Living with chronic lymphoedema and a leg ulcer – Sue’s story

Sue’s in her 60’s and lives near Boston, in Lincolnshire with her husband. She’s a grandmother of two and worked in customer services before retiring. In her late 40s, Sue was diagnosed with renal cancer. Although the cancer treatment was successful it left Sue with some serious side effects, including lymphoedema that caused her legs to swell.

However, there was no lymphoedema service in her area. Prior to her surgery Sue had had Type 2 diabetes for a number of years, which was originally well managed by diet and prescribed medication, however since her surgery the control of her diabetes has required daily insulin injections.

“I was back at work, and I noticed that my leg was dripping. I had a tiny scratch on my leg that just kept on dripping.”

“I wrapped kitchen roll around my leg to soak up the fluid. Within two hours I’d used up the entire roll.”

Getting referred to a lymphoedema clinic after suffering with cancer

“I was sent to the lymphoedema clinic and they gave me some compression stockings that were really thick and tight. The scratch on my leg had turned into an ulcer by this point, so they sewed some silk into the stockings to stop it rubbing. But the silk kept on slipping and the bandages would rub the ulcer until essentially I had a hole in my leg.”

The “Lymphoedema” clinic that Sue was initially referred to was newly established within South Lincolnshire and had been set up primarily to manage patients with the condition as a consequence of cancer and was led by a former district nurse with an interest in lymphoedema but no specific training. This service was stopped at a later date.

Sue’s chronic wound proved exceptionally hard to treat, leaving her in significant pain and often housebound: The nearest alternative Lymphoedema service at the time was a considerable distance away and Sue felt unable to travel due to the symptoms associated with her leg ulcer and associated lymphoedema.

“My legs and feet kept on getting infected. In one year alone, I had 14 infections. In 2018, I got an infection in my leg that caused fluid to build up around my heart. It’s left me with heart problems, which makes compression difficult. At one stage, the wound was green. My legs and feet were so swollen from the lymphoedema that I couldn’t even wear shoes. I just didn’t leave the house. I wouldn’t see anyone all day. Being housebound also affected my weight. When you can’t leave the house for years, you’re going to put on weight. Being overweight makes the lymphoedema worse but I can’t exercise because I can’t walk easily. It’s a vicious circle.”

At one stage, the wound was green. My legs and feet were so swollen from the lymphoedema that I couldn’t even wear shoes. I just didn’t leave the house. I wouldn’t see anyone all day. Being housebound also affected my weight. When you can’t leave the house for years, you’re going to put on weight. Being overweight makes the lymphoedema worse but I can’t exercise because I can’t walk easily. It’s a vicious circle.”

Why the right care for lymphoedema and leg ulcers is essential

Further to her referral to a new local specialist complex wound clinic, where a comprehensive assessment was undertaken, Sue’s clinical situation started to improve and an ongoing management plan was agreed between Sue, the complex clinic lead and the case manager of her current district nursing service and a successful collaborative approach as to the most appropriate wound management and compression therapy for the both her leg ulcer and lymphoedema was maintained.

Sue eventually found further success with compression wraps rather than bandages, but her problems with her legs and feet continued, in the main when for various reasons (cost saving) her care in the community was amended as the result of her having to move health centres.

“I tell people that I went to bed at 50 and I woke up in my 60s. It’s like I’ve lost 13 years of my life. I can’t go round to friends anymore because I worry about leaking. My grandson is ten now and he has never seen me without a bandage on my leg. People don’t realise how serious leg and foot problems are. You think it’s just a scratch and then you end up with no life.”

More recently, Sue’s condition has continued to improve due to a stabilised district nursing input, supported by the former lead of the complex wound clinic – both clinically and educationally. Unfortunately, the local acute healthcare trust decided to close the complex wound clinic in 2019 in order to save money and because they wanted to redeploy specialist staff (all disciplines) into other clinical inpatient areas for a couple of shifts a week, in order to reduce the agency spend the trust was incurring on a regular basis.

Now, in July 2020, Sue has this to say:

“I am pleased to say that my leg ulcers have healed now and in the next few weeks I will be able to have new shoes and be out of bandages after 17 years, so I’m looking forward to the future with new hope’”

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Where’s the harm?

Failure to manage Sue’s lymphoedema at an early stage and then lack of continuity in service provision for complex wounds undoubtedly contributed to her developing leg ulcers and suffering recurrent infection, generally treated by admission to hospital for intravenous antibiotics. As a consequence, she suffered severe pain and had to give up work that she enjoyed as her life became more restricted due to pain, infections, large quantities of exudate from her wounds, subsequent cardiac problems and weight gain. It has been a needlessly long and tortuous journey for Sue and at long last she is getting her life back and is taking pleasure in making positive plans for the future.

References

1. MOFFATT, C.J., KEELEY, V., FRANKS, P.J., RICH, A. and PINNINGTON, L.L., 2017. Chronic oedema: a prevalent health care problem for UK health services. International Wound Journal, 14 (5), pp. 772-781. ISSN 1742-4801
2. MORTIMER PS & ROCKSON SG 2014 New developments in clinical aspects of lymphatic disease. Journal Clinical Investigation 124(3): 915-921