Team Toni

Day Five ~ Friday, April 16, 2010


My last day at National Jewish was certain to be a big one.  Mom and I were hoping to have a lot of questions answered.  Deep down I'm sure we were both still dreaming of leaving Denver with a nice little treatment plan wrapped up in a neat little package!  I arrived at 8:00 a.m. to begin my pharmacokinetics testing.  It was be a day long schedule of taking steroids & having blood draws to analyze how my body metabolizes the medicine.  In between blood draws I had an OT evaluation followed by a session with a physical therapist.


It was finally 12:30 and time for my appointment with cardiologist, Dr. Brett Fenster.  I was so nervous about this appointment.  I guess lungs have been my thing for so long, I just didn't feel like I knew enough about "heart stuff" to even talk to a cardiologist.  I don't even have to say it though, you know he was amazing.


He started by explaining the possible hole and how everyone is born with one in their heart.  He explained all the possibilities as he sketched them.  The hole in my heart could be a PFO that could be no big deal at all.  It could also be an ASD which is less common and would have to be repaired surgically.  Another possibility was that it might be a hole that could be repaired with a device through a heart cath.  Besides the hole, I seemed to have another possible congenital heart defect.  They thought I could have a partial anomalous pulmonary venous return which is basically a vein routed the wrong direction that was possibly keeping infections in my system (& causing other problems I still don't understand). 

He was very cautious about the connection between my respiratory problems and these congenital heart problems at first.  I waited patiently for him to explain his thoughts and advise us on what to do.  At first he recommended having a heart cath sometime back home, maybe later in the summer just to have it all checked out.  It seemed like no big deal.


Then, he began to squinch his lips and forehead as he read further through my chart.  He was very intrigued by my low O2 saturations and my elevated heart rate.  With this information he casually suggested seeing a cardiologist in Denver so he could work with them.  This only confused me more, so I pressed him for more guidance.  At that point he wanted more information so he sent me over to prep for the cardio stress/agitated saline test.


By that point in the week, my veins were as spent as I was.  A team of people were working on my IV when finally a nurse named Kristie came through!  The rest of the test went as expected until the end.  As I mentioned earlier, my resting heart rate has always been very high.  It would usually be around the 120 range.  After the test, Kristie and the tech, Rachel became very concerned because my heart rate was near 200 and not falling.  They called the cardiologist in and he tried everything from having me drink water to massaging my carotid.  They finally got it down to the 150 range.  I was due for a nuclear lung scan upstairs so they decided the only way I could go was in a wheelchair.


At the elevators we crossed paths with Dr. Olson.  She was clearly busy, but stopped in her tracks when she saw me in the wheelchair.  She asked Kristie for full details on the situation.  Rather than go on her way, she asked where to find Dr. Fenster because she wanted to discuss my case and the test results with him immediately.  I felt like I had a team of super heroes fighting for me and working together to solve my case. 


About twenty minutes later, I was on the table in the nuclear scan room. There was a knock and a familiar voice at the door.  It was Dr. Fenster asking the tech if he could come in to talk with me and touch me.  She welcomed him in and he pulled up a chair next to me at the table.  He took my pulse and asked how I was feeling.  He told me he and Dr. Olson had been talking and that he'd also spoken with my Mom.  He said they thought it would be best for me to come back to Denver in a month to have a heart cath with Dr. Carroll.  He really believed Dr. Carroll would be able to see what was wrong with my heart and hopefully repair it through the cath.  With that, he squeezed my hand, pushed the chair away, and said good bye.


That afternoon, I walked through the Rose Petal Place toy scented entryway slightly transformed from the person I was six days before.  No one could have prepared me for impact it would have on my life.  And this place, this National Jewish ~ and Denver, this has become more than a place for me, it is an indescribable part of me now.

This is sooo God's plan

Day Four ~ Thursday, April 15, 2010


We got to sleep in a bit today (which of course I didn't).  :)  We met with Dr. Olson for our follow up appointment at 9:00 a.m.  It was a long and deeply intense appointment.  Looking back I wish I'd had a recorder because it was simply too much to take in.  It was shocking to hear how many things they had found medically wrong with me in a few short days.  Some things were more severe than others of course.  The big ticket item was that on the chest CT she had noticed that veins or vessels that were supposed to be small were large and vice versa.  This was apparently a red flag for a bigger problem.  She said I needed an MRA w/o contrast and a cardio stress test.  She showed us what seemed to be a hole in my heart, but said it was difficult to detect.  She also explained that anytime I exerted myself my O2 would drop in the low 80s.  My years of coping made it harder to detect because I apparently did not react to my stats in the typical way.  She looked me in the eyes and called me a hot mess but promised they were all over making a plan to change things!


Mom and I were both in a bit of a fog walking away from that appointment.  My whole understanding of my medical status had just been shattered.  I wasn't upset or even scared at the time, I think I was just frozen with too much information.  We were talking with scheduling about the cardio tests when I realized I was almost late for my bicycle lung function test on the 3rd floor :(. 


This test was by far the hardest thing I went through at National Jewish that first week.  If you recall, the impedance probe had not been removed at this time and was getting more uncomfortable with each passing hour.  This particular test required an A-line which is an IV in the artery in the wrist to pull blood gases throughout the session.  It took 4 people more than 12 tries (I spaced out) using both wrists to get the A-line started.  My heart rate was so high at that point they almost discontinued the test.  Next, they put a mask over my head and strap it to monitors.  Finally, I was supposed to pedal as hard and fast as possible for X amount of time.  What a gift it was to leave that room and see a text from Debbie telling me some silly something!  Thankfully, when it was over, it was time to have the impedance probe removed!  What a relief! Then we had a short break for lunch while they worked on fitting the new tests into my schedule. 


During lunch I received a call from Gina, my scheduler, saying God had worked yet another miracle and MRA schedule had opened up!  They were ready for me right away.  Everything else had been worked out as well.  It was clear that God was not only with me, He was moving mountains for me!


If ever there was a time for a friendly face, this was probably it and I got it.  Kevin from radiology was waiting for us as we stepped off the elevator.  He took my labels and asked us to sit for just a minute while he grabbed the paperwork.  It was perfect timing, because while we waited,  Donald Sutherland, the actor walked through!  For real!  It was pretty neat seeing him in person.  Kevin returned and prepped me for the MRA w/o contrast which meant yet another IV.  Altogether, I was in the "tube" for 3 1/2 hours.  They called in the radiologist, pulmonologist, and cardiologist to try and help with the imaging so they could figure out what was going on with my heart. 


I rounded out the day with a tailored barium swallow test and a speech consult with the therapist Heather Hughes.  These appointments were related to the reflux and the VCD.  I learned that a speech therapist can help me retrain my vocal cords so they will be more controlled. 


That night I ran a bit of a fever.  We went out for dinner and right back to the house.  With it being such a big day for information, Mom was catching up on a lot of phone calls.  I remember sitting on the couch listening to her recount the day just feeling so confident that this is sooo God's plan.  I didn't get it.  I wasn't enjoying some of it.  But it didn't matter, somehow, someday, something good would come from all of this.

Just Take a Breath & Smile

Day Three ~ Wednesday, April 14, 2010


I was wide awake very early Wednesday morning.  It was only three something in Denver and Stacey was doing her thing to brighten my day with antics from our classrooms.  We texted back and forth for a bit until she had to head to work.  Little did I know how different this day was going to be. 


It started with a simple ENT consult with Dr. Todd Kingdom.  Like every other doctor at National Jewish, he must have had to pass the phenomenal doctor test to be there!  He was wonderful.  He explained my tri-ad asthma a bit more and reviewed the sinus CT.  He felt like with the other things Dr. Olson was focusing on, sinus surgery was something that could be put on the back burner. He hoped the sinus problems would be eliminated by resolving the other related problems over time.


That was the end of simple for the day.  I went to the dreaded third floor for a bronchial provocation test & a laryngoscopy.  Dr. Olson performed the procedure.  The laryngoscopy revealed that I had severe VCD (vocal cord dysfunction) which means that my vocal cords simply close off my airway constantly and uncontrollably adding to my breathing problems.  She also shared that they had found something on the ECHO and needed to do further testing in the cardiac unit.  She was trying to work out the schedule to add several more tests and a cardiology consult. 


After being slammed with that information, I had to go to the MIDC procedure area for a bronchoscopy (also by Dr. Olson) and an impedance insertion.  With only minutes to spare, I tried to fill Mom in on what Dr. Olson had said.  It was pretty overwhelming at the time especially when you think about the fact that I had been living under the strong impression that my problem was strictly asthma for years.  So much was going through my head and there I was heading in for another IV and anesthesia.  There was no time to process anything, I just had to move forward and know it was all for good.


I woke up from the bronchoscopy to the comforting voice of Dr. Olson telling me it was over.  They moved me to a recovery room where they inserted the impedance probe.  That was not my cup of tea!  It was to test for reflux which can also trigger asthma symptoms.  The probe had to stay in for 24 hours.  It was horrid.  The probe results revealed that I have silent reflux which trigger asthma exacerbations.


The last thing of the day was a six-minute rehab walk test and they sent us on our way.  I remember being pretty quiet that night.  It had been a taxing day, but I don't think I was as exhausted physically as I was mentally.  I was worried about Mom and didn't want to make things harder on her.  I was feeling guilty about not being at work and doing my job.  I had missed so much work already for the year.  Finally, there was the confusion factor.  What was going on with this information?  I was at the National Jewish Lung Institute because I had uncontrolled asthma.  Where did this heart stuff come into play?  That's when I did what I often do.  I stopped my thoughts, took a breath, smiled, and said everything will be okay.  I knew it was all for the good of God's plan so I did all I could do to press on.

Scans & Pharmacokinetics

Day Two ~ Tuesday, April 13, 2010

Tuesday started with scans and the beginning of another National Jewish friendship. :)  Kevin in radiology performed my chest & sinus CTs & the chest X-ray.  He was yet another staff member that embodied the standard of this place. 

From radiology, I moved on to a nutrition consult followed by an esophogram/barium swallow test.  The next appointment was with Dr. Katial, an asthma/immunology specialist.  He was a very knowledgeable and kind man.  He discussed the severity of my asthma and how treatment was complicated because of my lack of triggers.  I have no allergies, but I do fall in the less common catagory of aspirin sensitivity.  He added an ENT consult to my schedule and had a few other ideas he wanted to discuss with Dr. Olson.  I was very impressed with how willing he was to work with my other doctor to figure things out. 

After a quick lunch in the cafeteria, we headed up to meet Dr. Spahn for pharmacokinetics.  Wow is all I can say.  He used football analogies to explain how the body metabolizes steroids and much more.  It was a fascinating lesson from which I've included the diagrams for the sake of the memory more than comprehension! :)  He described problems caused from long term steroid use and explained many of the irreversible side effects.  All in all, we had to swallow a lot of tough news in this session.  I'd been fighting Dr. Greisner on the steroids for years because I knew they were bad.  The list included bone deterioration, skin thinning, immune deficiency, cataracts, glaucoma, weight gain, bruising, insomnia, muscle /joint pain, muscle weakness, and elevated heart rate.  The good news was that Dr. Spahn & Dr. Olson were running a pharmacokinetics test so that a plan to stop the steroids could be developed!

We wrapped up the day with a physical therapy evaluation and more lung function tests on the dreaded third floor.  In a nutshell, Tuesday turned out to be an extremely informative day.

Introductions & Needles

Day One ~Monday, April 12, 2010


Brimming with anticipation, nerves, and hope I was as ready as ever to get this adventure rolling!  I really felt the prayers and support from all of my family and friends back home showering over us that morning.  It's hard to describe how much power a little text can pack.  The encouraging messages on the way maintained my stamina many times!


We checked in at the concierge desk where we met the lovely Ms. Janie.  Her smiles and trusted information quickly became important parts of our days.  My schedule began with a spirometry (lung function test) that didn't go so well.  Spiros have always been very frustrating for me because the nurse usually seems to believe that I'm not trying my best.  Anyone who knows me, knows that question is an immediate blow to me personally.  I was very familiar with this test and knew I was here to get help.  I couldn't get down on myself this early!


My name was called by Kaci Morgan, Dr. Olson's nurse.  The next ninety minutes are a bit of a blur.  I clearly recall feeling at peace when I was with Kaci and Dr. Olson.  They both had such a comforting personna.  They were genuine, likable, and impressively intelligent.  Dr. Olson talked in depth about my history and already had a basic plan for the week.  She explained that as she reviewed results daily, my schedule could change to follow the findings.  I remember that she was a bit surprised at how I coped with my illness.  Even on that first meeting she impressed to me that I was functioning beyond my stats.  I had been living in distress for so long that it had become normal to me.  That was about to change.


Skin allergy testing was next on the list.  They tested for 100 allergens.  The timer went off and the tech walked back into the room to check my back.  She just said, "Oh my goodness!  I have to go get someone."  Seriously!  I was baffled?  I wasn't itching at all.  What was going on?  She returned with someone else who said, "What?!"  I asked what was wrong.  At the same time they both said that I had not responded to ANYTHING except the tester.  That meant I didn't have any allergies at all.  Neither of them had ever seen a completely negative test before!  I thought that was pretty funny!


The next tests were all heart related.  Mom and I were confused at first, but we knew it was all in the plan.  A very sweet lady named Lynn did an ECG, a routine ECHO, and an ECHO with agitated saline.  I left 100 tiny needles to have my first IV of the week. :(  IVs and my body just don't get along.  Richard, the nurse, finally found a site for the IV to start the ECHO with agitated saline (also called a bubble test).  They inject bubbles through the bloodstream to find leakages in the heart.  Now I know, that Dr. Olson's first indicator of my congenital heart problem was during a test at 4:00 on Monday.  I had no idea at the time.  They removed the IV and sent me on my way.


The final test of the day involved a dreaded blood gas.  It was up on the third floor of the main building.  It soon became my least favorite place in National Jewish.  I have to admit, I was wearing down a bit.  I had been through the sleep study that night, this pretty intense first day, and now I was in a tiny room where a nice lady named Brenda was trying to dig a needle down into my wrist to get blood from my artery.  On the sixth try she was able to get the blood she needed.  I completed the six-minute walk test and she told me I had done a great job.


Back at the smelly house I was greeted by uplifting messages on facebook, sweet texts, and phone calls with Dad and friends.  It was a good first day.

All for Good

Putting this experience in writing now is very difficult for me, but it's something that I want and need to do for myself.  It's a time I need to be able to look back on and remember the details.  Before I continue, I want to clarify where my head was ten months ago in the midst of everything. 


There was no doubt in my being that this journey was lined out by God for my good and for His plan.  Dr. Woody had said, "It doesn't have to be this way."  Barb had said, "We'll do so much more."  I was in Denver for medical treatment ~ not a typical thing I would do.  This was big - this was different.  I believed, but it was in such a deep and certain way that it's hard to explain.  At the time I was very rigid and as cautious as possible with my emotions.  I knew things were the way they were supposed to be.  I couldn't deal with everything that was frustrating and seemingly unforgiveable about lost time being sick.  To me, that had to have been part of the plan too.  You know, part of the journey.  Maybe someone's life was changed along the path because of my health.  I knew I couldn't handle the burden of that anger.  I also realized how hard the situation was on Mom.  Imagine watching someone you love going through all that & she couldn't do a thing ~ I had to be strong for her.  It hurt me so much that I'd put her (& all my family and friends) through so much worry and heartache for so long.  I believe all this helped me to get through each tough minute just thinking about the ultimate  goal...it was all for good.


Ten months later, I can see the bigger picture.  So as I record the memory, I want it to be true.  That first week at National Jewish was wonderful and life changing, but it was also horrible and tough and unbelievably scary.  As you will see, God was working miracles every step of the way.  I was doing what I could to understand and remember that it was All For Good.

The Sleep Study

Sunday Night, April 11, 2010

 I grabbed an overnight bag and a favorite pillow as ordered in my directions, left Mom in the barred up house, and headed toward my first experience at National Jewish.  The drive there was pretty easy because we had already scoped things out after dinner.  Pulling into the empty parking lot was rather unsettling as opposed to the uplifting feeling you would expect with the same discovery at any other time. J

I walked inside the first set of double doors and was immediately overtaken by the aroma-induced memory of the Rose Petal Place scented character toys that I had and adored as a child!  What a comforting, yet random greeting!  From there I proceeded onto the elevators to the third floor and wound through the halls until I found three other people with pillows and overnight bags.  I assumed I was in the right place…

We chatted politely for a while about travels and hometowns until we were finally called to our resting places.  I was beyond nervous.  I was a wreck.  The idea of someone watching me sleep was just dreadful to me.  I couldn’t have asked for a better nurse/technician though.  Greta loved her job and was truly there to help improve people’s lives.  She was so caring, sincere, light-hearted and thorough all in one!  I was still a mess – but she was comforting. J 

Long story short, I had been on so many strong asthma meds and steroids for so long that sleep was simply not part of my life anymore.  When Greta told me to lie on my back and go to sleep like “normal”, I did just that...ha ha.  I got in the bed and stared at the ceiling for hours!!!  Of course it was even worse because I was there & nervous, but that was pretty “normal” for me at the time.  I believe I did sleep an hour and a half or so before the 8 hour study was over.  Greta said the results would be in my report by the end of the week.  Something to look forward to...oh my!

At six o’clock I hurried home to shower and get Mom so we could make it back to National Jewish for my first official day of testing which was supposed to begin at  7:30!

VRBO ~ Denver

April 11, 2010


So I can't share this story without talking about Norm's house in Denver!  What an experience!  We all know things aren't always as they seem in pictures and that was so true with Norm's house...


We pulled into the driveway at about 4 p.m., Sunday afternoon.  We had driven from Lexington, Kentucky to Denver, Colorado in a weekend and I was certainly ready for my picturesque vacation rental.  The first things that caught my eyes were the bars on the windows..very nice!  As we pulled even closer, we noticed a couple of bullet holes in the front windows!  I suppose the bars didn't stop the bullets! :)  Add to this first impression the fact that I had to be at National Jewish for a sleep study that first night and Mom would be staying in the vacation rental alone...


Inside, things weren't horrid, but not fabulous either!  The smell was quite unbearable.  We immediately made a trip to the nearest Wal-Mart for air freshener and Clorox wipes!  All in all, it ended up being our home away from home for the week.  It was without a doubt a house we will never forget!!