Lisa Donnelly
Lisa's Lungs
Fundraising for Asthma + Lung UK
Story
HI there,
I am Lisa a 27 year old my adventure starts when i was 16 months old, I had suffered with what could only be described as a chest infection that was not clearing up with treatment and eventually I was transferred to Great Ormond Street Hospital where I was diagnosed with Desquamative interstitial pneumonitis. In short a rare terminal Lung disease. The prognosis of this condition was really unknown as I had siblings who died very early on from the condition, so treatment was a trial and error basis to try and stabilise the condition which worked!
For the next 17 years i needed limited help occasionally using oxygen and medication and generally trying to avoid infections to reduce inflammation and scaring to the lungs. I wanted to fit in and live a relatively 'normal' life for a child, there was always limitations not to exert myself to much (cross country things like that ), Needed oxygen for flying, avoid getting cold.
To the untrained eye i was like every other child and i never wanted to be treated differently i wanted the same chances as very one else. I did well at school even though i had a lot of time out.
I exceeded the life expectancy of which some medical professions had.
I reached the age where i could no longer attend GOSHospital and was transferred to adult clinic which is a big change. I went to college even had a part time job, and was lucky enough to bring my son into the world. Unfortunately the pregnancy was not straight forward, at 5th month of pregnancy I become ill with pneumonia and ended up on ICU in John Radcliffe Hospital where my son was delivered 13 weeks early by c-section, he had little help and no breathing problems, 8 years on and he is doing well. It took me nearly a year after to get back up on my feet and off oxygen and medication.
Things stabilised again and I became without a consultant for the lung condition it took time to find a consultant I was happy to stay with, i had local doctors maintaining things in the mean time (who admitted was out of their comfort zone dealing with me, despite that did a remarkable job). Finally in 2010 I went to Papworth Hospital and found a consultant I was extremely happy with. Because of length of time without a specialist consultation I was put through the ringer. Results showed wear and tear as expected on the heart, otherwise all was good. Apart from a little white mass (nodule) showed on a CT scan in the right lung.
In light of these results I underwent a series of further tests, PET scans CT scans to see if anything had changed or there was any unwanted activity. All seemed stable for now. Life carried on as normal just assumed the nodule was scarring or a hormone growth. 2012 I noticed subtle changes in my health more breathless tired and increased heart rate. Then life took a dramatic change I was admitted to hospital with chronic pain in my chest in right lung. I had antibiotics and X-rays which showed increased consolidation in mid right zone. CT scans showed that the nodule had grown, it was no longer a small white mass, but, a large mass. Going from 2 cms to 5cms. Due to the underlying lung disease it made it very difficult for the medical team to proceed forward. The only way to diagnose was with a lung needle biopsy, the risks were high but needed. 26th july 2012 I had the biopsy and all went really well was a very odd experience looking at this needle poking out off my chest.
What seemed a life time of waiting for the results the day finally came on the 9th august 2012. Where I became reacquainted with a familiar doctor who was apart of the team who was caring for me when I had my son. He delivered 3 words that answered my questions "I am sorry". There it was "CANCER". My options were very limited. It was inoperable due to size and location, and risks associated with damage already existing. Radiotherapy seemed the lesser of all evils, and the most viable treatment but no guarantees. Sept-oct 2012 I felt very pro-active while I was receiving radiotherapy. I had a few ups and downs after, infections, inflammation. Was on steroids which had side affects, became dependent on oxygen ever since. But I was alive and in january 2013 i was told the tumour had shrunk more than expected.
So ever since, I have tried to rebuild the body. increase exercise to strengthen everything again. But no matter how much I tried, I have not been able to get back to my natural state of being. Chest pain increased, x-rays looked stable, none the less I had a CT scan done. On the 11th April 2014 I was told that the cancer was growing again, and no more treatment is available. It is now about the quality of my life not the quantity, I accepted a long time ago that my life was always going to be cut short through a illness, never expected it to be cancer, but life is what it is, and your never given more than you can cope with!
This is how I have arrived here to ask you all for your help to raise money or donate towards the research of Interstitial lung diseases and lung cancer, so that no-one else has to battle in the dark! To find better ways for prevention or treatments for these conditions. To make a better quality of life, so that we can enjoy the lives that we have with less restriction or total isolation!
With the ultimate aim of one day being able to cure.
I have been ill pretty much my whole life and I know no different, but for others the change is huge, emotionally and physically. I'm very lucky to have my family and a supportive medical team. But these diseases do not care what we have, or want, which is all the more reason to try and make a difference!
Whether I like it or not there is a divide between living and existing and I all I want, is for others to live and not exist. I have all intentions of making this life count in life and death. When my time comes I have made provision for my body to go to medical research. And to my families horror i will then be stuffed and mounted hahahaha :D
Thank you for reading my story!!!!
Please feel free to follow me on
https://www.facebook.com/LisasLungs
I am Lisa a 27 year old my adventure starts when i was 16 months old, I had suffered with what could only be described as a chest infection that was not clearing up with treatment and eventually I was transferred to Great Ormond Street Hospital where I was diagnosed with Desquamative interstitial pneumonitis. In short a rare terminal Lung disease. The prognosis of this condition was really unknown as I had siblings who died very early on from the condition, so treatment was a trial and error basis to try and stabilise the condition which worked!
For the next 17 years i needed limited help occasionally using oxygen and medication and generally trying to avoid infections to reduce inflammation and scaring to the lungs. I wanted to fit in and live a relatively 'normal' life for a child, there was always limitations not to exert myself to much (cross country things like that ), Needed oxygen for flying, avoid getting cold.
To the untrained eye i was like every other child and i never wanted to be treated differently i wanted the same chances as very one else. I did well at school even though i had a lot of time out.
I exceeded the life expectancy of which some medical professions had.
I reached the age where i could no longer attend GOSHospital and was transferred to adult clinic which is a big change. I went to college even had a part time job, and was lucky enough to bring my son into the world. Unfortunately the pregnancy was not straight forward, at 5th month of pregnancy I become ill with pneumonia and ended up on ICU in John Radcliffe Hospital where my son was delivered 13 weeks early by c-section, he had little help and no breathing problems, 8 years on and he is doing well. It took me nearly a year after to get back up on my feet and off oxygen and medication.
Things stabilised again and I became without a consultant for the lung condition it took time to find a consultant I was happy to stay with, i had local doctors maintaining things in the mean time (who admitted was out of their comfort zone dealing with me, despite that did a remarkable job). Finally in 2010 I went to Papworth Hospital and found a consultant I was extremely happy with. Because of length of time without a specialist consultation I was put through the ringer. Results showed wear and tear as expected on the heart, otherwise all was good. Apart from a little white mass (nodule) showed on a CT scan in the right lung.
In light of these results I underwent a series of further tests, PET scans CT scans to see if anything had changed or there was any unwanted activity. All seemed stable for now. Life carried on as normal just assumed the nodule was scarring or a hormone growth. 2012 I noticed subtle changes in my health more breathless tired and increased heart rate. Then life took a dramatic change I was admitted to hospital with chronic pain in my chest in right lung. I had antibiotics and X-rays which showed increased consolidation in mid right zone. CT scans showed that the nodule had grown, it was no longer a small white mass, but, a large mass. Going from 2 cms to 5cms. Due to the underlying lung disease it made it very difficult for the medical team to proceed forward. The only way to diagnose was with a lung needle biopsy, the risks were high but needed. 26th july 2012 I had the biopsy and all went really well was a very odd experience looking at this needle poking out off my chest.
What seemed a life time of waiting for the results the day finally came on the 9th august 2012. Where I became reacquainted with a familiar doctor who was apart of the team who was caring for me when I had my son. He delivered 3 words that answered my questions "I am sorry". There it was "CANCER". My options were very limited. It was inoperable due to size and location, and risks associated with damage already existing. Radiotherapy seemed the lesser of all evils, and the most viable treatment but no guarantees. Sept-oct 2012 I felt very pro-active while I was receiving radiotherapy. I had a few ups and downs after, infections, inflammation. Was on steroids which had side affects, became dependent on oxygen ever since. But I was alive and in january 2013 i was told the tumour had shrunk more than expected.
So ever since, I have tried to rebuild the body. increase exercise to strengthen everything again. But no matter how much I tried, I have not been able to get back to my natural state of being. Chest pain increased, x-rays looked stable, none the less I had a CT scan done. On the 11th April 2014 I was told that the cancer was growing again, and no more treatment is available. It is now about the quality of my life not the quantity, I accepted a long time ago that my life was always going to be cut short through a illness, never expected it to be cancer, but life is what it is, and your never given more than you can cope with!
This is how I have arrived here to ask you all for your help to raise money or donate towards the research of Interstitial lung diseases and lung cancer, so that no-one else has to battle in the dark! To find better ways for prevention or treatments for these conditions. To make a better quality of life, so that we can enjoy the lives that we have with less restriction or total isolation!
With the ultimate aim of one day being able to cure.
I have been ill pretty much my whole life and I know no different, but for others the change is huge, emotionally and physically. I'm very lucky to have my family and a supportive medical team. But these diseases do not care what we have, or want, which is all the more reason to try and make a difference!
Whether I like it or not there is a divide between living and existing and I all I want, is for others to live and not exist. I have all intentions of making this life count in life and death. When my time comes I have made provision for my body to go to medical research. And to my families horror i will then be stuffed and mounted hahahaha :D
Thank you for reading my story!!!!
Please feel free to follow me on
https://www.facebook.com/LisasLungs