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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

Conversation with Lisa West

Author: Gaynor Leech Founder of L-W-O

Lisa first shared her story with L-W-O in October 2017, and what a journey it's been for her.   She 38 years old and lives in the beautiful city of Exeter in Devon. Up until she was seven years old, she was fit and healthy apart from a couple of broken bones, and normal childhood injuries. In 1988, Lisa remembers feeling extremely unwell with a pain in the left knee, this went on for days until her Mum took her to their local hospital. The next part is blurry as she spent 3 weeks in hospital as she had osteomyelitis in her knee. This was explained that it was septic arthritis, poison on the bone.

 

A few years passed and she seemed to pick up every infection going and remembers the sadness in her Mum's face each time Lisa was admitted to hospital. Lymphoedema not only affects the person living with the condition but all the family.  “I remember my older sister begging the doctors to stop me hurting.”

Lisa's West's family, her Sister, Mum and Lisa

 

Cellulitis

 

When she turned 14, she had a red swollen hand again admitted to hospital and was told it was tendonitis but unknown to her until years later it was recorded in her notes as cellulitis.

On the day Lisa turned 21, she felt like she was coming down with the flu, then a rash appeared above my knee.  At that time there was a realisation that a pattern had formed which became a serious issue, every 7 years.  “This turned out to be her first serious case of cellulitis.  Again, she was treated by IV antibiotics. I still seemed to pick up every infection going from ear, throat and skin infections and nobody can tell me why?”

 

In 2007 those those flu-like symptoms reappeared, the shivering the immense headache, her body in pain and then hours later the rash had pickled the whole of her right foot and leg. “I remember the fear as I was told it was cellulitis again but this time, I had septicemia and I wasn't in a good way and they were hoping it had been caught in time. Thankfully someone was looking down on me because thanks to all the wonderful doctors and specialists I came on and given long term antibiotics, to try and prevent this reoccurring.”

 

This is where Lisa felt her journey really began. Thinking back to August 17th, 2011, she had been married just over 3 months and should have been enjoying being a newlywed.  She woke her husband in the early hours telling him she was freezing, he looked at her with what I now call ‘the look’.  He knew straight away it was cellulitis. Lisa left it all day (foolishly) and now knows better, because then she started hallucinating.

 

“I remember the confusion, the panic on everyone faces around me but if felt calm just wanted the headache to go and I wanted to get warm”.  This time it was back in the left leg she remembers the swelling and saying, “it will go down, won't it?”  The doctor replying “yes of course”.  Lisa had septicemia again and was moved to a high dependency ward, there was talk of surgery and skin grafts. 

Lisa with her very support Hubby

 

Lymphoedema

 

“This was the worst time of my life”.  She was fighting to stay alive her organs were failing.  Again, the medical team were amazing, four months later and still off work, the swelling was still there.  Each day was a struggle feeling so tired and she had no energy.  Lisa had regular GP appointments and she remembers asking “when will my leg return to normal?”  In a soft voice and sadness in his eyes her GP said, “it won't, you have lymphoedema in both legs”. I remember saying ok, “what's that?”  Lisa doesn't really remember his full reply, apart from him saying that he would get her measured for some stockings. 

 

Two months later I was referred to the lymphoedema clinic run by three Macmillan nurses and I remember thinking why I don't have cancer?  She was measured and fitted with those brown stockings my ‘granny stockings’ as she calls them.  Lisa was able to take this all in her stride, but some days she felt confusion and didn't know what this diagnosis meant to her or what would happen next and she still believed her life would return to normal.  Now Lisa wears compression wraps and she cannot go without them  because “I swell beyond belief the limbs become heavy and hard”. 

 

Lisa didn't realise the battle she was going to have. She developed severe eczema on both legs which leaves her prone to infections. Daily routines include applying topical creams and moisturisers to her legs four times a day. Hospital appointments and GP appointments are constant.  She has been prescribed the medication Methotrexate for her eczema which suppresses her already low immune system and has monthly blood tests. Lisa has experienced over 20 different strains of cellulitis since she was 14 and because of getting septicemia so many times it has damaged her lymph nodes in her groin which led to her being a two-legged Lymphie. 

 

Mental Health

 

Some days “I do say why me? Then I'm like snap out of it be grateful you have your life, you still have two legs, and then I smile because I am lucky because I am here living my life.  I have dark days but without my husband and family I don't know where I'd be. People say I don't know how you do it, but they have got me through they have shared my journey with me”.

 

Since L-W-O published her blog in October 2017 she has updated her journey for us.  Lisa knew at the time that it would only be part of her journey and couldn’t have known what the future held.

 

Since writing for us Lisa has had countless more bouts of the dreaded cellulitis. In 2018 she was hospitalised twice. This has taken a toll on her mental health.  Nobody can give her the answers as to why she keeps getting cellulitis. “I take care of myself; I look after my skin, but it keeps rearing its ugly head. I have had it every month from July 2018 until February 2019.

 

“I’ve cried so many tears, the frustration has gotten to me I felt like giving in The support from my GP, my Lymphie nurses, my dermatologist consultant as always has been amazing. But I baffle them, and they say I’m unlucky”.  

 

On one of the hospital admissions last year an A&E consultant asked if she’d ever been given a heart scan or spinal scan?  “I looked at him blankly as did my husband and asked why?” This made no sense to Lisa as she had cellulitis.  The consultant explained that germs can hide themselves in heart valves or the spinal cord and break free or remain undetected. I panicked thinking he was insinuating I had a heart issue. He went to speak to someone else, but I never saw him again, the problem with A&E is that it is like a conveyor belt. This is still something I need to find out more about because the cellulitis has taken a toll on my legs and caused more significant damage to my legs.

 

Lisa did put the question to our support group members on why an A&E consultant would ask if she had been given a scan.  Unfortunately, no one could help with her question.  However, at the LSN Conference 2018 I showed the post to Karen Friett CEO of the Lymphoedema Support Network and she suggested I spoke to Professor Peter Mortimer who was there as one of the speakers.  He read the posts but because they were vague and out of context, he couldn’t give an answer but did suggest we put the question on the open forum for Lymphatic Education & Research Network (LE&RN).  The care Lisa receives from her Lymphoedema clinic has been spot on. New wraps, bandaging and LymphAssist treatment in the last few months have made things more bearable. Sadly, for Lisa she was diagnosed with fybromyalgia which her medical team believe was triggered by her lymphoedema and she now received specialist care.

 

Family and Friends

 

Her confidence has been knocked more than she thought possible, but she has found a new circle of friends and attends local wrestling shows around the southwest that has given her a new lease of life. “Watching these guys help me take a break from the stresses and strains of everything.  My husband and family are as amazing as ever.  I couldn’t do this alone”.

Lisa with her two favourite Wrestlers

 

“Every day I learn something new about lymphoedema, at first, I felt ashamed and lost confidence but now I'm loud and proud and shout about my lymphoedema because we need to raise awareness about it. I always talk about it and make sure I educate people, you can find someone to talk to that understands by joining a support group.  I hope to anyone going through this realises you are not alone; we are a family.

 

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