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. ;)
This is my place to record a small part of my life that sometimes consumes me ~ my medical journey. The amazing thing is that God is All in it and through it all, I know it all works for His Good! I write so I will always remember each of His miracles & how they came about...
Thursday, January 27, 2011
Friday, January 21, 2011
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.
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.
Tuesday, January 18, 2011
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.
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.
Friday, January 14, 2011
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!
Friday, January 7, 2011
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.
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.
Sunday, January 2, 2011
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?
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?
Thursday, December 30, 2010
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! :)
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! :)
Wednesday, December 29, 2010
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.
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.
Tuesday, December 28, 2010
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...
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...
Thursday, December 9, 2010
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.
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.
Wednesday, December 8, 2010
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.
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.
Tuesday, December 7, 2010
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.
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.
Monday, December 6, 2010
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.
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.
Monday, November 15, 2010
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.
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.
Tuesday, November 2, 2010
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 :)
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 :)
Tuesday, October 19, 2010
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!
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!
Tuesday, October 12, 2010
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.
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.
Saturday, October 2, 2010
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.
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.
Saturday, September 11, 2010
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.
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.
Thursday, September 2, 2010
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!
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!
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