A MUM-OF-ONE who is dying from a rare combination of illnesses is appealing to her doctors to re-assess her eligibility to be put on the waiting list for a heart and lung transplant – the only known way of saving her life.
Four years ago, former Exeter College student Jo Smith, who lives near Stoke Canon, was diagnosed with heart and lung disease Pulmonary Hypertension (PH), for which there is no known cure other than a heart and lung transplant.
But the 36-year-old was dealt her first devastating blow when she was told a few months later that she also had rare cancer, Non-Hodgkin's Lymphoma, making her the only known person in the world to be struck down with this deadly combination.
And the treatment she can receive for the cancer is minimal because of the strain it could put on her heart and lungs which are weakened due to the PH.
She was since told a large tumour she had removed, was not in fact removed, and been given conflicting advice about whether she can, or cannot be, placed on the transplant waiting list.
Since the Echo first revealed Jo's desperate search for treatment in April and helped launch the Breathe for Jo campaign which attracted a staggering £30,000 in two weeks, Jo's health has deteriorated rapidly.
Jo has remained defiant in her attitude to fight her afflictions for the sake of her four-year-old son Rudey.
She is now registered disabled, barely able to walk without her chest being in agony and being severely out of breath, and she suffers from seizures during which she loses consciousness and stops breathing.
Her best friend Sarah Lacey was behind the campaign and has now enlisted the support of MP for Central Devon Mel Stride to secure Jo a complete reassessment of her health and a multi-disciplinary team meeting for all her doctors so far to conduct a cross-examination of her condition.
They want to know if Jo's cancer could possibly have been misdiagnosed, because she presents none of the typical signs of people with her particular cancer, and if so, whether she can in fact be placed on the transplant waiting list.
They also want a definitive answer on whether, cancer or no cancer, she can be put on the waiting list for a heart and lung transplant because they say they have received conflicting advice.
Sarah described a woeful lack of communication between the Royal Devon & Exeter Hospital, where Jo is treated for the cancer, and Hammersmith Hospital, where she is predominantly treated, because it's the nearest PH unit to Devon.
She said doctors in London had maintained until recently, that Jo cannot go on the transplant waiting list because she has cancer.
However she said a second lymphoma specialist at Hammersmith recently gave her a prognosis of 15 years to live with the cancer so wrote to the transplant department based at the hospital advising that she be added to the transplant waiting list.
But after a long journey up to London this January, she was redelivered the bombshell, that because of the cancer, she cannot be added to the list.
But this was not the first shock. Sarah said Jo was initially told by doctors at Hammersmith that a large tumour was removed from her stomach about two years ago, and when she was re-scanned last year, she was told that it had grown back.
However doctors in Exeter subsequently informed Jo that it was the original tumour which had not been fully removed. The decision to undergo the operation could have cost Jo her life – she was given a 50/50 chance of surviving it due to the stress put on her body by the PH.
They have now submitted a formal complaint to Hammersmith Hospital.
And Mr Stride has now written to the chair of NHS Hammersmith and Fulham Clinical Commissioning Group and the chief executive of Imperial College Healthcare NHS Trust.
Mr Stride, added: "I was extremely concerned to learn of Jo Smith's situation and immediately contacted NHS Hammersmith and Fulham CCG and Imperial College Healthcare NHS Trust requesting that they investigate her case as a matter of urgency. I will continue to follow this case closely and will assist Ms Smith in any way I can."
"Jo's health has massively deteriorated, even walking on the flat is a slow process," said Sarah. "It's a really uncomfortable life for Jo.
"It's been the worst thing ever to watch someone you love suffering so much. It's been heartbreaking.
"We are now seeking another opinion from a top lymphoma specialist and hope this situation is made right soon, because time is not on our side."Now friends plan to launch awareness bid for sufferers
JO and her best friend Sarah are gearing-up to launch an awareness campaign of people living with "invisible illnesses".
The campaign will raise awareness of people living with invisible illnesses who are too often misunderstood or judged, or treated with a lack of empathy, as Jo sadly often has.
Because Jo looks like any other healthy 30-something, she has mistakenly been accused of being drunk, unnecessarily using disabled toilets, and wrongly parking in disabled parking bays.
For the multimedia campaign, to be promoted on social media and mainstream media, the pair hope to recruit a number of volunteers of any age who are living with an invisible illness, with the aim of promoting empathy and understanding.
"There was one occasion at a city restaurant that Jo's boyfriend had to hold her up at the top of the stairs because she felt so ill, and the manager, assuming she'd had too much to drink, asked her to go and get some fresh air.
"Another time, at a different city pub, she went to use the disabled toilet and the manager put her arm up in front of Jo.
"Even when she explained and showed her disabled toilet key, she was told to use the ladies toilets down the stairs.
"Both managers were mortified when I explained what was really wrong with Jo."Support for mum's campaign
Breathe for Jo campaign summary
THE Echo has been following the sad but inspirational story of Jo Smith, who suffers from rare heart and lung disease Pulmonary Hypertension (PH) and lymphatic cancer – a one in seven billion combination.
The Echo supported the launch of the Breathe for Jo campaign in April which had the aim of raising £20,000 to send Jo and her best friend Sarah Lacey to Thailand for what they had been told was pioneering medical treatment.
Within 15 days, after capturing the hearts of hundreds of people nationwide, the generous public donated an incredible £30,000 for the treatment at the Better Being Hospital in Bangkok, Thailand.
The 45-day immunotherapy treatment was thought to be her one and only lifeline.
But within days of arriving, Jo and Sarah made the "heartbreaking" decision to return to Exeter when the treatment they had been promised did not materialise.
Funds have and will continue to be ploughed into alternative therapies, which Jo has been avidly researching.
Sarah, 36, an events organiser, and The Voice star and singer Adam Isaac, also organised Breathe Fest, a two-day music festival to take place in July in Northernhay Gardens, but this was cancelled when funds were raised and for Jo's imminent trip to the Far East.
For more information on the campaign visit the Breathe for Jo Facebook page.
