An Odd Check-up

Today was my check-up appointment with Dr. Caudill. I was glad it was scheduled because I haven't been feeling well. My sinuses have been bothering me and my ears have been hurting off and on. Dr. Caudill seemed very different though. It was as if he wasn't interested in treating me. He just recommended that I start one of the z-paks he had previously prescribed if I felt like I needed it. He didn't even look in my ears. I was out the door almost immediately.

I'm not sure what was going on. Maybe he was preoccupied. I did decide to go ahead and start the antibiotic because I was showing signs of infection and wanted to be well before school begins again on Monday.

By the way, happy end of 2010!!!  May health, strength, and happiness fill 2011!  :)

Voice Therapy

One of things Dr. Olson had strongly recommended was therapy for my vocal cord dysfunction. There was definite improvement since she first diagnosed it in April, but she said it is still cutting off my airway too often. I need more help to get it under control. Dr. Caudill referred me to the voice therapy clinic at UK.

Today was my first appointment. I met with Dr. Rita Patel. She talked with me for a short while about my history and what had been done at National Jewish. She did a laryngoscopy to prove the dysfunction. Afterwards, she reviewed the results with me. The visit was kind of awkward. I felt quite uncomfortable there. I wasn't feeling well, so maybe that was the reason, but something just wasn't right. This was nothing like my visits for VCD with the therapists at National Jewish. She wants to see me again in two weeks, so surely it will seem better then.

you need glasses my dear

It has been clear (ha ha) that my vision has been getting worse. Mom used her magic to get me an appointment with Dr. Talley before I had to head back to Lexington for more appointments.

He examined my eyes and compared the results to those from June. The cataracts are worse and have caused me to be near-sighted now. He said this is common for cataracts. He had expected the deterioration to stop because of the heart surgery and stopping the steroids. Unfortunately, upon further digging into my medical history he noted that I was on such high doses of steroids for so many years, he now expects the deterioration to continue for a while before it slows.

I was completely bummed about having to buy ~ and ~ wear glasses. :(  He said they'll help most of the problems with my vision, but won't correct the blurry patches caused by the cataracts. Those will only be corrected with surgery. He said I should be eligible for surgery soon if the deterioration continues at this rate. sigh...

The Reality Check?

I woke to a rush of emotions and a flood of thoughts about what had happened in Denver. I headed to Dr. Caudill's office feeling hopeful about all that Dr. Olson had said.

A student met with me first and said that Dr. Olson had called Wednesday evening and spoken with Dr. Caudill for over an hour. He even had more than a page of notes from the conversation. I felt good about that. Things would be consistent.

The doctor came in and the vibe wasn't quite the same as it had been even a week earlier when I had been there. Some of things that Dr. Olson had made seem crucial, he seemed to be blowing off. She was insistent on my having a pulmonologist and when I asked him about referring me he said well you just saw her, so we can get that into the works soon. ??? huh??? Well, okay, I guess he knows what he's talking about. He did just talk with her last night, right? He also didn't examine me. I was actually there because I was sick and he didn't listen to my lungs or anything.

I left a little perplexed. He seemed on board...yet he didn't. Maybe this was just a reality check. Maybe I was over analyzing things because less than 24 hours ago I was with the superstar of all doctors and now I'm just with a good doctor. Could that be the explanation? It has to be it. Surely he isn't really blowing me off - or blowing off the things she's suggested after he promised to work with her...

I don't know, I hope I'm just tired and sick and over-thinking things. Dr. Olson is right, things are ready to turn around.

Day Three ~ I'm not even supposed to be here

We left NJ Tuesday afternoon and decided to try out the Cherry Creek shopping area. We were both excited about touring the pretty shops at Christmas time. As the day went on, my slight stuffiness/wheezing seemed to worsen. I could tell I was getting sick. It hit pretty hard that evening and I woke with a fever during the night. My peak flows plummeted and I felt terrible. What bad timing.

It was pretty hard to hide the next morning. We had to stop by National Jewish to drop off something on the way to the airport so Debbie insisted that we just ask to see Kaci and let them know how I feel. I was mortified. I wasn't even scheduled to be there today - I couldn't bother them. Dr. Olson does bronchoscopies and big procedures on Wednesdays I knew she'd be busy. She didn't have time for me to bother her. I refused. I would be just fine. I could handle this.

Well, Debbie doesn't play by my rules, while I was turning in my labwork, she told Janie the concierge that we needed help. By the time I was back, I was being hussled to a room and Dr. Olson's footsteps were clicking down the hall. My heart was racing. My eyes were tearing. I HATE bothering people. She walked into the room, "Toni, what happened?" she said in the calmest most comforting voice known to mankind. "This is not okay! You need help. You can't get on a plane like this. I'm going to help you." That was followed by the fastest series of the most in your face, I'm gonna make you better right now treatment I've ever had in an office.

She came back to check in on me and gave me a huge speech. She told me that when I came to her in April I was one of her sickest patients and I didn't even know it. I was okay with things just coping and had actually learned to cope too well. I have been through some of the toughest, most painful tests and surgeries and taken it all. I am an unbelievably strong person and I deserve better. She's not going to stop until it happens. She was certain that if I could get a doctor on my side and everyone on the same page that things would turn around for me. If they don't she had some other ideas and could get me back out to Denver in April. For now though, she was going to call Dr. Caudill and talk to him and wanted me to see him Thursday morning if she could get me well enough to fly.

Wow - what a lot to soak in. I was barely at her cut off in time to leave for the airport so she relented to let me go. She made me promise not to board if I got worse before take off. I have to admit, I did get worse again, but of course I wasn't about to stay behind and go to the ER. I'm sure Debbie was stressed a bit by me, but I knew I would make it. Bruce picked us up at the Bluegrass airport at midnight and I went straight to bed with a thousand thoughts swirling in my head.

Day Two ~ On the right track

Dr. Olson reviewed the good news from the pulmonary tests and pointed out how much stronger my basic stats are now. We discussed the bumpy Fall I've had and decided it was mostly due to lack of medical care. With a new doctor now, hopefully that would change. She took all of his information and said she would contact him to get him up to date with everything.

When she examined me, she noted I was a bit stuffy and wheezy, but nothing significant. We were all pleased with the visit and left with a solid plan.

Day One ~ An Emotion Overload

Wow - talk about memories being awakened by environment! My first appointment was on the stinkin' dreaded third floor. Probably not the best way for Debbie to have to start out at National Jewish (haha). We walked through the elevator doors, I checked in and we sat down. I was there for 30 seconds and suddenly overwhelmed with memories and emotions. Tears started flowing uncontrollably. My hands were shaking and a hundred images were running through my head - the bike, the blood gases, the walk, the box, the sighs, the faces, everything. I couldn't do this again. What was I thinking? Debbie was great - she reminded me that this time would be different.

A kind voice called my name - we went to the box. She chatted with me about holiday events in downtown Denver as we glided through each test. I was completing the tests without frustrating her - what a relief! It sounds ridiculous, but it was huge. There was even noticeable improvement in my VCD on the spirometry graphs. I was delighted.

Feeling a tad more confident, I headed back to the waiting room. Debbie was jubilant! Another kind voice called my name - it was Tom. He took me to the room to draw a blood gas. Before he started though, he talked to me. He warmed my wrist and said he read my file and knows what happened before. He was beyond thoughtful. He was outstanding. He got it on the second try. It was 92% but increased when we walked. That was good news. We were 2 for 2 so far.

We headed over for several scans in radiology and another six minute walk test on the rehab floor. It all went smoothly. The final test was an ECHO with agitated saline (bubble test) in cardiology. I was excited and nervous about this one. It would show if the hole was fixed or not. I'm certainly no doctor or technician and this whole world of cardiology is completely new to me. I have learned how to watch the bubbles in the heart though. I know if they stay on one side or shoot through to the other. I was so anxious as he pumped the first burst of bubbles through. It was perfectly clear. I was so excited. I asked the technician instantly - it looks good - right??? Of course he couldn't answer me, but I knew it did. I was beaming inside. He told the nurse to give another burst. This time it was different, bubbles went everywhere. I was crushed. I knew something was still wrong. The hole must still be there. I didn't say anything. I just waited and watched. I could see it in the technicians eyes too.

We left National Jewish and Denver as we knew it for a wild road adventure to Highlands Ranch. I had an appointment at the National Jewish Community Clinic with Dr. Fenster. We felt like we were taking a road trip and should have stopped for supplies! It was certainly a nice little escape for my mind to shift focus before the visit.

When we finally found the place, Dr. Fenster revealed that there is still a hole in my heart. The news broke my heart. In my mind, after all that had happened, it was supposed to be fixed. It was supposed to be over. A few tears trickled down my cheeks. I think his heart broke a little too. He immediately started consoling me and told me that it wasn't a big deal. He said the surgery was so huge and so complex that some imperfection was expected. This was something minimal. They could watch it and monitor it and with proper medical attention never do open heart surgery again. If it worsens it could be repaired through a heart cath. It's possible it could repair itself in time.

I could hear him and I understood him. On the surface I even accepted that it was minimal. On the inside though, I was crumbling. I was scared and frustrated and confused. I had to be strong though. I had to move forward.

As a great distraction, after dinner we took a side route home. We went sight seeing through downtown Denver to look at Christmas lights. This is one of the federal buildings. The entire city was an absolute winter wonderland. I was disappointed that I didn't have my camera with me to take better pictures.

The 2 Week Mark

It seems as though my body has a two week limit for wellness. Dr. Caudill is getting to know my case. He has most of my records from Dr. Greisner, Dr. Myers, and National Jewish now. He's decided to start seeing me every two weeks to try and stay on top of the infections before they get the best of me.

Somehow, sickness hit between appointments and got me down again. He took action quickly though. He ordered labs and a chest x-ray. I was very nervous about how he would deal with my lung function. I was so scared of going back on steroids. He had a confident plan though, he said as long as prednisone was prescribed in short bursts and stopped, I would not suffer the ill effects. Sadly though, I was quite sick and did miss nearly a week of school with this round.

Hopefully we would prevent the next one. He wanted to see me again before I was scheduled to leave for Denver.

NO MORE STEROIDS ~ YIPPEE

The day has finally come!!  Today was my follow-up appointment with Dr. Caudill.  He checked my cortisol level and found that my adrenal glands are finally awake!  Yippee!  I am finally, finally done with steroids!  After more than 12 long, terrible, side effect infested years - it's over! 

This milestone hits just 24 weeks after my heart surgery!  What a great day!  This is big, just really special and big for me!  :)

NO MORE STEROIDS :)

Just one of those days

So it just happened to be one of those rough days.  It was one of those days that I was having a tough time breathing.  I had had several breathing treatments that weren't really helping and neither were my inhalers.  During planning I had to meet with Leigh Ann to talk about my evaluation lesson.  It was impossible to hide my shortness of breath because I couldn't even speak in complete sentence.  She was very concerned and finally insisted that I go home and call the doctor.  The big problem with that was that I didn't know who to call.  I felt like Dr. Myers didn't care, Dr. Greisner didn't know what to do with me anymore, and I neither did Dr. Foxx. 

As I was leaving, Debbie met me in the parking lot.  She was very concerned and could tell that I was just done.  We tried to call a few of my doctors with no luck.  The receptionist at Dr. Thompson's office completely blew me off on the phone.  Finally, she called her brother-in-law, a doctor at UK.  He was able to work me in that afternoon.  Debbie offered to pick me up at my house in an hour.

Dr. Caudill listened to my history and promised enthusistically to work with my doctors from National Jewish to help me.  He said his specialty was coordinating multiple doctors for patients and keeping everything in order so that nothing contradicts.  He ordered a chest x-ray and labs that day and started antibiotics.  He seemed like a dream come true!  He even wanted to schedule a follow-up appointment to make sure the antibiotics had worked and I was feeling better!  I felt like a huge load had been lifted from my shoulders.  Now I could focus on feeling better and getting back to work!

Try, Try Again

After a little over a week back on a higher dose of steroids, I was back to myself!  I did wake up pretty sick on the 6th with a fever and congestion.  Luckily it was the first day of fall break.  I went to see Dr. Greisner.  He gave me an antibiotic and I kind of got the vibe that he didn't want to do more than that.  Anything that I asked about Medrol he deferred to Dr. Myers and wouldn't even discuss. 

I went on in for my scheduled labwork to check my cortisol level on October 7th.  I hadn't heard anything by the 12th so I called the office.  Finally, after not being able to get through on the phone, I decided to go over there.  Debbie drove me over and waited while I ran up. 

The nurse gave me a post-it note that said "Cortisol level still low but better. Go ahead and start taper again."  Call me crazy ~ I wanted off steroids more than anyone would ever understand, but just a week earlier, this same doctor told me I was near multiple organ failure!!  Now, with no check up or follow up scheduled, no plan of action, now, with a post-it he tells me to start the taper again!!!!  I felt sooooo alone!  I felt like no doctor was willing to treat me or take care of me.  Nobody wanted to deal with the complications so they just passed them off assuming I would explain it to the next doctor.  Oh I was getting so frustrated!  If only I lived closer to National Jewish!

Ultimately, my desire to be off steroids won over my fear of organ failure or lack of medical care.  :)  I began the taper and basically decided to just take care of myself until I found a doctor that would tell me what to do.

Something's not right...

September was simply a rough month. :(  I went back to the doctor on the 18th because I was still not getting better and was having some other problems due to the medicine.  This time I went to the Baptist Works Clinic because I couldn't get in at Dr. Foxx's office.  Again, I had to tell my entire fascintating history.  The doctor gave me more medicine and assured me that I'd be all better with a bit of rest.

Besides not being able to get well , I was also very emotional.  I was crying constantly.  I was not myself at all.  I didn't know what was going on or who to talk to.  I had heard about people have a tough time emotionally or a sort of depression after heart surgery, but I was nearly four months out???  I was embarrassed, confused, and very frustrated.  I felt like everything about me was completely falling apart.  Things were not good, and it was getting harder to pretend like they were.

I was at the end of my rope and had to do something.  Whatever was wrong was only getting worse.  Stacey talked me into calling the therapists we have available for us through work.  I met with Jan on Wednesday, September 29th at 5:00 p.m.  I shared my story and my concern for what was going on.  She was intrigued by what I had been through.  She said she was impressed with my strength and I was just fine.  I should consider writing my feeling down from time to time and we could make another appointment for 3-4 weeks that I could later cancel if I felt better. 

I left that office feeling worse than when I had arrived.  I felt like I was falling apart when I arrived, but I left feeling like I had completely failed therapy.  How could she think I was okay??  I was so far from okay!  It was taking everything in me to hold myself together to focus on anything anymore.  I hurt all over.  Something was not right and I didn't know what to do.  I was devastated.

Thursday, I decided to email Cathy Christopher for advice.  She replied almost immediately telling me to contact my doctor or get to the ER because it sounded to her like symptoms of adrenal shock or adrenal crisis from the medrol taper.  I was stunned!  These were not symptoms Dr. Myers had said to look for!  I called Dr. Greisner because Dr. Myers' office was already closed.  He called Dr. Myers and they had me immediately take a dose of medrol.  I went for labwork the next morning which revealed I was near kidney failure and all kinds of other terrible things like liver and even heart failure!  They put me back on medrol and I was back to my stable self :) again in just a few days!!!  It's just unreal what the body learns to handle and how it handles it!

Needless to say, my dream of getting off steroids by the beginning of October was squashed with this little crisis.  I was pretty heartbroken by the whole thing, but what could I do.  I had to believe that one day soon it would happen.  I would be able to stop taking steroids.  After all of this, it had to be possible.

The New Sick?

I had been feeling worse each day for about a week until it hit full force on Wednesday evening.  It happened.  I was sick.  The big question was could this be a new sick?  Would I heal faster?  Would weaker antibiotics work on me now?  I already had an appointment with Dr. Foxx about my eyes on Thursday.  I was still having problems with periods of blurry vision.  Instead of making an appointment with Dr. Greisner too, I just decided to let Dr. Foxx take care of my sickness too. When I arrived, Dr. Foxx wasn't there and they placed me with one of his partners, Dr. Hayslip.  I was okay with that, but had to explain my entire history to her before should could treat me.

As far as my eyes, she ordered an MRI and diagnosed me with ocular migraines.  She prescribed Topamax on an increasing taper.  She said it should stop or at least significantly reduce the blurry vision.

For the sickness, she said I had bronchitis and a sinus infection.  She felt like a weaker antibiotic would do the trick and prescribed Bactrim.  She said I should feel much better by Friday afternoon.  If not, I should return to the office Saturday morning.

Saturday morning I woke with a fever and my symptoms were worse.  It was as if I had not been taking any medicine at all.  I called the office and went back in as Dr. Hayslip had suggested.  Of course, it was another different doctor who I had to explain my entire history to all over again.  He switched my antibiotic and increased my steroids.  I was hoping this would do the trick.

Time to taper the 'roids!

Oh what an exciting day!!  Dr. Greisner had made an appointment for me with an endocrinologist to help get me off steroids!  The day has finally come! Things have still been good.  I've just started to feel a bit like I might be getting sick.  I'm hoping things are different now though - that my body is different and so I'm thinking positive!  (or in denial)  Either way, things have been so good, I want to believe that my new improved body is a better fighter than my old wimpy one!  Other quick news - I am no longer taking Pulmicort or Vospire for asthma!  Yay!

My appointment with Dr. Myers was more like a meeting.  Dr. Greisner had already sent him tons of infomation about me.  We went into his office instead of an exam room.  He explained the danger of tapering or stopping steroids especially after long term use.  He wanted me to know what to look for so I could call the office if I had any of the symptoms.  They would immediately order bloodwork to check my corisol levels and adjust the taper accordingly. 

I was intrigued to learn that for a year after stopping the medrol, I would have to have what was called a stress dose of steroids in any type of emergency situation.  The body is such a peculiar thing!

His plan was to taper the medrol so that I would be completely off by October 8th!  I was elated!  I couldn't believe it could happen so quickly!  Dr. Myers was so positive about everything and so excited about my story.  He said he just knew this would work out for me! 

How's my heart, doc?

Today was my much anticipated appointment with Dr. Bricker to find out how my heart has been healing.  I rushed out of school at dismissal to make to the Gill Institute at UK hospital on time.  I had to park at the hospital garage and walk over which was quite a feat!!  Brandi, the nurse checked me in and rushed me over to the hospital for and ECHO.  I was there for quite a while because they had some trouble getting the pictures they wanted.  It was my first ECHO since being in Denver.  Everything was fine but it did bring back a rush of memories.  It was pretty painful when he was pressing over my sternum trying to get certain angles for the pictures.  He wouldn't tell me if anything he was seeing was good, bad, or indifferent of course. 

When they finished, I rushed back to the Gill where Brandi and Dr. Bricker were the only two souls around.  Everyone else was already gone for the weekend.  Dr. Bricker talked with me for a long time about how impressed he was with Dr. Campbell's work on my heart and the future.  He said because of my condition, I could need a pacemaker years down the road, but not to worry now.  Everything was looking good for now.  It seemed to be healing nicely.  I could begin increasing the amounts that I am lifting and working on strength training.  I was even allowed to start mowing again!!! I was very excited!  This was good news!

The Dream is Real!!!!

Life is good! Life is so so good! I've been back at work for two weeks now! I can truly say I am breathing! I am breathing better than I have ever been able to breathe for as long as I can remember! I didn't have any idea it was possible to feel this good, this alive! I had no idea I felt that bad before honestly. Now I know how bad things were. Gosh, I don't even want to think about that now because things are so so good! I can breathe! :)

Today is Mom's birthday and it sounds quirky, but part of my gift to her (& the part that meant the most) was telling her that I put my nebulizer away! I've had my nebulizer (breathing machine) plugged in beside my bed for twelve years.  In those twelve years, I could probably count on my two hands the number of nights I haven't had to wake up and use it multiple times.  Today, I unplugged it and put it in the closet because I don't need it anymore!!!!!!!!  What a miracle!

I am still on medrol (steroids) and all of my other asthma medicines.  Dr. Greisner is talking about stopping them gradually very soon though!  In fact, I have an appointment with an endocrinologist next week to discuss getting of steroids.  It's apparently a very serious process since I've been on such a high dosage for so many years.  The good news is that it is all actually becoming a reality! 

As far as the heart surgery, I continue to get stronger daily.  The past week and a half has truly been fantastic.  I have had the least amount of pain and have been able to do more.  I also have an appointment with Dr. Bricker this week.  I'm very excited to find out how my heart is healing from the surgery. 

The dream is finally real!  I feel great!  I can breathe! This is good!

Cataracts, really?

Since I was at Mom and Dad's recovering, Mom got me an appointment with her eye doctor, Dr. Talley to see what was going on with my eyes.  I have patchy blurry vision which is much worse at night.

After a long examination Dr. Talley sat down to talk with me.  He explained that oddly enough, I could still achieve 20/20 vision with effort but the bad news was that I had cataracts in both eyes.  He seemed hopeful that because of the surgery and the corrected blood flow, they shouldn't get any worse.  He said they were caused by long term high doses of steroids.  When and if they do worsen, I can have surgery to correct them.  For now, I'll just have to deal with the patchy blurry vision. 

He explained that the "episodes" of blurriness are a separate problem.  He suggested a visit to my primary care doctor to discuss that concern.

I have to admit, I was pretty bummed that afternoon about the diagnosis.  I had learned that one of the side effects of steroids was glaucoma or cataracts.  I guess I was hoping that there was at least a couple of side effect from the steroids I had avoided.  At least it is better to have cataracts that glaucoma I suppose, but it is still a bit of tough blow right now.  I just need to take a breath a let this information soak in.

Welcome to UK

This was the big day to meet my new adult congenital heart specialist at U.K.  I felt kind of weird going to the appointment because it was in the pediatric department.  Dr. Bricker is a pediatric cardiologist who has an interest in adult congenital cardiology.  He and one other doctor work together to run an adult congenital clinic once each month at the Gill Heart building connected to the hospital.  It is such a small area of cardiology that it is hard to find a doctor that practices adult congenital defects full time.  Dr. Bricker was so intrigued by my case that he didn't want to wait until the next clinic to meet me.  That's why he was seeing me in the peds unit so soon after my return from Colorado.  It all worked out nicely for all of us!

Overall the meeting went really well.  He spent most of the time just talking to us and getting to know me and getting to know more about my history and my case.  He talked to Mom a lot and comforted her about the fact that the congenital defects were not caused by anything she did or didn't do during pregnancy.  She was relieved!  He gave me a card with his home and cell number in case anything happened at all.  He said I would need to call him anytime I was sent to the ER for now on because doctors would be so fascinated by my story that it could hinder decisions about the immediate problem. 

He clearly defined my restrictions for recovery which were very limiting.  One thing that was repeated by nearly every doctor was that my chest/sternum would likely take longer to heal because of the amount of time and dosage of steroids I had been taking.  He gave me a general timeline saying that by August I would feel stronger but still get winded when I went back to work.  November would be wonderful - I would feel stronger and better than ever.  And I would be completely recovered from the surgery in one year.  I was prepared to follow directions and let my body do what it needed to do to get well.  I was ready for the good things that were coming my way!

After the appointment, we stopped by the house to pick up Jackson and made the long drive to Mom and Dad's house.  It was time to recover :)

Home Sweet Home...for a little while

I woke in my own bed which was a wonderful thing, but I was in a lot of pain and needed help getting up.  It would just take practice to learn how to get in and out of my bed on my own without hurting my chest.  Dad had to leave early to get back to work.  He had used all his vacation days and didn't have any more time to spare.  It still makes me sick to think that I caused him to use all his days for the year in May.  He never thought twice about it though.  Mom had already sacrificed so much too and needed to get back home.  She was also out of her medicine.  They decided that I wasn't strong enough to make another trip so soon after the flight though.  A plan was put into place.  Mom stayed through the week and went home that weekend to take care of things.  Debbie, Melodie, and Stacey took turns staying with me until she returned on Monday.  We would stop by the school Tuesday to say bye to my class, go to my appointment with the congenital heart doctor, then head back to Mom & Dad's house for a few weeks of recovery.

Cathy Christopher was right.  It was hard.  I couldn't do anything on my own but I was already exhausted from feeling like a burden.  I wanted to be in my own home but I wanted to be with my family.  I wanted to be with my friends who I missed dearly.  I was sick of people griping at me and telling me that I couldn't do things.  It was wonderful to see people those first few days after getting back and it was also hard.  EVERY person that saw me exclaimed about how good I looked.  I know that's wonderful but it's also very hard to handle too.  After the surgery, since my body was actually getting oxygenated blood, my coloring truly went from a grayish tint to a healthy pinky-peach~~almost overnight!  Each visitor meant so much to me because they took the time out of their lives to come and see me!  That's huge to me especially since I couldn't really go anywhere and had been missing them all so much!  Anyhow, as I said, Cathy was right, it was hard, but it was worth it!  I'm so glad I had that week at my home sweet home before we headed west for recovery.

The Friendly Skies :(

I had one last follow up appointment at Dr. Campbell's office with Dr. Babu on Monday morning.  Everything was as expected so I would be able to fly.  They explained that it was safe for me to fly but not advised so soon after surgery.  To continue with recovery though, I needed to be at home and needed to fly to get home.  That's basically why I was cleared to fly. 

Stacey hooked Mom up with knowledge of airport wheelchair transport and got us bulkhead seats on the planes.  As soon as our bags were checked I was tossed in a wheelchair and we were flying through the airport.  All I could do was squeeze that stuffed dog as tightly as possible against my throbbing chest as we raced along.  Periodically he would lean down and mutter, "you k?" to which I would respond with a positive nod.  That guy was serious about his job and didn't waste any time!  We didn't wait in line anywhere, not even at security ~ he just pushed us right on through!  All three of us were very relieved to see our gate.  We were able to take a little break before the plane began loading.

Even though Mom was pushing oxycontin and percocet down me like tic tacs the plane ride was still pretty rough.  During take-off and landing it truly felt like the force was ripping my heart from my chest.  By the time we loaded the second flight to go from Atlanta to Lexington, I was so exhausted that I couldn't grip the stuffed dog anymore.  I just wanted to be done, to be home. 

Melodie picked us up from the airport in Lexington.  It was so good to see her!  Jackson was at the house waiting for us.  He was so calm and careful with me.  When I went to bed, I was laying on my side with my hands clasped together out from my chest.  Jackson gently crawled up on the bed and held my hands between his two paws and went to sleep.  I think my pup missed me. :)

Dr. Kaye

Dr. Kaye was the adult congenital heart specialist that was pulled on board for me.  I know I've said it so many times that it's starting to seem untrue, but he was wonderful!  It just proves that God did masterfully put everything into place because when and where would it ever happen that one person could ever have so many top doctors that truly care!?!? 

He visited me the whole time I was in the hospital.  He explained things to us and took time to talk with us each time he stopped by.  I was particularly impressed with his passion for finding me an adult congenital specialist at home.  He said it was a very small field of doctors but that he was determined to find one for me that he approved.  If not I'd just have to be coming back to Denver to see him. :)  As promised though, he did find a doctor for me, and had an appointment for me on June 2nd which was remarkably fast in the medical world!  What a doctor!

The Pep Talk

So very early on Friday morning one of my many doctors had come into the room and told me I was going home!  I was excited and scared all at the same time.  A few hours later I called Mom and Dad and told them so they would know to come on over to the hospital that morning.  The next doctor that came in didn't say anything about it so I asked and he said, "Oh, we all looked at your numbers again this morning and had decided you're not ready to go home yet."  It turns out that my oxygen levels weren't steady enough and some other things they'd been checking like potassium and such. 

As you can expect, I was a bit crushed.  Probably more because I was extra sensitive than because I wasn't getting out of the hospital.  I started thinking about all things the different doctors had said in the past days and overthinking it all.  I felt like it meant that the surgery didn't work and my lungs were still going to be just as much of a problem.  I was afraid it was all for nothing.  By Saturday morning I was in a tailspin.  I needed someone to prove to me that my chest had been ripped open for a good reason and things were going to get better!  Almost right on cue, Cathy Christopher walked into the room!  She was so calming and comforting.  She knew so much about my case.  She explained how important the surgery was and how remarkable it was that I had lived 32 years with those rare defects.  She explained that I would not have been strong enough to continue much longer with my heart in that condition.  It had to be repaired.  That was exactly what I needed.  I needed someone who knew my situation to prove to me that I was going through all of this for a good reason.  She did just that.  She also talked to me about how hard it would be to go home.  She went into great detail about the impact going home would have on me, my family, and my friends and how it was going to be something I would need to be prepared for, but would still be very difficult.  I tried to just soak everything she said in and remember it.

Saturday afternoon they did release me from the hospital.  The car ride back to the hotel was scary for some reason.  I felt very out of control.  I had trouble keeping my balance with each curve or turn.  It was something else to learn to adjust to. (The doctor had told me that I would have to be a back seat passenger for eight weeks.  It would take that long for my sternum to heal, so until then there would be no driving or riding up front.)  It was good to be back at the hotel, our temporary home away from home.  It was a rough night, but we all made it through. ;)

Learning How to Adjust

The days after I was moved to the regular room were spent managing the pain and learning how to adjust to the changes.  Things like coughing, raising up, and getting out of bed were real challenges.  The nurses had suggested Mom and Dad get me something soft to "hug against my chest" while doing these painful things.  They found this stuffed pup in the gift shop!  It is absolutely adorable and worked perfectly.  It became my best friend when we were rushing through the airport! :)

I also learned that dilaudid was not my friend! They had put me on a pain pump when I was in ICU.  I quickly made the connection that my out of control itching was directly connected to pushing the button!  I simply stopped pushing and waiting for them to bring the doses of pain meds.  It was pretty funny the first night in the new room the nurses came in to help me get out of bed.  Before I could stop her, she pushed the button to be helpful.  Within minutes I was scratching madly.  By morning they had the dilaudid pain pump unhooked!

By Friday, I was walking the halls regularly and getting better at all the things I'd been working on with OT and PT.  The swelling in my arms was nearly gone.  The bruises were even healing quickly.  In fact, we began to notice that scars and bruises I'd had for months were suddenly healing!  Dr. Campbell said it was because my body was finally getting oxygenated blood!  How crazy is that?  My body had been doing without for so long and now everything is healing all at once!  This is a picture of my arms from the end of the week.  We were simply amazed at how much they had healed in such a short time.  Before the heart surgery, my entire arm would have stayed bruised for months! 

A New Room with a View

Late Wednesday I finally graduated to a regular room!  Let it be known that I still had the huge IV in my neck and the drainage bags hooked to my chest.  I was still losing blood, but it was apparently at a much more tolerable rate. :)  We entered the room to see a wall length window with a view of Pike's Peak in the distance!  Now if  you must be in a hospital after heart surgery, I recommend Denver just for the view!  Our pictures are terrible compared to the actual view.  Honestly, I could have been looking at anything ~ the window just brightened my day!



This was actually the window at the end of the hallway I walked down.



ICU Memories

When you think about all that the body goes through in a surgery like mine, it's pretty amazing to realize how relatively soon I was able to do certain things.  I, of course, was terribly frustrated with myself at the time for the things I couldn't do on my own, but looking back, I'm impressed!  As I mentioned on Tuesday, I was able to sit in a chair and stand.  I was on a liquid diet which was completely fine with me because I didn't want anything at all except water and ice.  That night, I had a pseudo sponge bath which was beyond humiliating to me. 

Wednesday morning the physical therapist came and we walked a short distance down the hallway.  It was like learning to walk all over again!  That afternoon they removed the pacer wires to my heart.  That wasn't a favorite experience for sure!  They also removed the catheter that afternoon.  I remember after going to the restroom by myself that first time I stood in front of the mirror to wash my hands and caught a glimpse of my chest & the incision in the mirror.  I know it may sound odd, but to that point I had not looked at it at all.  I had been so focused on just dealing with what I knew I could handle that I had not even thought about looking down.  It was like looking at someone else in the mirror.  I looked mangled.  My entire left forearm was still swollen and a solid bruise.  My right arm was a near match.  My wrists were covered with holes likely from blood gases.  This is what Mom and Dad were looking at each time they saw me - it was horrible! 

Open Heart Surgery

We woke to a beautiful Denver day.  I felt anxious and calm all at the same time.  Waiting was impossible!  I was supposed to be at the hospital at noon and the surgery was scheduled to begin at 2:00 p.m.  Our phones were all ringing with prayers and well wishes from friends and family.  Dr. Fenster even called me to let me know Dr. Campbell was a stellar surgeon and I couldn't be in better hands.  He said he was thinking of me and would be checking in with Dr. Campbell after the surgery to hear the good news. 

The time finally came to head to the hospital.  We checked in and I signed all the paperwork.  They called me back alone first.  I changed into a gown and got into the bed.  They brought my parents back.  The nurse started working on my IV and was finally successful in my left hand.  The anethesiologist talked with us for a while, followed by a few medical students and fellows who drew a big blue X on my chest.  Finally Dr. Campbell came in at 1:45 to say hi and see if we had any last minute questions.  I hugged Mom and Dad as they rolled me down the hall.  In the OR I remember several people rushing around me and some were introducing themselves.  They were adjusting the table and everything went black...

My next memory is waking up and seeing Mom and Dad in the doorway of the room.  They looked worried.  I could tell by the way people were rushing around the room that things weren't all rosy.  I wanted Mom and Dad to talk to me but I wasn't ready to know about the surgery.  Mom started to tell me about it and I shook my head and closed my eyes.  I know now that must have been very frustrating to her, but I just wasn't ready to hear what had happened.  I guess they made my parents leave after I was stable because I didn't see them again until morning.  The next thing I remember is someone shouting, "Toni, Toni you have to breathe! Breathe Toni!"  They had been trying to take me off the ventilator for several hours, but I wasn't breathing on my own.  I guess they thought a firm pep talk would help! :)  I remember trying, but had no power over my lungs at the time.  I just couldn't breathe on my own yet.  They were finally able to take me off sometime later Tuesday morning.

That's when Mom and Dad were back and I was a bit more lucid.  The nurse came in and said I needed another transfusion.  That terrified me!  I looked at him, then to Mom and Dad in confusion.  Dad said there were some complications during my surgery.  Rather than lasting three hours it took almost seven hours.  It just turned out to be a very complicated surgery.  One major problem was that I lost a lot of blood and continued to lose it even after surgery.  I had to have several transfusions totaling eight pints in the end.  That news hit me pretty hard for some reason.

I quickly realized that I wasn't following the plan outlined by Cathy Christopher for the surgery timeline.  I did get to sit up on Tuesday which seemed pretty amazing.  Looking back, I think my body was in a survival mode physically and mentally.  I was very focused on what I needed to focus on for that moment to get by.

The Plan

Friday morning I was a little stiff from the heart cath, but it was nothing like I had expected.  That was a good thing!  I was supposed to have an appointment with Dr. Olson, but now I had to have a neck and chest CT instead. 


That afternoon I received a phone call from Dr. David Campbell, a cardiothoracic surgeon.  He said, "Hey Toni, care if I crack your chest open Monday around 2?"  I mean seriously!!  What a phone call??  I told him that would work for me and he let me know that he was really looking forward to meeting me.  He had been talking with Dr. Carroll, Dr. Fenster, and even Dr. Olson and was very intrigued by my case.  He said Cathy, my case manager, would call later with instructions and details about the surgery.


As expected, my phone rang again and it was the very kind voice of a lady named Cathy Christopher.  She explained in detail what to expect from my open heart surgery.  She told me what I had to do to prepare including shower with special soap prior to arriving to the hospital.  It was a lot to take in.  This was the play by play...

• Pre-op ~ they would wheel me to the OR & put me to sleep
• surgery should last 3 hours
• move to ICU
• wake with big IV in my neck
• remove the neck IV & ventilator when I wake up
• sit up Tuesday morning & move to regular floor ~ walking
• released from hospital by Wednesday or Thursday

Cathy stressed that the hardest part would be psychological.  She was concerned about the drastic change in my medical diagnoses in such a short period of time.  Two days was not a lot of time to accept and deal with having to have urgent open heart surgery ~ not to mention it was happening 2000 miles from the comforts of home.  She gave me her cell number and told me to call anytime over the weekend with questions.  Dr. Olson also called to check in on me.  She wanted to make sure everything was settled with concerns about the aspirin and the pneumonia.  She also wanted to know the surgery time so she could be thinking about me.  :)


I guess I took to heart what Cathy said and it scared me.  I realized I wouldn't get to finish the school year with my students.  I wouldn't get to go back to work at all.  Someone else would have to do the job I am supposed to do.  I probably wouldn't get to plant a garden this year.  I wouldn't be able to mow my yard for a while.  Dad was going to miss another week of work because of me.  Mom and Dad were both going to be in Denver longer which they were
not enjoying & it was so expensive for them.  These thoughts were flooding in so fast that I was losing control.  I couldn't handle that right now.  There was nothing I could do about any of it.  I just couldn't think about it anymore.  I had to focus on the good.  I had to focus on the possibility that in six months I could be able to run at the park with Jackson.  I had to focus on the possibility that this was the big life changing answer I had been waiting for all these years.  I had to focus on the fact that I know this is part of God's good plan for me and no matter how scared I am He has is all under control.

Perfect timing! Melodie sent some pics of Jackson. :)

It was just what I needed!

"Oh My Gosh That Hole is Huge!"

Even though I was desensitized and ready, I was still nervous (whether I wanted anyone to know it or not)!  How could I not be?  I was about to undergo a procedure (that they were calling a surgery) on my heart which wasn't even a medical concern in my life one month ago!  Yeah, I was nervous.  I didn't like the idea of a big tube being stuck in through the artery in my groin and threaded up through my body to my heart.  I didn't like the idea of being strong on the outside while I was falling apart on the inside and completely freaking out!  I knew God was in control and still totally believed it was all for good.  I was just scared about what was happening in the right now.  Once again though, God did give me the strength to pull it together. 


We went to the University of Colorado Hospital in Denver and checked in on the third floor at six o'clock in the morning.  It didn't take long for them to call me back to prep me for everything.  I dressed in their lovely hospital gown and waited for the Fellow to come and talk with us.  He discussed the timeline and procedures with me and my parents and wheeled me away. 


In the cath lab, there were four people with me. Mike, the nurse that stayed near my head most of the time and answered any questions I had along with his other duties.  Sarah, another nurse who stayed at the other end of the table and worked with monitors and other things.  The Fellow, (sadly I don't recall his name) who worked side by side with Dr. Carroll and of course, Dr. Carroll.  As Mike and Sarah prepped me for the procedure they were very talkative and friendly.  They did their best to make me as comfortable as possible.  Dr. Carroll came in and told Mike that he could not give me any sedative at all for the procedure.  Mike grabbed my hand and whispered, "It's okay, you're tough, you won't even need it.  I'll be right here the whole time."  I didn't know whether to be comforted or concerned.  My mind was just a whirlwind of thoughts and confusion.  For some reason, I focused in on my O2 sats on the only monitor I could really see and just fixated on that and my heart rate.  I was watching my stats go up and down as I listened to the doctors talk about things I didn't really understand. 


Suddenly, Dr. Carroll got very quiet, asked for more of something and then shouted, "Oh my gosh!  That hole is huge!  Look at that hole!"  I asked Mike if that was rare.  His eyes were very big as he nodded yes.  Minutes later, Dr. Carroll seemed frustrated as he was whispering something to the Fellow.  I heard him say, "This problem is much more significant than we expected."  I calmly called his name from the table, "Dr. Carroll, what do you mean, more significant?"  He took a deep breath, almost as if he'd forgotten I was awake, he walked closer to my head and said, "I can't repair the hole or the other defect through the cath, Toni.  You're going to have to have open heart surgery."  "When?"  I asked.  "Immediately, you can't get back on a plane.  These problems are too serious.  I know the best surgeon and I'll call him as soon as I get out of here."


I don't remember a lot more about what happened after that conversation.  Mom and Dad said he came out and talked with them very openly about his surprise and how uncommon the defects were.  He said he would have a surgeon named Dr. David Campbell call me personally to talk to me and schedule the surgery.  He was sure he would take the case because it was so intriguing.


We spent the rest of the afternoon at the hotel resting after the procedure.  Everything that I had felt before the cath was gone.  It's so hard to describe how I was feeling that afternoon.  It's almost like I was in shock ~ as if I wasn't feeling anything but "okayness". 

Desensitized and Ready

Just as Dr. Katial had explained, the second day of desensitization was much easier than the first.  My reactions, if any were much milder.  Most of the day was quite boring.  I worked on report cards on the laptop from my hospital bed and got plenty of doctor ordered rest.  I felt so bad for Mom and Dad.  I'm sure it was a miserable day for both of them.  I tried to get them to go sight seeing or at least go out for a nice lunch, but they wouldn't hear of it. 


Dr. Fenster came in for my appointment about mid-morning.  He spent time further explaining the information they had about my heart and why he thought the cath was so important.  He stressed that fact that at this point they all believed Dr. Carroll would be able to close the hole with a device and the other defect was so minor that it could be left alone.  The defects had been so hard to detect in all the scans and tests that they were really believing that they were going to be rather simple for Dr. Carroll to repair.  As soon as I was desensitized I would be ready to go!

Gotta Get Desensitized

I woke up pretty nervous.  A lot was on the line today and I wasn't feeling great.  I wasn't sure what kind of an impact that would have on the procedures they had scheduled for me.  I was also excited about Dad meeting everyone at National Jewish.  He would finally see how wonderful this place is in person. 


Upon arrival, instead of starting with my appointment with Dr. Olson which was on the schedule, they sent me straight to the MIDC (which is their version of ICU) to prep me for the aspirin desensitization.  They said all the doctors on my schedule would come to meet with me there instead.  I started with a spirometry which showed my lung function was below 40%.  Not the lowest I've ever been, but not high enough for Dr. Katial to be comfortable to go forward with desensitization.  Dr. Olson came over and they both examined me and ordered a chest x-ray & immediate meds/breathing treatments to improve my lung function.  The x-ray showed pneumonia.  I heard the two doctors discussing my treatment outside my room.  Dr. Olson convinced Dr. Katial to go forward with the procedure.  She was sure that I was strong enough to handle it even with the compromised lung function.  We just couldn't postpone the heart cath again and she knew the desensitization would take the full two days. 


Dr. Katial came in to talk with me and complete the consent form.  He told me how uncomfortable he was about moving forward with the procedure and asked me not to sign the consent.  I understood what was on the line in every way.  I completely trusted that the procedure was meant to happen and that any complications could be handled by Dr. Katial and his team at National Jewish.


They did move forward with the procedure.  The first day was pretty rocky.  I never had to be intubated, but I did react to the increased doses of aspirin.  Dr. Katial was like a nervous new parent.  He was in and out of the MIDC checking on me and his team constantly.  Dr. Olson also stopped in a few times.  She started me on strong antibiotics for the pneumonia and assured us that she would get me well enough for the heart docs to move forward with everything on Thursday.


Needless to say, even though I was in one room all day, I was completely exhausted by the end of it.  We left around four o'clock that afternoon with orders to return at eight the next morning to finish the procedure. 

Rollin' with the changes

The whole heart situation was still a little fuzzy at this point.  No one really knew how serious it was, but it seemed that they had a feeling it was a bigger deal than they were letting on.  Dad took off work and joined us on this trip.  The original plan was for us to fly to Denver on Sunday so I would be ready for the heart cath on Monday morning.  I would have appointments at National Jewish on Tuesday and Wednesday and fly back home on Thursday.  The plan was simple. 


Sunday evening I got a call that the plan had changed.  They decided I needed to go through aspirin desensitization before the heart cath could take place.  That way, if they needed to implant the device to close the hole in my heart they would be able to do it and put me on aspirin afterwards.  This meant we would be rolling with some changes.  Monday was now wide open and the cath was scheduled for Thursday. 


We planned a trip to the Denver Science Museum and did some other random things that Monday.  I talked with the airline and changed our flight to Saturday morning.  I could tell this trip was going to be different from our last one...

To Travel Well and To Be Well

I walked into Cheddar's where I was expecting to meet a couple of friends for dinner before my weekend departure to Denver.  I was surprised (and overtaken by emotion) to see a huge gathering of friends!  They were all there to cheer me on, encourage me, and send me off to get better in the hands of the best doctors around. 

You would think that was enough, but not for my dear friends.  I had asked Stacey if I could borrow her luggage for the trip.  Instead of borrowed luggage, everyone had chipped in and bought me brand new beautiful luggage of my very own!  Apparently this secret plan was in the works before I even asked to borrow the luggage! :)  Each suitcase was stuffed full of fun things for me to do when I returned from Denver well!  I can't even explain how it feels to have so many people supporting me with such belief and hope!

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!