2100 hours room 603 family house pittsburgh...

                     Presby Entrance


I just said to Colleen that I was only going to write a few words and I hope I can stick to that because, like Colleen, every cell in my body is imploring me to get prone...This morning at 8:15 we stepped onto the shuttle to Presby (UPMC Presbyterian Hospital's nickname) where we got Colleen set up with a black wheel chair (not as cool as Colleen's red one) and heavy-duty oxygen tank for the day...first order of business, an echocardiogram, which Colleen said was one of the easy ones...next a 3-hour lung transplant orientation (Colleen and I asked the most questions)...then a pulmonary function test, which also didn't hurt...and finally, at 5 pm, we met with John McDyer, MD...there's not exactly a lung transplant honcho here, but he comes closest and is the Johns Hopkins contact who agreed to see Colleen earlier than otherwise would have happened...

End of Day One

dateline february 10 2013 family house room 603 pittsburgh pa 21:40 hours...

I lie in my single bed and Colleen is tucked into hers next to mine, contentedly watching Downton Abbey...for those of you who don't know me, I am Colleen's sister Mignon...she has authorized me to contribute to her blog, so here I am. Rest assured, however. Colleen is its principal and primary author. I am a companion voice, a scribe, if you will.

we're both exhausted...not from the six-hour drive on the old Pennsylvania Turnpike to get here from the Jersey shore...that was quite glorious with sun, farms, rolling valleys, dramatic mountain tunnels, and rest stops where I got to push Colleen in the wheelchair for the first time and with no forethought whatsoever found myself spinning her around and saying, I confess, "Whee"...so as not to embarrass Colleen I had to restrain myself from bursting at full-throttle wheelchair speed through the double glass doors of the food court...

Colleen wasn't altogether innocent, however. Once inside, where did she direct me to take us?  Straight to the Auntie Annie counter where she ordered a soft pretzel and (listen to this, Kim) a Diet Coke! To be fair, the pretzel was salt free and whole grain, the Diet Coke a "small."  So what was I to do? To the counter girl I said, "Make that two," then added, "But make mine a large Diet Coke."

who's influencing who here? the "nurse" is falling down on her job and joining the "patient" in devil-may-care disobedience to "good healthy choices." 

I've got to say, though, that as we zoomed back onto the highway eating our just-out-of-the-oven whole-grain soft pretzels, we were pretty darn happy and shared back and forth to each other, "Um, these are really good; Yes, these are really good" Um...Um...Um...

so we just cruised on down the open road toward "Deer Hunter" country...few cars...some trucks...no obstacles...

the exhaustion hit after arriving at our destination and having to acclimate to the place where we'll be living for the week, accommodations affiliated with the University of Pittsburgh Medical Center but a minute away...so there was all the unpacking and so forth...finding our assigned food cubby and refrigerator in the communal kitchen...securing a parking space assignment on the premises...

we ate some lettuce and cookies for dinner, chatting with other residents and a bevy of genuinely cheerful volunteers, many of them fresh-faced pre-med students at the University of Pittsburgh...

our teeth now brushed, Downton Abbey almost over, we'll be turning out the light soon...

we like our room...

our two alarm clocks, for good measure, are set for 6:30 am...the shuttle to Colleen's first appointment leaves at 8:11 am...

as you know, tomorrow is the first day of Colleen's 5-day lung transplant evaluation...

signing off

Off To The Iron City

UPMC

To see the Wizards, here's one:

John McDyer, MD

Guess where he's from?  Naturally, the Garden State.

These last have been hectic days, but the weather spared us and Mignon got here safely. Thanks, Nemo.  I'm so happy she's here.  I can let go a bit.  The schedule of events at the University of Pittsburgh hospital finally arrived (in the nick of time) and the week is full.  There was a lot of information and also papers to fill out, but all the details were checked and re-checked by my staff (Camille and Mignon). All of it's done, so the car ride should be full of good tunes, snacks we shouldn't be eating, and anything else that doesn't deal with medical stuff.  We'll have plenty of days of that.  Yet, I still feel a wee bit anxious about the trip.  After all the planning, it's finally here.  I've had so much support and well wishes from so many special people, my heart is full.  Slowly, "In and Out, another part of the journey begins and I take all of your energy with me.

The line is lookin' good.

The Ducks Break Ranks

After a few glitches, I thought we were all lined up for our adventure.  So, off for a manicure and pedicure to be presentable for the week.  The hair's been cut and colored.  Remember, "Attitude."  Leslie and I return, relaxed and refreshed to:



Katherine, it turns out, had given me the wrong directions for the O2 form Leslie had just faxed at Staples. And Caitlin didn't mail the packet that needed to be here prior to leaving for Pittsburgh on Sunday. The agenda for next week's multiple appointments is not quite lined up. Leslie goes back to Staples with changes to re-fax and runs into fax problems.  Katherine's sorry. Leslie runs to get her kids from school for haircuts.  So much for R & R.

I am reminded of a lesson that continues to crop up in my life.  We can make all the plans, expecting things to turn out according to our wishes.  But as Robert Burns says to a mouse, "The best-laid schemes of mice and men oft go astray and leave us naught but grief and pain for promised joy."  We have to accept that life often has a "mind of it own."

Update:  Leslie was back at Staples at 8:50 this morning to re-fax.  It doesn't work again. I call Katherine.  AGAIN.  She gives me another number.  Why didn't she do that yesterday????  See what I mean!

Oh! That Attitude!

Yesterday, my sister took me to see my new local heart doc.  We both agree that he is a good new choice, as is his nurse.  As my Pulmonary Hypertension doc @ John Hopkins said, I've got to go into this evaluation process with that "can-do attitude." REALLY!!!!!  Unlike me, but lately that attitude hasn't been easy to muster. However, can you imagine if the wizards said, "We're sorry, Ms. McCarthy, it wasn't your heart, lungs, esophagus, or cancer history, it was your ATTITUDE. No lungs for you." OMG!  Then, the icing on the cake, I run into a "Pittsburgh Intuitive" and she pronounces that "If I had a better attitude, I would have ten more years of sunrises." OKAY! OKAY!  Game time.

Time to pull out that favorite story, the ultimate success tale of optimism and hard work.  Maybe I should bring a few copies to give away to the evaluation team.

Breathe Easy

After speaking to Karen, Caitlin, Kristin, and Katherine, I was grateful for Stephanie and Sandy.  I've been three days on the case for a stationary liquid oxygen tank to be delivered to Family House in Pittsburgh.  Finally, in the end, I told Katherine that I would just pay out-of-pocket.  I needed the oxygen.  I'd deal with insurances later.  Then, she proceeds to tell me why I was having a problem.  Why didn't she tell me in the beginning?  Why didn't Medicare tell me when I spoke to them?  UNBELIEVABLE!  After telling one of my sisters the story, she went online and there it was.  Lesson learned:  machines are becoming smarter than some people.  Next time, go online first.  Well, it's done. My angst has passed.

Between this ordeal and being cooped up in the house all these days, I'm just about ready to jump out of my skin. I hope to get out today to refresh and rejuvenate.