Living at the end of an Oxygen Tube

By Susan Preston

Living at the end of an Oxygen Tube is a must-read for people on home oxygen therapy and those who care about them.

It benefits medical students and nurses who want to better understand how their patients have to adjust to home oxygen therapy. In fact anyone who works with or for a person on home oxygen will benefit from this, factual, and at times, humorous book.

Living at the end of an Oxygen Tube, Facts and Feelings,  will help you understand the psychological as well as physical aspects of life at the end of an oxygen tube.

It will also help the person who is prescribed home oxygen navigate the learning curve. In the words of someone who bought and reviewed the book… "This is the first book I've found written by someone who shares some of the same health problems that I have. By writing this book, you are educating so many who don't know who to ask their questions to. I feel like I have a new friend in you."

Perhaps it will do the same for you… or your caregivers.

This book is a must-read for you if you need to know you are not alone.

• Language: English
• Publisher: Susan Preston
• Release date: Jun 9, 2019
• ISBN: 9781393411994

Susan Preston

The fact I am alive today is a miracle. The surgery for aneurysms resulted in most of my aorta having a very long graft. Three surgeons had called me called a walking time bomb. But here I am. Well and busy. I was born in Peebles, a town in the Scottish borders, but moved to Australia in 1975. I live in Perth, Western Australia. I have worked as a shop assistant, double loom weaver, trained as a Psychiatric nurse and worked as an After-care Nursing Sister in an outpatient clinic and in the community. My last job (before being bitten by the writing bug) was as a certified computer trainer. (Certificate IV in Training and Assessing). The holder of a Microsoft Master qualification in Office 2007, I enjoyed my work in a Registered Training Centre. I also had some private students and wrote manuals for them re-interpreting the jargon filled, missing steps manuals that left beginners wanting to quit. I loved the 'aha' moment when it clicked for a student, especially mature aged learners. So far two books in this series have been published. Hold the Faith, and book 2, Grow in Grace. After the death of my husband, I was unable to concentrate for long, so spent my writing time completing 'Geoff's Last Journeyings', a record for friends and family my husband's last year in the battle with Pulmonary Fibrosing. I have also kept up my blogs... Hold the Faith. Now, it is time to start work on the existing first draft of book three in the Apostle John series . Christian history fascinates me and a Bible Study on the Apostle John inspired me to set this history down. I am a practising Christian, a Sabbath keeper and member of a very supportive church.

Book preview

Review by Stella Budrikis, MB BS

Most of us seldom think about how we breath. It’s something we do automatically. It’s as simple as breathing we say, when we want to indicate that something doesn’t require much thought.

But if, for some reason, breathing no longer supplies all the oxygen your body needs, you’re going to become very aware of every breath you take. And if you need a constant supply of oxygen delivered through a tube to keep yourself alive, breathing is no longer simple. You’re going to need to know how to handle all the equipment that goes with home oxygen therapy. You’ll also need to deal with the practical, psychological, emotional, and even financial problems that go with living at the end of an oxygen tube. Your family and friends will also have to adjust to your new way of living.

Health professionals, technicians and the suppliers of equipment will provide you with lots of helpful information. Perhaps too much information. It’s likely to be overwhelming at first. And since it’s unlikely that they’ve ever had to live day in, day out, with an oxygen tube, there are aspects of being on home oxygen therapy that they’ve probably never even thought of. Can you keep your cat? How do you use a public toilet while carrying a portable oxygen cylinder?  How do you respond to an invitation to attend a wedding reception?

What you need is a friend who has been there, done that and can speak from first-hand experience.

That is where Susan Preston steps in. She has written the sort of book she wished she could have had herself when she first started home oxygen therapy. It’s a book that deals frankly and in detail with the problems that crop up when you’re living at the end of an oxygen tube, as well as the more obvious issues of how to handle the equipment and benefit from it.

In nine easy-to-navigate sections she covers every aspect of living with home oxygen, from using and maintaining the equipment, to managing daily activities and going out. Each section provides information, warnings, and wonderful glimpses from Susan’s own experience. The information is detailed and practical. Illustrations are included where they are needed. At the end of each section there’s a helpful checklist.

This is a book you could read right through in an hour or two. But it can be referred to again and again when you need to know more about a specific issue. It’s intended to be helpful to carers and family members as well as those on oxygen therapy. Although Susan writes from her experience in Australia, she has done a lot of research to make it useful to readers in the UK and the United States.

Susan doesn’t pretend that life at the end of an oxygen tube is easy. She’s frank about the emotional cost of being limited in what she can do. Yet she writes in a way that encourage those in her situation, and those who care for them, to remain positive. She helps us to see the humour in situations that might otherwise seem demoralising or depressing. Her book should be recommended reading to anyone involved in managing home oxygen therapy.

Stella Budrikis, MB BS

Home Oxygen Therapy

Oxygen therapy is not prescribed to cure breathlessness. Not everyone who suffers from COPD (Chronic Obstructive Pulmonary Disease) or CCF (Congestive Cardiac Failure, also known as Congestive Heart Failure) will be prescribed home oxygen.

The criteria for prescribing home oxygen therapy is – patients who have symptoms and signs of chronic hypoxaemia. (An abnormally low concentration of oxygen in the blood.)

Note: This book is about my experience as a user of home oxygen therapy. I have COPD and CCF, amongst other diseases, but it is those two that have led to me having an abnormally low concentration of oxygen in my blood.

The information in this book is the result of a combination of my personal experience and research I have had to make when I did not understand the information I had been given. I have included explanations I received when I asked the oxygen nursing staff at Silver Chain, as well as Telehealth and Respiratory Services, which is also a service run by Silver Chain.)

Because each of us is different, even if we have the same disease(s), if you need advice, please contact your medical professional. You may want to check with them if some of what I share is suitable for you.

Please note: This book is written in Australian/UK English so the spelling and grammar will differ to the US spelling and grammar.

Credits

About the Cover: I wanted something to represent the vortex that it felt I was in during the early stages of adjusting to this new way of life, and the equipment invading my life.

Many thanks to John and Mariela Reiss who re-did the original cover to represent this feeling.

Images: unless otherwise attributed, Susan M B Preston, ©2019

In the following sections, other than the author images, credit to the following...

Scattered throughout the text–  Field Marshall’s hat. (Image found on Pinterest.)

‘Introduction’ Pro, Contra (Pixabay)

‘Introduction’ Nurse and patient (Pixabay)

‘Introduction’ Green Smiley face (Pixabay)

‘Section 2’  Symptoms of Getting too much Oxygen – Face. (Pixabay)

‘Section 2’ To Do For This Section –  Ornaments – cut from a larger image

‘Section 3’ Field Marshall hat – the Equipment – image found on Pinterest.

‘Section 3’ House interior. (Pixabay)

‘Section 3’ Pets – ‘Norwood’ by Mariela Reiss. Used with permission

‘Section 3’ Safety Advice Summarized – Caution sign (Pixabay)

‘Section 6’ Dressing and Undressing – Plan (Pixabay)

‘Section 6’ Everyday life at the end of an Oxygen tube – cartoon woman (Unsplash)

‘Section 7’ Reasons for the restrictions –  Lungs (Pixabay, cut from larger image.)

Field Marshall’s hat. Image found on Pinterest.

Index

Facts and Feelings

Review by Stella Budrikis, MB BS

Home Oxygen Therapy

Introduction

From the Author – who lives at the end of an oxygen tube

Why this book?

She’ll be right mate

This book is in sections

Categories of home oxygen users...

Learning curve

What is oxygen?

For carers, home helps

Signs you need oxygen

My experience:

Blood gas test... (ABG)

Grieving the loss of ability

Psychological...

Physical

Benefits of oxygen

My experience

A word about ‘end of life’ care.

Section 2

Types of home oxygen

Warnings:

My experience:

Information about Home Oxygen and costs.

Home Oxygen charges in a couple of other countries...

The running cost:

Assistance – within Australia...

Federal government funding

State government funding

My experience in Western Australia...

Financial help in Western Australia if you have been prescribed Home Oxygen.

You will need two forms.

From the Western Power website:

Assistance – other countries

In the UK –

In the USA –

For US Medicare...

Prescription

Oxygen can be dangerous

What are the symptoms of getting too much oxygen?

Feel you are not benefitting from the oxygen any more?

Ordering Replacement Cylinders

Fault with the Concentrator

My experience – sometimes things go wrong.

To do for this section

When you are ready...

Other ‘To Do’ matters...

Warning:

In a power outage...

Section 3 – the Equipment

Be prepared...Your home will be ‘invaded’ by the necessary equipment.

An overview and brief explanation of the initial equipment.

The Oxygen Concentrator

Consider...

Why an oxygen concentrator is noisy... technical details...

Back to the practical needs...

Home oxygen therapy involves much more than equipment.

Changes to your home

However, some changes need to be made...

An advance warning:

Pets

The Pros and Cons of pets for a person with lung disease.

Pros

Cons

How to keep a loved pet

Other changes

Cooking

Possible solutions...

Safety advice summarized

Things to do for this section

Section 4 – Basic beginning information

First, a warning:

My experience

Tubing:

Hazards – my experience

Simple Maintenance of the Concentrator

Things to do for this section

Section 5

The ‘Need-to-Knows.’

Types of nasal prongs

Inserting the nasal prongs

Wearing the prongs

Carers, families and helpers:

Types of nasal cannulas

When to change the nasal cannula/prongs

Adjusting to oxygen

My experience

Things to check if you do not think you are receiving oxygen...

Troubleshooting

Back to using oxygen...

What you might expect

How to deal with nasal problems

Things to do for this section

Section 6

Everyday Life at the end of the oxygen tube

Starting at the beginning.

You need an ‘action plan’

Example: My action plan from my GP

You need an oximeter

It is important to know what your normal, resting, saturation level is.

Example oxygen saturation levels

My experience

Signs of worsening condition

Using your Oximeter

Another type of action plan

If you have heart problems...

Online monitoring.

Procedure:

Living alone...

Other plans.

Things you might include on the list:

Previously simple things

Carers, family members and helpers

Showering/bathing

Avoid products with strong scents.

Bathing

Showering

Washing your hair

Getting dried

Dressing and undressing

Lower garments

Upper garments...

My experience

Going to the toilet.

Beware of the toilet door.

Making a meal

What is the reason you are on oxygen?

The practical business of preparing a meal...

Food preparation

To serve the meal

Eating

Clearing up

Things to do for this section

Section 7

Planning your everyday life.

Carers, family, helpers – and you

Save your breath in the kitchen

Things that are difficult now...

My experience

Save your breath in the laundry

Hand washing

Machine washing

Hanging out the clothes

Reasons for the restrictions

Going to bed.

Housework

Things to do for this section

Section 8 - Going out

The regulator

Changing the oxygen cylinder

Prepare the new cylinder.

On the old cylinder.

Connect the regulator to the new cylinder.

Do you drive?

First... if you drive and want to continue to drive.

Legal issues about oxygen in a car–

Psychological.

Practical issues.

My experience

Physical

Going out with an oxygen cylinder...

If you live alone,

My experience

Bad case scenario

Planning

What to consider when