jetting to jersey shore

sans pajamas and a full supply of daily vitamin supplements, items i never forget to pack, i sit at an LAX gate waiting for the plane that's going to take me to Charlotte, NC, where I change planes for Philadelphia, where my brother Sean picks me up in his shiny, coppery-orange TransAm and drives me down the Atlantic City Expressway to the Garden State Parkway and, an hour or so later, to our final destination, the one-story yellow house at 10 Village Drive, where Colleen may or may not be asleep in her lilac bedroom. With no glitches today, this will be near midnight EST.

time to board.

Setbacks

You know those times when you feel like you sound like a broken record?  I'd been putting off a blog post hoping there would be some news to tell.  There isn't.  I need a BREAK, I'll take anything.  The heart procedure hasn't been determined yet because of the INR level which deals with the thickness of the blood isn't stable yet. Thus, the Pittsburgh date doesn't seem promising.  I'm feeling more fatigued and breathless and wonder if it's all in my head.  I'm thirsty constantly and my appetite remains just about at zero.  Who would have ever thought I would pass up a good chocolate chip cookie?  I'm not managing day to day tasks very well and need to rely on more help.  This is a broken record.  Then, I see the resolve and resilience of other patients, the Bostonians and so many others and I am like "Whimpy the Kid."

Despite these gloomy days, I am determined to get the hair cut and colored.  I can't go to any hospital with this look and I've given up the hair drying ritual.  Who has the time or energy?  So, do I go short or do I go long and try to tie it back?  It's crazy, I know, it's crazy!

Mignon is coming to town for a couple of weeks.  Maybe her energy will move things along and the setbacks will become fewer.  Three steps forward, only one step back.

Colleen is home, released from the hospital before noon this morning.

Balanced Restored

I've spent many a night in a hospital bed lately but last night was the toughest.  I listened for the entire night to the quivering cry of what sounded like a wounded animal.  The suffering of this quite older woman was as sad as the condition she was in. The nurses gently washed her...I just can't explain what it was like to be just feet away listening to all this going on.  One of the nurses had to leave the room. I fear there are so many older people who are alone, unable to care for themselves and haven't an advocate to help them. This is the imbalance of humanity.

In terms of my situation, the goal remains to be reconsidered at UPMC.  To avoid the retention of fluid, my sodium intake has been reduced and fluid intake is 36 ozs. a day.  The increased shortness of breath is a given and appears to be the new normal.  In a couple of weeks, I'll be back to Hopkins for the "get back in the rhythm" heart procedure with the goal of being put on the UPMC lung transplant committee agenda again.  Let's hope these slight changes will restore balance.

High Anxiety

I wish these last two days were as funny as a Mel Brooks movie. But, rather than enjoying the spring  sunshine, I'm here indoors at Shore Memorial. For what it's worth, my hospital room has a window. Despite my best efforts, I can't seem to get ahead of these obstacles. Now, all the docs need to conference. We know how that goes. Picture a road crew discussing how they want to tackle the hole! My GP came in and I let the tears go. I'll have a better picture tomorrow. The answer is probably to stabilize me as best they can, get the numbers right for a "shot in the dark" cardio procedure to get myself back for consideration for transplant again. They all agree on one thing, this is a complicated case. When they say that to me, I think, REALLY!

First entry from my new iPad.

Edvard Munch, c 1893

no one said it would be easy

admission through the ER today to the local hospital, Shore Memorial, in Somers Point...Col is super tired...including too tired to talk on the phone, she says, at least for tonight, probably tomorrow too...

Among the things that most boost her spirits are the Comments you leave on her blog...altho I know some of us, me included, have had technical difficulty posting...but for those of you who've found a way, if you're so inclined, I know she'd love to hear from you...

If you haven't found a way to Comment, two possible options are: 1. email your Comment to me at moimignon@gmail.com and I'll post it for you on the main blog thread or 2. snail mail to 10 Village Dr, Somers Pt, NJ 08244

Sunday

HURRAY !!

t.i.m.e ?

n.o.w.o.c.l.o.c.k

Nellie Causes Havoc

Tuesday evening Nellie would not give way to a water flush before performing the night time feeding task.  On the second attempt, the water backfired into the startled faces of myself and Chelsea.  After another failed attempt, this mission was also aborted (remember last week?)  The next morning, Beth arrived to take me to a blood draw appointment.  I figured my nurse would fix the problem and we'd be off for a little adventure, if only to take a drive in the sun.  Rather, what led to this visit was a series of unfortunate events that ended up in the Radiology Department of Shore Memorial.  I was feeling quite a bit of anxiety, hoping this blockage could be fixed safely.  The scary doctor at Urgent Care had be right, they needed an xray to pinpoint the problem spot.  The radiologist had never seen my type of feeding tube set-up before but he managed to figure it out and fix it.  We got back to the yellow house around 5 and after calls to home care nurse, Dr. Mathai's nurse and the pess nurse, there is now a new plan to hopefully prevent this from happening again. And, despite also learning that the transplant committee delayed a decision again (another test wanted) I woke up today feeling pretty good.  This mishap had worked out okay.  Nellie appears happier and so am I.

Patience

Waiting to hear medical news can be quite a challenge.  I read other bloggers like myself who express how nerve-racking it is to wait for decisions.  Once again, my case was to have been presented to the UMPC Lung Transplant Selection Committee today.  Tomorrow, I call my coordinator Lisa in Pittsburgh to find out the verdict.  I've been trying not to speculate on the outcome.  However, the brain just takes off.  What if it's yes, then what?  Or no?  Or maybe?  I also await a phone call from Hopkins Doc regarding the next plan for the heart.  Do I go back to Johns Hopkins much sooner than I'd like?  Rather than yielding to the "monkey mind," I've been trying to focus on practicing patience.  On patience, the cliches abound..."Rome wasn't built in a day."  Or,

There is something to be said for cliches, they do offer wisdom.  Here's another good one.

You can go on-line and find hundreds of quotes and poems.  It's obviously part of the human condition.  I know that but that doesn't always provide consolation.   Breathe in "Calm," Breathe out "Patience"