I went and had a coffee with my daughter and friend before we were in a state to return home.

When I saw my G.P. later, she'd had a call from the anaesthetist. I was given a referral to a specialist, whom I saw a day or so later. This visit was followed by a trip to Westmead for a lymphoscintigraphy scan - not a particularly pleasant experience.

The scan showed that I certainly did have lymphoedema - in fact - there was quite a severe problem with fibrosis, caused by the protein in the lymph fluid hardening in both my legs.

I was referred by the specialist to the Lymphoedema Clinic at Westmead Hospital and was told there was a long waiting list for treatment but, because of the severity of the lymphoedema, if I was prepared to attend each day, I could be fitted in for bandaging.

There would be wait of some five months for the massage, but my legs would be bandaged with compression bandages, up to my thighs. At that appointment, I was given a small sheet which told me a little about what lymphoedema was. I was also given a flyer for the Lymphoedema Information Day at North Shore Hospital.

It seemed like a good idea to find out more about this problem, so I went along. It was a good decision. During that day I found out so much about the research being carried out in Adelaide and elsewhere into the causes and management of lymphoedema. I began to feel that I had been presented with another of life's challenges.

I began the treatment, being ferried to Westmead each day to have my legs bandaged. The bandaging was made up of several layers of different types of padding and finished with two layers of compression bandages. They felt very firm and walking in them was difficult.

Shoes would not fit and I adapted some mules, by discarding the buckles and adding velcro to fasten them. Getting in and out of the car was difficult, so I cut up a piece of stiff plastic sheeting to fit the seat. With this plastic seat cover I was able to pivot around and get out more easily.

Several weeks passed and the fluid which caused my legs to swell so badly (and smell so bad), began to dissipate. This meant many sleepless nights when I was up to the loo very frequently. I began to look permanently tired, with large black circles around my eyes.

I was eventually measured for compression garments which I was told I would have to wear for the rest of my life. What a shock! They were like a suit of heavy armour and I feared how I would survive the summer in them.

Getting them on, presented some problems. The shoulder injury created difficulties in pulling them up - I couldn't do it. My therapist and I asked for help from Home Care but were told there were insufficient staff to manage the patients on their list, let alone help me with compression garments. I'm sure they had no idea of how difficult it was - maybe they thought they were `Teds'.

For the few weeks before I was again scheduled for surgery, I managed to persuade my friendly physiotherapist to help me put them on. She was wonderfully patient with me and also suggested I wear braces to keep the garments up, as they had a habit of sliding down. The braces gave my shoulder some pain problems but, at least, they held my pants up.

Following the shoulder surgery, I was sent out to Mt Wilga Hospital for rehabilitation. This hospital also specialised in the management of lymphoedema. The doctor who treated me at Mt Wilga and I discussed the history of this disease from the onset, some 20 years ago and changed the initial diagnosis from primary to secondary lymphoedema. She also noted that I had Lymphoedema in my left arm.

I stayed there for eight weeks and, while attending several sessions a day of physiotherapy for my shoulder, I was also given treatment for the lymphoedema.

This included daily massage and bandaging. The massage was wonderfully relaxing and the lymph nodes seemed be be responding to the stimulation they were getting. In no time the leg measurements were showing the fluid loss I'd sustained.

When my son visited on one occasion he said, "Gosh Mum, you look better now than I've seen you looking, in many years."

My daughter who'd come back over from NZ to visit me, agreed. The bloating around my face and hands was going.

I was discharged from Mt Wilga Hospital and came home to a battle to get assistance with the garments again. Initially, the lovely, friendly district nurse called each day and helped me into the garments. Eventually, she was able to persuade Homecare that my need was urgent. I am covered now with help from three different sources: Homecare, the district nurse and a private agency carer.

Unfortunately, when I left Mt Wilga, the massage stopped. With the right shoulder still incapacitated, I was unable to do any of the massage myself. As all my friends worked or had major health problems, I was unable to get help to continue with that vital treatment.

When things began to get worse, I asked for help from the lymphoedema clinic at Westmead. By now, both my arms were swelling with fluid, felt very heavy and, at times, very painful. On many occasions I could not do my hair, reach even moderately high shelves or cupboards to get out a cup for morning tea, etc.

I have now been granted one session per week of massage which alleviated the pain and swelling for a day, but it comes back with a vengeance when the effects of the massage wore off.

One of my friends came with me and learned to do the massage. She generously travels many kilometres, from the other side of the city, to help me with the massage, whenever she is free. Unfortunately, she is a very busy lady and it's still a bit hit and miss.

Westmead has, unfortunately, lost the services of one of the therapists from the department who is overseas and at the moment there is only a temporary replacement for her. It looks now as if my precious one massage session per week may be in jeopardy.

Rather than the health department persuing the policy of cutting staff in hospitals, the people who suffer from the discomfort of lymphoedema need the staffing at these clinics to be increased. Secondary lymphoedema is on the increase as the numbers of women who develop it following breast cancer, rises.

There is now, at last, a steadily increasing awareness by GPs of lymphoedema and they are referring more patients to the very few clinics that treat this uncomfortable and painful condition. Waiting lists are blowing out in public hospitals and services are rationed to less than adequate assistance to needy patients.

The excellent service offered by Mt Wilga Private Hospital is also under pressure and waiting lists for treatment there are becoming longer.

I suspect that, like me, many people who have this disease are yet to find out about it. A large proportion of doctors have taken an ostrich - head in the sand - approach to lymphoedema. Like me, these patients are probably being treated with diuretics and other inappropriate medication, until, when it is at a very serious stage, they are finally diagnosed correctly.

When these hidden numbers of patients emerge, who will care for them?

The public hospitals are already overloaded and can only offer lip-service to the demand. Not everyone has the resources - particularly the elderly and chronically ill - to afford private treatment. The private hospitals waiting lists for treatment are becoming longer.

Helen McKay © 1999