Greetings, Steve, and all who have posted here. My name is Theresa and I am a twenty-year survivor of ARDS. Tonight I decided to find someone to reach out to following a disappointing first appointment with a new primary physician here in Albany, New York. She had very limited time and didn't seem to realize that it was a new patient visit. I brought up my ARDS experience and before I could really say anything about it, she remarked that it was twenty years ago and couldn't really be a current factor in my health. My mouth dropped and my heart hurt. I am pondering how to write to her to suggest that it would have been more productive if she has exhibited some curiousity and asked me what I meant instead of making an erroneous and dismissive conversation stopper. She then said she would see me in six months and left the room.
Before writing this, I found some great material at the Mayo site that may enlighten her, which will be sent along with my notification of termination of care.
I have an appointment with a different primary care person next week! In the years following my hospitalization, finding informed, curious, and compassionate care has been a challenge.
There is so much to say here I hardly know where to begin, so I will start by affirming the long term memory problems I deal with. I am so grateful to everyone who has commented on this site about it - this is the first time I have felt come companionship with anyone else - thank you!
I can still remember (hurray for me!) the early years in my recovery when I would try to go somewhere only to find myself simply not knowing where i was going or where i was or what to do to find my way! I could hear by brother's voice in my mind saying "above all else, sister, don't panic!" That would cause me to laugh out loud and relax and eventually I would find my way.
Much more seriously, though, is that I found myself misquoting authors and inaccurately remembering things I assumed I knew correctly; as a public speaker I quickly saw what a disaster that would be for me professionally. On the other hand, I also realized that since I no longer have perfect recall there are some pluses: my ARDS memory malfumctions gave me a sense of humility and removed the enourmous pressure to always gets things "right". I have never, however, returned to my profession, had to retire early, and generally, honestly, feel that at age 52 my adult life was effectively aborted (and that is a deliberate choice of words, aborted).
The diagnosis I left the Ohio State Wexner Medical Center with is "ARDS with Hospital Complications", though there is no wirtten detailed explanation about what those complications were. One was a terrible fall that resulted in three back surgeries over the next eight years; these operations in and of themselves were successful; however, they have resulted in scar tissue which has caused peripheral neuropathy, very painful, which impairs my daily life, making it difficult to walk and causing excruciating pain. The last three years of effective physical therapy and pain management have been life-saving.
I suppose I might close for now though there is so much more I would like to share.
Please know how siincerely I thank all of you for your postings; you have given me that extra affirmation of post-ARDS reality which now fuels my confidence is dealing with that first doctor and gives me the courage to tell her that my experience with ARDS right now, twenty years later, is real and deserving of care.