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!
Tuesday, October 19, 2010
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.
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