Heading Home with a Plan

Deja-vu huh? Mom and I packed the suitcases and headed to NJ for a few tests and a final appointment with Dr. Olson. I was confident we would make this flight. Things were different this time though. I was feeling anxious about the decisions I still needed to make, the people I hoped to say good-bye to, and all the things I needed to accomplish in such a short amount of time. As usual though, no one needed to know how I was feeling. I could deal with that later. This was the time to focus and show that I was in the game.

After several days of IV meds in the hospital, my test results were much better than the pre-hospital ones. (Thank goodness!) My appointment with Dr. Olson was detailed and intense. She prescribed several new medications and modified the dosages on old ones. She provided me with a detailed plan to hopefully keep me on track for the two weeks I'll be out of her sight. The hardest news was that she banned me from going to the school. I had hoped to work a few days while being home. So much for my plans. :(  I guess that's another thing I'll deal with later.


For now, I'm going to focus my energy on heading home, getting stronger, spending time with friends and family, and taking care of the business of moving. This is going to be  s o m e  two weeks...


A man singing his heart out in the airport as I blog...



A Personal Visit

After a long day in the hospital of trying to breathe and dealing with a life changing move I heard a comforting voice at the door, "Hellllloooo?"

It was Dr. Olson. Mom had left over an hour earlier and I hadn't even noticed that my room had gotten so dark. I sat up and flipped on the light from my bed control as I welcomed her in. She pulled a chair up very close to my bed and asked how I was feeling. Her eyes were so sincere. I was at a loss for words. I felt myself fumbling to answer her, wanting to revert to my default "alright" setting but as I looked at her eyes I felt like I was made of glass. She could see right through me and already knew how I was feeling. She wasn't asking for small talk, she was asking because she wanted to hear me talk. At that moment I realized she had come to the hospital just for me. She made herself comfortable in the chair, but was still very attentive. She stayed for a long time asking me questions and explaining what she, Dr. Katial, and Dr. Maleki have been thinking and discussing this week. She talked to me about everything from how prednisone makes me feel to how moving to Denver will impact me financially. She shared her frustrations with my lack of improvement over time and her ideas for helping me. Before she left, she reminded me of my strong coping mechanisms that have kept me alive at times and hurt me at other times. She told me that as far as thinking about school/work/teaching and getting back to what I consider "normal" next year, I should stop for now. For now, she doesn't want me anywhere near a school or students and she wants me put next year into the "deal with it later pile". Those words pierced right through me like a knife. The initial pain was agonizing. This is hard enough deserting my kids, my job, my work for the rest of this year, but to think about deserting it next year too, even forever??? But if I am anything, I am disciplined and obedient. I am a fighter and I know how to cope. It's what my body does. So if Dr. Olson wants me to put this out of my mind, that is what I must do. God has placed her in the lead position for my care for a reason. I trust her and I know I have plenty of other things to face right now. This personal visit was a gift. Honestly, I think we both needed it in certain ways. I am anxiously looking forward to the wonderful Good that's about to unfold.

dealing with the matters at hand ~ letting my coping mechanisms step up

As Mom and drove over to Rose Medical Center ER, I was still struggling for breath, but it wasn't as severe. Our drive was quiet. We had both just been slammed with a lot to process. I admired the sparkling flakes of snow blowing through the sunny Denver sky as I made a mental list of important next steps.

Before I walked into the ER, I glanced up and thanked God for His plan and all the miracles that were unfolding in my life today. I stepped through the doors prepared to muster all of my strength so I could be strong for Mom and deal with all the challenges that were about to coincide with God's plan.

I worked on cancelling our plane tickets as soon as I pulled myself together from the student butchering my veins for his IV education :). The hold time was an unbelieveable thirty minutes and after getting through I was transferred from one airline to another just to start all over again. Unfortunately, the process had to be completed over the phone. I gave Mom the number to take care of the rental car. Two minutes before departure time our tickets were cancelled! Talk about down to the wire! It was done though. I just needed to get a letter from the hospital verifying the emergency to waive the cancellation fees. The next matter at hand was to find a reasonable hotel room for Mom. I am excited to say that my weak voice and hospital status not only scored a reasonable suite, but the deal of the century! I was focused and things were falling into place. Mom was calling friends and family to share the big news but I wasn't ready. I needed to have a few more things in place before I could handle putting this into words. All the while my nurses, therapists, and doctors were in and out doing their thing to get me back on track.

I contacted Rich about renting one of his apartments through the summer. He has been amazing to me. He offered the last two bedroom apartment to me, completely furnished with all utilities included. The apartment is only two blocks from National Jewish. It couldn't have worked out better. Things are going to be very tight because I'll be renting in Denver and still owning my house in Lexington. Dr. Olson already told me I won't be able to work for quite a while, but I have some savings I can live on. I've asked Debbie's daughter to consider subletting my house for $300 per month. That won't come close to my mortgage, but every bit will help and my house won't be empty. I felt like a robot processing information, but it was amazing to watch all the blessings fall into place.

Finally it was time to address work and friends. Leaving work. Just thinking the two words made me feel like I was jabbing a dull knife through my broken heart. I would have to ask for even more sick days than I've already been so graciously given and I would be abandoning the students I have a duty to teach. As far as my friends and co-workers it was so important to me that many of them hear it from me rather than from hallway gossip. I called Karen first to address the medical leave matters and share the news. Then I felt like I was in a race trying to get messages to my other dear friends before they had a chance to hear it from someone else. Everyone was so supportive and loving but a little broken at the same time. Leaving is going to be so hard, but it's my only option. It's long overdue and has to be done. I just have to focus on the good that will come from this leap. These superhero doctors are being used by God to change my life for the better.

It's been about 30 hours since this life changing event took hold. Wow!! I still have a lot to deal with, but the foundation is set. The doctor just left and was disappointed with my progress. I guess my body hasn't had much of a chance to focus on healing since I've been in here. That will come though. I think I'll take a little time now and just let things be.

Day Four ~ when God has a plan...

So much for improved breathing. :(  But what can I say, this is my body and I've been in it long enough now to know this is the way it goes. One day can be okay and the next day it won't be. In this case though, I'm thinking it was bigger than the ups and downs I usually experience. It seems to me that when God has a plan, it's gonna BE. I'm also thinking He started my day off with the gift of five inches of beautiful white snow because He knew I'd be facing some giants later. (I know it's not all about me, but I'm just thinking He's all knowing & all loving & the snow really did give me a delightful distraction when I needed it!)

Mom and I loaded our bags in the car and headed over for my final two appointments before our flight back to Louisville. I met with my cardiologist, Dr. Fenster at eight o'clock. He explained that the ECHO bubble stress test showed the shunt (leak) in my heart is back & a tad worse than on the last test but still nothing to stress over. He said we'll continue to watch it, but truly feels like the repair is still good. He also noted there are no eosinophils in my heart yet which apparently was a huge relief. This was good news. He discussed his thoughts on my pulmonary embolism and the plan of action for my coumadin treatment. When he examined me he was quite concerned about my breathing. I tried my best to minimize the situation and make him believe I was okay. He deferred to Dr. Olson, but made sure I knew he was concerned.

As I waited to meet with Dr. Olson, I practiced VCD excercises to try and improve my breathing. It reduced the audible wheezing but not the shortness of breath. When Dr. Olson entered the room she immediately let me know Dr. Fenster had talked to her about his concerns. (such a tattle tale! )  ;)  She wanted to know how I felt. I told her I was okay and we should talk about the results from the week. She stopped me in mid-sentence and let me know I was in very serious condition. My lung function was 20% and I was barely moving air. She said I just couldn't survive a flight cross-country today. All I could think about was how this was crushing Mom. I couldn't deal with this. I asked her again to talk to me about the results from the week. Her eyes met mine in such a way that I think she realized I needed the big picture. She agreed to talk to me while I did a neb treatment. She took a slow breath and told me they were all very concerned about me. The results they had showed my status has declined drastically in the past four months rather than improve on the treatment. My chest CT revealed serious airway disease with extremely high levels of eosinophils. The iron infusion had not improved my level like it should have. Her list seemed to go on and on. Then she said it ~ out loud.

"Toni, you need to be here, now. Your doctors don't have the resources to treat your rare disease processes. It's time for you to go on medical leave. This has gone too far. You need to be seen here at National Jewish every day for treatment at least through the summer. Dr. Katial, Dr. Maleki and I have talked and believe this is your only option."

Honestly, I think I felt relieved and shocked at the same time. It's hard to hear someone telling you you're that sick. I trust her. I know it's true. I'm not stupid. I can read the data. I just don't see myself as t h a t sick. I'm strong. I'm tough. I can push through and handle things. I don't just lie down on the couch when I feel crummy. Why can't I wrap my head around how serious my condition is? Am I blind or delusional? Do other people see me as a pitiful sickly person? Am I like the 800 pound person that thinks I'm bikini material? I just don't know. At the same time though, I'm ready because I do know I'm not okay. Things haven't been good for a LONG time. This is terrifying and life changing and mind boggling and thrilling and the most abundantly hope filled thing to happen ~ well, probably ever. I'm in. I'm all in. I am ready to leap with both feet and take God's Good for all He has to offer me.

Just as I was processing her words, Kaci peeked in the door and said it was time for the ENO. She and I went to the room down the hall and completed the test. My number was slightly lower at 299. When I returned to the room, Mom was notably upset. I sat beside her and she muttered, "she's putting you in the hospital". In the typical way that I cope, I almost immediately felt myself separating from the possible worries at hand. At the same time, I could feel Mom tensing up. Her head was in her hands & she was flushed. I felt helpless. I am so tired, so done with hurting everyone who loves me. It's so hard to sit there and cause pain to my loved ones because I have no flipping control over my crummy body!! I can't even imagine all that was on her mind. I just had to trust that she would realize the miracle we were experiencing in the midst of this tough morning. I sat quietly and motionless beside her and waited.

Kaci returned with orders for my hospital admission. Dr. Olson let me know that they were waiting for me in the ER and she would see me back at National Jewish after I was released from the hospital. Kaci then walked us out to a parking lot covered in sparkling white snow.

Oh what a morning...

Day Three ~ A Long Day

Today was a long day, a very long day. It started with a phych consult with Dr. Pearson. Dr. Olson has actually tried to get me in on several visits, but it always had to be bumped for more urgent testing. She (and National Jewish as a whole) is so thorough and sincere about looking at me and treating me as a complete person. She wanted me to have the opportunity to talk with someone because of the medical roller coaster I've been dealing with for the past several years. Dr. Pearson, like all the other doctors on staff, was very easy to work with. She was friendly, caring, and funny. She had already consulted with Dr. Olson on my case and was clearly concerned about my well-being. At one point she began chuckling and said, "do you want to know what I can tell you're really good at?" Of course I did. "You're really good at taking things in stride and rolling with intense situations." I decided to take that as a compliment and rolled on to my next appointment which was with Alex Wilson, the nutritionist.

We met a long time and discussed many details about my nutrition needs according to the current lab results. I do have immune deficiency, severe iron deficiency, protein deficiency, and needs stemming from steroid side effects. I am actually a very healthy eater overall, so she was careful to explain that most of the complications are results of my illnesses and medicine side effects. I'm not sure if that made me feel better or not. : /  It was a relief that she did NOT mention the word anorexia. She did say I'm still technically underweight, but was very understanding about how and why it's directly connected to my medical condition.

My last big consultation appointment of the day was a familiar one with Dr. Spahn. He reviewed my pharmacokinetics testing results from April 2010 (which was normal) and refreshed us on how steroids, t-cells, eosinophils and all work (or wreak havoc) in the body. Finally, he explained that even though in 2010 my body was absorbing and metabolizing prednisone properly, he and Dr. Olson felt like there was a possibility that with the progression of my disease that may not still hold true. They proposed redoing the pharmacokinetics testing today to see if there has been a change. Of course I agreed so he added the orders into my schedule and sent me to the lab for the first of three timed blood draws. It seemed the results of this test could shed a lot of light on why some of my meds don't seem to be as effective anymore. We'll know more in a week.

After the first blood draw, I zipped up to the third floor to meet awesome Tom and Dr. Olson for a laryngoscopy. It was quick and simple. She said my vocal cords were still closing off when I exhale, but overall the VCD did not seem as severe as it was two years ago. We finished out the day waiting for time to pass between the pharocokinetics blood draws. The bright news for the day is that I am feeling noticeably better this afternoon. My breathing is more stable than it has been and I don't feel as achy. :)  It's been a good, long day.

Day Two ~ Intense

Today began on that dreaded third floor. :( By the sheer grace of God, I wasn't as stressed about it as usual, but I was also in no rush to check in. I mean, come on, I was a whole four minutes early for the appointment. I'm totally certain they had things to do other than rush me on back to get started!! I decided to be considerate & not take their time. ;)

At exactly 8:00 a.m. I stepped up to the window to check in. A familiar face was waiting for me. It was sweet Kristina. She did my PFT Box test in December of 2010 & was sooooo kind! It was a relief to see her. We headed to the room & jumped right in. She did have to page Dr. Olson because I'd broken the rules again by taking my neb treatment before the test. Of course Dr. Olson understood & we moved forward with the tests. As usual, I had to do each part numerous times because my lung function was so inconsistent. Kristina was patient & understanding though. When she finally decided to throw in the towel, we moved down the hall for my arterial gas draw before the 6-minute walk test. Not the highlight of my day!

Kristina tried once with no luck. Without hesitation she asked Mark to try. After some sickening digging he was successful. He wrapped my hand in warmers & hurried off to process the blood. I was at 93% ~ a bit low, but much better than it was in October! Kristina & I completed the rest of the test & I headed downstairs to meet up with Mom for my appointment with Dr. Olson.

Dr. Olson was a refreshing sight as always. She let me know that she'd spoken with Dr. Katial and knew things weren't "okay" so I couldn't downplay anything. Ha! It's like she can see straight through me! Several results weren't back yet, but she was concerned about the ones that were. She didnt share many details with me because she said they needed a lot more information. She sent tons of testing for Jennifer to add to my schedule & had Kaci walk me over for an immediate ENO Test (the one that measures airway inflammation). In July I registered at a very high 245. Today It was 358 which I later found out is the rare top 1% of ENO test results & not a good thing by any measure. When Kaci handed off the result, Dr. Olson hustled from the room. Within a minute I noticed Dr. Katial pass by the door. I felt Mom tensing up next to me. I just sat quietly and said a prayer for her. I didn't know what else to do. I felt it too, but I felt good about it. God is doing something big and intense here this week and I'm completely on board. Kaci returned with instructions for my prednisone dosage and a ton of new test orders for Jennifer to arrange in my schedule. We headed to the cafeteria for lunch to allow time for the updates.

After lunch we killed a little time catching up with friends from home. Before long it was time to head to the basement cardiology department for my unexpected ECHO bubble stress treadmill test. I was a bit nervous about this test because deep down I knew I was feeling pretty crummy and I didn't want to disappoint the doctors with a less than optimal performance. After I checked in I slipped away to the restroom to psych myself up before they called me back. Crazy, I know, but sometimes you just need a minute to pull yourself together.

I returned to the waiting area just in time to meet Nikki calling my name. I was delighted to see it was her. She has performed the test with me each time so having her there was refreshing. As she prepped me for the test she voiced her concerns about my wheezing and we proceeded to console each other. :)  The test was difficult, but everyone involved convinced me that I performed well above the expected rates for my current medical condition. I decided I'd have to accept that and let my worries go. I truly gave it all I had.

We finished just in time to rush to the second floor to meet with speech pathologist, Heather about my VCD. She simply reviewed exercises and strategies that I've been using for the past two years and confirmed that my form is correct. My VCD has improved overall, but I lack control when it flares during illnesses and severe asthma exacerbations.

My final appointment of the day was a simple high resolution CT of the chest. It was quick and painless which was a lovely way to end and intense day. Mom and I both left the building knowing that this week was different. Even though most of the information is pending, it is clear from the demeanor of the doctors that my condition has worsened...more than even I recognize. It's becoming clear to me that God cancelled my cancellation for a pretty BIG reason.

Day One ~ Doctors, Doctors, Doctors

I woke today inspired by friends and ready to go get the Good God had in store for me. I was still struggling to breathe, but feeling a bit better overall. Walking in through the National Jewish double doors I was greeted by the familiar scent of those sweet Rose Petal toys from my past. :)  It was a welcome comfort.

My day started with vitals and a spirometry which of course made me feel like a failure. I had to remind myself that I was here for help though. One day I will pass these stupid lung function tests! The nurse led Mom and me back to the room where we were quickly met by dear Dr. Katial, the immunologist. I absolutely love that doctor! We discussed recent events and shared his dismay with my current condition. He was "underwhelmed" by my status on such a dangerously high dose of steroids and other meds. He added orders for tons of labs and said he would be talking with Dr. Olson and the other doctors as the results came in. Even though it was the first appointment and he couldn't do much more than say he needed to gather more information, I actually left feeling extremely hopeful. I could sense his urge to fight for me and that was something I've been longing for.

Without a wasted minute, they hustled us across the waiting room to the other exam rooms to meet with gastrointerologist, Dr. Toribara. The meeting was light-hearted and concise. He has quite the sense of humor. He was quick to point out that I am a "Hell of a case" and he's glad he's a minor player in it! He confirmed my beliefs that reflux/gastric problems do not play a role in worsening my asthma or health problems. Even though there are studies to show the correlation is possible, he said it just isn't the case with me. With that, piece of the puzzle in place, we rolled on over to appointment number three with rheumatologist, Dr. Maleki.

This is where things got a little heavier. She reviewed tests, discussed symptoms, and absolutely confirmed Churg Strauss as my diagnosis. She said it's such a rare disease that she has never seen or even read about such a solid, early stage case. Then she talked about the treatment. She was concerned about my course of treatment since the initial diagnosis on August 30th. Things haven't exactly gone as planned and she wasn't pleased or content with it. As I listened to her talk I thought back on the past few months. It's like they were flashing before me. I was seeing all the things I try to put out of my mind in order to cope from day to day. Things like begging doctors to order tests, communicating back and forth across the country, missing work, inadequate care, contradicting plans and so on. She explained the possibility of trying other treatments if the one I'm on now doesn't start working. Her scenarios included options that aren't readily available and some that need to be monitored very closely and seriously. In my mind I knew that nothing she was discussing was likely if things continue as they have been. It's time for a change. I need these doctors for more than a week. I need help. I want to work and I want to live. I deserve to live. She wrapped up the appointment by examining me and pointing out ways my body has deteriorated over recent months. She also order several more tests and promised to consult with Drs. Katial and Olson to develop and wonderful plan. I walked away quietly knowing that was exactly what I needed..."a wonderful plan".

After that, I was about 30 minutes late for my appointment with ENT, Dr. Ramakrishnan. It was no problem though, they were able to get me right in. He reviewed his surgery notes from October and examined my sinuses. Overall, the good news is that the surgery was a success, but there is still a problem with eosinophilia. He said it was most likely connected to the Churg Strauss and his role from this point forward would be a minor one.

That wrapped up the first day with the exception of a few more needle sticks. :(  For a day of initial meetings and tests I already feel like big things are going to happen this week.

a little different this time

Everything about this trip has been a little different from the beginning, so I feel inclined to take a different approach to blogging about it too. Rather than the simple day by day ~ play by play rundown I've usually given, I feel the overwhelming urge to be honest with myself and include my raw, uncensored thoughts. I do believe God used my dearest friends to get me out here this time for a reason. He has a plan for me. I can't claim to know that plan, but I want to be able to look back on these trying times and remember how it feels so I can ALWAYS be thankful. I know that life can change drastically from one day or even one hour to the next. The outcomes I am staring at this week could be radically different next week, but that's okay. The important thing is that I'm on board again! I'm back in the game and I am ready to fight. I'm ready to do what I need to do, whether it's a little different or a whole lot different....

Thanks for rallying the troops, God!

I must admit that I wasn't exactly abounding with optimism and expectations for this trip to National Jewish. I wanted to be ~ I just couldn't seem to muster it up. That's when God came through in a heart-melting, jaw-dropping way. He rallied the troops and in one day of traveling cross-country I have been showered with more love, inspiration, and encouragement than any one person deserves. The power of support is truly priceless. It has really changed my whole perspective! I DO believe this trip will be GOOD! How can anything be against me when God is clearly showing me all He has in place to encourage me?!

I know I've mentioned it before, but I am so thankful how this journey has shown me true friendship. It constantly amazes me to see how sincerely people care.... for me. It's so humbling. Mere acquaintances have become solid rocks of support. I am blessed to be touched by such wonderful people I can call my friends.

pneumonia should be a 4 letter word

I don't deserve to complain about being sick. Compared to other school years, I haven't had as many actual infections this year. Maybe the transition from the classroom really has made a difference. I've been out for so many other health reasons, it's just hard to know why my body is doing what it's doing. Regardless of the reason, I've had a good run & when you look at the odds & history, I guess I was due. Seriously though, for the record, I just have to say, pneumonia is a beast.

It has a way of taking you at your weakest and highlighting all you are struggling with. I had just completed my first full week of teaching since early September. It just seems ridiculous that I can not make it seven days without wimping out. I've withdrawn from friends and family this week because I don't want anyone to know how bad I feel. Also, I totally don't have the sick days for being this sick. Pneumonia should seriously be a four letter word.

time to decide

Well if I had to name one thing I'm good at, I'd have to say it's avoidance! When I decided not to deal with Denver, I really didn't deal with it!

A couple of weeks ago, I finally decided to cancel the trip. As much as I love Denver and my doctors at National Jewish I just felt like it wouldn't be worth going. Mom was against going, it will cost money that I don't have, and I convinced myself it probably wouldn't help anyhow. Decision made. Trip and appointments cancelled.

Or so I thought....until last week. I got an email from Kaci telling me that Dr. Olson had received updates from my doctor and was concerned. She wanted me know she was keeping me on the schedule for all my appointments. She felt like I need to make the trip and they can help me. Staying true to my avoidance, I took some time to process the email.

After a serious heart to heart with Mom and some serious thinking on my own, I've finally decided to go. (or realized it's meant to happen) Although I have felt completely "done" and exhausted lately, I can't let that cloud my judgment. I can't let it rob me of a chance at wellness, normalcy, something better. If Dr. Olson and my other doctors at National Jewish still believe, I have to go for it. After all, they're the Best in the nation at what they do. Whatever comes of this trip, I know I am supposed to go and in the end it will be good.