- A Father's Letter to the PHFriends Listserv
- A Flower For PH
- A Life of Lessons
- A Life on the Move
- A Walking and Talking Miracle
- Backpacking Through Life
- Choosing the Right Durable Medical Equipment (DME) Supplier
- Contingency Planning for C-Pap / BiPap Users
- Dark, Disturbing, but Deeply Insightful
- Do I Have To Ask?
- Exercise and Pulmonary Hypertension
- Flu Season Strategies for the PH Patient
- I Have PH. Can I take any of the PH Medications?
- In the Wee Hours
- Iron Deficiency and Pulmonary Hypertension
- Israeli PH Association Conference
- Life with Flo: The Series
- LIFE WITH FLO: The Series
- Living Life While You’ve Got It
- Living Wills: One Patient's Experience
- Living With PH and Studying Cranes
- Loose Lips Sink Studies
- Memory Loss and Pulmonary Hypertension
- Mr. Spock Speaks
- Mutterings and Musings on Being a Patient
- My best friend, Jean
- My Nightmare and PH
- My Story
- Myriam's Story
- Navigating the Benefits Maze
- Navigating The Health Care Super-Highway:
The anxieties of a consumer-oriented hospital system
- New Dietary Guidelines for 2010 Released - Changes that may affect you
- Pumpless in Colorado
- Random Thoughts
- Sarah of the Moment
- Single Parenting with PH
- Sinus Problems? Here's One Solution (no pun intended).
- The Canadian Medicare System - An Overview
- The Courage to Change the Things I Can
- The Emotional Side of PH
- The Hill, a poem
- The Lighter Side of PH
- The Way It Was, The Way It Is
- When the Insurance Company Says “NO”
Living Life While You’ve Got It
By Loris Wilson and Armond Aserinsky
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.
Date: Sat Mar 23, 2002 11:25 pm
Subject: I Realize I'm dying
From the moment I was dx in June of 2001, I knew PH was a terminal illness. I was put on Zoloft and Atavan for depression to help get me through the shock of this dx's. Everyone thinks I am handling this very well and I even thought I was handling it good. Secretely I guess I believed in my heart that I was going to get better and Flolan was going to be my miracle. The last few days the realization of dying has just set in. I am so depressed and even afraid. I don't want to leave my love ones. I over heard my husband talking to one of our friends on the telephone about going on a cruise. He was saying, "no I don't think so. Well it doesn't look good. We don't know how she will be in November. I doubt it very much." I could read between the lines what this conversation was about. All of a sudden I realized that I'm dying and my time is short. My husband is so supportive and he takes care of me like I was a piece of fragile crystal. All of a sudden I am breaking down emotionally. I don't want to waiste any days that I have left by crawling in bed and crying from depression. I am trying with all my strength and spiritual belief to get through this stage. Please tell me if anyone else has experienced this? How did you get over it? Will this depression pass? Oh God, is there anything that can help me.
From: Armond Aserinsky
Date: Sun Mar 24, 2002 11:37 am
Subject: RE: [phfriends] I Realize I'm dying
As you may know, I lost my wife, Carol, to PH in November. She was sick for six years, and despite the best treatment in the world her time came all too quickly.
NEVERTHELESS, we did everything that she was physically capable of doing, right up until the end. That meant making plans for things months in advance, based upon her current status. A few months before she died, we went to Disney World with my daughter and son-in-law-to-be. She couldn't walk very much at all, so of course we used a motorized scooter.
Not long after that trip, she took a turn for the worse. If the timing had been a little less fortunate, we would have had to cancel the trip to Disney. So what! We always took out trip cancellation insurance, which wasn't that expensive.
A few years earlier, we took two European tours. She was healthier then, though for the second trip she did need a wheel chair, which we took with us. I got a real workout pushing her up the hills of Edinburgh. I looked like Arnold Schwartzeneggar. LOL
The point is, that we based our plans on her CURRENT CAPABILITIES. I spoke with her doctor about the outlook for her, and right up until the end he said it was realistic to hope for improvement. He was hoping to add Tracleer to her medications, and if that proved effective, her downhill slide could well have been reversed.
So while I watched her get worse, we lived life to the fullest, and we realistically sized up her chances for actually get better. During the last two months I had an elevator installed in the house. She worried about the money and the chance that she might not use it for very long. I told her that we'd go on living and planning based on her CURRENT CONDITION. At the point where we began the elevator project, she was not bed-ridden, and getting around in our two story house was very very hard for her. I solved the problem based on what she could do at the time.
One day our luck ran out. Her health slipped another notch, the doctor said there was nothing more to do, and she passed away quickly and quietly with the help of a team from the home-hospice service, which we had arranged to be on "stand-by" months earlier.
Two weeks before she died, our daughter got married in a beautiful wedding. Carol was there! And we used the just completed elevator to get her downstairs. She rode like a real lady, instead of having to be carried down stairs. When we returned home, we went upstairs in the elevator. We both laughed and had the same darkly humorous idea--that if she didn't take a lot more rides in that elevator, the cost per trip would be a little higher than flying on the Concorde, and for a much shorter journey.
Loris, do everything you're able to do. Make plans. Buy things that will last for years, and if you only get to use them for a little while, well so be it. Does your living room need a new sofa? Are the curtains in the bedroom getting on your nerves? And so on...
As an old friend of mine used to say, "None of us is getting off this planet alive." He wasn't talking about Star Trek. Live life while you've got it. Even if you believe that you're going to a better place in the long run, you've got to live THIS LIFE while you're here.
When we asked Loris how she is doing now, she wrote the following:
I did receive alot of responces to my (message about) grieving for the old Loris. I felt as though she was dead… Yes, I was grieving for my old familiar self. I am 66 years old and retired as a travel agency owner. I was able to travel all over the world before I was diagnosed with PH in July 2001. I have been married to a wonderful supportive man for 43 years. After being diagnosed with PH I thought I no longer wanted to live. My husband assured me that I had many reasons to live, the most important was to be with him. I started Flolan on Oct. 1, 2001 and it has changed my life considerably. PHfriends has been a great support for me. I have realized that I am not alone with my emotional feelings. We all go through similiar emotions. It is normal to grieve when there is a loss of a loved one or one's health.
September 1, 2002
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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.