Are you up for a Challenge?

We are excited to annouce that Breathing Matters have teamed up with Sport for Charity, which incorporates Run for Charity http://www.runforcharity.com/ and Cycle for Charity http://www.cycleforcharity.com/.

They have given us one free place at the Spartan Race and one free place at the Zombie Evacuation Race .  They have also given us a decreased price of £35 registration for both events all year round, subject to availability.  These events are infamous and are a challenge above all else. 

The Spartan Race http://uk.spartanrace.com/ integrates obstacles with the natural terrain to create the best racing experience possible. Each course is unique, so racers never compete on the same course twice.​ What happens if you fall off or fail to complete an obstacle? It’s simple, just drop and give us 30 burpees before moving on!

The Zombie Evacuation Race http://zombieevacuation.com/ is a beginners’ obstacle race.  It’s not just a race, it’s an experience.  Why watch a Zombie Apocalypse … when you can be part of it.  Their mission is to embrace both the athlete and the geek, and for you to leave their events with a smile.

These events are all over the UK – find one near you!

Marie’s Ongoing Story of Optimism

Further to Marie’s article on our website at the end of 2013, Marie still keeps her chin up despite ongoing obstacles.  Here is an update that she wanted to share with you for International Day of Happiness, 20th March 2014.

 

By Marie Maldonado

I was admitted to UCLH on January 27th 2013 and stayed on Ward T08 until February 13th 2013. During this time, my meds were totally changed as we are trying to discover what the ‘nodule’ is that’s been found by CT scan in my right lung. This nodule may be cancerous and has led to Papworth removing me from the transplant list. My extensive research and contacts with lung transplantees all over the world told me that it could be fungal in origin and both Dr Porter and Prof Brown took that on board, and the lab did indeed grow a strange fungus on my sputum. During my first few days on the ward, the team consulted with an expert microbiologist in Bristol and decided which antifungal they would give me. Unfortunately, this new drug (Voriconazole) would be impacted by the Omeprazole which has been shielding me from gastric reflux, part of the Scleroderma package.  The doctors tried removing the Omeprazole from my drug regime and I have been suffering ever since with the most horrible acid reflux/heartburn/indigestion, something that has led to a complete change of diet for me (so perhaps not all bad!) I am now taking Lansoprazole and Ranitidine and the reflux has abated a little, though I am still woken in the night and have to sit chugging Gaviscon for an hour or so.

I asked for a frank talk with Prof Brown about my prognosis and he admitted that I am indeed in end stage fibrosis and basically that I was looking at ‘weeks’. I was discharged with a full care package and now have a carer come in to the flat three times a day as my mobility is limited. I have a wheelchair for hospital visits and my very own ministering angel, who masquerades as my friend, neighbour and ex-colleague, who pushes it for me. To begin with, it was extremely hard to adjust to people letting themselves into my home and doing, very slowly, things that I knew I could do at twice the speed had I only the breath to do them with. Organising the meds has been another challenge as I have nine medications to take in various combinations and at various times throughout the day. However, as time has gone on, it has become much easier as I have been able to get into a routine and as my regular carer has learned what I need doing and how I want it done. (I have turned into an anal mini-Hitler, I’m afraid, sitting like the Queen of Sheba ordering her about.) My friends have been amazing (I never knew I had so many) and I think there have only been two days when I haven’t received a visit, if not from a friend then from a health professional. My social calendar has never been so full. Sometimes, I am grateful when no one is coming as I can then chill out and relax a little more.

It may be because of the meds or it may be the new dietary regime, or it may just be my long held spiritual beliefs bubbling up to the surface again, but I actually feel great!  Indeed, if it weren’t for the fact that I’m very ill, I would be very happy. Hell, I AM very happy! I imagine the doctors think I’m in denial, but I’m truly not; I just have the feeling that, if everything falls into place and the nodule can be seen to be non-cancerous, then I have a very, very, very slim chance of persuading Papworth to put me back on the transplant list and heigh ho, another challenge will begin. (There’s a sense that this period is something of a dry run for what life will be like post transplant, if I ever get that far.) Unfortunately, I don’t think everyone sees it quite this way. The Haringey Palliative Care Nurse whom I have seen has been tremendous as far as practicalities are concerned; she’s obtained bits and pieces of equipment for me and even got my Disability Living Allowance almost tripled. However, her whole focus is on my dying. Let me give you an example: the physio at UCLH arranged for the pulmonary rehab physio from the class I was attending for several months before Christmas to come to my house once a week. He’s another bright young man and he takes me through half an hour or so of gentle exercise with weights, culminating in my ‘walking the hall’. I keep note of how much I do, and each week I increase my score a little or go up a weight. I’m supposed to do this every day, but I truly don’t seem to have the time, plus it is hard to motivate myself when I’m alone. It does make me feel great! When I told the Palliative Nurse about this, she was almost disapproving. I could hear a ‘tut’ and see a shake of the head. I felt she wanted me to stay on the sofa and up the morphine and be comfortable. Unfortunately, Haringey Palliative Care does not go in for any kind of complementary therapies, unlike the Palliatives at UCLH, so my requests for massage, reflexology, etc. have fallen on deaf ears. Luckily, the universe heard my pleas and sent me an aromatherapist who gave me an incredible massage, and yesterday my hairdresser (from Mr Toppers in Tottenham Court Road) came all the way from her home in Brixton to crop my hair. Everything falls into place, like a jigsaw that does itself.

My dietary regime revolves around the reflux and the need not to trigger it. I have taken advice from fellow sufferers and am having some success. No more coffee, chocolate, cheese … in fact, as money is now no object (well, I may as well spend it rather than save for my old age!) I am shopping (or being shopped for) at Planet Organic and Whole Foods Market. I eat only organic, totally healthy food in small portions and I now focus on my food rather than multitasking as I eat. Some of my friends bring me home cooked food to go in the freezer. In fact, the friend coming later today to take me out to Epping Forest is bringing portions of her amazing chicken casserole which we’ll have for lunch before we set off, with a few extra pots to go in the freezer for another day.

I have also taken advantage of having helpers (carers and friends) to tidy and organise my flat, in a very amateur Feng Shui way, to free up energy flow, etc. It works for me, as does surrounding myself with things of beauty. The corners, piled with bits and bobs for years, are being cleared and everything is slowly becoming more organised. It does make a difference. As does practising the Buddhist precept of ‘mindfulness’: organising in my head, for example, what I need to pick up from each room, so that I only have to make one journey.

As far as I can see, end stage fibrosis usually means admission to hospital, possibly an induced coma and then a very quick death. And I wonder if it has to be that way. If more people were able to count their blessings rather than turning their faces to the wall in despair, would their endings at least be easier, gentler and, hard though it is to believe, as enjoyable as mine is proving to be.

Breathing Matters’ Easter Stall, UCH Atrium, 4.4.14

All the fours!  What are you doing on 4.4.14?  How about supporting Breathing Matters’ Easter Stall. 

Jane Walker is kindly organising this Easter Stall in the UCH Atrium between 11am-2pm on Friday, 4th April 2014. 

On sale will be cards, coasters, mini easter eggs and bunnies.

Jane is raising money for Professor Brown’s research into bronchiectasis.

Do come along to say ‘hi’ and support us.

 

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

Is Setting Up a Direct Debit a Cost-Effective Way of Giving?

Direct debits are another popular way to donate regularly – 61% of Which? members who give to charity on a regular basis do it this way. They are easy to arrange – just give your chosen charity your details and they will set up the monthly donations from your bank account.  For larger charities, you can often set one up yourself online.

Many people donating via direct debit are initially signed up via street and door-to-door fundraisers – ‘chuggers’ as they are sometimes known as.  This method of fundraising can often raise hackles, as some people find it intrusive or question whether it is a good use of charity money.

The Public Fundraising Regulatory Association (PFRA) report that the cost for a charity of recruiting a donor via door-to-door or street fundraising is typically £75-£140.  If you were to donate £5 a month, it might take more than two years for the charity to recoup this – so, on the face of it, it does not look a particularly effective way to give, especially if you switch causes periodically.

The PFRA, however, say that it is an effective way for charities to fundraise.  Its spokesman said that in whatever way a donor responds to an appeal from a charity, there will be a period of time before the amount the donor gives covers the cost of what the charity spent to get the donor to give in the first place. 

But the key message is that, if you want you money to go further, cut out the middleman and set up the direct debit yourself.

 

[Taken from Which? Magazine, December 2013]

 

Payroll Giving: a Cost-effective Way to Give

One of the quickest, simplest and most hassle-free ways to give to charity is straight from your salary.  If you are employed and pay income tax via PAYE, this is known as payroll giving.  As donations are taken out of your pre-tax salary, it is a cost effective way to give.  Donating £50 a month via payroll giving will cost you £40 if you are a basic rate taxpayer, and just £30 if you are a higher rate taxpayer. 

To donate via payroll giving, your employer needs to be registered with an approved payroll giving agency.  The three biggest are Give As You Earn, Charities Trust and Charitable Giving.  You can donate to any charity you like and it is the responsibility of the agency to arrange it for you.

The three agencies charge administration feeds of either 25p/month or 4% of your pre-tax donation.  Many employers will cover the cost of the admin fees and some will even match part or all of your donations.  Check what arrangements exist in your company.

Table: Payroll Giving From your Salary

[From Which? Magazine, December 2013]

A UK First: Cryoscopic Diagnosis of IPF

Dr Mikolasch in action

We are delighted to report that, in early February 2013, UCLH diagnosed idiopathic pulmonary fibrosis from a minimally invasive cryoscopic lung biopsy. This is a UK first and was made possible by Breathing Matters. The cryoscopic lung biopsy (CLB) was performed by Dr Theresia Mikolasch (Breathing Matters ‘Lawrence Matz’ Clinical Fellow) under the supervision of Dr Neal Navani at UCLH.  The cryoscope was part-funded by Breathing Matters with monies donated in memory of Ana Timberlake and Dr Mikolasch, who has driven this project forward, was funded by the Lawrence Matz Memorial Fund. 

By working with patients and relatives to address their concerns, Breathing Matters has developed a crucial area of our service to meet patients’ needs. 

This is important for:

1.  The Patient:  who undergoes a day case procedure as opposed to a surgical lung biopsy, thereby avoiding hospital admission, unslightly and painful scar and a chest drain.

2. The histopathologist: who said the quality of the tissue and preservation were excellent and much better than other minimally invasive biopsies due to the freezing during the procedure. 

3. Our ILD research programme: We now have access to lung tissue that is removed, but is excess to that needed for clinical diagnosis. 

Where do we go from here?:

-A multicentre study to investigate the role of early CLB in the patient pathway in idiopathic ILD.

-The resulting increase in tissue samples will be used to expand our complementary basic science programme.

 

 

 

Pulmonary Fibrosis Wish List

  • £5 - Equipment to take blood for testing antibodies for a  patient with IPF
  • £50 - Allows us to grow individual fibroblasts (these are the cells that produce the scarring) in the laboratory from the lungs of patients with IPF to do further studies.
  • £500 - Allows us to isolate the platelets from patients with IPF so that we can examine them in the laboratory and compare them to platelets from people with normal lungs.
  • £5000 – Provides all the equipment and running costs for a ‘Western Bot’ which allows us to look at abnormal proteins in the lungs of patients with pulmonary fibrosis.
  • £50,000 - Pump priming a blue sky research proposal: Allows a senior clinician to undertake a substantial period of research (a year or more) as a named research fellow to develop an hypothesis that is then submitted for full funding (£300K+) from a medical research charity.

Annual Charity Bike Ride, Richmond Park – 8 June 2014

Breathing Matters is holding its annual bike ride at Richmond Park on 8th June 2014 to raise funds for the Centre for Respiratory Research.  Please join us along with other charities from UCLH to cycle around the 7 mile traffic-free circuit of the beautiful Richmond Park in South West London. 

This is a fully marshalled route.  Bring friends and family – and a picnic – for a fun and enjoyable day out!  Cyclists will receive a commemorative T-shirt, goodies and a completion certificate. Cycles are available for hire at Richmond Park.  There is no registration fee and only £25 minimum sponsorship per person. A prize will be given to the highest fundraiser.  You can easily set up your own online fundraising page at the Breathing Matters JustGiving site at http://www.justgiving.com/breathingmatters 

Date: Sunday, 8th June 2014, Registration Time: 10.15-10.30am

Meeting Place: Robin Hood Gate Car Park, Richmond Park

To register for the event or for more information, please contact Donna Basire at breathingmatters@ucl.ac.uk

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!