Tuesday, January 31, 2012

When Duke calls...

What do you do when your phone rings and the phone robot announces the caller as Duke Univ OIT?  If your name is Sherri Schloss you start shaking--that's what!  At 12:58 I got my first phone call from North Carolina.    Granted, it wasn't "the call"--not even close--but boy did it make things seem a bit more real.  The nice lady said they had received my referral and paperwork but only lacked my social security number to enter me into their system.  She then said once I am entered, someone will call from the team to set up an appointment at my convenience.  Well, it looks like August 18, 2015 is open for me--maybe I could pencil Duke in.  The wheels are in motion.  Hang on, it could be a wild ride.

Tuesday, January 17, 2012

Here's to shaky fingers...

At 2:45 p.m. today my shaky fingers punched in the clinic telephone number and set into motion the transplant process.  "Could you please send in a referral for me to Duke?" I managed to say in a confident  voice which masked the nervousness I was experiencing-- surprising even myself with how calm, cool, and collected I sounded.  Now I get to look forward to "the call" from Duke to set up the evaluation.* (interpretation:  In about two weeks time, I will get to experience a rapid increase in heart rate whenever the phone rings.)  I did the thing I feared to do.  Baby step #1 - check!

Sunday, January 15, 2012

Decisions, dilemmas, discouragement, and denial

I'm not entirely sure how to begin a post that seems too big for words.  It often feels too big for words too.  Many of you know but some may not that I am facing the decision of being evaluated  for a double-lung transplant.

Two years ago when I struggled to keep the MRSA at bay and ended up on supplemental oxygen, my doctor mentioned that I should start thinking about a lung transplant.  Now I have heard of people having out-of-body experiences before but I never fully understood how that could happen until that moment.  It was as if I was standing at my own side while watching me sit there calmly listening to the doctor's voice sounding a million miles away and wondering, "Why is she telling me about this?  I am so not needing a transplant now or ever for that matter!"-- a simultaneous explosion of anger and fear, so co-mingled it was impossible to separate the feelings.   After the initial shock, either Rheid or I (I can't remember for certain) asked where we would do that.  "Oh, just right here in Denver.  We have a great transplant program.  We can make you an appointment with the coordinator soon if you want to."  So casual, so matter-of-fact.  How could things sound so benign when they felt anything but??

After living in my newly rocked world for a little while, I decided the best way for me to handle this besides building denial walls rivaling those in China, was to take baby steps into the transplant world.  I needed to find   personal experiences to help transition between the sterile, medical explanations and my fearful imagination gone wild.  The only two cysters I personally knew who had transplants were no longer living.  (Why hadn't I asked them questions earlier?  Because in my mind transplants were something sick people like them did, not a healthy person like me.)  It was then I discovered blogging.

I stalked other cystic's sites looking for some reassurance and some answers.  Thankfully, I found a few people who were taking those first tenuous steps into the transplant experience.  They became my new heroes for their courage and determination to put CF in its place.  Show it who's boss!   I cyber-ly cheered them on through testing, dry runs, and hard days.  I cried when glorious new lungs came and I cried when other lungs didn't come soon enough.  Deleting now author-less blogs was heartbreaking.  Hopefully, I thought, I will get tougher--I need to get tougher before...before...my mind wouldn't allow me to go there.

I began my own blog thinking it would chronicle my journey though the process, but I couldn't even put "transplant" on the page.  Somehow acknowledging even the word might jinx things, besides I really didn't need one anyway.  Something would come along to help these diseased breathers of mine keep on going, after all, I've been riding the wave of better treatments for years, why think that wouldn't continue to happen.  I'm an odds beater--that's what I do best!  And for two more years I was right.

But my last hospitalization changed things.   Dr. S came back from her maternity leave near the end of my stay.  Rheid made an unexpected morning visit to the hospital and it was after the doctor had made her rounds.  Seeing Rheid, she approached him outside my room and told him that I really needed to consider a transplant.  She had planned on telling me herself that morning but after seeing me, she wasn't able to do it.  When he came in and said he had just had a talk with Dr. S in the hallway, something deep inside me knew what he would say.  "Don't say it...don't say it."  But he did.  And we cried.

It was at my post-hospitalization clinic visit when things became a reality.  Dr. S restated that I needed to be evaluated for a transplant as soon as possible.  She didn't want me to wait too long and possibly risk being ineligible.  But the idea that my mind was finally beginning to wrap itself around took an unexpected detour.  Instead of being evaluated at the University of Colorado hospital, she strongly suggested that I look at another center to do the transplant--Duke or Stanford.  Whoa!  Here I was getting my land legs underneath me and she threw me into the deep end again.  It was then when I began to work myself up!

To make a long explanation short, she explained that although the Denver center did good work, they had less than desirable outcomes when it came to petite females.  Evidently the demographics of cadaver donors in the Denver region tend to be larger, athletic people.  They have found that petite females listed here have waiting times of 2+ years and several have not been transplanted in time and were too sick to be able to try at another center.  Others, because the wait was so long, had difficult outcomes because they had become so sick during that time.  Yikes!!  She really thought to give myself the best chance at a good outcome I should go somewhere else.  Evidently, our CF clinic has a good working rapport with the transplant team at Duke and lesser so with Stanford.  Well adding the additional stress of relocating to another state for the procedure along with pre and post care sent me into a mental tailspin.  It made a hard decision seem all the more overwhelming.

With all the busy Christmas preparations, I just couldn't seem to focus on making a decision.  I'm sure medication fog had something to do with it as well.  For my own sanity, I decided to try and not think about it until the holidays had passed.  Unfortunately for my state of denial, the days whizzed by and the cold hard fact of January hit way too soon.  The past two weeks have felt like a rollercoaster.  Do I really want to do this?  Do I really need to do this now?  What if it doesn't go well?  Where should I go?  How will all the relocation stuff work?   Shouldn't I have an overwhelming answer to the prayers I've been saying?  If I just knew what the "right" thing was, I would do it!!  I know my family supports me no matter what I decide and that is a tremendous blessing.

Having to choose between two good programs presents quite the dilemma.  So far my decision is leaning towards North Carolina.  The Duke team allows some follow-up to be done locally where some other transplant programs will not allow you to be seen outside their program.  Since I wouldn't want to permanently relocate to another area of the country, having a center work well with the one here is a tremendous plus.  From all I can research, the Duke program is one of the best in the country and they do the most CF double lung transplants a year.  They have a good rehab program that helps create better outcomes if you work it hard.  Duke has cleaner air.  Duke feels more "right" even though logistically Stanford makes much more sense.  A couple of cyber cysters have gone to Duke and have had positive things to say about the doctors and the care there, which helps to know as well.

I am grateful for the power of prayer, for the feeling of peace that it brings.  I plan to make my decision then move forward in faith...trusting that if God brings me to it, He will bring me though it.

Thursday, January 5, 2012

There's no place like home for the holidays...

Yep, it's cold in Colorado
(Our front yard Snowman)
Well, I made it through the holidays--yippee!  As soon as I regrouped from being away from home for 3+ weeks and Thanksgiving was now only calories in my past, I focused on getting ready for Christmas.  I felt amazing, so being out shopping and walking the mall was not a problem at all.  I wanted to make sure I got things ready early since my body had been so undependable lately.  It turned out to be a good thing because that amazing feeling only lasted about two weeks and then I was seriously concerned that Santa might have to find a hospital chimney to deliver my presents.

We had already planned a family snowboarding trip to Breckenridge the week before Christmas courtesy of Grand Lodge.  All we had to do was listen to their time-share spiel and our 3 days lodging at 9,603 feet above sea level was free.  I figured I could hang out at the motel or check out the shops while my family strapped fiberglass boards to their feet and hurled themselves down the mountain.  Well, breathing at that altitude was harder (which I thought it would be) and even upping the O2 still didn't completely help.  It was three days of being slightly freaked out and hoping nothing would go wrong.  Just before heading home on Saturday, I gathered up my courage and took a gondola ride up the mountain side with Rheid and Christina.  It was a beautiful view.  Christina and I decided we should put "Ride a gondola up a mountain" on our bucket list just so we could check it off--since we were both so brave!  The boys stayed for the afternoon to watch Shawn White rip the half-pipe on the Dew Tour; they had a great time.  That night, back at home, I woke up at 1:30 in the morning coughing up blood.  What a tender mercy it was that the hemoptysis held off until I was home and breathing easier than I had been at night while in Breckenridge.

Two days before Christmas we got a perfect snowstorm--about 5 inches of fluffy snow to make our Christmas a white one.  We ate a yummy Christmas Eve dinner with the Larsen family then reenacted the nativity with puppets for the kids.  Christmas morning found us sleeping in until 7:00 a.m.  It was surprising to find out you can unwrap presents without it being dark outside.  Who knew??!!  We then went to church and remembered our Savior's birth with beautiful music and scriptures.  I love it when Christmas falls on Sunday.  The rest of the day we relaxed, ate leftovers, and played games.  It was a wonderful Christmas.