Features

Contingency Planning for C-Pap / BiPap Users

If you depend on a C-Pap or BiPap to support your respiratory system during sleep, you will want to consider putting together some contingency plans. Any kind of storm or other disaster, which can easily interrupt electrical service to homes for hours or days at a time, can be very stressful times to those of us dependant on medical equipment. If you’ve ever had to do without your machine for a night or two, then you know first-hand how essential nighttime ventilation is for your health. You should also keep in mind that equipment failures do occur and your DME (durable medical equipment) supplier will probably not have a loaner machine to offer immediately. Can you really manage for a week or more without your unit while a new one is ordered for you? It can take that long or longer to repair or replace a machine that has malfunctioned.  Read More.

---

Flu Season Strategies for the PH Patient
Written by PHC Medical Editor, Helen Puckett

As we approach the flu season in the United States, many of us are worried.  As a group, PH patients fall within the high risk category, those with an underlying condition who are more at risk for serious and sometimes fatal complications from the flu.  To make things even more difficult this year, there are two different flu strains to avoid,  Read More.

---

Dark, Disturbing, but Deeply Insightful:
Amy Silverstein's Heart Transplant Memoir, Sick Girl
A Review by Leela Rottman

Sick Girl's unflinching honesty enters territory unexplored in many sickness memoirs; the emotional and psychological impacts of illness. Although at times tending towards a bleak, and self-pitying tone, Sick Girl is also sharply observant, and tinged with a wholesome dash of realism. The keenly questioning nature of Silverstein's book, responsible for no little amount of controversy on its 2007 release, makes for confronting and ultimately inspiring reading. Read more

Navigating The Health Care Super-Highway
The anxieties of a consumer-oriented hospital system
By Leela Rottman

This original work by Leela Rottman, from Hobart Australia, discusses how in the world of Medicine, we are now encouraged to become equal partners in making our healthcare choices. As a PH patient with limited stamina and at times a dodgy memory, this can be especially challenging.

Random Thoughts By Tom Mcleod
Random Thoughts is an original poem sent to us by Tom McLeod, the father of a teen-age son with PH. Mr. McLeod's poem reveals the raw emotion of a father with grave concerns about the future for himself and his son.

Choosing the Right Durable Medical Equipment (DME) Supplier
By Cheryl Switzer
If you are discussing the possibility of adding supplemental oxygen to your treatment regiment or have been on o2 for awhile and are not happy with your current supplier, you'll want to consider your options. There are a lot of choices out there so you'll want to shop around. 

My Nightmare and PH
By Merle Reeseman
If you think the healthcare system in the U.S. is broken, Merle's story will reinforce your view. Merle found herself underinsured after her husband's early retirement. It changed her life in ways you cannot imagine.

Myriam's Story
By Myriam C
PAH treatment in Mexico is hard to come by. The "big gun" drugs most Americans have come to rely on in the U.S. — Remodulin, Flolan, Tracleer — are simply not available to our PH friends to the south. Read how Myriam beat the odds with the help of a loving family and friends.

Do I Have To Ask?
By Jenni Messel
Jenni M, our newest staff member and feature editor here at PHC, reminds us that it's okay to ask for help when you need it.

Mutterings and Musings on Being a Patient
By Cheryl Switzer

Life with Flo: The Series
Life With Flo first ran as a series in our private message board. When Myrtle Schmertz (pseudonym) began Flolan therapy, she wrote to the PHFriends message board about her progress, and that post soon became first in a series of humorous observations, thoughts and adjustments to life on Flolan.

A Life of Lessons
Rebecca Swartley, a nursing student happily looking forward to graduation next year, is a young woman in the prime of her life, or is she? When Rebecca was seven years old, the doctors told her parents she had pulmonary hypertension. They were also told their daughter would probably not live to celebrate her sixteenth birthday.

Rebecca was most certainly not privy to their assessment of her future. All she knew for certain was that she wanted to be just like everyone else. And that’s more or less just what she’s done. For a little glimpse into the life of a fiercely independent spirit, read A Life of Lessons.

The Lighter Side of PH
Laughter is Good Medicine. PH may not be a laughing matter, but sometimes things happen that bring a smile to our faces and give us a chuckle. There’s no harm in sharing them.

In the Wee Hours
A mother's letter to herself
By Annette Whittaker

The Emotional Side of PH
One woman’s thoughts on learning to cope with Pulmonary Hypertension - By cheryl Switzer

A Life on the Move
Ruth Latimer does not know how to sit still. She’s moved her family household countless times over the years and she’s not one to sit and stew other things. So, when she learned she had mild PH, she moved into action.. She’s done the reading, she’s determined to stay as fit as she can, and she’s starting a new career that gives her the flexibility she needs for up and down PH days. You’ve got to love the spirit of this woman. Ruth is definitely on the move again.

Memory Loss and Pulmonary Hypertension
Earlier this year, someone on PHfriends posted a little message about losing her mind. She complained of getting goofy and forgetful. Many people chimed in. Some said they were forgetting appointments, dates, lots of small and not-so-small details on a daily basis. They were finding it irksome and worrisome. Armond Aserinsky, the president of PHCentral, responded with a thoughtful and comprehensive explanation.

The Canadian Medicare System - An Overview
Bob Wilson, a Canadian living in Ontario, a senior citizen and a retired health physicist, has some strong convictions when it comes to healthcare issues. He firmly believes that excellent medical care should be available to everyone regardless of their personal financial circumstances. He further believes that it is the responsibility of public officials at every level of government to ensure this availability. Although Bob admits there are stresses and strains on the Canadian Medicare system, most would agree that Canadian programs offer excellent medical care to every qualifying citizen. As many of you know, there has been much controversy and dialogue in the United States over the years about adopting a similar program. If you've wondered how they manage so well in Canada, Bob's overview of the Province of Ontario will surely be of interest to you.

Pumpless in Colorado
Earl Selvage, one of our PHfriends and an active volunteer on this web site, shared his wonderful news with us recently in the form of a friendly email. After many years on the intravenous drug, Flolan, his pulmonary artery pressures are nearly normal, he’s feeling rather well and he’s been transitioned to one of the new oral medication. His pump is history. This, as many of you know, is every PH’ers dream come true. In this feature, Earl and our feature editor, Cheryl Switzer had a little chat and it is presented to you here in interview form. Earl is a pearl of a guy and we think his tale is worthy of two thumbs up!

Living Life While You’ve Got It
This month we’re featuring a pair of letters, one written by a woman in deep despair - our PH friend, Loris Wilson - and the other offered in response. Loris’s original message was posted on the phfriends list here at PHC earlier this year, and although many friends offered support, one response was particularly poignant. Armond Aserinsky, who lost his wife, Carol to PH in November of 2001, reminded Loris - as well as the rest of us - the importance of living in the now. We all need to remember this from time to time.

Single Parenting with PH - By Bailey Rains
Bailey Rains, a mother of two children and a PH patient herself, tells us how it feels to be a “Mama Bear”. She is a recently divorced single parent with a lot to deal with. This is a short yet heartfelt piece from one of our star diarists. If you like this one, be sure to check out her journal in the Patient Diary section.

Sarah of the Moment By Sarah Ing
PHC diarist, actress, writer and television host, Sarah Ing tells her personal story including the great benefits she has realized after a year on the recently approved oral medication, Tracleer, with both energy and style. We think you'll enjoy it.

My best friend, Jean By Bill March
My wife, Jean March died from PH earlier this year. After her death, I found something she had written and I would like to share it with you all. It is a little talk she had given at a PH support group meeting on the plight of all caregivers. I offer it to you unedited, in her own words. But before you read Jean’s words, I’d like to tell you a little bit about my wonderful wife Jean and our life together.

Backpacking Through Life By Cheryl Switzer is about Cheryl's own struggle to accept supplemental oxygen therapy. When they told her she would need full-time oxygen, she could not imagine a life tethered to a device. When she realized how fundamental a need this was and experienced the benefits first-hand, she made peace with it. Today, after nearly two-years of continuous oxygen use, Cheryl carries her little canister as easily as she carries her purse. If you’re facing a similar challenge or are just curious, read on.

A Walking and Talking Miracle is the story of one woman's efforts to qualify for lung transplant surgery. Shirley Jewett describes her seven-year battle with primary pulmonary hypertension, her incredible determination to beat the odds, the sacrifices she was forced to make along the way and life after transplant surgery. This is a good read for all and a must read for anyone considering a transplant option.
by Shirley Jewett - Contributor

When the Insurance Company Says “NO”
This is an article about “advocacy”: advocacy for yourself. It’s an article about committing yourself to staying alive, and getting insurance companies and the government to work with you to that end.
by Armond Aserinsky, President and Science Editor

The Courage to Change the Things I Can
by Graeme Warner, Scotland - Contributor

My Story
Paul Percival shares his journey from his home and life in Australia to the USA where he is being treated with Flolan.
by Paul Percival

A Father's Letter to the PHFriends Listserv
by Rich Bottini

Israeli PH Association Conference
On June 21st, they held their first national conference. Read on for more about the conference, contact information, and some pictures.

Navigating the Benefits Maze
Rick Perry, of A.C.C.E.S.S., Discusses "Navigating The Benefits Maze" with DelVal Support Group
by Kathryn Buck - PHCentral Editor

A Flower For PH
by Sheila Williams - Contributor

Living Wills: One Patient's Experience
by Sherry Okonski - Contributor

Loose Lips Sink Studies
by Armond Aserinsky, President and Science Editor
and PHCentral Medical Consultants: Lewis J. Rubin, MD, Harold Palevsky, MD, and Ronald J. Oudiz, MD.

The Way It Was, The Way It Is
by Graeme Warner, Scotland - Contributor

Mr. Spock Speaks
by Armond Aserinsky, President and Science Editor

Living With PH and Studying Cranes
by Armond Aserinsky, President and Science Editor

Welcome
by Armond Aserinsky, President and Science Editor

 

 

We would like your feedback. Please send your comments about this article and your suggestions for future articles. We ask that all articles are relevant, that common decency prevail, and that any factual statements be verified for accuracy. If you are sending comments on a feature, please reference the title in the subject line. Our goal is to bring useful and interesting features to you in future months.

PHCentral is committed to the expression of diverse opinions from members of the PH Community.

We feel strongly that free and open discussion regarding PH will assist in the generation and the refinement of new and existing ideas. To that end, we provide the opportunity for anyone from the medical and patient communities to submit editorials, letters to the editor or short articles on a PH-related topic. We will be encouraging opposing points of view. Areas may include treatments, causes, advocacy, disability, etc.