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tributes & thank you's

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!