Day Three

Today was a bit busier, but everything was still pretty familiar. I began on the dreaded third floor expecting to have a blood gas drawn. I was delighted when it was Tom that called my name. I was even happier when he took me back to the room and said we were just walking and skipping the blood gas!! Yay for good news on the third floor! To make it even better, he said that when I walked, my oxygen level increased - which was what it was supposed to do for once! More good news!

Down the hall I was placed back in the box for the breathing tests. Everything there went as expected. I had some trouble on a few of the tests, but Brenda didn't seem as frustrated with me as she has in the past. ;)

Next I had a chest CT and then a new test to me called an ENO - exhaled nitric oxide test. It checks for inflammation in the lungs, bronchioles, and smaller airways. It was a very short test and given in a neat way. I had to blow into a machine until a picture of a cloud smiled. LOL. Pretty cute - huh? It showed that my airways are still quite swollen or inflamed even with the meds I am taking.

My final appointment was with Julie in speech therapy. She was great. She reviewed everything we had done with Heather back in April. I talked with her about the voice therapy at UK and she understood why I didn't wish to return. She performed a search on her computer for me and found a list of great therapists in my area that I could call when I get home. Surely I'll have better luck with one of them. She also explainly what should happen in a therapy session for VCD. I left feeling better prepared to help myself.

Day Two

This was a short day with one really long test. I just had to go to radiology. We got to see Kevin again. He's such a fantastic person. National Jewish is a better place for having him. He took me back and helped me get ready. They were doing the MRA w/wo contrast to check on my heart and pulmonary veins post surgery.

Of course, the test took forever, but they said they were finally able to get all the angles they needed. Apparently everything went well. Dr. Fenster ordered the test, but is vacationing in France so Dr. Olson will go over the results of all the heart procedures with us on Friday.

Day One

One of the big reasons Dr. Olson wanted me back out here was to meet with immunology. I thought Courtney had said she'd worked out the schedule with Dr. Katial and that was who I was seeing today - he was in Hawaii though. I ended up seeing Dr. Mela, who I did meet last April and Dr. Weber. They were both very nice and thorough - I have to admit I was a bit disappointed though. :(

After a long consultation, Dr. Weber decided to double my aspirin dosage to 1300 mg per day for the next six months at least. He's hoping that will help get my asthma under control and we'll be able to drop back to 650 mg per day after that. He also ordered a full panel of labs to check all of my immune antibodies and such. They were very interested to see my IGg level since I've been off steroids a few weeks.

Later I had a repeat cardiac stress test with the agitated saline shunt (bubble test). I was so nervous about this test. It was supposed to be Wednesday morning, but they changed the schedule on me. I was still feeling pretty weak from being sick and didn't have much stamina yet. I was so concerned about not doing any better than I had done back in April.

Nikki and Rachel were in there to perform the test again just like before. That was very comforting. They could tell I was still a little under the weather, but said not to worry about it. I did all I could do and the test actually went okay. The good news was that now we could take our time getting ready on Wednesday morning. :)

Back to the Big D

Jenn took us to the Bluegrass airport Monday afternoon. Our flight was scheduled to leave smack in the middle of a huge nationwide snowstorm - seriously! And I had to be in Denver by 7:30 Tuesday morning - no excuses! :) I was determined that all would be well...an believe it or not...it was. Each of our flights were on time and flowed without a hitch. God is good! We landed in a blustery, snow covered Denver at about 9 p.m. mountain time. The temp was negative something insane ~ but we were there ~ luggage and all. Life is good.

We rented an Explorer at the recommendation of the attendant and were on our way. I was behind the wheel and miles from my calm self. The roads were treacherous. I mean are you kidding me? I expected Denver to be all over this snow removal situation. Oh my, that was one driving experience I NEVER wish to repeat. We had to stop twice to clean the ice from the mirrors and windshield. Later I discovered that's where I must have lost my precious sub-zero glove-lol-(nothing a quick trip to Target couldn't fix).

Anyhow - we did make it to the beautiful, warm hotel where we quickly unloaded and crawled into bed to rest up for the first day at NJ.

ear infections & flying won't mix

I'd been working like crazy all week to prepare for being out all next week. Without fail my to do list was still miles too long when I woke with crazy ear pain. Nooooooooo!!!! Everyone knows that ear infections and flying won't mix. I have four days until my flight leaves. I didn't have a temp when it was time to go to work, so I decided I had to tough it out until I could get into to the doctor. I just had too much to do and had already missed so much work. I called Dr. Raghavan's office during planning and lovely Andrea, the receptionist was able to get me in immediately after work. Yes - no sick day - now I just had to find strength to get through the day...

The doctor said I had a "raging" ear infection and a fever. She prescribed an antibiotic and provided some tips for easing the pain on the flight. She warned me that it would still be pretty rough. She also suggested that I take the next day and weekend off to get well before the trip. Ha, ha-ha, ha ha ha - are you kidding? Who has time to lounge around for three days before having a five day sub while you're in another state? Not me. I was just going to have to get well while working restfully. ;)

dr. woody the great

The fabulous Dr. Woody came through for me ~ or should I call her Ghandi?? That's who I felt like I was trying to contact when I called Central Baptist and asked to leave her a message!! They were completely baffled by my request. I lost count after the first five reconnections and new phone numbers I was given to try to make the connection. Finally it happened. I was told to call on Monday at noon and someone would page her with my number. Believe it or not, it happened exactly like that...finally :). She returned my call within minutes and was delightful. I began by sincerely thanking her for changing my life. We chatted for a few minutes and I could really tell that my words meant a lot to her. She gladly and highly recommended Dr. Chitra Raghavan in Beaumont. I trusted her completely and called right away to make a consultation appointment. I was doing this the right way this time. I wasn't taking anymore chances on doctors wigging out on me after they got in too deep. The sweet receptionist gave me an appointment for that Friday. I started praying for this new doctor immediately. :)

The appointment was better than I ever expected. She talked to me about my history and really listened to my concerns. She read Dr. Olson's entire report and agreed with everything. She was totally on board. She told me that any patient Dr. Woody cared enough about to refer to her was worth all of her effort. She examined me, listened to my lungs and even looked at my ears and throat. She noticed my lungs and ears were still not in top condition and made suggestions for the weekend. I was completely impressed. Before she left the room to copy the report, she hugged me and said that even though I may feel like she doesn't know what I've been through, she can see from the report that it's big, it's been tough, and she's going to do all she can to make things better. Wow ~ I teared up after she walked away. My prayers had been answered ~ I finally felt like I had a doctor. What relief.

To make a good day even better, as soon as I got home, Kaci, Dr. Olson's nurse called to check in on me. She and Dr. Olson just wanted to make sure that I was doing better so I would be able to fly on the 31st. Things were looking up on this sunny Friday.

a plan and a schedule

Dr. Olson did call as promised on Monday. She wanted to add some asthma meds and said I would have to talk with Dr. Caudill. I was so done though. He had crushed me and made it so clear that he wanted nothing more to do with me. At this point, I didn't have a choice, I needed a prescription and he was my doctor. She knew I was apprehensive and wanted to talk with him about her plan anyway. She spoke with him on Tuesday and called me again on Wednesday. She said she'd shared her ideas. She asked him to see me as soon as possible to check my lung infection and start the new meds. She also let me know that they were working on my schedule and she hoped to have me out there at the first of February.

I emailed Dr. Caudill and he replied that he didn't see a need for an office visit and he wasn't sure about the new meds. On Friday I got a call from the pharmacy that they had been called in. That email sealed the deal for me. I was ready to look for a new doctor. I decided to contact Dr. Woody (my hospitalist from CB) and ask her for a recommendation. I couldn't depend on a doctor that wasn't interested in treating me or working with other specialists.

Courtney, my scheduler from National Jewish called on the 13th with an update on the process. She called on the 18th to let me know that I was scheduled for the first week of February. I would be seeing Dr. Katial on Monday the 1st and Dr. Olson on Friday the 4th. Other tests would be scheduled in between.

Another Weird Therapy Appointment :/

I went back to voice therapy today expecting to work on strategies to help me when I'm having trouble and learn some new exercises. Much to my surprise (and discomfort) that didn't happen. The doctor asked me how I've been and noticed I was a little wheezy (which could have been great for practice I would think). After I answered, there was a long quiet and awkward silence. I decided to mention that I'd been practicing the breathing exercises I was taught by the therapist at National Jewish. She said that was good, wrote something on a paper, and asked if I'd like to come back in two weeks.  What??? Why would I come back? We just stared at each other in bizarre silence? I paid a $20 copay for a 12 minute twilight zone episode. This experience was just too weird for me. I found it funny to talk about, but not exactly beneficial. I guess I paused a bit too long because she said, "well, let's do three weeks instead". Great, that sounded like it just might interfere with my trip to Denver and I'll have to cancel ~ I agreed immediately and left!

frustration, confusion, and comfort

It's been a pretty frustrating first week back. The fevers have continued throughout the week and now my left ear has started hurting. I've been emailing Dr. Caudill and he has seemed indifferent about treating me. He finally offered to see me this afternoon to take a look at my ears. I've also emailed him about the December report from Dr.Olson. It came in last week and I had some questions about some of the recs she'd listed. I wondered when and if he was wanting to start the plan. He replied that he didn't intend to start anything at this point. I was beyond frustrated. What happened to the doctor that was so interested in helping me? The doctor that promised to work with the doctors from National Jewish and continue the plans they developed to help me get well? I didn't understand what had changed? He was suddenly so different. He was acting like he didn't want to be my doctor anymore. I can't deal with this - I just want a doctor - a good doctor.

I was even angrier when I left his office. He only looked in my left ear. He said, "Yep, it's infected too, keep taking the antibiotics. You're lungs don't sound too good either." He didn't even bring a stethoscope into the room with him. He couldn't have cared less about treating me. The only good thing that came from the appointment was that I got him to write a letter so I can have donated sick days at work. Before I left he told me he thought it was time I start accepting that this is how things are for me. I was crushed. Only one month ago Dr. Olson was preaching the exact opposite to me. How could he say such a thing? I left with no hope of feeling better physically and feeling more frustrated and confused than before. Maybe he was right.

Just like a gift, the phone rang at 6:20 p.m. It was the comforting voice of Dr. Olson. She was just calling to check in on me since I had been sick when I left Denver back in December. She could immediately tell that I wasn't well and could hear my wheezing. I quickly updated her on the past month and she was so disappointed. She had been so hopeful about things turning around for me. The news that my peak flows had been below 250 since December was appalling to her. She insisted that I needed to get back out there for next steps. It couldn't wait for April as we had previously planned. I was so caught off guard that I was speechless. How could I afford another trip now? But at the same time, what relief, I had to go, could another trip make a difference? My head was spinning. Her immediate advice was to get to a UTC to change the antibiotic since the ear infection had spread, get a chest x-ray to check for pneumonia, and start prednisone to get my peak flows back on track. I couldn't get on a plane until I was stable.

She comforted me and told me that it was possible for me to feel better than this. I just need a doctor to be on board with the plan and on top of things. She promised to talk with me Monday to discuss the x-ray results and her plan. What a rollercoaster! I just want to be well - I just want to be able to work without missing days. I am so thankful for this doctor in my life. This fight is wearing me down and she is truly a gift from God. I pray that answers and relief comes soon.

So Thankful for the UTC

This was the 4th day on the z-pak and it didn't seem to be making a real difference, but I wasn't feeling terrible. My ear was bothering me a little more when I woke up this morning though. I just shrugged it off. After church, Stacey and I met at school to work on new reading groups and get things ready for the week. As we were talking, apparently I was holding my right ear. She asked if it was hurting, and realized what I was doing. It was hurting quite a bit more. I decided to focus on the things that had to be done first.

Within the next hour I was in full blown ear pain. I finished up my work and headed home. By the time I got home, it was 4 p.m. and I felt terrible. I started looking up local urgent treatment centers and all of them closed at 4 on Sunday except the one on Dove Run. I didn't want to go there at all. I waited another hour and the symptoms only worsened. I had to go.

At the UTC the doctor said I had a temp of 103.6 and the worst inner and outer ear infections he has seen in an adult! He was also quite concerned about my wheezing, but I convinced him that my regular doctor would treat that later. He sent me on my way with a new antibiotic and ear drops with a promise that the fever and pain would be gone by Monday.

Monday...the first day back to school in fresh new 2011, and I would once again, be absent. When will things change?

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!