Newsletter Number 8

Meeting 30th March 2017 at Stanningley Rugby Club.

PURPOSE: “To provide a welcoming, supportive and informative environment for those affected by Pulmonary

Fibrosis in Leeds and the surrounding area.”

Tony announced “I’m back!” gave thanks for all the kind comments, and an outline of his transplant experi-ence. He explained how wonderful The Freeman staff is and, thanks to them, he knows how lucky he is and aware that many will not have his luck. He and Jackie had brought cakes to go with refreshments as a thank you for all the kind thoughts, best wishes and prayers while they were in Newcastle for Tony’s transplant.

There were business cards on the tables for our members to give to others who may be interested in our group. A concentrator, donated by Christopher Davey, who died some months ago, is on offer either for sale or loan. Anyone interested should contact Tony Gowland. Tony Holmes is very poorly and unable to travel to the meeting today, which will prompt thoughts of how to help people to get to meet-ings. We have a car sharing database, or we may be able to fund a taxi from Leeds station. The Masons have donated money to purchase a TV for the Clinic where Support Group information can be displayed.

The Breathe Easy Group The BLF are to fund 9 Breathe Easy Groups. The Seacroft Group is the “blue-print” for the new Groups. Tony Hague explained about the value of exercise. Pat Goodacre expressed how impressed she is with how our Group functions and explained how/why she set up the current Seacroft Breathe Easy Group. She also explained the benefits of regular exercise to lungs, bones, muscles, heart, stress and anxiety lev-els. It also helps to avoid falls. Singing is a very important form of exercise, as is dancing. Pat concluded by inviting members of our Support Group to visit their Breathe Easy Group.

Breathe Easy –Leeds Josie & Tony Haigh,

David & Pat Goodacre

Jackie and Tony Gowland

Good sites for information are:

Action for Pulmonary Fibrosis:

http://www.actionpulmonaryfibrosis.org/

The British Lung Foundation: http://www.blf.org.uk/Page/IPF

Next Meeting Date: 25thMay 2017 1pm to 3 pm

Speaker:- Sean Hornby Topic –Managing Anxiety

& Brian Davies (Choirmaster) Stanningley Rugby Club

Following that: 25th May

Speaker:- T.B.A.

Katie Bagshawe is writing her dissertation on “Investigating the Psychological Impact of Pulmonary Fibrosis” as part of her Degree at Sheffield Hallam University. Her father, who was diagnosed with IPF two years ago, was here with her mother. Katie has brought some information with her, if any-one is interested in helping her with her research.

Mark gave an extremely informative and technical explanation of the procedures of Spirometry, covering an overview of referral pathways and the reasoning behind the various stages. CT scans show changes/differences, whereas Pulmonary Function Tests (PFTs) can give specific measurements. In preparation for a PFT patients are advised to eat only small meals and snacks before tests, not to drink alcohol, and to wear loose clothing. The Team should be informed if there are problems such as cracked ribs or heart problems, as tests should not be held in such cases. Details were given on Spirometry tests, static lung volumes, single breath Co factor and an explanation of how the specified guidelines that must be followed can be difficult for patients. The results are taken to the Chest Clinic or sent to the Consultants via the computer system, usually by the following day. Some discussion followed about the use of predictive indicators and measures, and as to how valuable they are as well as the flaws in their use. ‘Fit to Fly’ procedures were also discussed.

Further information is available on the blf.org.uk website

Read our lung health information. Breathing & lung function tests.

Fundraising

Our speaker:-Mark Townson,

Technician at the Respiratory Laboratory

The husband of David & Sandra Budd’s niece has raised over £1000 for APF, by climbing Mount Kilmanjaro. The collection at Wendy Barr’s fu-neral raised £250 for IPF Leeds. Neil Ward’s funeral raised £472 for IPF Leeds. Garry Valentine’s CD- “The Air that I Breathe” has raised £100 for IPF Leeds & £100 for APF. Our 2 raffle prizes, the meat platter from Garry Valentine, & the bottle of wine from Kim Ellis, raised a magnificent £102. Thank you to all of our members for their support.

Jane Slough recommended “Calypso”, a very good sunscreen for paients taking Perfenidone, it rubs in easily and can be bought at Pound Shops. Jelly babies and marshmallows are good for people with poor appetites.

Mount Kilmanjaro