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#Breathtember … Let’s Make a Difference Together!

Thank you to all of our supporters who got together to Get Out Of Breath for #Breathtember last month to help raise awareness of pulmonary fibrosis during September’s global PF awareness month.

colt-team-marseille-to-barcelona-2016liz-wiacek_swim-serpentine_25-9-16From cycling across the Pyrenees to a push-up challenge, from swimming the Serpentine to a sponsored trampoline jump session.  You all did your best to spread the word about pulmonary fibrosis.

And why did we do this … here’s why:

  • Men are nearly twice as likely as women to suffer from IPF.
  • There are 5000 new cases of IPF every year in the UK.
  • 50% of IPF sufferers die within 3 years of diagnosis.
  • More than 30,000 people will be diagnosed with IPF in the 27 EU countries each year. 
  • IPF is more common than all leukaemias conbined. 
  • Most patients are diagnosed 1-12 years after their first symptoms. 
  • 5 million people worldwide have IPF. 

We need more funding to change these statistics.

Thank you for your help during #Breathtember … let’s make a difference together!

Wales Breathes Easier

Mandy Sterling and Theresia Mikolash in WalesThank you so much to Mandy Stirling who raised over £1000 for Breathing Matters at her 40th birthday instead of receiving presents to celebrate her new decade. This was in honour of her lovely goddaughter, Belle, who has a rare lung disease.

The cheque was presented to Dr Theresia Mikolash from Breathing Matters.

Mandy reported to the Western Telegraph: “The hotel will continue to raise money over the coming years in the hope that better treatment or a cure can be found so that Belle, as well as others, can live out a normal life and not be dependent on medication.”

Thanks to Mandy and all her party guests.

Read the report from the Western Telegraph:

David Longman: A Massive Loss

David Longman photoIt is with great sadness that I report David Longman’s death earlier this year on 19th March 2015. After having established successful careers in journalism and advertising, David gave up his job and sold his house with the sole purpose of promoting photodynamic therapy (PDT) as a cancer treatment. He was inspired to do this after witnessing how effective PDT was at treating a tumour affecting a member of his own family.

He set up the charity “Killing Cancer” in 2006 and built close ties with UCH where PDT is being developed for cancers affecting the lungs and other organs. He campaigned tirelessly and passionately, but obviously became very frustrated at the slow pace of change in medicine, often giving the impression that he would prefer to knock the door down rather than look for the keys!

He leaves me with many happy memories of research meetings, media interviews, introducing patients to Prince Charles, and even fundraising days spent fishing on Roger Daltrey’s lake in Sussex.

His untimely and unexpected death is a cause for much personal sadness but, more importantly, a great loss to medicine and a terrible blow for his family.

Obituary kindly written by Dr Jeremy George

 

 

 

 

A Trek for my Grandmother, By Harpreet Dhatt

On Christmas Eve 2013, pulmonary fibrosis took away the most important person in my life. My grandmother, Surjit Kaur, was my best friend; she gave me unconditional love and support. She was an incredibly loving and kind woman. Every moment of my life has a memory of her, and it’s incomprehensible that she won’t be a part of my future. There is not a day that goes by where my heart doesn’t ache for one last hug. Every single second without her is just incredibly painful.

As part of a trip to South America this year, I have decided to trek the Inca Trail to Machu Picchu in memory of my dear grandmother.  I thought this would be a wonderful opportunity to raise money for a charity that is close to my heart. Breathing Matters is a charity that focuses its attention on various lung diseases and infections, but primarily Idiopathic pulmonary fibrosis. Pulmonary fibrosis is a very rare disease that causes scarring of the lung tissue and in many cases it is fatal as there is no cure. 

Breathing Matters is one of the few charities in the UK that actually funds clinical research at UCL. Their aim in the long run is to find a cure, but they also research ways to prevent the illness as well as making it liveable and manageable. 

If the money I raise can help others avoid the loss of a loved one, then the hellish trek will definitely be worth it. So if you have any spare change, please donate it to Breathing Matters in memory of Surjit Kaur to help those people out there who still have a chance – https://www.justgiving.com/Harpreet-Dhatt/

Thank you very much for taking the time to read this.

My Dad, by Chloe Ham

Clive Ham, my dad, was 56 when he was diagnosed with Idiopathic Pulmonary Fibrosis. We never imagined that within 4 years of being diagnosed my dad would lose his fight against this terrible, devastating disease.
 
Dad had always been very active and joined the police cadets at the age of 17. This involved dad taking part in sporting activities like abseiling, kayaking and mountain climbing which he loved to do. Dad was an outdoors person and loved his time as a cadet. From there, he then went on to work in the police force where he stayed for 43 years. Dad was an extremely hard worker and dedicated to his job, but he always found time for his family. Growing up, my brother and I were very fortunate to be taken to so many different places and experience so many different things. He was the person everyone looked up to, went to when we needed help and supported us in whatever life decided to throw at us. My dad was truly the greatest father, most devoted husband and kindest friend we could have ever wished for.
 
I could count on one hand the amount of times dad had been ill or needed to go to the doctors about something, but when he started to get a niggly cough that didn’t seem to be getting any better, dad decided to get it checked out. They referred him for breathing tests and chest x-rays and that was when we were told it was IPF. We’d never heard of IPF before so it came as a shock to all of us, but dad being dad reassured us and said it would all be fine. We knew they were going to be monitoring dad’s breathing so we weren’t too worried about it at the start. As time went on, dad had good days and bad days where the cough seemed to be unbearable for him. On days like these, he looked weak which was not like dad at all.
 
It was in February of this year, however, that dad’s spirits were lifted; during a routine check-up, we were told about a trial drug at UCLH which they were going to consider him for. We were pinning all our hopes on dad being accepted and he was due to go to UCLH to see Dr Porter at the end of April, a week after coming home from our holiday. Sadly, my dad passed away on Monday 7th April, a day into our holiday. He was taken too soon and we are devastated that he never got the opportunity to try this new drugs trial and have a chance of possibly feeling well again.
 
There was no doubt in our minds that the charity we are supporting is Breathing Matters. They do fantastic work into the research of IPF and let’s hope one day we can find a cure for this cruel disease. We are continuing our fundraising efforts and, in September, my friend Nicola is cycling from London to Paris for 4 gruelling days in memory of my dad and to help raise awareness of Idiopathic Pulmonary Fibrosis. Nicola’s fundraising page is http://www.justgiving.com/Nicola-Spray1, If you would like to support Nicola, we would be very grateful for your donation.
 
We love you and miss you so much, dad. You will always be in our thoughts and forever in our hearts. xxxxx

My Amazing Father, David John de Warrenne

We recently lost my Dad, David John de Warrenne, to an awful disease called Idiopathic Pulmonary Fibrosis, and pneumonia.

Dad was such a lovely and truly wonderful man loved by so many. I couldn’t have asked for a better father. He was also an extremely talented musician, winning top competitions throughout his life and dazzling many with his “spine tingling” performances. He studied with the famous Julius Katchen, the famous concert pianist in his Paris apartment overlooking the Eiffel Tower. Dad, and his fellow pupil and dear friend of over 50 years Anthony Green, at 19 years old were the first white people to perform in Bermuda, casting aside the racial segregation of the times; something they were both very proud of.

Following this, Dad worked hard all his life, teaching at Trinity School in Croydon for 40 years, arranging, accompanying and writing music for Trinity Boys Choir and the much coveted “DW” choir, the public face of Trinity Boys Choir.

Not only this, but along the way he helped his students and family, not just musically, but with everyday obstacles life threw at them. Especially me, as his son, I always confided in him whenever I needed to and always depended on him.

Dad always approached life in a positive way and never let his illness affect him. Unfortunately, Dad was diagnosed with IPF not long after his retirement which restricted his ability to carry out every day tasks. After many years teaching, it’s so sad that he never got a fair crack at retirement.

Idiopathic means “no reason for”, pulmonary “lung” and fibrosis “scarring” and thus has no explanation for its occurrence. But upon diagnosis, it’s life changing with extremely devastating statistics. Thus, research and testing needs to be continued and advanced and hence why the family and I have chosen “Breathing Matters” as the charity of choice to raise money in Dad’s name.

All donations in Dad’s name are welcome and greatly received http://www.justgiving.com/AdeW4DdeW. I will also be undertaking a challenge, yet to be decided, in Dad’s name in due course.

Sleep well my amazing father, love forever, Alex

My Amazing Father was written by Alex de Warrenne

 

A Tribute to Beryl Wakeman

Beryl Wakeman 12.04.1936 to 10.01.2014 

My Mom was diagnosed with bronchiectasis in July 2013, she had been ill for a long time, but was very strong willed.  In July, we borrowed an oxygen reader and realised her oxygen was only 73%; we went straight to A&E.  Within a couple of days, she was admitted into critical care, where she was placed on bipap.  They said they would give her 5 days of treatment, but the damage to her lungs were too far gone, we were told that she would probably die on the ward. 

Beryl had other ideas and pulled through.  She came home with home oxygen and was recommended for palliative care.  We had no assistance for 6 weeks, when she was readmitted again, this time only for a week.  She was the first patient in the area to get IV antibiotics at home with nurses calling twice a day to administer.  She was full of energy and back to life. 

We were then allocated a nurse “Rachel” which reassured Beryl and the family.  We had a great Christmas, but a few days later her oxygen levels began to drop.  We went back into A&E where we were told there was no need for critical care or the bipap machine.  We left her at 11pm on the ward and, when we went to visit her early the following morning, she was in critical care where she made progress for the first few days, then started to deline.  Her CO2 levels would not come down even with the bipap then we were told there was no more they could do for her.

She was transfered into a side room on a respiratory ward.  Beryl died peacefully in her sleep at 06.15 the following day surrounded by her family.

Throughout her illness, Beryl never once moaned and always had a smile.

She made us so proud, we love you and miss you.

Hiram, Andrew & Gordon Wakeman

The Back-Room Team

This was tweeted on the 16th September by Breathing Matters (@BreathingMatter): ”Imagine not being able to breathe and imagine having no cure! Help us find a cure for #IPF #Pulmonaryfibrosis http://t.co/B1AqJTAVkm

140 characters focusses the mind and that pretty much sums up the fear and frustration experienced by people living with IPF, as well as their loved ones. As a medical writer, I’m no stranger to tight word/character limits and it’s amazing how much science you can communicate when you put your mind to it, but I found the level of accuracy contained within that tweet impressive.  Even more so because those 140 ‘tweeted’ characters made me cry. Powerful stuff, social media.

There is a tiredness associated with the day-to-day living with the symptoms of any illness, because everything becomes contingent on ‘Illness’ being held at bay to a suitable degree to let you carry on with living. The frustrating thing being that nothing is mindless any more: You have to travel after or with the appropriate medication and adapt your schedule to accommodate any necessary timescales and dietary requirements as well.

The stark reality, death is something no one wants to face, so when it’s thrust upon you as an almost-certainty then a Countdown-style clock begins ticking for you and those who love you. Everything becomes a rush and urgent and possibly-the-last and it would be great to make sure that everything gets done at speed so nothing gets missed off. It’s really important to do things quickly and (this is important) in the same way as before so no one is worried that things might be getting worse.

If only you weren’t so tired, then you could get all these things done. If only it was a tiredness that could be fixed by a lie down rather than by a rather frustrating inability to fill up your lungs with air. If only you could get your breath enough to walk, do what you used to do, so neither you or your loved ones have all the memories of how ‘it used to be’ thrown at your hearts.

That all came to mind when I read that tweet. That’s why I cried.

Everyone gets used to routines in time, even a schedule of doctor appointments, hospital visits, and lung function tests – humans like habits, and routine is comforting. As a relative, the lack of knowledge is incredibly frustrating and, as each specialist runs out of options, it can feel like another door closing. This may be aggravated by my scientific background, so a more helpful way of looking at it may be that, as you acquire a new specialist, or leave one behind, you are making proactive and empowering decisions to grab a new opportunity to own your illness and its treatment.  I’ve experienced the effect that this feeling of control can have on both the patient and their closest family. Strong words and feelings for an ongoing battle: It’s why you ‘fight’ cancer and ‘beat’ a virus.

If knowledge is power, then mindset is the mould to shape it, with and family and friends are the ‘back-room team’ to help put it in place. Andy Murray is a team of one out on court, but the pictures of him in the changing room post-Wimbledon included several others who all  felt every twinge and psychological dip with him during that match. Taking back control from IPF is an incredibly brave and difficult thing and may also feel incredibly lonely. As one of those in the back-room team, I know that we’d give anything to help (along with any additional specialists brought into your entourage to replace those you decide you no longer need). You’ll never be a burden; you’d actually be doing us a favour too!

Waiting to Jump for Joy Again

MY ONGOING TRANSPLANT JOURNEY, by Marie Maldonado

Ten years ago, breathing started to become painful for me and climbing stairs became a minor problem. I was diagnosed with ‘fibrosing alveolitis’ which soon changed its name to ‘idiopathic pulmonary fibrosis’. Life continued more or less as normal. Some five years after this first diagnosis, I moved to North London and changed my pulmonologist. During my first appointment with Dr Jo Porter at UCH, I learned that what I have is a rare disease called systemic sclerosis (aka scleroderma.) This is an auto-immune disease which can take several forms. With me, it’s chosen to attack my lungs. But life went on more or less as normal.

Five years down the line, it became obvious that life wasn’t normal any more. I had to stop work. Since 1982, I had been a London Blue Badge tourist guide; a job I loved. Retirement was not an attractive option. In the second half of 2012, I was referred to the scleroderma clinic at Royal Free Hospital and was put on a form of chemotherapy. I only had two infusions, a month apart, when it was discovered that my liver was becoming damaged. A little later, tests revealed two pulmonary embolisms that meant I had to be put on Warfarin. Not long after this, I was tested for pulmonary hypertension and found to have a ‘stiff’ heart. Things were obviously not looking good and I was given ambulatory oxygen. A few more months, and I’m now using oxygen 16 hours a day. The sofa and the TV have become my friends.

Back at UCH, Dr Porter asked – for the second time – if I would consider being evaluated for a lung transplant. My first answer had been ‘no thanks’. This time I took into account the reality of how limited my life had become and agreed to be assessed at Papworth Hospital. I had little hope that they would see me as a suitable candidate: I’m 63 and I live alone. But within a couple of weeks, I had an appointment for a preliminary appointment at Papworth and this seemed to go very well.  I met the transplant doctors and co-ordinators and was given a huge amount of information. Perhaps, more importantly, I was encouraged to ask anything at all about the transplant process. It was explained very clearly that a lung transplant would not necessarily extend my life, but it could certainly give me a far better quality of life. There were plenty of warnings though: I would remain immune suppressed for the rest of my life; thus, there would always be a danger of infection. Rejection is a major problem too and the enormous amount of different medications would open up the possibility of kidney failure, skin cancer and other challenges. All of which, the medical staff stressed, can be dealt with. When they asked me if I still wanted to go ahead, the answer was a huge ‘yes’.

Within a week I was back at Papworth for three days of tests. Everything was explained. Every question answered. I was treated with enormous kindness and consideration throughout and knew that I was in very good hands. On 21st August 2013, to my surprise and delight, I received a phone call to say I was actively on the waiting list and should pack a bag to keep by the door, ready for the call when will tell me that a suitable lung has become available.

That was three months ago. There’s no way of knowing when that call will come. As I see it, there are two possible outcomes: either I die fairly soon, weak, feeble and breathless, or I’m given a new lung. If I survive, I may have anything up to another ten years during which, in spite of being poisoned by all the toxic chemicals I shall be required to ingest every day, in spite of the possibility of rejection, I shall be able to run for buses and walk in the woods and climb stairs and hills and cliffs. And jump for joy. Won’t that be wonderful?

 

My Father, by Manjiry Tamhane,

My Father  – By Manjiry Tamhane, Patron of Breathing Matters

My father was the life and soul of any party. He was laid back, carefree, open-minded and adventurous. He loved comedy and he had his own library of cringe worthy jokes that had my brother and I groaning and laughing throughout our childhood. He came from a humble background but worked and studied hard to provide a better life for his children. His mother, my grandmother, couldn’t read or write let alone speak English but my father, through sheer hard work and determination, went on to become a Partner in a top London architectural firm. His story is not that dissimilar to make others of his generation. He worked hard, saved for the future and enjoyed his time with family and friends.

In the first 72 years of his life, my father was rarely ill, not even a cold. He hardly ever went to see a doctor and had never been admitted to hospital. He was fit, active and apart from a small belly resulting from his love of good food and wine, he was generally in good shape.

In the early summer of 2008, he had flu like symptoms. It was usual but we simply thought that even the mighty could occasionally catch a cold. The symptoms persisted and his breathing became slightly laboured and wheezy. Almost asthmatic. My mother insisted he visit his GP who dismissed it as a simple cold. My mum unconvinced insisted he get checked out more thoroughly. On closer inspection, the doctor agreed that something was not quite right and he was immediately admitted to hospital and placed on oxygen. That was the start of a 5 week journey that would change our lives forever more.

The Diagnosis

My father was admitted to the Royal Free Hospital in London and, after undergoing some tests and chest x-rays, he was diagnosed with Idiopathic Pulmonary Fibrosis. When the doctors told me, I could barely pronounce it let alone understand what it was. My father was in hospital for the first time in his life and looked at my mother and I apologetically for all the fuss and nuisance he was causing. His only concern was getting back home and back to his normal life. Both my mother and father had faith that he would be fine in a few weeks. I sat with the doctors on several occasions during those first two weeks trying to understand what was this disease, what caused it, what were the treatments, what was the life expectancy, what drugs were available. Every question was met with a vague non-committal answer. ‘Idiopathic’ meaning unknown cause, no real treatments, a few drugs but no clear evidence as to whether they would work. As a family, we were lost, confused and scared. The only treatment appeared to be a course of steroids and an oxygen cylinder. Three weeks after, my father was admitted, his condition appeared to stabilise; however, I advised my brother to come back from Australia to see my father as the lack of answers from the doctors gave me a sense that all was not quite as it seemed. My father was scheduled to be released from the hospital the day after my brother arrived. We knew adjustments were required at home. We converted one of the ground floor rooms in to a bedroom and with the help of the hospital we ordered a special bed, organized oxygen tanks at home and portable tanks that would allow him to make short trips. Everything was in place to care for my father back home and give him as normal a life as possible.

The night before he was released, my father caught an infection in the hospital and was immediately moved to an ICU room and placed on a BiPAP machine. The scarring in his lungs made it difficult to create enough oxygen to pass into his bloodstream, increasing the pressure on his heart. His pulse rate was very high which increased his anxiety further. I think the night times were the hardest for him. Listening to all the machines and the beeps in the darkness of an empty room. One day, when the BiPaP was removed to enable him to eat, he told me how much he hated the nights and that all he wanted was to go home. From that moment onwards, I spent every night in the hospital with him.

As the days went on, his breathing became more labored and the pain became more intense and he was prescribed Oromorph.

In the space of less than 5 weeks, I’d gone from thinking that my father would be around for many years to come, to realizing that I might have just a few years to suddenly realizing that it was more like a few months. We arranged a meeting with the consultant in charge and in that final meeting they told us that in all likelihood he had just a few weeks. My brother and I agonized over what to tell our mum and more importantly what to tell my dad. There is no wrong or right answer.

My father died the next morning.

The Relentless Search for Answers

I have read many stories from grieving family members since my father passed away and each of these stories paint a picture of a loving mother or father, sister, brother, uncle who have lost their battle with IPF and the sense of confusion and devastation for the family members left behind.

When the doctors first gave us the diagnosis of IPF, I went straight to the internet to search for information. Back in 2008, there was very little information available. I found a few obscure research papers originating in Japan and the US describing various theories and inconclusive results from various trials and I spent hours pouring through trying to find any information that would help. I couldn’t find any information telling me clearly what the disease was, what caused it and what treatments were available.

Eventually, I did find a US website called the Pulmonary Fibrosis Foundation. It started to provide answers to many of my questions and helped to shed some light for me on this disease.

Information in the UK, however, was sorely lacking. I knew at the time something needed to be done about that, but at the time my own grief and caring for my mother took priority.

Coping With the Grief

There’s no handbook or fast track for dealing with grief. After my brother returned to Australia, I was left to help my mother cope with grief and adjust to life without my father. I’m not sure how one goes from spending 45 years with the same person to suddenly adjusting to be alone. After the initial shock and disbelief comes the anger and depression, and this can last a very long time. My mother was very angry for a long time. She felt cheated, robbed of precious time with my father. To begin with, I tried to make life as easy for her as possible. Sorting out any problems, dealing with all the paperwork and being with her as much as I could. Nothing I did seemed to ease her pain and she became more depressed and angry, refusing to go out and see friends and family. After a year, I realized that she was becoming more and more dependent on me and losing her confidence. Even simple tasks such as ringing the gas board to give them the meter reading became too difficult for her. I knew that once she lost her confidence to cope with everyday problems, she would never regain it. The hardest part for me was slowly withdrawing my support and encouraging her to do things for herself. This was probably the single most important thing that I did for her. By giving her the tools and instructions but forcing her to make the phone calls, arrangements and decisions, she slowly gained her confidence and independence. The tasks became a source of distraction and completion of a task became something that restored her self worth and belief. Slowly, over time, the pain eased and she learnt to adjust and cope. Today, she is independent and out-going.