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Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Life Without An Umbrella

Authors: Gaynor Leech, Founder of L-W-O and Sarah Bowring L-W-O Member

 

In August 2019 Sarah private message me after I asked her how she was coping knowing that she had been poorly with cellulitis.

Breast Cancer

Although Sarah and I have never met, we have often corresponded via our support group and through messaging.  She has been a supportive member of our support group since joining in February 2016. Sarah was diagnosed with breast cancer in 2010 and was diagnosed with secondary lymphoedema in 2011.  I was diagnosed with breast cancer in 2010 through a routine mammogram.  My diagnosis was scary because I had lumps removed in my 30’s, one in my 40’s both found by myself both thankfully benign but the breast cancer was in the tissue not a lump and would not of been found without the mammogram.  My secondary lymphoedema was diagnosed in 2011, while there are some commonalities both Sarah’s journey and mine have been different.

Sarah’s Story

Being diagnosed with Cancer is difficult enough, Sarah’s was very positive here’s what she had to say about her cancer diagnosis;

“I will be eternally grateful to the surgeon and oncologist for the care I received to enable me to see my children grow into adults and become independent. There was always a plan and I was never frightened as I was always informed of the decisions made and the treatment plan for me to survive and get to the five years clear for my grade and type of cancer” 

In 2011 Sarah was diagnosed with Secondary lymphoedema and like me neither of us could have imagined the challenges we would face living beyond cancer.  Sadly, many HCP’s, family, friends and people in general underestimate what lymphoedema costs in terms of physical health, mental health, financial health and the toll it takes on personal relationships. 

What I love about Sarah is that she has done her best to continue with her normal life which she has shared with our support group members, telling us about her journey, her running activities different compression garments, bandaging and bouts of cellulitis.  She gives our community an understanding of what it is like to live with a chronic condition, and the challenges she faces but she doesn’t allow her lymphoedema to control her life.  She has provided our community with lovely photographs of her journey and activities.  Sarah loved to run and was able to continue with running from starting slowly and picking up to do marathons and she even did a zip wire in 2017.  For now, that has gone.

         

 

In the first year of being diagnosed with Lymphoedema, Sarah had seven bouts of cellulitis mostly from bites and continued throughout the last nine years with bouts of cellulitis.  The most frightening and terrifying turn in her journey started in August 2019 when she couldn’t get any one to listen to how poorly she was.

In August 2019 I was very sad to hear that Sarah had again been diagnosed with cellulitis and this is where her story needs to be told and I will let her do that in her own words.

“Hi Gaynor, I’m not great at the moment to be honest.  My delay in getting someone to listen to me has caused a severe infection.  My rash started with pain then a blotch.  Arm blotches joined and I started to track.  I rang 111.  By the time a doctor did ring it was 4.45 and then I had to drive to A & E on my own.  There was no record of my fast track and the triage nurse wanted me to wait seven hours because I was presenting normally.

I had to go into the corridor and ring 111 again to get readmission via the service and see the on-call doctor, I was immediately sent to CAU (Clinical Assessment Unit).  I still hadn’t been put on the system for bloods etc., so I wasn’t seen by a doctor until 9-9.30 pm.   It has been the most crippling bout of cellulitis resulting in extensive antibiotics because no viable cannula could be inserted despite an anaesthetist trying.  At one point it was suggested they inserted a cannula in my chest, but the risk of further infection was too high.  I needed anti-nausea, pain killer and IV antibiotics by this time.  The IV’s were prescribed for 10 days no beds meant discharge home to a virtual ward, but they couldn’t keep the cannulas viable.

I then had to undergo 2 weeks of triple layer binding which is equivalent to shutting your hand in a car door. The pain and constant pressure have resulted in a reduced use of my dominant hand which now requires physio. The arm although now back to its previous enlarged size remains in flux.  My current care plan exists of four courses of manual lymph drainage but other than that I have antibiotics at home for the 'next time'.

Have you any idea how frightening this is not knowing what is causing the infection having no solutions only the chaos this condition brings? Imagine worrying each day about dying from sepsis?  It's like being at war with an unseen enemy. 

I am now on high oral antibiotics unable to work and need triple layer binding to get my arm back into shape. My lymphoedema team have been brilliant but this should never have happened.  I didn’t want to put this on L-W-O as I think it would be frightening for someone new to the condition.”

I wrote back to Sarah as follows “Hi Sarah, this story needs to be told and I will loop in through social media the LSN, BLS and other professional bodies.  Let me know what you think, please?  Take care and I am really sorry this has happened to you”.

 

13th August 2019 16.53

“Thank you so much for replying Gaynor, I am happy to share this to stop it happening again.  Today I went for a simple blood test to get more antibiotics as the oral antibiotics Linezolid was only seven days.  The infection is still in my arm but low lying, so a simple repeat prescription was all that was required.  I went in for bloods to my surgery, two nurses tried to get bloods from my foot they were unable to do this. I was sent to the outpatient department for cancer patients but without booking me in, so I did not get seen until 3 pm.  I had an appointment with the lymphoedema teams at 1 pm and they managed to speak to a microbiologist who has now prescribed two antibiotics that I will collect tomorrow.  There is no solution my lymphoedema team are trying their best to find a permanent solution.  I have now been off work nearly two weeks without pay”.

Big thank you to Sarah for not only sharing her story in words but for sharing the stages of cellulitis with photographs

Statistics

I asked the Lymphoedema Support Network if they any figures on infection/cellulitis in those living with lymphoedema. Below is the reply I received:

Prof Mortimer would say that “If someone has had more than one episode of cellulitis in a limb, there is almost certainly some failure of lymphatic drainage”. – what we do know is that in 2013-2014, there were 104,598 recorded cases of cellulitis treated in secondary care (hospitals) in the UK, of which 69,229 admissions led to an average stay in hospital of 6 days. The actual incidence is much higher because many cases are treated at home. That means about 3% of all hospital admissions were due to cellulitis.

Lymphoedema has been shown to be one of the top risk factors for cellulitis along with obesity. Annually, the NHS spends £172–254 million on the admission and treatment of patients with cellulitis.

Professor Moffatt did a study in Wandsworth in 2003 which showed that 28% of people with lower limb lymphoedema had an episode of cellulitis and a more recent study in 2016 in Korea showed that 7.95% of lymphoedema patients had had cellulitis.  So, the range is quite high.

On the flip side a study in 1999 over 7 hospitals in France demonstrated that 18% of cellulitis admissions had lymphoedema.

The Lymphoedema Support Network and The British Lymphology Society have produced a joint cellulitis consensus document.  If you click on the LSN link it will take you to the consensus document which you can download in PDF format. On the same LSN webpage there is also another document on ‘The relative merits of Flucloxacillin -v- Amoxicillin in the management of cellulitis'.  Thank you to LSN for providing these statistics.

Providing Balance

Sarah was concerned about putting her horrendous experience on L-W-O support group in case she frightened someone who was newly diagnosed with lymphoedema. At the beginning I suggested that while Sarah and I had some commonalities our journey has been different.

So why does one person living with lymphoedema get frequent bouts of cellulitis and another doesn’t?  At the risk of tempting fate, I have never had cellulitis. When I was first diagnosed with lymphoedema it was described as the worst case by my Breast Consultant, Oncologist and Lymphoedema Clinic had seen, and this is written on all my hospital notes. If I have one regret with hindsight, we did not take photographs.  I was fortunate to get into the lymphoedema clinic within two weeks as an urgent case.  I attended the lymphoedema clinic for MLD (Manual Lymphatic drainage) weekly for a very long time then fortnightly, then three weekly and eventually once a month.  This continued for eight years in 2019 I was discharged from clinic as deemed to be able to look after myself.   

My lymphoedema has stayed confined to my breast, posterior chest wall, although I suspect but not diagnosed it is down most of my right side.  Under my arm and the right side of my breast is by far the most consistently uncomfortable, painful especially late at night.  My daily routine of skin care, massage, drinking plenty of water, movement, weight control is a daily reminder that I live with a chronic incurable condition.  Every day I can feel the swelling therefore, keeping lymphoedema under control is a necessity but I do my best like Sarah to make sure it does not define who I am.

I am a type 2 diabetic, with no history of diabetes in my family and have my own theory as to when this started and why. I swing frequently between being diabetic and pre-diabetic and I am fortunate enough to have been prescribed one of the new generation non-insulin injections that I use once a week.  So how does this relate to my lymphatic system?  For me I have found using my thighs as injection points to be the most successful this has to be alternated every week however, my blood sugars are always lower when my left side is used as opposed to my right side which is where my lymphatic system is at its weakest. 

My Mum often use to say as a family we have quick healing skin.  She could cut herself quite deeply and the healing process would start almost immediately without much intervention and I am the same.  My last major operation in 2017 was a full knee replacement.  When our practice nurse removed the staples on the Monday, she was very concerned that there were signs of infection, I had instructions to keep a watchful eye and to demand an appointment to see her if things got worse.  As a precaution she made an appointment for the Friday.  By the Friday she couldn’t understand why there were no signs of infection and she said anyone looking at my knee would think that the operation was weeks ago and not days.

Asking L-W-O Members

We currently have 1,141 members on our private support group and cellulitis is regularly discussed.  I conducted a poll from 21st January – 31st January 2020 the results are shown in the poll below.

 

 

Unanswered questions

Why does Sarah get recurring bouts of cellulitis?

Why have I been fortunate not to get cellulitis?

 

Over the last six years I have read countless posts and stories on living with lymphoedema and the long term side effects of cellulitis, there have been open posts and then their have been the private conversations like Sarah's behind the scenes.  Some of the posts and stories break my heart but I am also thankful that whatever lymphoedema challenges I have had so far. I have not had to deal with this dreadful infection.

Sarah’s case isn’t an isolated occurrence one of our members who lives with Primary Lymphoedema has had frequent bouts of cellulitis often requiring hospital admission since she was seven years old and she is now in her late 30’s.  Another member waited in A & E sitting on chair for nearly eight hours, only when she threw up and passed out, only then was she assessed by hospital staff.  She had sepsis. Our poll highlighted more stories of cellulitis, hospitalisation, toxic shock and sepsis.

Raising awareness and education is so important but we also need listening skills because if Sarah had been listened to earlier, she would not have had to ring 111 to regain admission to hospital neither would her cellulitis have turned to sepsis.

 

#isanyonelistening?

#lymphoedemaexists

 

 

 

 

 

 

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