Wednesday, January 30, 2013

Journey to Johns Hopkins

Yesterday, Chelsea and I sailed down the interstates for my appointment with the Pulmonary Hypertension Doc at Johns Hopkins, Stephen Mathai.  The faces are familiar now: the valet, the security guy, the check-in girl, the nurse, and the checkout lady.  The first thing we noticed when entering JH was that at least 80% of the myriad of people were wearing something that showed their love and support of the ....

We even saw a 50-something-year-old woman in the waiting room wearing a lovely outfit accented with Raven sneakers. I actually knew what these colors meant and was pleased I could chat with the locals. The second thing that was quite apparent to us was that men who accompany their ladies to doctor appointments inevitably have to the carry the "Mary Poppins" handbag.  In the elevator, a gentleman sported a bright purple hobo bag.  Waiting for the elevator, an older man in a plaid shirt carried a quilted Vera Bradley bag on his right shoulder.  Another, in the checkout line, was swinging an imitation black leather bag with gold handles.  The message here, ladies: if you are going to have your man carry your bag, make sure it matches his ensemble as well as your own.

Once processed, we went right in and met with the Doc.  Our discussion was focused on the upcoming Pitt Evaluation.  He made the point that I don't need to convince the team that I need lungs.  I need to show them that I can do what it takes to be part of the challenge, physically and emotionally.  This is not new advice. Living with a chronic illness always keeps you on the search, for healing, the cure, the answer.  If I could eat right, de-stress, exercise.....I could be well.  You read the stories. Some do it.  I've been more determined at some times than others. Now, this time...can I do it?  In these past weeks, I should've been working as if preparing for a marathon, but I've just been tired and uncertain.  Time and again, I've tried the "do's" and nothing's worked.  It's hard not to be discouraged.

I will try to do the things the Doc has suggested.  We didn't need to drive all the way to Hopkins for this 20-minute conversation, but I got some face time with Chelsea, enjoyed the enthusiasm of Raven fans, and watching the things loved ones do for each other.

PS:  Still working on the O2 dilemma.

Monday, January 28, 2013

Getting the Air to Breathe


Organizing your oxygen for travel can be a bloody nightmare.  Especially as your needs get stronger and the portable equipment doesn’t quite do the job.  The more you need, the more complicated it gets.  What to do?  What to do?  Don’t get anxious like I used to; hang in there and start your inquiries a couple of weeks before departure time.  I’m spending the day today on the phone trying to secure delivery of a large liquid tank to “Family House" in Pittsburgh.  That will serve as the “Mothership,” which I will use to fill the smaller portable tanks to get to and fro while in Steeler Country.  Meanwhile, I’m charging up the batteries of my “Black Beauty," a portable oxygen concentrator which will serve as a car back-up.  Wait.  This gets better.  I also ordered 4 small air tanks as a back-up to the back-up.  In addition, I will have 3 portable liquid tanks for the trip which will be the mainstay for the car ride.  It’s quite confusing when you try to explain this ordeal, but it will work.  Now if I was going on a river cruise on the Thames, I wouldn’t have these problems.  The O2 would be waiting for me on board.  Can I go there instead?



Friday, January 25, 2013

When I rolled out of bed this morning, I already had in mind the two ducks I'd line up today:  organizing my O2 for the trip out to Pittsburgh and the week's stay there, and sending off all my tax info to my trusted accountant (Hi, Schance).  After showering, I would meet up with my two sisters and Mom for a celebratory lunch. My first outing in about 4 days...Wahoo!  I just got passed the morning cup of joe when WHAM!  I felt like I ran into a brick wall.  So drained, I barely got back to bed.  In the old days, I would try to push through as I had so many responsibilities, as we all do.  And with scleroderma you often don't look sick, so you start to think, "it's in my head."  Of course, now I know it's not in my head, but I'm lucky that I can crawl back into bed and the ducks can wait.


Wednesday, January 23, 2013

Another Phase

The past year has taken the winds out of my sails.  I've had setbacks before in dealing with my 20+ years of chronic illness. I would reach a plateau, adjust, move on.  Unfortunately, in the last few years, the limitations are increasing quicker than before. I've known for months that my last option is a double lung transplant.  In 2002, the University of Pennsylvania thought I was not a viable candidate because of my scleroderma.  Ten years later, I'm heading out to the University of Pittsburgh for another evaluation.  Road Trip!

On February 10, my sister Mignon and I will load up the ole Camry and head west on the dreaded PA turnpike. It's not the dreaded 405 in LA, but trucks and weather could make it a close second.  We'll be staying in "Family House" for the week.

This is one of those houses.  Nice, huh?  The morning of our arrival, we call for our house assignment.

In the meantime, I'm trying to get my

I hope to use this blog to keep my wonderful and supportive family and friends up to date on my adventures.