Comprehensive Review of Pulmonary Hypertension and Treatment ...
'I Had A Double Lung Transplant And Had To Learn To Breathe Again'
Carly Edge was watching television with her parents when the life-saving call she'd been waiting years for came. The lung transplant she desperately needed could go ahead but they must drop everything and go straight away.
Aged 29 Carly could hardly breathe or walk anymore because of cystic fibrosis she'd been diagnosed with aged six weeks. The inherited condition causes sticky mucus to build up in the lungs and digestive system causing lung infections and digestive problems.
Carly remembers she was watching I'm a Celebrity Get Me Out of Here at home in Deganwy, Conwy, when the call came. Far from being nervous, her first thought was: "Get these awful lungs out of me".
Read more: Young man with 'heart of gold' in desperate race for kidney donor after being told he faces three-year wait
Carly had been relatively healthy throughout school before her condition began to deteriorate rapidly in her twenties. She said she realised then there was no option but to go on the lung transplant list.
"My health was relatively stable throughout school and I got my GCSEs and A levels, but then in my mid twenties I really started to struggle and the only option was to go on the transplant list for new lungs. I was put on the waiting list for a transplant then out of the blue you get a call. It can be any hour of any day 365 days a year and you have to drop everything and rush there.
"I had the call in November 2018 when I was at home with my parents watching television. We were watching I'm a Celebrity Get Me Out of Here. I was so poorly the first thought that went through my head was 'get these awful lungs out of me'. I could hardly walk or breathe by this point."
Waking up after the gruelling 11-hour operation at Wythenshawe Hospital in Manchester, Carly was alarmed because she could no longer feel herself breathe. She was so used to breathing being a struggle and now she needed to learn how to take deep breaths again.
"Before the transplant my heart rate was so fast and I could always feel myself breathing. When I woke up after the transplant it was strange as I could not feel myself breathing.
"I remember saying to the nurse 'Am I breathing OK?' . I didn't know if I was breathing properly because I couldn't feel anything, which felt surreal. I did not realise how poorly I was until I had my new lungs. Because it was such a slow decline I had got used to feeling that way.
"Because you are not used to breathing so deeply, you have to learn to breathe again by taking big, deep breaths instead of short, shallow breaths. Everyone takes breathing for granted. Until you are in a position like me where you can't breathe and have to learn to breathe again."
The "huge emotion" of an organ transplant was followed by rehabilitation to build up Carly's muscles and lungs. Nearly five years post-transplant she says she feels "amazing".
"I didn't know life like this existed. All the care I received before, during and to still this day was out of this world and I can never thank them all enough. In my head I was fine before the transplant because I could do some exercises, but I coughed 24/7 literally. I always had a cough, but now I don't cough and I am so well."
Before the transplant Carly's life had begun to revolve around treatment for cystic fibrosis. She needed constant physiotherapy, used a nebuliser to help her breathe multiple times a day and took 30 tablets every day.
Now she goes to the gym and walks up hills locally when she could not even walk on the flat before the transplant. Carly also hopes to walk up Snowdon for the Newstart Transplant Charity at Wythenshawe Hospital.
Now Carly is also following her dream of becoming a nurse after an Access to HE diploma at Coleg Llandrillo. After GCSEs and A levels at school Carly did an accountancy apprenticeship but never went to university.
Now she is healthier she decided to follow her dream after being inspired by the treatment she had in hospital. Carly successfully completed her Health Care diploma at Coleg Llandrillo's Rhos campus and is going on to study a nursing degree with Wrexham Glyndwr University in St Asaph in the autumn.
She was also among students at Grwp Llandrillo Menai who won Access Learner of the Year awards. She won the maximum distinction for her Healthcare Diploma.
She said: "I have been given this second chance going on to do nursing. It's been a long wait for me to be well enough. I have been in the patient's shoes so I know how it feels to be a patient more. I know what it's like to be in hospital for weeks at a time."
Carly knows that her transplant is not a cure and she must still keep an eye on her health as well as the patients she'll care for: "I have had the transplant but it is not a cure and my body could reject the lungs at any moment."
Carly still has to go for check ups every three months and takes medication. She said she will be forever grateful to her donor and their family. She is also grateful for the NHS care she has had and the help at college to pursue her dream: "I've had such wonderful nurses and doctors my whole life from the age of seven, and I'd like to be able to help people the same way.
"I've had to wait a long time until I was healthy enough to even be able to think about doing a course and giving it my all. Coming to college to do the Access course has been amazing in terms of learning new skills and preparing me for university. It got me back into the swing of actually learning."
Cystic Fibrosis News
Nov. 14, 2022 — Researchers have developed a simple urine test to measure the severity of the serious disease cystic fibrosis and assess the effect of new ...
Oct. 25, 2022 — Cystic fibrosis is missed more often in newborn screenings for non-white than white babies, creating higher risk for irreversible lung damage and other serious outcomes in Black, Hispanic, Asian, ...
Sep. 29, 2022 — Cystic fibrosis patients who supplement their diet with vitamin C can also derive greater benefit from another antioxidant, vitamin E, resulting in a reduction in damaging inflammation, a study ...
Aug. 1, 2022 — Cystic fibrosis (CF) is caused by a mutation of the CFTR gene. While there are many hundreds of known mutations, not all of them are currently treatable which means a significant number of CF ...
July 27, 2022 — Infants from minoritized racial and ethnic backgrounds who have positive newborn screening tests for cystic fibrosis received their diagnostic follow-up for the disease later than recommended and ...
Oct. 21, 2021 — In the largest study of its kind, researchers found that the lower airways in children with cystic fibrosis (CF) have a higher burden of infection, more inflammation and lower diversity of ...
Oct. 19, 2021 — A dogma-challenging discovery reveals that highly adapted bacterial communities in the sinuses of people with cystic fibrosis become more fragmented and experience mutations that erode their genomes. ...
Aug. 9, 2021 — Researchers corrected mutations that cause cystic fibrosis in cultured human stem cells. They used a technique called prime editing to replace the 'faulty' piece of DNA with a healthy ...
July 19, 2021 — An experimental drug suggests that a 'path is clearly achievable' to treat currently untreatable cases of cystic fibrosis disease caused by nonsense mutations. This includes about 11 ...
June 16, 2021 — A new CF treatment strategy involves small, nucleic acid molecules called oligonucleotides that can correct some of the gene defects that underlie CF but are not addressed by existing modulator ...
May 14, 2021 — New nanotechnology could change the lives of thousands of people living with cystic fibrosis (CF) as groundbreaking research shows it can improve the effectiveness of the CF antibiotic Tobramycin, ...
May 6, 2021 — A team of researchers has developed a molecular catalog of cells in healthy lungs and the lungs of people with cystic ...
Apr. 29, 2021 — Scientists have been able to track how a multi-drug resistant organism is able to evolve and spread widely among cystic fibrosis patients - showing that it can evolve rapidly within an individual ...
Feb. 27, 2021 — Researchers and their partners have discovered a slimy strategy used by bacteria to defeat antibiotics and other drugs used to combat infections afflicting people with cystic ...
Jan. 13, 2021 — Excess mucus in the lungs can be fatal for asthma patients, but scientists have broken up those secretions at the molecular level and reversed their often deadly ...
Dec. 17, 2020 — A drug widely used to treat fungal infections improved key biomarkers in lung tissue cultures as well as in the noses of patients with cystic fibrosis, a clinical study ...
Nov. 19, 2020 — For young people with cystic fibrosis, lung infection with Staphylococcus aureus, MRSA, is common and is treated with antibiotics in the hope that this will prevent a decline in lung function. ...
Nov. 4, 2020 — A mutation in the gene that causes cystic fibrosis may accelerate heart function decline in those with Duchenne muscular dystrophy (DMD), a new study suggests. The findings could help doctors develop ...
Oct. 28, 2020 — New research examines the properties of the mucus of cystic fibrosis (CF) patients and the role it plays in a pathogens' ability to survive. The new information could have important implications ...
New, Rapid Way To Diagnose Lung Infections
Kotagiri, an associate professor of pharmaceutical sciences at the UC James L. Winkle College of Pharmacy, has been awarded a five-year $3 million, R01 grant from the National Heart, Lung, and Blood Institute (NHLBI) to develop and study the effectiveness of different kinds of injectable probes (metallic contrast agents) that would collect at the site of the infection and immediately light up under a nuclear imaging machine, known as a PET scan.
Currently, radiologists use chest X-rays to confirm the diagnosis of pneumonia and other infections in the lungs. An X-ray, however, cannot determine the specifics of the infection or whether the infection is bacterial, viral or fungal. A specific diagnosis can only be determined by a pathologist, after culturing a sample of lung tissue which is collected from an invasive procedure (called a bronchoscopy) and takes time, typically 2-3 days.
Critically ill patients, however, such as those with infectious pneumonia and underlying conditions such as chronic obstructive pulmonary disease (COPD), might not have time to spare, says Kotagiri.Advertisement
An added benefit, he says, is that the contrast agent development process "doesn't require elaborate processing or preparation time." This is critical as development of contrast agents can be time-consuming and complicated. A simple and fast process is expected to reduce preparation time in a clinical laboratory and potentially enable adoption of the technology in a clinical setting.With this study, in animal models, Kotagiri and colleagues will only be looking at bacterial and viral pneumonias in conjunction with COPD, but the imaging approach has the potential to apply to other types of infections such as fungal infections or conditions such as cystic fibrosis.
Imaging the patient after treatment, Kotagiri says, could also identify whether the patient is responding to medications such as antibiotics.
Reference :
Comments
Post a Comment