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Stories from March, 2014

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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!

A free space at the Run To The Beat 10K in Wembley on 14th September 2014 has also been offered www.runtothebeat.co.uk Past guests at this unique music challenge event has been Jessie J, Tinie Tempah, Calvin Harris and DJ Fresh.

Email us if you are for the challenge on breathingmatters@ucl.ac.uk

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