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

Pages

Working With Your Doctors

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:

Doctor Visit

Some doctors will give us as much time as we need, but many are on a schedule and we need to be mindful of that. For what they are worth, here are a few suggestions regarding meetings with your doctor.

Always take your organized medical binder. Place it on the counter and let them know it's available for reference.

Don't ask "do you think" questions such as "do you think this will help me?" "Do you think I'll feel better if and when?"

Keep your questions medical, but keep in mind that their job is not to give you a medical school education. You can go to the Internet for general, factual, medical information. Keep your questions pertinent to your situation such as, "How is my cardiac output?"

Don't hand the doctor anything to read until your discussion is over. If you hand your doctor a piece of paper, he/she will start reading, and his/her focus will no longer be on you and your questions.

Prepare your questions ahead of time. Have them in writing for your reference. Stay on topic

Submitted by -- Cheryl Switzer

Medical Records

It's a great help to your doctors to have a complete set of test results available during office visits. This saves a lot of time and if your papers are well organized, gives the doctor a lot of good information. Organize your papers in a loose leaf binder under subject tabs such as: PFTs, Scans (MRI, CT), X-Rays, Lab Tests, ABG's etc. File all tests results in date order with the most recent on top. Your doctor can work backward to see trends. Include a page listing all your current medications, doses and time of day you take them. You might include a section on this sheet to show medications you took previously and the date you started and stopped taking the med. Sometimes doctors want to know if you've tried this or that med in the past. Include vitamins, minerals and any other supplements you take. If your doctor wants copies of anything, he/she can open up the binder and remove a page easily. Some people put everything in plastic protector sheets, but since the pages don't get handled that much, this really is not necessary.

Submitted by -- Cheryl Switzer

My doctors have lost films so I'm inclined to ask for them. Sometimes they will sell you a copy and other times you can "borrow" the film. When I borrow my film, I keep it forever. Some doctors want to see films and others want to see write-ups. I believe the films are safer with me than in any institution where misfiling is possible. Once it's lost, you've lost a bit of your medical history that you cannot get back.

Submitted by -- Cheryl Switzer

Get copies of everything. Even if you are working within one medical institution, ask for copies of everything pertaining to your own health. This includes lab test results, X-Ray, CT scan and MRI reports, PFT test results and so on. Get everything you can.

Submitted by -- Cheryl Switzer

When you obtain copies of your medical records, check them for accuracy. Make sure that the medications, allergies, and conditions are properly listed. Sometimes the transcription service might have made an error, and other times, it might be that doctor has confused one patient with another, resulting in misinformation. If an emergency arises and the ER doctor calls your doctor or the on call doctor, erroneous information in your charts could complicate your situation. If you do find an error in your records, inform your doctor and get copies of the correct records.

Submitted by -- Shelly Mendoza

Wallet Information

I typed up a fact sheet about my medical situation and placed it in my wallet. I understand that Medic Alert bracelets may be very helpful, but I'm pretty satisfied with my wallet information. I've attached my medical insurance cards to the folded up page so that anyone needing to treat me, will find it. It lists my diseases and conditions, my current medications, my doctors names and phone numbers, my husband's name and work phone number and in oversized, bold letters a warning about administering anesthesia to me without constant monitoring. As some of you must know, general anesthetic is very dangerous to PH'ers especially if we're not monitored very closely. Can't hurt.

Submitted by -- Cheryl Switzer

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.