Mum has two terminal illnesses and treating either one could kill her

Marc Astley
Authored by Marc Astley
Posted Thursday, April 10, 2014 - 1:31pm
A 36-year-old mum is the only person in the world with two rare terminal conditions - and treating one means the other would kill her. Jo Smith, 36, has a unique combination of diseases and doctors say the odds of suffering both is over five billion to one. She needs a heart and lung transplant to have any hope of beating the blood vessel disorder pulmonary hypertension (PH). Jo Smith suffers from pulmonary hypertension and lymphatic cancer. She is thought to be the first person in the world to suffer from these two different rare terminal diseases. But doctors say she can't be put on a waiting list for the lifesaving organs - because she is also suffering from cancer. Similarly, the radiotherapy that could cure her lymphatic cancer cannot be performed because her weakened lungs and heart would likely fail. Ms Smith said: 'I've always been quite a positive person. I've never let it impact on my life. But it's becoming impossible now - it's starting to effect everything I do. 'It's devastating, but I have to deal with it. I have my little son to take care of. He takes my mind off things. 'I've only recently told him, I've had to tell him so he understands why I can't run after him. 'He tries to care for me, he's so sweet. He'll come and give me a little pat on the back and stroke my hair and asks me when I'll get better.' With two serious illnesses, she says her only hope is a new form of immunotherapy treatment only available in Thailand. Ms Smith hopes the pioneering therapy can cure her cancer and stop the advancement of the pulmonary hypertension without leaving her three-year-old son Rudey without a mother. But with both conditions simultaneously attacking her body, her family and friends have challenged themselves to raise the £30,000 she needs for treatment in just 30 days. Ms Smith, of Exeter, Devon, first noticed she was becoming tired and and drained of energy six months after giving birth to Rudey in October 2010. Hope: Ms Smith says her only hope is a new form of immunotherapy treatment available only in Thailand She went to her GP complaining that she was suffering stabbing chest pains and was too exhausted to change nappies, walk up stairs or make the bed. She was diagnosed with pulmonary hypertension, an incurable degenerative disease caused by increased blood pressure that narrows or destroys the pulmonary arteries. In severe cases, it damages the right side of the heart, making it increasingly difficult to pump blood and oxygen, eventually leading to heart failure. Ms Smith was told not to have another child because the stress of pregnancy would likely kill her and the baby. But worse news was to follow in 2011 when a routine scan revealed a huge tumour beside her kidneys. To her horror, she was diagnosed a cancer of the lymphocytes, a type of white blood cell that fights infection in the body. Cancer specialists wanted to prescribe her immediate radiotherapy - but the specialists treating her for pulmonary hypertension vetoed the gruelling treatment because it could kill her. Instead, she was offered an operation to have the tumour removed by surgeons at London's Hammersmith Hospital, a operation which she was given a 50/50 chance of survival. After agonising for a year, she had surgery. But without radiotherapy, she cannot halt the progress of smaller cancers circulating her lymphatic system. Ms Smith said: 'The doctors weren't expecting this, and I wasn't expecting to hear this. We hoped the operation would at least have had some sort of positive impact. 'But if anything, the impact of such a massive operation made it worse. I didn't want to take any more risks, the operation was enough of a risk. 'If it was just me, I may have felt differently, but I'm a mum, I couldn't compromise my survival.' A heart and lung transplant could treat her pulmonary hypertension but that would not be sanctioned by the NHS because she has cancer and would likely die. Plight: Ms Smith's friends have challenged themselves to raise the £30,000 she needs for treatment in just 30 days She would also have to be cancer-free for five years to qualify for donor organs. Instead, she will seek out the expertise of doctors at the 'The Better Being Hospital' in Bangkok who specialise in alternative 'functional' medicine. Their experts combat chronic illnesses though a combination of conventional medicine as well as nutrition, diet, exercise, supplements and detoxification programs. Ms Smith's treatment would take 45 days with an added 20 days of home therapy. Her best friend Sarah Lacey is teaming up with the singer Adam Isaac, a former quarter-finalist on BBC's The Voice, to put on a music festival called Breathe Fest to raise the funds. Breathe Fest is taking place at in Exeter on Friday, July 11, and Saturday, July 12. Tickets and more information will be available when the event website goes live in the coming days, at www.breathefest.com.
Share this