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.