IPF Survivor

March 2018

Dear fellow IPF “Survivors”!

My name is Vida and here is a rundown on my journey so far. I hope it helps someone else out there:

  • Diagnosed March 2009
  • Doctor gave me diagnosis and told me my condition could continue to deteriorate or could remain stable – I told him and myself I’d take the “Second Option”
  • Attended respiratory clinics until I became tired of the journey, the waiting and the same results
  • Asked for a 2 year break
  • Managed own housekeeping and gardening okay until September 2014 until the breathlessness became ‘urgent’ (you know how it feels?)
  • After 10 minutes activity I retired to bed
  • Visited Physio once only – helpful (tips listed below)
  • Weighed 111kg in 2009 and was on a blood pressure pill
  • Decided to ease burden on my heart and lungs by dropping 27kg over a 4 year period by giving up supper (ie. no meals after 7pm). Weight just fell off my tall frame. I now weigh 84kg.
  • No longer on blood pressure pill
  • Current oxygen reading at clinic is around 94%
  • Staying as positive as possible under the circumstances – very important!

My doctors have been great. They let me do it my way (I ask for longer times between visits). Since October 2014 when the specialist said “terminal” I have been using my bed a lot. Five minutes activity at a time is now it. Just enough time to make breakfast, a cuppa or a quick meal if I need to or pop out to the mailbox.

Being very lucky I am now at my daughter’s home being looked after and doing what I want. Having easy access to an ensuite makes all the difference also. In addition to using a plastic seat in the shower I can offer up the following tips that have made my life easier over the last year:

  • Eat 5–6 small–medium meals a day (I eat anything and everything in moderation. I eat healthy meals and still include treats like butter, cake, chocolate, 1 glass wine or beer with dinner)
  • Had all kitchen things handy in one place when I was still cooking for myself at home (eg. crockery, cutlery, pots and pans and food items used regularly to reduce movement around the kitchen)
  • Have seats around the house and hallway to sit down when breathless
  • The Physiotherapist told me to drop my shoulders and breathe through my nose
  • Get up by using my legs only – push up which is easier on the lungs rather than pulling myself up using arms
  • Do as much exercise as I can manage eg. Isometrics

In bed I am okay. I enjoy doing my crosswords, reading, writing letters and poetry, playing solitaire, listening to music and the radio, watching TV and movies, keeping abreast of the family concerns and talking on the phone until my breath runs out. I consider myself a very fortunate person.

My biggest help in dealing with all this is – Faith, Hope and Family.

Best wishes,

Vida

PS:

I thought I’d mention the following just in case anyone finds this extra information useful:

  • I have taken Cartia for 30 years (100mg aspirin per day)
  • I have taken Zinc tablets for 10 years and had very few mild coughs or colds
  • I have taken Vitamin D tablets for 6 years as I am no sun-worshipper and I read somewhere that Vitamin D is good for the lungs
  • As a migraine sufferer I just take a Prochlorperazine Maleate 5mg as soon as they start and have done so for 35 years. They work fast and knock it out. Also take the odd Panadol
  • Arthritis comes and goes and I use topical creams for that. No pills. My aim is to avoid pills as much as possible in case they somehow affect the IPF
  • I drink plenty of water and green tea (and black tea up to 3 times a day)
  • I take a teaspoon tip of UMF 10 Manuka Honey whenever I start to cough to ease the coughing straight away (really just a tiny bit of honey on the tip of a teaspoon)
  • 5ml Pholcodine Linctus also helps ease the coughing associated with IPF