Oxygen

Here is an overview of the site:

Coping

An often overlooked yet important concern is the emotional well-being of chronically ill patients, caregivers and friends. PHCentral addresses this issue by providing our visitors with support resources on the site, on the Internet and in their own community. We also try to connect people online through email lists, diaries, message boards and chat sessions.

Our Support System Includes:

  • Support Group Listings

    List or find a PH support group near you.

  • Patient / Caregiver Diaries

    Journals written by PH patients and caregivers who wish to share their lives with others

  • PH Friends Photo Album

    This page is filled with old and new PH friends.  We’ll be happy to add your photo to our album. 

  • Tips & Tricks

    Information and tips for making your life a little easier; a place to share practical and useful tips with others.

  • Tidbits

    Things you should know but probably don't.

  • Features

    Articles on many subjects written expressly for PHCentral.

  • Travel

    Travel tips and information for patients on supplemental oxygen.

  • Memorials

    Photos and stories of friends we’ve lost.

  • Creative Corner

    A showcase of arts and crafts by PH friends.

  • Pet Corner

    Patients share their stories and photos of the furry, feathered and scaly pets that enrich their lives and give them comfort.

  • Books

    Publications we think you might want to check out organized in three groupings: coping, medical and financial. If you would like to add a good read to our list, please write to us.

  • Links

    Here you will find links to other websites and organizations we think you might find useful. If you find a site you think would be a good addition to PHCentral, drop us a line.


Medical

PHCentral's medical section is provided to explain the basics about pulmonary hypertension, the diagnostic process and available treatments. . Although we do try to keep current, the information you find here may be incomplete.  We strongly urge site visitors seeking the latest medical advice and treatment options for PH and any of the diseases associated with PH to gather information from a variety of reputable sources.


Financial

  • Insurance Matters (formerly under Action Central)

    We have compiled a list of useful resources you will want to investigate if you have questions about private or government medical insurance coverage. We cover health insurance basics as well as U.S. government sponsored health insurance plans. You will also find a number of articles written by our resident guru Alan Harder on the social security / disability system and several others written expressly for PHCentral.

  • Assistance Programs (formerly called Financial Topics under Action Central)

    Discussions and help navigating the disability system in the U.S.  Other resources to help those in need of financial assistance.

  • Books
  • Links

News – Current and Archives

Our newsroom is open Monday through Friday, rain or shine to bring you the latest in PH news and other health matters of interest to you.  You will also find relevant news items at the bottom of medical, action and financial pages.


Connect

One of the hardest things about living with chronic illness in general and Pulmonary Hypertension in particular, is the isolation. You will find many ways to meet and share with others here including:

  • Message Board

    Sign up for our private ListServe email forum moderated by a team of dedicated PHC volunteers to become part of a vibrant, online community..

  • Chat

    On any day or evening of the week, you just might find someone in chat looking for a kindred spirit. The door is always open. A chat schedule is available and will be announced on PHFriends and the public message board so you’ll want to check there too.

  • Contact Us

    We are a small, grass-roots organization and we do respond to emails promptly. Tell us what you think – what works and what doesn’t. Please share with us what you like about the site and ways to improve it. This site is for you.


Action

There are things you can do to help yourself, your community and the furthering of PH research. This section contains:

  • Intro to section

    Learn why you benefit by becoming involved.

  • Legislation You Should Know About

    From time to time, we bring to your attention a bill that is before Congress or the Senate and ask you to write to your Representatives or Senators to take a position.

  • Social Security & Disability

    If you’re trying to decide how to proceed with social security and/or disability, you’ll find a wealth of information here.

  • Patient Advocacy

    Learn why it’s important to choose a PH specialist for your care and how to get the most out of your doctor visits.

  • Contact the Action Desk

    You’ll find FAQs here on social security / disability issues and email links to our experts for personal attention.

  • Volunteer
  • Contribute

Links

You will find links to many other online resources on the following topics:

Cannulas

Nose Adaptors:  Not all nose adaptors are created equal.  For nighttime use, I wear a cannula with a larger lumen (bigger in diameter).  While a smaller lumen may work well during the day, the larger lumen is a lot quieter and so my choice for sleeping.

Submitted by -- Ralf S

Concentrators

Dealing with Machine Noise:  Concentrators are typically quite noisy.  Because they throw off a fair amount of heat and they need to have ample air circulating around them, it is not advisable to shut them in a small, restricted space such as a closet.  However they can easily be kept in an adjacent room with tubing long enough to span a distance of up to 50 feet.  Note:  splicing tubing together to span more than fifty feet is NOT advised.  You won't be getting good oxygen beyond fifty feet.

Submitted by -- Cheryl Switzer

Quieting the Humidifier:  The bubbling of my stand-alone humidifier was keeping me awake at night and I found a way to silence it.  I built a cabinet about the size of a stereo speaker to enclose the humidifier unit and completely eliminated the noise.  I have it set up with a 10m, 30 ft tube connecting the concentrator to the humidifier, then another 2m (adapted down to 1.5m), 6 ft tube connecting the humidifier to me. It works very well.  See photos.
View 1 - Custom Cabinet for Humidifier
View 2 - Custom Cabinet for Humidifier

Submitted by -- Ralf S

Choosing a Good Humidifier:  If your humidifier is attached directly to the concentrator, the heat from the concentrator may heat the water just enough to create heavy condensation in the tubing.  For this reason, I chose a stand-alone humidifier.  It is a bit noisy (see my tip about quieting the unit) but only the last few feet of tubing carries the moistened air.

Submitted by -- Ralf S

Dry Nose

If saline sprays aren't quite enough, a personal lubricant (one brand being KY) can be used. It has a thicker gell like consitancy that stays put pretty well. And it provides great moisture for a long time.

Submitted by -- Tara

I've found the Ayr saline nasal spray doesn't burn the inside of my nose as other salines I've used in the past. The Ayr Gel is very comforting as it remoisturizes. Instead of "blowing" my nose, which tends to lead to worse clogging for me, I use a cotton swab to remove crusties. At night, I've been using the clear, Large size Breath Right strips. Wonderful invention. For those who don't know about the sponge e-z wraps for the cannula, they really make a difference in the way your ears feel.

Submitted by -- Babara

For dry nose from using oxygen I have found that using a non-medicated saline spray works well. If you have an oxygen concentrator you can ask for a humdifier bottle to put on it to keep your nose moist it helps a lot. I used to want to cry because my nose burned and got sores in it from being too dry. It is easy to use and you put distilled water in the bottle and it hooks from the concentrator to your oxygen hose. A bit more time to change and fill it but it helps the dryness a lot. Also if it drys out your eyes you can use some artificial tears (the best kind are the kind without preservatives in them) they also make a thicker ones like lacrilube which is like a vaseline in a tube to put in your eyes. You put this in before you go to bed because it is hard to see afterwards but it is wonderful. Also with using artificial tears... after putting them in they run down into your nose. The nose spray only gets up so for and the artificial tears takes care of the top part. I suffered a lot with this dryness and have found that these work the best for me.

Submitted by -- Jes

Helios

Successful Fill Tips:  Your Helios will freeze up if you try to top it off. If you need a full tank to begin a day, empty the portable, let it warm up for a few minutes, dry it off and fill it from scratch. If you try to top the unit off, the valve will freeze open for some period of time and the unit may also stop working for up to one half hour If the unit is very frosty and stops working, you may try warming it up with the portable hairdryer. It may still take some time for the unit to thaw and begin working again, but it will go faster than if you were to leave it sitting.

Submitted by -- Cheryl Switzer

Make sure you close the lever before beginning to lift the unit away from the reservoir during a fill. You have a maximum fill when the unit begins to puff and emit little clouds of o2.

Submitted by -- Cheryl Switzer

Just for Fun

Give your tank some personality:  Thigh high stockings fit perfectly on an E tank. Not only does it add some personal style. And what fun it can be finding holiday stockings for the tanks! It also cushions the tank. So even if the tension screw loosens, you'll never clank around.

Submitted by -- Tara

Log Book

Usage:  Keep a log book with a record of your oxygen useage, including the date and length of time in use. I have 7 portable cylinders of oxygen per month and it can be hard to tell them apart, let alone keep track of what's what! To avoid this problem I tie different coloured ribbons or hang different coloured plastic rings from bottletops, around the top of each cylinder, making them easily distinguishable.

Submitted by -- Laura Farrell

Portable Oxygen

Portability:  For those not using the liquid oxygen (Helios) there are small ("B") tanks available for portability. They are about the size of a very large thermos bottle, and there is also a carrying case with a shoulder strap. Home care suppliers don't much like stocking them and they're hard to get, so you need to threaten your service with moving your business to another company if they don't cooperate. With a "conserver" device they can get you through most of a shopping trip. And, since I drive an hour (sometimes longer, with traffic :) each way, I keep an "E" tank in the car and use it whenever I am driving. With the conserver it lasts about a week. It wasn't worth the effort to manage the "golf cart" for the "E" tank in and out of the car by myself (much less dragging that thing while trying to push a supermarket basket, etc.) so I got rid of it and don't tote them around at all. In the house, I got 50' of tubing that lets me go from one end to the other with no problem -- I just have to untwist it once in a while to prevent kinking, and try not to trip over it.

Submitted by -- Valerie

Transport:  When you have the portable oxygen, put it in a suitcase with wheels so you can wheel it when you need to. It saves your back and is not as heavy because you don't have to carry it. You can also put your stuff in it if you have Flolan, your new cassette and the material you need.

Submitted by -- Suzanne Desaulniers

Tubing

Avoiding Tubing Tangles:  If you have a liquid or condensing system with a 50 foot hose for your oxygen and it gets tied in knots when you are going about the house, get a "twister" attachment for the hookup between your cannula and hose. It is a two part attachment rather than one and swivels as you move around. These should be available through your oxygen provider. This keeps the hose from getting in a tangle, tied in knots, etc. and helps your frustration level too!

Submitted by -- Karen Lanning-Drager

Avoiding Tubing Mishaps:  When moving about the house, I use a long length of tubing for my oxygen. To avoid ripping the nasal prongs from my nose (from the kids or others stepping on the line!) I make a safety loop by clipping the tubing to my waist with a bulldog clip.

Submitted by -- Laura Farrell

 


This site has been constructed by your friends and neighbors in the PH community. All material on this website – unless otherwise noted – has been written by members of our volunteer staff and is copyright protected. The material is for informational purposes only and does not constitute medical, financial, theological or legal advice. The material does not necessarily reflect the opinions of PH Central, Inc, and is not guaranteed to be correct, complete, or up-to-date. This information is not intended to substitute for obtaining medical advice from a doctor, legal advice from an attorney, or financial advice from a financial planner. No person should act or rely on any information on this site, or linked to this site, without seeking the advice of the appropriate profession to which the information applies.