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...
