Wednesday, February 29, 2012

Evaluation Day 3...

This morning couldn't come fast enough as far as my throat was concerned.  Arrived at the hospital by 8:30 so the probe was able to be pulled before my first appointment.  The catheter is history but I no longer have any hair on my right cheek and sport a raspberry mark on my neck from the amazingly strong tape. Good riddance!

For the second morning in a row, I fasted for tests.  The first being a liver ultrasound.  Most definitely my favorite test so far.  I got to relax on the table while ultrasound jelly was smeared around my lower right ribs and belly.

Next it was over to radiology for a Fluoroscopy of my diaphram.   This test wasn't too bad either.  The machine had a place where you stood and then pictures were taken while I performed different types of breaths.  The machine swirled around and tilted in cool ways.

This is where the fun ended.  Abruptly.  (cue creepy music here)   The next scheduled test was a Barium Swallow Study.  Another note to self:  periodic table elements that you memorized in high school chemistry can be consumed, but that doesn't mean they will be appetizing.  I have never drank a beverage that was so close to being a solid before.  It was only 4 oz. in a 6 oz. cup but honestly, you could use that cup as a weight.  Heavy stuff.  I managed to do the first few gulps of the "thick" barium but then came part two:  the fizzy powder.  What can I say other than I was a dry-fizzy-powder-swallower failure.  My already offended gag reflex decided not to turn the other cheek this time.  I got some down but the rest erupted into a fizzy shower as I coughed and gagged my way through it.  The whole idea of the fizz is to create a good amount of air/gas which inflates the stomach and gives a different view to the camera.  The caveat here was that you were not supposed to burp.  I can only imagine how much harder that would have been if more fizzy had reached the intended destination.  Burps do have a mind of their own I found.  Inserted in all this frivolity is a fair amount of rolling over and around on the table in an effort to coat the entire stomach all while trying to maintain a modicum of modesty.  Love those hospital gowns!  The third and final step was an additional swallowing series of  "thin" barium followed by more acrobatics.  Whew, glad that one is in my rear view mirror.

Lunch was followed by an EKG and a pre cath consult.  Tomorrow is my cardiac catherization so we had to go over everything with the cardiologist. 

Next was a meeting with Krista, the transplant psychologist.  She was very nice and we had a pleasant visit.  I don't think we came across as too crazy.  Well, after reading this blog, you may have your doubts.

The final appointment of the day was with Dr. Martinu, the transplant pulmonologist and the nurse, Kelly.  I really liked Dr. Martinu.  She seemed approachable and listened to our concerns and questions.  We finally left the hospital at 6:30 tonight--10 hours of waiting rooms, tests, and interviews.  Long day.

We still have more questions than answers at this point but we keep moving forward.

Tuesday, February 28, 2012

Evaluation Day 2...

Today started out a half hour later than yesterday, thank goodness.  I was scheduled for an evaluation at Center For Living, the pulmonary rehab location. The physical therapist, Jennifer, took down all my information then tested me for muscle strength.  I'm sure I amazed her with these bulging muscles of mine...yeah not so much.  Then she talked a lot about the Duke transplant philosophy of exercise.  To put it in a nutshell, just do it whether you feel like it or not.  You must do 23 days of pulmonary rehab before being listed.  That means 4 hours a day whenever you are not in clinic.  Because of illness and other appointments, it usually takes at least 2 months to get your 23 days in.  If you do a partial rehab visit, it does not count towards your total.  Yikes!  They want you as buff as possible before transplant because their studies/statistics show that being able to keep your muscles as strong as possible beforehand results in better outcomes.

Following the exercise pep talk, I did my 6 minute walk test.  They want to see how far you can walk in 6 minutes and how your heart rate and blood pressure react to the exercise.  I was able to make 3 laps around their track before my time was up.  The goal is to be able to walk at least 1,000 ft.  I made it 1,200 ft. in 6 minutes--watch my dust!  The walk figures into their eval equation.

Then we had an hour to kill before my next scheduled appointment.  So we came back to the hotel and relaxed for a bit before returning to the hospital to do two of my most dreaded tests:  an Esophageal Manometry, and a 24 hour pH probe.  These are the tests that have deprived me of my Prilosec for the past 5 days.  Despite trying to stay away from spicy foods to minimize the stomach acid, I have enjoyed several days of burning discomfort.  I am counting the minutes till I get to take my little purple pill again!

With much trepidation, we headed back to the clinic to start this torture test.  To my frustration, they were backed up and so I waited for an hour and fifteen minutes before I was finally called back.  Making a nervous person wait so long for procedure is just plain mean and fasting for 11 hours as a diabetic is even more cruel, I say.  Anyhew, I got a chance to talk to the other cystic who is part of our 6 person evaluation group.  He is 30 and going for a second transplant.  The other four patients are older COPD men.  

The first test was not pleasant at all.  The tech sprays your throat several times with Lidocain until it feels difficult to swallow (a major anxiety trigger for me usually).  Then she put a Lidocained swab way up my nose to deaden that.  It would be nice for it to be dead before they tried to deaden it, if you know what I mean.  The technician then inserted a small tube (very liberal with their idea of small if you ask me and others who have had this procedure done) up my nose and into my stomach.  Can you say gag??!!  Then over the course of the next 25 minutes the tech squirts a bit of saline into your mouth and asks you to swallow, once.  If you double swallow before you get another squirt, it doesn't count towards the 10 swallows you need.  It is hard not to double swallow.  Then when you actually do swallow, your throat becomes more sore with each one.  Let's just say it is miserable.  I got through it with only a couple double swallows, thank goodness.

Once they pull that catheter out, you get a minute or so to regroup and then the whole process starts all over again.  More Lidocain.  This time the catheter inserted in your nose and threaded down into your stomach is much smaller--like the ones you may have seen inserted in noses before.  Because the first tube was mean to your throat, this one doesn't feel so good either despite its size.  Then they hook this probe into a monitor that I am wearing around my neck.  I have to record on paper every time I start to eat or drink anything and when I stop.  Then they can see a correlation between when you eat and when excess stomach acid begins.  Kind of clever in a sadistic kind of way.  I now have the probe in and was able to eat with minimal discomfort.  Not sure how my already insomnia-prone body is gonna handle this added attraction tonight but we'll see how it goes.

At this point I would be remiss in adding how much I was helped during these procedures.  I felt much more calm than I had any reason to.  I felt a peace that I know beyond a shadow of a doubt was not from my coping skills alone.  I very much needed help from my Savior to get through that, and the help came.  I feel so blessed to have had so many people fasting and praying for me.  I could surely feel that power today.

After a quick lunch because we were already behind schedule, we hustled over to meet with the transplant surgeons. Dr. Lin, the head surgeon, was very nice and answered some of our questions.  A lot of the answers were the same as we have been getting the last two days, "well, that's kind of hard to know at this stage of the evaluation."  I get the impression they are really trying to prepare us for the reality that it is all a guessing game as to timing.

Well, hopefully tonight goes well and tomorrow I will be free of this probe.  :)

Monday, February 27, 2012

Evaluation Day 1...

Duke Hospital front entrance
Greetings from North Carolina.  We made it here yesterday on the smoothest flight ever.  I don't think I've ever experienced a flight with absolutely no turbulence.  The strong winds we left behind only served to get us into Raleigh/Durham twenty minutes early.  Yay for winds being in your favor.

Got up very early this morning to make my first 7:30 orientation appointment.  We ended up a bit late trying to find the place.  Come to find out, Duke Hospital is notorious for being confusing.  Our pre-transplant coordinator said to stop any employee if you needed help in navigation--they are used to providing confused patients with directions.  We had to ask willing employees several times before the end of the day it turned out.

After orientation, we went straight to the clinic.  While waiting for the social worker, I took a quick detour to use the bathroom.  A poor older gentleman was in the restroom trying to get his wife off the floor to open her locked stall.  I don't know how long he had been trying to convince her but he was pretty frustrated at this point.  I offered to go under the stall and unlock the door since I was smaller than him.  Gratefully, he held my oxygen while I shimmied under the door.  Poor lady just looked kind of dazed slumped against the corner.  I was able to unlock the stall easily so he could help his wife.  From hearing their continued conversation, it became obvious she was suffering from some type of dementia.  My heart went out to him.

Before the social worker arrived, I was sent back to the lab area to have my blood taken.  25 vials of blood no less!  It was kinda creepy to see all the tubes laid out waiting to get their share of my precious bodily fluids.  The tech did a fabulous job.

Next we met with the social worker and following her the nutritionist.  Both appointments went well. Then after leaving more bodily fluids (of the yellow variety) behind, I was off to get chest x-rays. Thankfully it was now time for lunch.

After a leisurely lunch at the food court, it was off to my last test for today:  a Differential VQ scan.  Never having heard of this before I wasn't sure what to expect.  But when radiology sent us to nuclear medicine I began to have my doubts that this would be fun.  My doubts were right.  Note to self:  if there is soothing music being played in the background of a procedure room, there is a reason.  The technician explained what would happen and I was none too thrilled.  But I did okay.  At the beginning the tech holds a mask firmly around your nose and mouth.  Even though my nasal cannula is blowing O2 and he says the mask is also supplying oxygen, it feels like someone is trying to smother you for 5 minutes--a very uncomfortable feeling.  While he is holding the mask on, you try hard to forget that he is also releasing a radioactive gas for you to breathe in.  Once that part was over, he then gave me an injection of a radioactive isotope and there were more scans.  All the scans took about 45 minutes.  Wonder when we turn off the lights tonight in our hotel room if I will emit a gentle glow??

That's how day one went down--four more to go.

Monday, February 20, 2012

Give me a heart attack...

Walked in from the garage after going shopping for a bit just to find someone had given me a heart attack--there were hearts of all colors and sizes plastered on every surface of my kitchen.  It was sooo cool!  Plus yummy cookies too.  Don't I have the greatest friends and neighbors ever?  They know this week is gonna be a tough one for me and they are there to show their love and support.  Only six more days until I hop a plane to North Carolina for the evaluation.  I have all the pre-tests done:  dental evaluation, tetanus shot, bone density scan, mammography, pap test, TB test, and flu shot.  The only things left are a HepB shot and a pneumonia booster.  My primary care doc didn't feel comfortable administering those until I check with my CF team.

My lung pain is easing for which I am extremely grateful.  Tomorrow morning I have to have a lesion on my lower lip evaluated by the oral surgeon and probably removed.  Not looking forward to that particularly but having a pea sized lump in my mouth that gets in the way of eating has not been that wonderful either.  I think it's beginning to improve and then, BAM, I bite it again and it blows right back up.

I wish I hadn't had so much time to think about the whole evaluation process.  The more I think about it the more I tend to psych myself out.  Usually the event isn't as hard as all the anxiety leading up to it.  Hopefully by the time I get to North Carolina, the hardest part will be behind me.  Oh anticipation, you are not my friend. But after this heart attack, I'm feeling much better. Who wouldn't?

The stove, cupboards, refrigerator, ceiling, table, countertops and
light fixtures sustained heart damage.

The sliding glass doors even got attention.
Pictures just don't do the attack justice.

Tuesday, February 7, 2012

Mitt, Mitt, he's our man...

What can get me out of bed at 6 a.m. on a snowy Tuesday morning?   A rowdy political rally with Mitt Romney--that's what.  We were a bunch of early-rising conservatives ready to hear from our hopefully Republican candidate for president. Yep, it's Colorado Caucus Day.

Mitt delivers an awesome speech
Some friends went to the venue much earlier and saved me a place up front along the staging border.  We stood for longer than planned because the Romney campaign got held up in traffic due to the weather.  Felt a bit like I was at the wrong candidate's rally when I experienced an Obama-like moment: a lady, a few people to my left, passed out and caused a small ruckus.  

First spotting of cuff conversation!
One of my favorite parts of the rally was watching the Secret Service in action.  While waiting, I was looking for anyone with an earwig or who talked into their sleeve cuffs. Spotted!   (NCIS viewing pays off yet again.)  When Mitt made his entrance, suddenly they were everywhere.   Secret Service Agents are so focused, committed, and professional.  Totally sexy!  (Sorry Rheid, but you know how much I adore you in a suit too.)

She reminded me of Sandra Bullock
playing Gracie Hart, the FBI agent.

At the conclusion of his speech, the SS swarmed him as he began to shake hands with supporters, including yours truly, who were standing around the perimeter of the staging area.   He was very personable and made eye contact with each person.  When he shook my hand he said, "Thank you for coming, I'm sure it wasn't easy for you."  I told him I was praying for him and he expressed appreciation.  What a genuinely nice guy! 

Me next!  I hurry to snap this photo so I can wipe my
sweaty palms before it's my turn to shake.
I will be attending our neighborhood caucus tonight to show my support for Romney.  I will not, however, be one of the delegates to the county or state convention this year.  With everything that is going on, I'm not sure about my availability.  It's been very informative and fun in the past but not to be this time I guess.    

The Romney tour bus surprised us by driving right
into the venue to drop off Mitt.
I accidently dropped my signage over the edge
just before Mitt got in front of me--couldn't reach it
to get it back.  So now my sign bears the footprints
 of Romney plus several SS agents.  Who knew?

It's a date...

Friday the "we'd-like-to-get-to-know-you better-both-inside-and-out" phone call came.  It's official.  I will be heading to Durham, North Carolina to Duke Hospital for 4 days of testing beginning February 27th and ending the 1st of March.  They are sending a packet of information which is supposed to answer most of my questions concerning the evaluation.  Hoping things don't sound too intimidating.