Friday reality fly by...

I've put off writing this post because I don't want to think about Friday plus I don't want it to come across wrong.  But I want my blog to chronicle this journey, the entire journey, with all its inevitable ups and downs-- Friday was definitely a down. 

I've been flying under the radar for the first three weeks here. No doctors appointments at all: zip, zero, nada.  It made me wonder more than once if any doctors at Duke realized I was here (or even cared I sometimes thought.)  My lack of appointments has made my rehab sessions add up faster than usual however. I've already got 16 under my belt and only need 7 more to satisfy the minimal requirement before being listed.  So that is a positive for sure.  Well, I came in for a crash landing Friday morning.

At 8:00 a.m. I met with a new pulmonologist, Dr. Stephanie Norfolk.  After a brief introduction, she got right down to business.  

She was blunt.  I failed to meet esophageal motility parameters set by the transplant team.  If the medication I recently started didn't help my esophagus muscles move my food through better, I would be out of the program.

She saw my shock. I couldn't believe what I was hearing. Me, dropped from the transplant program for swallowing issues?  WHAT??!!  My deer-in-the-headlights look must have given her a clue that this was news to me.  "Hasn't anyone told you this before now?" she asked.  Something like, "Uh, No!" came out of my mouth. 

She apologized for being blunt.  "I am so sorry.  If I had known no one had spoken to you about this problem before, I would have approached this conversation completely different." She took me by the hand as tears started to leak out of my eyes--that made me feel a bit better.

Then she was kind. She went on to explain that because my esophageal motility is 50% less than normal and going through the transplant slows motility even further (cut nerves and such) that if I were to go into surgery "as is" now, I would most likely come out with a feeding tube that I would never be able to get rid of.  I would never be able to eat food again.  Because that has happened to a few patients with motility like mine and a couple never even got to leave the hospital, the team no longer accepts patients like me.  The quality of life post transplant is too low to justify the surgery. 

So now I need a miracle.  The medicine, Reglan (metoclopramide), has gnarly side effects which become more likely the longer a person is taking it.  I had to suck up my courage just to take the first 1/2 dose.  So far I have tolerated it well.  I jump up to the full dose tomorrow.  I will remain on it for 1 1/2 to 2 weeks before they repeat the esophageal manometry (EM) test I had during evaluation week.  The doctor wants to make sure I'm on the Reglan long enough to get the full benefit of the drug. Let's just say the EM was not my favorite test experience.  But I will do it again and pray that this medication works wonders and gives me a chance to move forward.  

I also found out that I am negative for CMV, a virus 70-80% of the population tests positive for.  Usually that is good news.  However, since it is more likely I would receive donor lungs from someone who is already positive, my weakened immune system would be unable to fight it off.  They do have a very expensive drug that I would have to take for the rest of my life to protect myself.  Since I'm already asking for a miracle, I'm adding on the need for a CMV negative donor.  

After talking to Dr. Norfolk, I spoke with a nutritionist.  I need to put back on the weight I've lost since exercising so much.  So bring on the extra food.  Then I had an x-ray, blood gas draw, and a pulmonary function test (PFT).  

My PFT only went down 1% from where it was in March.  I am experiencing a miracle already by breathing so well, especially since I've been hospital-free since November.  It is a tender mercy that I am grateful for.  Rheid and I are staying positive and hope to hear good news soon.

Pulmonary Rehab day 11...

Well, I've managed to survive eleven sessions of boot camp pulmonary rehab--hallelujah!!  I began week three and no longer feel like the Rehab Rookie.  There were a couple newbies that joined the group today.  On any particular day there can be anywhere from 15 to 35 patients, who inhale various amounts of oxygen and wear an amazing variety of workout attire, show up for exercising.  Some are waiting to be listed (like me) while others have had their surgery and are now trying to regain their strength and mobility.  There are a few people who are listed who are just putting in their time waiting for "the call" to come.

A typical day begins at 12:30 with check-in.  Everyone has to have their vitals monitored and recorded before we can begin.  Floor class starts at 1:00 and lasts for about 50 minutes.  We each get a mat, stretchy band, leg weights, and hand weights.  Different physical therapists (PT's) lead the floor exercises each day.  I've been here long enough now to know if it's going to be a grueling session or a more zen-like experience depending on who puts on the microphone.  One guy had me almost begging for mercy before he would say "...and rest."  I wanted to shout out "and rest" a couple of times when my legs were burning and in danger of falling off.  But of course, I curbed my expressive impulse and survived the experience.

After floor class, we get a 5-10 minute break to rest and snack.  I use this time to save my blood sugar from sinking like a submarine.  It's been a delicate balancing act of keeping my sugars stable through the entire afternoon but the first hour seems to be the trickiest.

Then the entire group is divided into 3 smaller groups and you begin at one of three stations and rotate through as you finish each one.  I usually get weights first.  One day arms are the focus and then the next day your legs get all the attention.  Here I must do a wee bit of bragging...I've Got Guns!  Thanks to prednisone and not being active for a long time, my muscles were sagging not so strong.  But no longer does the skin under my arms wave in the breeze.  I have definition.  Woot woot.  It takes about 30 minutes to work your way through the machines and other weights.

The next station is the NuStep.  It's like bicycle but easier on the knees.  It has arms that go back and forth but I am not allowed to use my arms.  Since I have some osteoporosis, they don't want me to do the slight twist that happens in your spine when your arms are working the machine too.  This starts out fun but by 10 minutes I am tuckered out and that is only half-way.  The Saddists PT's have bumped me up a level as well so the fun just keeps on coming.  But I put on my i-pod for this station and that has helped the time go faster.

The last station is walking laps.  The gym has an indoor track and we cruise around it for 20 min. on MWF and 30 min. on TTh.  You are not supposed to stop and rest but some people just have to.  Because walking is the hardest and I get it last, I am sucking air by the time I am done.  I was going faster the first week but I'm not breathing as well as I was then and my lap count has gone down a bit.  By the end of the walk and I am sweating and huffing--it is not a pretty sight.  What I am able to accomplish here would be soooo much harder at home with the altitude.  Sea level is my friend for sure.

Right now you just want to go home and veg--but no!  Now it is class time which lasts till 4:30.  We are required to attend classes dealing with transplant issues such as:  feeding tubes, medications, research studies, speech therapy, oxygen, what to expect, etc.  I know more than most of the other patients but there is still a lot to absorb.  Some of it you kinda don't want to know, but it is best to be prepared for the "could happens."  It does a number on the anxiety level however.

Well, I'm sure as days go by you'll be hearing more about rehab, finding my way through the trees that are Durham, and humidity (yes, that has already begun and I've heard horror stories about what to expect this summer.)  I'll try to catch up a bit more later--it's late and I'm tired.  Gotta rest up for day 12!

Things are different, just saying...

Random observations since the move:

I can throw away recyclables with reckless abandon!  No more traipsing to the recycle container to throw away the smallest scrap of cardboard so I don't single-handedly ruin the planet.  "Well, Sherri, if you had only recycled that Orbit gum package, you could have saved us all from total annihilation!"  Someone else can take that pressure for awhile, thank you.

Dish Network is infinitely superior to Time/Warner cable.  Who knew a DVR and a "favorites" list of channels could bring so much peace and contentment into your life.  Unsightly satellite dish attached to my house, I will never take you for granted again.

There is a distinct learning curve when using a new stove and unfamiliar pots and pans.  Thin cookware + multi-tasking = burnt offerings.

I can no longer use trash day to set my internal clock.

There is no such thing as north, south, east, or west when you live in a forest.  It sure would be helpful if one  could hover above it all for a bit to get a sense of where everything is in relation to each other.  Where's a good ol' mountain when you could really use one?

Colorado experiences a freakish amount of sunshine--mind sharing a bit with the rest of the us??  Well, at least until I get back.

When you get the feeling that you are missing something, you probably are.  Nothing like blowing off your first mandatory meeting with the transplant group to make a good first impression.  Just too many things to remember.

A GPS doesn't necessarily choose the easiest way to a destination.  But even though Glenda, our GPS tour guide, takes me on less-than-stellar routes, I'd be lost without her!

Dish rags don't automatically dry overnight.

A non-smoking apartment only means that no one was allowed to smoke in it recently.  Essential oils, Febreeze, and open windows can help but nothing eliminates "stale."

Now when I see a  "Box Tops for Education" coupon on my food container, I don't have to cut it out or feel guilty for wishing I could pretend not to see it.

 

Looks like we made it...

To steal a few lines from Barry Manilow, we have not only made it to North Carolina but we also made it through the rain!  (It has been raining for the past four days and can stop anytime now...my Colorado sunshine has spoiled me rotten.)  We arrived in Durham late Saturday night.  After unloading the SUV and making a run to the nearest grocery store, we fell into bed.  Move to Durham--accomplished!

We stopped a few points along the way to take in the sights.  We took a tour through the Winter Quarter's Visitor Center (Nebraska) and saw the beautiful temple at the top of the hill and the old Mormon burial grounds at the base. I have one ancestor who was born in Winter Quarters and another, Elizabeth Young, who passed away there and is listed on the burial marker.  Very cool--makes genealogy come alive.

At the visitor center with our tour guide, Sister S from Tokyo. 

The Winter Quarters Temple

Our next stop included another temple, the new Kansas City Missouri Temple.  Since this temple is brand new, we were able to tour it during the open house.  How awesome is that??!!  This is the area where Rheid's grandfather helped build up a branch of the church.  He would have been thrilled to participate in all the festivities associated with the new temple--never dreaming that from such humble beginnings, the church would grow so much in that area.  The inside of the temple was beautiful and the whole experience made me even more anxious for the time I can participate in the Fort Collins Temple open house.  Hurry builders, let's get moving!

After going through the open house for
the Kansas City Temple

This didn't start out to be a LDS Temples of the Midwest Tour but were we ever surprised the next day to round a curve on the interstate and see yet another temple, the St. Louis Missouri Temple.  We took the next exit, totally annoying our GPS tour guide we lovingly call Glenda, and made our way back to see this one up close as well.  Very beautiful.

Rheid at the St. Louis Temple

The next night, Friday the 20th, found us pulling into Nashville,Tennessee.  We were able at 6:30 p.m. to purchase tickets for the 7:00 p.m. show of the Grand Ole Opry!  Thanks to my father's cultural training, I knew just about every song performed in the next two hours.  It was a blast.  We saw Little Jimmy Dickens, Diamond Rio, John Anderson, Jim Ed Brown, The Whites, Jean Shepard, Marty Stuart, Connie Smith, Mark Wills, and more.  I died and went to hillbilly heaven, clapping and singing all the way.  The next morning we wanted to see more of the sights around town, including the Nashville Temple, but it was cold and rainy and we had a long last day of driving ahead of us so we pressed on.

In front of The Grand Ole Opry

Riders in the Sky open the show.

Audience members at the Opry

We passed two ballparks along the way as well, the KC Royals and the St. Louis Cardinals.  Both looked like beautiful stadiums.  Made us a touch homesick for Coors Field and our beloved Rockies.

The Kansas City Royals ballpark

Sunday we did a bit of unpacking and went to church.  We are now members of the Chapel Hill 1st Ward.  People seemed nice.  Found out the only members who live close by actually live in the apartment directly above us.  A tender mercy.  They are a cute young couple with two adorable little girls.  I can hear Annabelle and Reece running around upstairs and it makes me smile.

I miss home already but am trying not to get too sad about it.  We are lucky to have cell phones, facebook, and Skype to keep us better connected to family and friends.  Well, we are here and to quote Barry yet again, it's a miracle.

What a day...

Today has been full of cleaning, packing, overcoming a touch of food poisoning (thanks Olive Garden), and saying good-byes to friends and neighbors.

My sweet friends put together a Well-Wishing/Dessert Fundraiser for me tonight.  We had about 150 people come to the park to eat treats, purchase desserts, donate money and send me off with lots of love and good wishes.  When I first walked up to the event, I was overcome with emotion as I saw how much work these fabulous ladies put in for my benefit.  Pies, cookies, brownies, cupcakes, lemon bars, cereal treats, and more filled the tables of the outdoor pavilion--if it is made of sugar, it was there!   It all looked delicious.

Thanks to their efforts and the kindness of those who donated, we raised close to $3,000.  Isn't that just amazing?  You all rock!!  But the best part was being able to see my friends and feel of their love and support.  So many kind words of encouragement--I wish I could record them and hear them play in a continuous loop in my head all the way to North Carolina.

Yesterday I was interviewed by a reporter from our local paper.  She was so nice and even submitted the story quickly so it could be published in today's paper.  What a tender mercy that was.  A few people mentioned that's how they heard about the party.  One gentleman, who had a sister with CF, stopped by the park to wish me well because of the article.  I also had a sweet phone call this morning from a lady who had a niece and a nephew with CF and she wanted me to know that she was praying for me.  The world is full of kind hearted people.

Link to the article in the Coloradoan: 

So tomorrow morning we hit the road in our loaded Escape...Duke or Bust!