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Oxygen Therapy

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer
Overview of Oxygen Therapy
Dangers of Oxygen and Flame
Custom Oxygen Tank Covers and Cases
Oxy View Glasses
Related Patient Stories

Overview of Oxygen Therapy

Oxygen therapy is often necessary for people who have scleroderma lung involvement. Oxygen is not intended to reduce shortness of breath. Rather, supplementary oxygen reduces burden on the heart and thus helps people live longer. Therefore it is extremely important to wear oxygen as prescribed, whether or not there is shortness of breath. (Also see What is Scleroderma? and Scleroderma Lung Involvement)

Oxygen therapy is a key treatment in respiratory care. The purpose is to increase oxygen saturation in tissues where the saturation levels are too low due to illness or injury. Breathing prescribed oxygen increases the amount of oxygen in the blood, reduces the extra work of the heart, and decreases shortness of breath. Encyclopedia of Surgery.

Critical Comparisons of the Clinical Performance of Oxygen Conserving Devices The mechanical and clinical performances of current oxygen conservers are highly variable and in some instances actually contribute to limitations in exercise ability. Seemingly equivalent technical features do not guarantee equivalent therapeutic functionality. Aishwarya Palwai. American Journal of Respiratory and Critical Care Medicine. February 4, 2010.

Dangers of Oxygen and Flame

Oxygen is often prescribed for people with scleroderma lung involvement.

Fires caused by smoking while using oxygen. 111 cases summarized and documented. Tobacco.org

Oxygen Tank Covers and Carrying Cases

Custom Portable Oxygen Tank Covers. My husband, Gene, who is ISN Vice President, is on oxygen around the clock. So I make custom portable oxygen tank covers, adding pockets in the sizes needed, such as for his medications, billfold, checkbooks, and paperback books. I add a waist strap (in addition to the shoulder harness which comes with his particular unit) to add stability, so he can lean over without the tank flopping around. I use plastic mesh over the tank vents.

He has a whole wardrobe of oxygen cases now, some fancy, some casual, and in different colors to complement his wardrobe. We select a fabric applique for a front pocket, because it makes him more approachable, especially by children who are curious about the oxygen gadgets and gizmos.

Combined with his Oxy View glasses, the covers serve to turn his oxygen into a fashion statement, which he is proud to wear to his part-time job as a Panera restaurant greeter. Look for ways to make oxygen fun, even fashionable! Shelley Ensz, ISN Founder and President.

Update: On 01-07-10, Gene had a single lung transplant, and no longer needs to use oxygen!

Backpack Oxygen. When I first starting using oxygen it was very cumbersome and awkward. I had my purse on one shoulder and my oxygen tank on the other. Every try carrying something on each shoulder when you have no shoulders to speak of? Needless to say, one or both item kept sliding off. It got to the point that I didn't want to go out because it was too much trouble. So I worked with my gas supply company to provide me with a small bottle and 4 foot hose that would fit inside a backpack purse. The backpack carries my oxygen tank, wallet, keys, phone and a few other necessary items. I slip the hose up under my blouse to keep it from flopping around and getting caught on things. Now I can go pretty much anywhere with ease. Janey Willis, ISN Assistant Webmaster.

Oxy View Glasses

Oxy View Glasses, Gene Ensz Oxy View Glasses . (At left, Gene Ensz, ISN Vice President, wearing Oxy View glasses.)

Nasal cannulas for oxygen can be replaced with Oxy View glasses. The oxgen is fed through tubings that connect to the back of the stems. The oxygen goes through a hollow in the glass frames and emerges at the nose piece, where small plastic tubing neatly — and nearly invisibly -- tracks down the side of the nose.

Oxy View glasses are not covered by insurance. Patients or their medical device suppliers order the frames from Oxy View, then take the glasses to a vision shop to have the lenses made. Shelley Ensz, ISN Founder and President.

Related Patient Stories

Angiola: Progressive Systemic Scleroderma (Italy) I would very much like to find other people that find themselves in a similar situation…

Angiola: Sclerodermia Sistemica Progressiva La sclerosi sistemica progressiva mi è stata diagnosticata nel febbraio 1997, quando avevo 57 anni, la diagnosi è stata immediata…

Archie Bailey: Scleroderma: Sue's Story Time has passed since Sue's death. Only those who have experienced the grieving process can understand…

B.C.: Surviving Daughter of Pulmonary Fibrosis Patient Immediately after the diagnosis my father started to go downhill…

Bill Jordan: Surviving Boyfriend of Scleroderma Patient Wendy was heartset on dancing that evening even though she was connected to an oxygen machine…

Bob: Pulmonary Fibrosis I have learned that you can fight Pulmonary Fibrosis and you do not have to give up all the activities you once enjoyed…

Brianne: Surviving Daughter of Scleroderma Patient I think I was eleven when my dad had to go to Edmonton, Canada, for tests…

Corey C: Surviving Daughter of Scleroderma Patient It was a very long process and scary because she really did not know what to expect next…

Gerald: Spouse of Scleroderma Patient She would often comment how she wished they could figure out what was wrong, give her the pill to fix it, and she would feel fine again…

Grace: My Mother's Fight Against Pulmonary Fibrosis I lost my mum eight months ago, after a two-year fight against pulmonary fibrosis…

Jackie: Scleroderma, CREST, and Pulmonary Hypertension We were identical twins, and she died in 1988 from kidney failure…

Joanne: Diffuse Scleroderma (Now in memory of Joanne by Lis) My hands became very swollen and I was unable to make a fist…

Judy Tarro: Diffuse Scleroderma, Sjogren's, Pulmonary Fibrosis and Pulmonary Hypertension The best we can figure, I was diagnosed with diffuse scleroderma in 1956. I am now webmaster of SD World…

June: Widow of Pulmonary Fibrosis Patient I know that I am not the only person to have lost a loved-one to this terrible disease, but life is so empty without him

Karen C: Daughter of Diffuse Scleroderma Patient I am thirty years old and I live in Chile. My father is Juan, he's fifty-two and suffers from diffuse scleroderma…

Krissy: Systemic Scleroderma/Stem Cell Transplant Patient Our home is like a hospital. We have oxygen tanks for when I need extra help breathing, and a lovely kangaroo pump which is how I get my continuous feeding…

Krista: My Caregiver's Story All those years beside him, seeing him suffering, being frustrated about the fact that I could not do anything to help him…

Lori: Surviving Daughter of Father who had Scleroderma We held his hands and told him how much we loved him and watched him take his last breath at 5:50 p.m. on October 6, 2002…

Mani: Son of Systemic Scleroderma Patient (Hyderabad, India) My mother was always complaining of breathlessness, slight fever, and nails and fingers turning blue when exposed to cold air…

Marilyn: Diffuse Scleroderma Being that I was a nurse you would think that I should have picked up on this myself…

Michele C: Surviving Daughter of CREST Patient My dad was diagnosed only four months prior to his death with CREST Syndrome…

Myrianisa: Daughter of a Severe Scleroderma Patient My mother was diagnosed with scleroderma six years ago. At the same time, she was also diagnosed with lupus, Raynaud's, MCTD, pulmonary fibrosis and fibromyalgia…

Naomi: Systemic Sclerosis and Pulmonary Fibrosis My doctor is astonished of my attitude considering I have Raynaud's, my fingers are curling up and I have lost my nails, pulmonary fibrosis…

Pam: Systemic Scleroderma for 27 Years (Australia) I have had several amputations…

Patty S: Localized Scleroderma, Pulmonary Hypertension and Sjögren's I have quit my job and reduced my stress a hundred percent. I am doting on my children and my husband…

Pearl: Surviving Daughter of Pulmonary Fibrosis Patient We watched her struggle daily to breathe, yet there was nothing anyone could do, not even the doctor…

Ron: Fibrosing Alveolitis I was diagnosed in October 1996. Since then I have spent a lot of time in the hospital, including six weeks in intensive care…

Rosemary F: Surviving Daughter of Diffuse Scleroderma Patient She tried to explain it, but it was hard for me to comprehend the disease's symptoms. Mom said that it was the same thing that her oldest sister died from…

Syl: Systemic Scleroderma/CREST/Pulmonary Hypertension/Sjögren's The physician's assistant noticed that my hands went really blue…

Terry: CREST I was told that I have CREST by a doctor who saw me in a Workman's Compensation case…

Theon: Scleroderma and Pneumothorax This is very hard for me, because I was a very active woman, and then suddenly I am totally and completely disabled…

William M: Scleroderma or Lupus I had to give up my career of being a registered nurse (RN) over two years ago due to total disability…

Yally: Dermatitis with Linear/Morphea My daughter has a spot on her left leg, that almost covers it completely…

Yolima: Diffuse Scleroderma I was misdiagnosed for more than a year with so many diseases and given all types of medication for different problems except for the real disease…

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