PHCentral: Informing, supporting and advocating for Pulmonary Hypertension (PH) patients since 1999 » Pages » Sorry, the page you requested was not found.

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Daily Life

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:

Cold Hands

If any of you have a problem with cold hands and/or cold feet, here's something I came across tonight... these are gel filled "mittens" for hands, feet, a painful back, etc. They're designed to be warmed in the microwave , then just tuck your hands or feet or whatever inside... the maker claims you don't have to leave them on all time... says the mitts are soothing to the hand after wearing for only a few minutes. check their website at http://www.WarmMeUps.com

Submitted by -- JeannieTX

Handicapped Parking Permit

In this State (NJ) you have to go to the DMV to get a form and mailing envelope that is filled out and signed by your doctor (pick one, any one) and send it in. We can opt for either new license plates (with a wheelchair on it) or a tag that hangs from your rear view mirror. I find myself going more places than I did before knowing that I will not have to park a mile away from the entrance.

Submitted by -- Valerie
Editor's Note: Remember please that it is against the law for anyone but the disabled person to use a disabled placard or plate. Also, if the disabled person does not get out of the car when parked in a handicapped spot, you can also get ticketed.

Medic Alert Bracelet

All persons diagnosed with PH should consider wearing a Medic Alert bracelet or medallion. Some medical personnel will give you an application brochure; or you can sign up online at www.medicalert.org. You can sign up there to join; order bracelet or other symbol; change address, contact info or doctors; pay for updates, etc. The bracelet or medallion will carry info that you would want an ER doctor to know in case you are incapacitated. My bracelet, for example, says: "Pulmonary Hypertension; Do not stop Flolan Pump; PH 800-935-6526" plus my personal ID Number, and the collect phone number for Medic Alert. The PH 800 number on my bracelet is the Flolan and Pump info line to 24 Hour nurses at Accredo, my Flolan supplier. I need to order a new one now to add that I am on Coumadin.
I also keep this same type of information on a sheet attached to my refrigerator for the attention of any Paramedics or EMTs who might be called to my home.

Submitted by -- Judy Vucci
Editor's Note: Accredo will pay for your first year of medic alert memership if you are on Flolan.

My daughter Elise was not at all enthusiastic about wearing a medic alert bracelet, but one day saw an article in Glamour about Hallie Barrie who wears a medic alert bracelet made by a company called Lauren's Hope. We found the web site which is http://www.laurenshope.com and Elise was thrilled to find something that she will wear.

Submitted by -- Lynn Firestone

Meds

Check your Meds. Pharmacies make mistakes. I have had several experiences in the last few years since being ill with PH in regards to my meds being mixed up. Always check your medicine against your label on your medicine bottle. We all know about reading the front of the label, but did you know that on the side is the actual description of your pill. Your pill should read exactly as the label on the side. For instance:
I take Diovan HCT 160mg/12.5 mg tablets. That occurs on the front of my label. Along with all of the other pertinent information.
The side of my label reads:
Oval Brownish-Red Tablet
Side 1:HHH
Side 2:CG
I then take my pills out and inspect them. My pill will have the same exact numbers or letters that are on the side of my label. If they do not match take them back to your pharmacy.

Submitted by -- Ruth

OTC Meds

Many PH doctors fail to mention that certain otc medications can be dangerous to the PH patient and others with high blood pressure or certain types of heart disease. Decongestants - found in many but not all cold remedies and cough syrups - are particularly bad because they cause constriction of the blood vessels. Take care in reading the labels and if you have questions about a particular drug, talk to the pharmacist. As a natural alternative, irrigation of the nasal passages with saline solution and/or inhaling mentholated steam might be helpful.

Submitted by -- Cheryl Switzer
Editor's Note: You should also speak to your doctor about any new meds!!

Rest

Here is a tip I use to cope with mild ph. When I get tired, I sleep.

Submitted by -- Margaret

Shopping

Always go with friends that know your condition, it's very nice to have good pals around that will watch out for you while doing that fun girl thing =)

Submitted by -- Aries

Walking

Sounds funny, but, when I used to get really SOB and faint I found the easiest way to get up any hills was to walk backwards. Don't ask me why it worked but it did.
Best wishes,
Sue ( London, England ) pph 1966

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.