Wednesday, May 30, 2012

Memorial Day weekend happenings...

This weekend we didn't want to sit around stressing waiting for test results (which still haven't come yet) so we did some exploring.  We thought it might be a good time to search for the temple so we would know how long it took to get there.  So off to Raleigh we headed.  After all, it is the Raleigh Temple, right?  Not so fast.  All the way to Raleigh I am trying to get Glenda (GPS) to find the temple.  I put in every name imaginable but no directions would pop up.  By the time I decided that Glenda must be anti-Mormon, we found a chapel with people there cleaning.  Come to find out we had passed it already and in reality the temple is located in Apex.  Yep, that was back a ways so we abandoned that idea for the moment and went looking for the Capitol.  We found some places that looked interesting but ended up at the North Carolina Museum of History.  We only had time to go through one large exhibit--so we can go back again. :)

Rheid getting friendly with a display in The Story of North Carolina. This exhibit
teaches you about the earliest inhabitants down to modern times.

On our way back home, we successfully located the temple.  It is pretty but very small and one where you must make an appointment.

The grounds crew were working there getting things
ready for opening after an update/cleaning break. The
project foreman took our picture.
Monday, after ridding Rheid of his first and hopefully last tick (in between his fingers), we headed on an hour and a half drive northwest to Surry County.  My Jackson roots can be traced back to Surry and Stokes counties.  I never dreamed I would be able to visit the area one day. We didn't have a ton of time since I had IV's to run but with the heat, it was just about all I could do anyway.  Our exploring began in Mount Airy, the hometown of Andy Griffith and inspiration for Mayberry.  You can see the Snappy Lunch, Bluebird Diner, Floyd's Barber Shop and for a mere 35 dollars you can catch a ride/tour in Sheriff Andy's squad car.  There appeared to be some fun shops but we were on a cemetery mission!

I was out in the sun all afternoon and my legs are still as white
as they were for this picture. 

After eating a Barney Burger at Barney's Cafe we headed off to a couple of cemeteries to see who we could find.  We found a bunch of ancestors but only a couple of the ones I was looking specifically for.  I took tons of pictures to document dates, sweat off about 5 pounds, and hung an IV drip from a holly tree branch.  If anyone rolled over in their graves because I was doing drugs in their cemetery, I missed it.  :)  We need to return again to find more graves since we only hit two places in Surry.  I will be better prepared next time with a pen, clipboard, and hopefully cooler weather.  I will be back!

Waiting for my Barney burger and Brown Sugar Pie.

I was surprised that we were all alone in the cemeteries--one was even the largest in town.  Come on people, it was Memorial Day.  I had grand visions of meeting long lost relatives at grave sites, hugging and maybe even a few tears would be shed, and them inviting me to their home where I would find a treasure trove of  obscure genealogical information.  Dream on Sherri.  There were very few decorations either which was kinda sad.  We had a fun time anway.  I miss Mayberry.

One of the monuments we found.  Notice the lack of
decorations anywhere around it--a beautiful resting place.

Sunday, May 27, 2012

First the good news...

I graduated from Pulmonary Rehab on Friday!  It is a huge accomplishment to get 23 sessions completed and I was able to do it in record time because I stayed so healthy.  On Tuesday I go to the graduate orientation and see how my rehab changes now that I am a bit more on my own.  I move from the pre-Orange progress sheet to the graduated-but-not-transplanted-yet-Blue sheet on my way to the post-Yellow sheet.

Sporting my diploma with Jo and Danyell (cyster) who graduated with
me on Friday the 25th.  Two other grads are not pictured.  Behind
you can see the pool used for cardiac and arthritis patients.  We are
standing in the check-in area which is also where we stop to pant rest.

Duke Center For Living gym on a late Friday afternoon.  In the
foreground you can see part of the track we walk around on.  The
machines directly in front are the bikes.  The green area is where we
do the floor class and back by the far windows are the weight machines.
It's not too busy cuz most of us are finished for the day.

It's been a tough week, not gonna lie.  Between losing a friend, having the esophageal manometry repeated and still waiting for those results, taking 3 days, 3 attempts, and 2 prep kits to get my virtual colonoscopy accomplished (long story but I will spare you dear bloggie readers the gruesome but ultimately successful details), and starting a course of home IV's (with a new agency and nurse--you know how I love some of those home health workers), I feel anxious and drained.  Hoping this memorial day weekend/break will get me back on even footing again.

Saturday, May 26, 2012

Missing Pam...

I found out this morning that a friend and fellow cyster, Pam (39), passed away yesterday.  I knew it was coming but it still hurts my heart.

Pam B. was one of the reasons I decided to come to Duke.  I followed her pre and post transplant adventures over the past two years.  Her transplant came while Rheid and I were hanging out in DC.  I would check Pam's blog every morning before heading out to sight-see, hoping to see an update on how things were going.  She didn't have an easy start to her transplant journey--there were a lot of bumps in the road.  But she was a great example of patience and exercising faith in God's plan for her.  From her I learned you can have setbacks and still come out on top if you don't give up.

Unfortunately her latest setback landed her in the UAB hospital where she had been since January.  Talk about tough.  She had wanted to be transferred to Duke but her insurance wouldn't cover the heavy cost of transporting her when the care she was receiving at UAB was adequate.  She did like being closer to her home in Mississippi though, which I can totally understand.

I talked to her by phone just before we left Fort Collins to come here to North Carolina.  We were hoping to be able to meet face to face someday when our paths crossed at Duke.  But we never got the chance and I had a feeling that opportunity might have passed us by.  I asked her questions I had about relocation and other aspects of transplant.  She wanted me to know that despite her recent extended illness, she would do it all again.  It still scares me sometimes to realize how fragile life after transplant can be.  But I am glad she is free to walk and breathe and laugh again.  Pam, you made a difference in my life and I wish you the best as you begin the next phase of your journey.

Sunday, May 20, 2012

101 thoughts...

Wowza--it's my 101st blog post!  This blog started out as a way to chronicle our 25th wedding anniversary trip to Washington DC.  I had finally stabilized my health enough to feel comfortable taking a trip and I wanted to share the experience with my family.  And now here I am almost 2 years later on a different trip of a lifetime. I've decided to share a couple of pictures which highlight this North Carolina experience so far.

Finishing the first week of rehab.  Our apartment is directly
behind me.  That is our patio seen in the background.  You
 will be happy to note we have since washed the car.
Spent the night at the Great Wolf Lodge (cute girl who took our
picture chopped off the bear's head, oh well)   This place was awesome--
35 acres of indoor/outdoor waterslides and fun activities.
Hall of Flags at Rheid's Toastmaster District Conference held
in Concord two weekends ago.  Concord is a suburb of
Charlotte. We got to see the Charlotte Motor Speedway--this
is big time NASCAR country--but have no photo evidence.

Sweet "V" family invited us over for Southern Barbecue with
a stop at Maple View Farm--a local ice cream shop. Bought some
delicious chocolate milk to take home.  Oliver w/balloon sword, Steve,
Delia, Milo, Rebekah w/Eloise and me. We are blessed to have such
a wonderful church family here in Durham/Chapel Hill.
Saturday morning we went to the Bennett Place.
It's a Civil War historical site.  They were having a
re-enactment this weekend.  This was a Southern flag
lecture where we learned how the stars and bars came about.
Musket shooting at the encampment.  It looks like we are way out in the
country but no, we are in town.  Crazy amount of trees here but beautiful.
We learn some Bennett Place history from the "locals" and find
out how they stand wearing all that wool in the hot sun.
Saturday morning we helped Jimmy and Mary Lou, from pulmonary
rehab, move into their new apartment.  They treated us to lunch
and then came on our Bennett Place tour.
Here's to more Carolina adventures.

**For those of you who missed my first foray into blogdom, here is a repost of what started it all.
May 26, 2010:  Welcome blogging world...I've finally done it. I've made the leap to cyberspace to start my personal blog! After two+ hours of dinking around with the program, I turned to my computer-smart husband for help. Of course, he had things figured out in milliseconds. The design is still a work in progress but I'm having fun trying to come up with "the look." SAS are my initials and my last name means castle in German...hence the blog title. Since this all took much longer than anticipated, I will have to save all my profound thoughts for another day :)  Here's to seeing the tender mercies!
(Still haven't changed the design--maybe in another 100 posts I'll get around to it.  Profound posts may take even longer than that.)

Monday, May 14, 2012

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.

Monday, May 7, 2012

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!