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Truro woman's life saved by a double lung swap

By West Briton  |  Posted: October 04, 2012

  • Linda Jones, who has had a life-saving double lung transplant, can now walk into Truro.

  • Linda Jones, who has had a life-saving double lung transplant, can now walk into Truro.

  • Linda Jones, who has had a life-saving double lung transplant, can now walk into Truro.

  • Linda Jones, who has had a life-saving double lung transplant, can now walk into Truro.

  • Linda Jones, who has had a life-saving double lung transplant, can now walk into Truro.

  • Linda Jones, who has had a life-saving double lung transplant, can now walk into Truro.

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DECADES after being given a terminal diagnosis, a Truro woman has had a rare, life-saving double lung transplant.

Only 171 people underwent the procedure in the UK last year. Linda Jones had been encouraged to ask to be put on the waiting list by her carer, Alison Bowker.

The operation has transformed Linda's life. She had previously lived like a hermit as she struggled for breath so badly that washing and dressing would take an entire day.

But since the operation she now walks into town from her Bodmin Road home and has fulfilled her dream of returning to see Truro City Football Club play.

The 55-year-old said: "I feel as though I have been frozen for years and someone has finally woken me up. It's amazing, people tell me I look ten years younger."

She has been left partially sighted, her liver and kidneys were close to failing and other complications remain from living with the condition for two decades, but she added: "I'm not perfect but my lungs are fantastic. It's saved my life."

Linda has alpha one, a genetic condition which can result in serious liver or lung disease, or both.

It was discovered when she was rushed into hospital at the age of 34, struggling to breathe. The former council employee was told nothing could be done and she struggled on with the "invisible" disease.

She said: "No one realised how ill I was, because they cannot see your illness."

Her consultant Martin Carby, a respiratory physician at London's Harefield Hospital, said: "Linda did not have long to live – we managed to match her with an organ donor just in time.

End-stage

"She had end-stage emphysema which destroys the lung tissue. Instead of having normal lungs which are like a car sponge, quite a substantial thing with lots of spaces within it, a diseased lung is like a piece of lace with great big holes in it."

Joining a Breathe group in Falmouth helped Linda keep fit for the transplant and she is now writing a book about her experience and campaigning for people to become organ donors.

She said: "Someone died to save my life, so I want to try and help other people now."

Mr Carby added: "There are masses of people who need lung transplants and don't get them because we restrict access to the waiting list so it is realistic. One of the major barriers is consent to organ donation."

For more information about becoming an organ donor visit www.organdonation.nhs.uk

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  • Maryjean71  |  October 05 2012, 6:46AM

    I was thrilled to read about Linda Jones and her Alpha-1 health story and am happy she now able to do things she could not do in years. Kudos to Linda's caregivers for kept urging her to apply for a transplant. So, what does my health have to do with this article about Linda? I am a second generation American (originally from Phila, PA). My grandfather (William James Thomas) born and raised in Penryn, Cornwall and at 21-years-old he came to visit Rhode Island with his brother-in-law (George Oppy) and he never returned to Penryn. Every once in a while I look to see what is taking place in Cornwall. My health issues began in the late 1989's; it was the start of my downfall health wise. It started with asthma attacks and allergies and went down hill from there. Since I was at a point where I could not work any more due to my health, I moved to Virginia 15-months ago to care for my newborn granddaughter when my daughter returned to work. It took moving to Virginia to find out what was wrong with me. I met with a Pulmonologist here and on my initial visit after explaining my health issues; Dr. Duggan said he wanted some lab work done. He had a suspicion I have a genetic disorder whose proper name is: Alpha-1 Antitrypsin. The lab work came back positive. The relief I felt was overwhelming to know what is wrong with me. With all the asthma attacks I have had in over 25-years, only 34% of my lungs remain. For those who do not know, Alpha-1 Antitrypsin is a genetic disorder., It can end with the patient if their children test negative, it stops there, or so I am told. Most people are able to fight infections, with A-1AT; your cells do not have the protective coating as others do, making you prone to infections. It is a never-ending vicious cycle. I recently began a treatment with a medicine called Xolair (pronounced zol-air) and while it is not an immediate relief, it can take up to four months to feel better - which I slowly am. I go every four weeks for two injections. In the future, I look to be off some medications (of which I look forward to). Since I take Prednisone (a steroid) daily, I have become a diabetic and gained weight. A suggestion to Linda, if you have children, I would have them tested for A1AT. My daughter and mother have tested negative, so I know the genetic disorder is from my fathers' side of the family. I do not know if I am a candidate as of yet for a double lung transplant, but someday I may be on the waiting list. I am willing to take anti-rejection pills if I can get off the other meds I take. Until then I am thankful for what health I have. It would be interesting if you do a follow up story on Linda in six months to see how she is progressing. I will be taking a copy of it to Dr. Duggan in November when I see him. Thank you for the article.

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