Courtney decided to go ahead and send me a copy of my schedule "as is" so far. Dr. Olson is still working on squeezing in Dr. Katial and she said there may be some other tests yet to be added as well. This could give me an idea of what the week will look like though.
When it arrived, I anxiously opened the envelope to see what she had planned. At this point, the week is filled with mostly MD time and tests I've experienced before. I'm scheduled to see five specialists! I froze when I read over Day 4 though...she is planning to repeat the bike test. :( I could feel my muscles begin to tense and my heart start to race. I realized that this trip has become enough of a nightmare, I couldn't spend the next three weeks stressing about this test. I decided to call Johnna, my respiratory therapist, and figure out what I could do to prepare for it so I could be calmer on the big day.
Since then I've been building my resistance tolerance on the bike each day to get a feel for the actual test scenario. So on the day of the test, I won't have to worry about my performance on the bike, I can focus on staying calm for the dreaded A-line and dealing with the horrid mask (which will be plenty to worry about!).
Thursday, July 14, 2011
Thursday, July 7, 2011
Runaway
I have the image in my head of the child with a bag ready to runaway after hurting someone because she feels like the best way to make things better is to disappear...
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When Barb, the lung nurse called from National Jewish to set up my first visit over a year ago, she asked about my hopes or "dreams" concerning my health. One of the things I mentioned was that I would love for others to be able to forget that anything is wrong with me. It was a big one. It's not that I lack appreciation for what people do and feel for me or that I don't want to be loved...it's that for years now, too many years, I have been the source of heartache and worry for too many people that I love. I'm so tired of being a burden to my parents, my friends, and my co-workers. It seems like that childhood mentality makes sense - if I could just runaway I could stop the pain and worry I cause. If only it could be that simple...
Courtney called Tuesday morning with my official dates for this trip. She said I should plan to be at NJH for the full last week of July. Dr. Katial is the only one not on the schedule yet because he is booked, but she said Dr. Olson is convinced she can work him in somehow.
Even though I feel hopeful about this trip, it has already caused so much pain I'm wondering if it's worth it. Each decision I make to try to make things better seems to make them worse. Could I just runaway?
Courtney called Tuesday morning with my official dates for this trip. She said I should plan to be at NJH for the full last week of July. Dr. Katial is the only one not on the schedule yet because he is booked, but she said Dr. Olson is convinced she can work him in somehow.
Even though I feel hopeful about this trip, it has already caused so much pain I'm wondering if it's worth it. Each decision I make to try to make things better seems to make them worse. Could I just runaway?
Thursday, June 30, 2011
eos & RDW
I had my follow-up appointment with Kristy today. As I expected she was pretty excited about my status. :) Recent changes include adding the medicine Zyflo and being out of school (away from 700 kiddos) for summer break. Which change is making the big impact? Who knows?? We're both just content with the fact that I'm not sick and I'm not on steroids for now. :) Life is good!
My labwork showed my eosinophil count to be down to 1350. Apparently that's still considered a high number, but in my book it's not even close to 3000, so I'll take it as a win! My RDW count was also quite high. My minimal googling efforts tell me it has something to do with red blood cells. My "let it go until a doctor says it's a problem" instinct kicked in quickly and I gladly let it take over. There are too many other things to be concerned about. I am happy to forget all about those numbers, knowing Dr. Olson will deal with them. ;) I'm still feeling pretty good and determined to make the most of it for as long as it will last!
My labwork showed my eosinophil count to be down to 1350. Apparently that's still considered a high number, but in my book it's not even close to 3000, so I'll take it as a win! My RDW count was also quite high. My minimal googling efforts tell me it has something to do with red blood cells. My "let it go until a doctor says it's a problem" instinct kicked in quickly and I gladly let it take over. There are too many other things to be concerned about. I am happy to forget all about those numbers, knowing Dr. Olson will deal with them. ;) I'm still feeling pretty good and determined to make the most of it for as long as it will last!
Tuesday, June 28, 2011
I feel Peace, yet I don't really know anything???
Apparently the patience card was played, so I had to wait a bit longer to hear from Dr. Olson. ;) I went out on a limb, trusting her more than Dr. Thompson, and I cancelled the bone marrow biopsy. I discovered she hadn't called me because she had been waiting for Dr. Thompson to return her call. It turns out he is currently on a four week vacation in Greece. (how convenient) She finally stopped waiting and called me back today!
My peak flows have been steady between 260-310. That's not good by any measure but, I'm NOT on steroids and I'm NOT sick! I'm happy - I'm content - I could live the rest of my life like this and be SOOOOO thankful. I know I don't feel great, but my gosh, this is the closest to great I've been in so long that I'm willing to take it. Dr. Olson insisted that I deserve more, and 260 isn't good enough by any measure. In fact, it's too close to being dangerously low. She is positive that there is more that can be done for me. She reminded me about how rough the school year was for me & said this is the time to change things. That was enough for me. I want a chance to go back to the classroom more than anything. I was all in.
While we were on the phone, she put the orders in for Courtney, my scheduler to try (like a magician) to fit all the tests & doctors in one week in July. What a task! She should call me in the next week or two with an update.
So, the really cool thing is that I feel complete peace about this now. The funny thing is that I still don't know anything! I don't know when I'm going, what they are going to do, or even if they will figure anything out. I believe though. For some reason, I believe with more comfort and passion than ever before. I know this has all been All for Good, and so much of the time none of it has made sense. But right now, all I know is God is in control and things really are gonna get better this time. ;)
My peak flows have been steady between 260-310. That's not good by any measure but, I'm NOT on steroids and I'm NOT sick! I'm happy - I'm content - I could live the rest of my life like this and be SOOOOO thankful. I know I don't feel great, but my gosh, this is the closest to great I've been in so long that I'm willing to take it. Dr. Olson insisted that I deserve more, and 260 isn't good enough by any measure. In fact, it's too close to being dangerously low. She is positive that there is more that can be done for me. She reminded me about how rough the school year was for me & said this is the time to change things. That was enough for me. I want a chance to go back to the classroom more than anything. I was all in.
While we were on the phone, she put the orders in for Courtney, my scheduler to try (like a magician) to fit all the tests & doctors in one week in July. What a task! She should call me in the next week or two with an update.
So, the really cool thing is that I feel complete peace about this now. The funny thing is that I still don't know anything! I don't know when I'm going, what they are going to do, or even if they will figure anything out. I believe though. For some reason, I believe with more comfort and passion than ever before. I know this has all been All for Good, and so much of the time none of it has made sense. But right now, all I know is God is in control and things really are gonna get better this time. ;)
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Tuesday, June 21, 2011
a topsy-turvy world
I left a message with a nurse at National Jewish for Dr. Olson on June 13th informing her that the biopsy had been scheduled. I left it at that knowing that if she needed to call me, she would. In the meantime, I convinced myself that this whole thing was getting blown out of proportion. It was not a big deal. I have finally started to feel better and there is nothing to even be testing for. (The mind is a wonderful thing!) Anyhow, I was almost feeling like it should be time to just cut the cord with Denver and say I'll be okay. The communication thing just doesn't work with doctors cross country and frankly it's getting exhausting. I am happy with how things are now, so this would be a good time to stop dragging things out.
That's exactly when it happened - just when I've almost convinced myself - the phone rings - it was Dr. Olson-
"hello"
"Hi Toni, how are you? Tell me what's been going on?"
Geez!! That voice!!! She is so dang comforting! So reassuring! I almost wanted her to be mean or inconsiderate. It would be easier if she would do something to disappoint me. She hasn't though. She and the other doctors at National Jewish are the only doctors that haven't let me down. That's why it's so hard to let go and so hard to trust anyone else. So much for my attempt at cutting the cord!
As we talked she mentioned how she and Dr. Katial think it is important for me to come back out there this summer for testing. Although things are better now, she reminded me about my rough winter and that now is the time to do something about it. She said that if I want a chance to get back into the classroom, this is the time for them to figure things out. She also wanted to do other tests before the bone marrow biopsy is done and said she would prefer they do it out there. I mentioned that Dr. Thompson said he had tried to call her & she said she did leave him a message. Hmmm.... So frustrating...
She said she was going to call Dr. Thompson and talk to him about things. She said I would hear back from her this week. Oh how this changes things...
That's exactly when it happened - just when I've almost convinced myself - the phone rings - it was Dr. Olson-
"hello"
"Hi Toni, how are you? Tell me what's been going on?"
Geez!! That voice!!! She is so dang comforting! So reassuring! I almost wanted her to be mean or inconsiderate. It would be easier if she would do something to disappoint me. She hasn't though. She and the other doctors at National Jewish are the only doctors that haven't let me down. That's why it's so hard to let go and so hard to trust anyone else. So much for my attempt at cutting the cord!
As we talked she mentioned how she and Dr. Katial think it is important for me to come back out there this summer for testing. Although things are better now, she reminded me about my rough winter and that now is the time to do something about it. She said that if I want a chance to get back into the classroom, this is the time for them to figure things out. She also wanted to do other tests before the bone marrow biopsy is done and said she would prefer they do it out there. I mentioned that Dr. Thompson said he had tried to call her & she said she did leave him a message. Hmmm.... So frustrating...
She said she was going to call Dr. Thompson and talk to him about things. She said I would hear back from her this week. Oh how this changes things...
Thursday, June 16, 2011
ok, you've gotta tell me something
Well, I waited patiently for about a week, then I kindly left a message with the nurses for either Dr. Thompson or Kristy. I simply asked them to call me back to let me know if I was going to have a bone marrow biopsy and to please explain why I needed it. I left the message on the afternoon of Monday the 13th. I had given up on a response when the phone rang today. It was Kristy in all her perkiness!
She said she'd been waiting to call because Dr. Thompson has been out of the office and she was having trouble communicating with him (who isn't!). He told her he had not heard back from Dr. Olson, but does think we should move forward with the bone marrow biopsy. I don't understand why he always has trouble contacting Dr. Olson??? She always calls me right back. It just doesn't add up? Kristy couldn't really explain why we were doing the biopsy except to look for immune problems. She really seemed in the dark about the hyper eosinophilia too. She said she would need to "read up on the disorder some more". (sigh) Okay, though, she called, so I am in fact getting some answers. She scheduled the biopsy for June 28th at 11:30 am at Central Baptist in suite 703. It was set.
In my logical/denial driven state this can go two ways...I can let it be and calmly trust that the doctors know that this is what needs to happen & this is all that needs to happen ~ or I can recognize that they haven't done any bloodwork since school has been out, they haven't communicated with the doctors in Denver (who mentioned a different plan if things went as far as needing a bone marrow biopsy), and they don't seem to have a grasp on what they are searching for. I logically shouldn't allow a biopsy if they are just blindly stabbing for answers. I should demand a plan. What to do though? I truly don't know? It doesn't seem like they do either. For now, I'm just waiting and trusting...
She said she'd been waiting to call because Dr. Thompson has been out of the office and she was having trouble communicating with him (who isn't!). He told her he had not heard back from Dr. Olson, but does think we should move forward with the bone marrow biopsy. I don't understand why he always has trouble contacting Dr. Olson??? She always calls me right back. It just doesn't add up? Kristy couldn't really explain why we were doing the biopsy except to look for immune problems. She really seemed in the dark about the hyper eosinophilia too. She said she would need to "read up on the disorder some more". (sigh) Okay, though, she called, so I am in fact getting some answers. She scheduled the biopsy for June 28th at 11:30 am at Central Baptist in suite 703. It was set.
In my logical/denial driven state this can go two ways...I can let it be and calmly trust that the doctors know that this is what needs to happen & this is all that needs to happen ~ or I can recognize that they haven't done any bloodwork since school has been out, they haven't communicated with the doctors in Denver (who mentioned a different plan if things went as far as needing a bone marrow biopsy), and they don't seem to have a grasp on what they are searching for. I logically shouldn't allow a biopsy if they are just blindly stabbing for answers. I should demand a plan. What to do though? I truly don't know? It doesn't seem like they do either. For now, I'm just waiting and trusting...
Tuesday, June 7, 2011
it looks likes everything has been ruled out...
My appointment didn't start off on a great note because I confessed to stopping the prednisone and Dr. Thompson got quite upset with me. I explained my reasons with all the side effects and the recent benefits were not noticeable. I just wanted him to justify the need and I would gladly continue the use, he wouldn't do it, he just griped at me. He did not ask me to continue taking prednisone though. I was still very congested and somewhat wheezy. He started me on Zyflo (an asthma med Dr. Olson suggested months ago) and wants to check my liver function in a month.
It seems that the actual purpose of the EGD/stomach biopsy was to look for parasites in search of one last cause for my increased eosinophil counts. The results all came back negative though. Everything was clear. Dr. Thompson said "it looks like everything has been ruled out and this (hyper eosinophilia) must be the diagnosis. We need to do a bone marrow biopsy, but I want to talk to Dr. Olson about all of this first." He completely ignored my questions about this topic. He said he had to check on something.
I left with such minimal information it seemed ridiculous. Had I made him that angry just because I questioned a medicine? What would a bone marrow biopsy prove? What does it mean to say I guess I have hyper eosinophilia? Do I really have it or not? Is he not talking to me about it because he doesn't know much about it? Who can answer these questions?
It seems that the actual purpose of the EGD/stomach biopsy was to look for parasites in search of one last cause for my increased eosinophil counts. The results all came back negative though. Everything was clear. Dr. Thompson said "it looks like everything has been ruled out and this (hyper eosinophilia) must be the diagnosis. We need to do a bone marrow biopsy, but I want to talk to Dr. Olson about all of this first." He completely ignored my questions about this topic. He said he had to check on something.
I left with such minimal information it seemed ridiculous. Had I made him that angry just because I questioned a medicine? What would a bone marrow biopsy prove? What does it mean to say I guess I have hyper eosinophilia? Do I really have it or not? Is he not talking to me about it because he doesn't know much about it? Who can answer these questions?
Thursday, June 2, 2011
a very early egd
Today was my EGD or "esophagogastroduodenoscopy" plus stomach biopsy if you can pronounce it!! Stacey, Dawn, and Debbie were all amazing, willing and ready to be part of dropping me off and picking me up, but when we found out my driver had to stay, Debbie drew the short straw because she didn't have to work. :) She had to pick me up at 4:50 a.m. ~ UNREAL ~ I know! I didn't care so much about getting up that early, but it killed me that someone else had to get up that early for me on a day off. What a true friend.
So, we arrived to loads of paperwork of course. A very kind nurse took me back to the prep room rather quickly. She discussed the procedure (which I honestly didn't know much about) and started my IV. Before I knew it, I was in the procedure room talking with Dr. Schindler. He told me the entire process would not last long. He would take a few biopsies of my stomach and send me home to rest. The most frustrating thing was that I had to miss a whole day of school for a procedure that was so fast. He did say I would be in some pain. I was sure it was nothing I couldn't handle!
As promised, the next thing I knew, I was awake in a recovery room with Debbie and the nurse. They said they found gastritis from the high dose of aspirin I take, but no other signs of problems. The biopsies would be back in a week or so. They directed me to the car and off we went. Here are the pictures and results I was given when we left.
So, we arrived to loads of paperwork of course. A very kind nurse took me back to the prep room rather quickly. She discussed the procedure (which I honestly didn't know much about) and started my IV. Before I knew it, I was in the procedure room talking with Dr. Schindler. He told me the entire process would not last long. He would take a few biopsies of my stomach and send me home to rest. The most frustrating thing was that I had to miss a whole day of school for a procedure that was so fast. He did say I would be in some pain. I was sure it was nothing I couldn't handle!
As promised, the next thing I knew, I was awake in a recovery room with Debbie and the nurse. They said they found gastritis from the high dose of aspirin I take, but no other signs of problems. The biopsies would be back in a week or so. They directed me to the car and off we went. Here are the pictures and results I was given when we left.
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| EGD Results |
Monday, May 23, 2011
a day of the unexpected
I spent the morning with Kristy. I filled her in on what happened Friday night. This triangle of doctors is so complicated~communication doesn't seem to flow! She did every test that she thought Dr. Thompson would want and ordered the EGD/stomach biopsy & high resolution chest CT both to be completed before my next appointment on June 7th. She insisted that I stay on 40 mg of prednisone daily until they figure something out. (Anyone who knows me, knows how much that order bothered me).
On my way to work I called National Jewish to leave a message for Dr. Olson as she had requested on Friday evening. I gave the nurse the details of the CBC, the angio-CT, and the plan for the HR-CT & EGD. Since we had just spoken at length on Friday, I didn't expect her to return my call today. I was simply reporting back results.
At the SBDM meeting I was crushed when Leigh Ann announced they had hired the 2nd grade teacher to replace me next year. I stepped out of the room to pull myself together. A minute later she came over baffled by my sadness. It was just a tough thing for me to let go of, I told her I just needed time. This whole thing has been so hard. I feel like I've been dangling by a thread while I'm hiding a huge secret from my team and crumbling on the inside. One day Leigh Ann would report to me that it looks like I'll be able to stay at Southern and possibly even work with the 2nd grade team and other days she says Lucy Overall will get the position and I'll be sent to another school. At this moment though, I wasn't thinking about any of that, I was purely overwhelmed with the stab of my classroom being taken by another teacher. My students, my room had just been given to some new teacher and I simply needed a few minutes to deal with it. She was convinced it was about the intervention position though, and began spilling her guts like an open floodgate. She told me I got the job as 2nd grade interventionist and would get to stay with my team. What?? Wow? How? When did this happen? Huh? I was so confused, thankful, shocked, and baffled... Is this all I had to do all along, walk away teary eyed to get her to man up and make a final decision about my job!?!? Then she cried and asked for forgiveness and a hug.
What a day!
Well, it wasn't over, much to my surprise, the phone rang at 6:15 and it was her....yes...Dr. Olson. She never ceases to amaze me. She wanted to know how I was feeling and to let me know that she and Dr. Katial had a long meeting about me this morning. ???? What?? I thought? Did I hear her right? Two doctors in Denver had a meeting about me? Why? She said they discussed what's been going on with me and think it would be a good idea to have me come back out this summer and start from scratch with testing so they can get to the bottom of things. They would like for me to see the rheumatologist there and have the bone marrow biopsy there as well. My mind was racing as she spoke. I didn't even expect a call, much less such a load of information. OK, okay...
On my way to work I called National Jewish to leave a message for Dr. Olson as she had requested on Friday evening. I gave the nurse the details of the CBC, the angio-CT, and the plan for the HR-CT & EGD. Since we had just spoken at length on Friday, I didn't expect her to return my call today. I was simply reporting back results.
At the SBDM meeting I was crushed when Leigh Ann announced they had hired the 2nd grade teacher to replace me next year. I stepped out of the room to pull myself together. A minute later she came over baffled by my sadness. It was just a tough thing for me to let go of, I told her I just needed time. This whole thing has been so hard. I feel like I've been dangling by a thread while I'm hiding a huge secret from my team and crumbling on the inside. One day Leigh Ann would report to me that it looks like I'll be able to stay at Southern and possibly even work with the 2nd grade team and other days she says Lucy Overall will get the position and I'll be sent to another school. At this moment though, I wasn't thinking about any of that, I was purely overwhelmed with the stab of my classroom being taken by another teacher. My students, my room had just been given to some new teacher and I simply needed a few minutes to deal with it. She was convinced it was about the intervention position though, and began spilling her guts like an open floodgate. She told me I got the job as 2nd grade interventionist and would get to stay with my team. What?? Wow? How? When did this happen? Huh? I was so confused, thankful, shocked, and baffled... Is this all I had to do all along, walk away teary eyed to get her to man up and make a final decision about my job!?!? Then she cried and asked for forgiveness and a hug.
What a day!
Well, it wasn't over, much to my surprise, the phone rang at 6:15 and it was her....yes...Dr. Olson. She never ceases to amaze me. She wanted to know how I was feeling and to let me know that she and Dr. Katial had a long meeting about me this morning. ???? What?? I thought? Did I hear her right? Two doctors in Denver had a meeting about me? Why? She said they discussed what's been going on with me and think it would be a good idea to have me come back out this summer and start from scratch with testing so they can get to the bottom of things. They would like for me to see the rheumatologist there and have the bone marrow biopsy there as well. My mind was racing as she spoke. I didn't even expect a call, much less such a load of information. OK, okay...
Friday, May 20, 2011
I don't know anymore
I went to see Dr. Thompson Tuesday hoping for a plan and information from his teamwork with Dr. Olson, but there wasn't one. He said they hadn't had a chance to talk. I was pretty bothered by that, but decided to give him the benefit of the doubt. He talked with me more about how serious it is for me to stop teaching in the classroom. He also said he would do his best to help me finish this school year with the kids. He seemed to understand how hard all this is for me, and wanted to give me what he could for now. I have to continue taking high doses of steroids until they figure out what to do about the eosinophils & until I am away from the school environment.
Wednesday morning, (still on steroids & strong antibiotics btw) I woke with chest pains and a sore throat. That night I had a temp. :( It wasn't horrible, but it was certainly frustrating. My voice was screachy and my chest continued to hurt...a lot. Wednesday and Thursday were long days with no breaks. Friday I called the doctor at 2:40 ~ my first chance. Kristy called back at 5:10 quite concerned that I had gotten sick while on the meds. She said to try and push through the weekend & she would see me in the office Monday morning because of my sickness and because they finally had a new plan. She said Dr. Thompson had finally talked with Dr. Olson, but he didn't call me because he didn't have my number and wouldn't be back in the office until June. She wanted me to just call Dr. Olson for the explanation of all they had discussed.
I was a bit frustrated with the lack of help I got from Kristy considering it was a weekend. I would just have to push through like she said though. I did call Dr. Olson immediately and she returned my call within minutes. She was instantly distracted by my voice and concerned about my current well being. Their plan included a chest CT and more lab work which she insisted be done immediately. She explained that with my eosinophils so high, my cardiac/medical history, & chest pains + feeling crummy while still on meds it was simply too risky to wait until Monday. The rest of the plan includes an upper GI, a stomach biopsy and a possible bone marrow biopsy. She said if the doctors here don't seem to be getting things figured out after these steps, she wants me to come back out to National Jewish again...
I just don't know anymore, I don't know how I feel, what I'm going to do, where I'm going to be...I've gone back to my old ways of lying to nearly everyone. I can't tell people how bad I really feel~I just do everything I can to fake it through the day. I'm done, I'm just done. I don't know what to do about anything right now...
Wednesday morning, (still on steroids & strong antibiotics btw) I woke with chest pains and a sore throat. That night I had a temp. :( It wasn't horrible, but it was certainly frustrating. My voice was screachy and my chest continued to hurt...a lot. Wednesday and Thursday were long days with no breaks. Friday I called the doctor at 2:40 ~ my first chance. Kristy called back at 5:10 quite concerned that I had gotten sick while on the meds. She said to try and push through the weekend & she would see me in the office Monday morning because of my sickness and because they finally had a new plan. She said Dr. Thompson had finally talked with Dr. Olson, but he didn't call me because he didn't have my number and wouldn't be back in the office until June. She wanted me to just call Dr. Olson for the explanation of all they had discussed.
I was a bit frustrated with the lack of help I got from Kristy considering it was a weekend. I would just have to push through like she said though. I did call Dr. Olson immediately and she returned my call within minutes. She was instantly distracted by my voice and concerned about my current well being. Their plan included a chest CT and more lab work which she insisted be done immediately. She explained that with my eosinophils so high, my cardiac/medical history, & chest pains + feeling crummy while still on meds it was simply too risky to wait until Monday. The rest of the plan includes an upper GI, a stomach biopsy and a possible bone marrow biopsy. She said if the doctors here don't seem to be getting things figured out after these steps, she wants me to come back out to National Jewish again...
I just don't know anymore, I don't know how I feel, what I'm going to do, where I'm going to be...I've gone back to my old ways of lying to nearly everyone. I can't tell people how bad I really feel~I just do everything I can to fake it through the day. I'm done, I'm just done. I don't know what to do about anything right now...
Friday, May 13, 2011
thankful
Sometimes I meet people on this journey that I am immediately thankful for. You know, the kind of people you'll probably never have a chance to be friends with, or get to know on a personal level, but that you wish you could. Today, I had a follow up appointment with Dr. Hughes and he was interested in trying to help my eosinophilia. I was excited & welcomed any help or ideas. He introduced me to RaeJean, the office manager, who could meet with me and gather information. She was one of those special people.
For at least an hour, she and I sat in a tiny office while she scrolled through my entire (Central Baptist) medical history on a laptop. She was searching for any tiny loophole to use to make me eligible for the medication Xolair. Doctors have been trying to get me on this medicine for years and I have never qualified. You have to have severe asthma, a failed spirometry, and a IGe level above 30. (My level is 8). She didn't find an answer yet, but she did seem to form a remarkably strong bond with me. She was startled by some of the things in my history. As she read she would ask for details or praise me for my perseverence. I could tell that she was determined to help me. She even asked for Dr. Olson's phone number so she could get more information on my missing medical history. She promised to call me as soon as she had news to share. She made me feel like there is a chance again that something could help me. I am so thankful for RaeJean. She has already made such a difference in my life. :)
For at least an hour, she and I sat in a tiny office while she scrolled through my entire (Central Baptist) medical history on a laptop. She was searching for any tiny loophole to use to make me eligible for the medication Xolair. Doctors have been trying to get me on this medicine for years and I have never qualified. You have to have severe asthma, a failed spirometry, and a IGe level above 30. (My level is 8). She didn't find an answer yet, but she did seem to form a remarkably strong bond with me. She was startled by some of the things in my history. As she read she would ask for details or praise me for my perseverence. I could tell that she was determined to help me. She even asked for Dr. Olson's phone number so she could get more information on my missing medical history. She promised to call me as soon as she had news to share. She made me feel like there is a chance again that something could help me. I am so thankful for RaeJean. She has already made such a difference in my life. :)
Monday, May 9, 2011
eosinophilia
Good news, good news ~ the fight was on this weekend! By the Grace of God my weak body began to make a come back and started fighting to recover! Whoo hoo! I'm still not there, but can already feel such a difference. I am finally starting to feel better. I will beat staph before round three is over. :)
At rehab today, Kristy rushed around the corner to check in on me. She was so excited to see that I was finally on the right track. It's so great to have doctors on my team who are so dedicated to making sure that I get better. She grabbed my shoulders and said, "Now Toni, PLEASE, just don't catch anything else for the rest of this week! You must let yourself get well before you start getting sick again."
I kind of laughed at first, then I could tell she seemed a bit upset. She lifted the papers in her hand and got very serious. My lab results had just come in and my eosinophil count had jumped from 1334 to over 3000. She seemed very concerned and frustrated. She said she had just gotten off the phone with Dr. Thompson and he was also concerned. He was planning to call Dr. Olson tonight to brainstorm next steps for me. She said they're at a complete loss as to what is causing the increase. I have to remain on the high dose of steroids until they figure something out. He wants me to come back in next Friday because he hopes he and Dr. Olson will have a plan by then.
I have to admit, I teared up when Kristy was talking with me. Honestly though, it wasn't because I was scared about what could be wrong. It was because I was exhausted. I'm so tired of information that leads to dead ends. I'm so tired of the weird results that no one knows what to do with. The rollercoaster is wearing me out. It's just getting so hard to "handle" the information like I want to. I wish I was a stronger person.
At rehab today, Kristy rushed around the corner to check in on me. She was so excited to see that I was finally on the right track. It's so great to have doctors on my team who are so dedicated to making sure that I get better. She grabbed my shoulders and said, "Now Toni, PLEASE, just don't catch anything else for the rest of this week! You must let yourself get well before you start getting sick again."
I kind of laughed at first, then I could tell she seemed a bit upset. She lifted the papers in her hand and got very serious. My lab results had just come in and my eosinophil count had jumped from 1334 to over 3000. She seemed very concerned and frustrated. She said she had just gotten off the phone with Dr. Thompson and he was also concerned. He was planning to call Dr. Olson tonight to brainstorm next steps for me. She said they're at a complete loss as to what is causing the increase. I have to remain on the high dose of steroids until they figure something out. He wants me to come back in next Friday because he hopes he and Dr. Olson will have a plan by then.
I have to admit, I teared up when Kristy was talking with me. Honestly though, it wasn't because I was scared about what could be wrong. It was because I was exhausted. I'm so tired of information that leads to dead ends. I'm so tired of the weird results that no one knows what to do with. The rollercoaster is wearing me out. It's just getting so hard to "handle" the information like I want to. I wish I was a stronger person.
Thursday, May 5, 2011
Fighting Staph
Sadly, Dr. Thompson was right. I was getting a sinus infection. I toughed it out until it got the best of me a week later. Joelle talked with the doctors and they called in a prescription for Bactrim on Wednesday, April 20th. It hasn't worked in the past, but I thought it was worth another try. I was feeling pretty bad and my big Heart Walk was scheduled for Saturday morning! I was so determined to walk no matter how I felt! Unfortunately (& slightly for the best) it was cancelled due to thunderstorms. I spent the rest of the weekend fighting to feel better without much success.
That week I did continue to get worse and had appointments with both the pulmonologist and the ENT. Test results revealed that the infection was staph in my sinuses. My antibiotic was changed and other meds were added. They seemed confident it would take care of the infection. Other test results were also in. My eosinophils were higher than before ~ 1334 now but all the tests for what could cause the increase were negative. Dr. Thompson was at a loss. He told me to stop taking Singulair because it has been known to increase eosinophils in some studies.
Today was my last day of Levaquin and my symptoms have been getting worse. Dr. Thompson is out of town, so I made an appointment with Kristy. She said the staph infection has spread to my lungs which certainly isn't a good thing. There were some patches on my x-ray and my lung function was below 40%. She prescribed a new antibiotic and increased the steroids. She also took some blood to check my eosinophils again and do another CBC. She's going to check in on me at rehab Monday. Hopefully these changes will do the trick, if not, she said the next step will be the hospital.
Here's to high hopes and much faith that some staph will be beat down in my body this weekend. :)
That week I did continue to get worse and had appointments with both the pulmonologist and the ENT. Test results revealed that the infection was staph in my sinuses. My antibiotic was changed and other meds were added. They seemed confident it would take care of the infection. Other test results were also in. My eosinophils were higher than before ~ 1334 now but all the tests for what could cause the increase were negative. Dr. Thompson was at a loss. He told me to stop taking Singulair because it has been known to increase eosinophils in some studies.
Today was my last day of Levaquin and my symptoms have been getting worse. Dr. Thompson is out of town, so I made an appointment with Kristy. She said the staph infection has spread to my lungs which certainly isn't a good thing. There were some patches on my x-ray and my lung function was below 40%. She prescribed a new antibiotic and increased the steroids. She also took some blood to check my eosinophils again and do another CBC. She's going to check in on me at rehab Monday. Hopefully these changes will do the trick, if not, she said the next step will be the hospital.
Here's to high hopes and much faith that some staph will be beat down in my body this weekend. :)
Tuesday, May 3, 2011
Tough Decisions
Friday, Dr. Olson called. She was the third doctor of the week to have a serious conversation with me about my job. Talk about a strong message. :( All three of them talked with me about what working around children is doing to my health. How I am stronger in the summer and sick again each time I go back to work after a break. It's getting harder for me to fight off infection and viruses even with stronger medicines. Hearing it for the third time was tough. I've been ready to do so much ~ even pack up and move to Denver, but give up my classroom...my students...
Dr. Olson talked to me sincerely about it. She asked about other options in the school. She thought that an intervention type position would be the best option from a medical standpoint for my health. In that position, I wouldn't be exposed to germs and illness as heavily as a classroom teacher. I would only work with small groups of children at a time and in a more controlled environment.
Since this conversation, I've talked with Leigh Ann and have started the medical accommodations paperwork with human resources at central office. I know it's what has to happen because I can't physically continue to teach until I am better. Stacey, Debbie, Leigh Ann, & my family are the only people I've told. So many things have been running though my head. I feel like a liar each time I have to work on something for the 2nd grade team for next year. I don't know what is going to happen because there isn't an intervention position at our school right now. What I do know is that my heart is absolutely crumbling inside. I love things about my job that so many classroom teachers hate. I start crying each time I think about packing up my room, making classlists, or typing summer letters. I have dreamed of retiring as a classroom teacher. I feel like such an enormous failure in my life. It is so frustrating to not be able to take medicine and just get better. I look back now and wonder where I went wrong.
I still have to believe things are going to get better and I know this is All For Good or I wouldn't agree to it. I have to believe. I also know that I can and will be an amazing intervention teacher. The thing is, right now, it's tough, and it really hurts...
Dr. Olson talked to me sincerely about it. She asked about other options in the school. She thought that an intervention type position would be the best option from a medical standpoint for my health. In that position, I wouldn't be exposed to germs and illness as heavily as a classroom teacher. I would only work with small groups of children at a time and in a more controlled environment.
Since this conversation, I've talked with Leigh Ann and have started the medical accommodations paperwork with human resources at central office. I know it's what has to happen because I can't physically continue to teach until I am better. Stacey, Debbie, Leigh Ann, & my family are the only people I've told. So many things have been running though my head. I feel like a liar each time I have to work on something for the 2nd grade team for next year. I don't know what is going to happen because there isn't an intervention position at our school right now. What I do know is that my heart is absolutely crumbling inside. I love things about my job that so many classroom teachers hate. I start crying each time I think about packing up my room, making classlists, or typing summer letters. I have dreamed of retiring as a classroom teacher. I feel like such an enormous failure in my life. It is so frustrating to not be able to take medicine and just get better. I look back now and wonder where I went wrong.
I still have to believe things are going to get better and I know this is All For Good or I wouldn't agree to it. I have to believe. I also know that I can and will be an amazing intervention teacher. The thing is, right now, it's tough, and it really hurts...
Friday, April 15, 2011
Let's run some more tests...
Friday - yay! I did make it through my first week back! I woke up feeling a bit chilled and achy, but blamed it on it being the end of a long week and moved on. I left work at lunch because I had a pulmonology appointment/lung function tests with Dr. Thompson today. I felt exhausted and a bit congested so with an hour to spare before the appointment I went home and rested a while hoping to shake off whatever was slowing me down.
My PFTs actually went pretty well! When I got back to the exam room and the nurse took my temp, she asked how I was feeling. I told her I was okay, just feeling a bit drained and congested. I had a low grade temp of 99.8. I was so frustrated when she told me. I had only worked 4 1/2 days and was getting sick again! I'm so tired of handling this. I stayed calm though, waited for Dr. Thompson, and heard him out.
He reviewed my kidney function tests first. The aspirin is so important that we're not going to change anything for now. He's just going to continue to monitor the kidney function regularly and make changes if things get worse.
He said it appears as though I'm getting another sinus infection. He seemed as sad and frustrated as I am. He apologized for not knowing how to help my sinuses and that the surgery didn't seem to help. As far as the high eosinophil count, he discussed the possible causes and wanted to run some more tests to narrow the field. He also wanted to check for some other diseases and problems that could manifest with pulmonary symptoms. He ordered more labwork and said he would call me when it comes back.
Talk about perfect timing and dear friends though ~ this card from Linda was waiting for me at the end of the day. :)
My PFTs actually went pretty well! When I got back to the exam room and the nurse took my temp, she asked how I was feeling. I told her I was okay, just feeling a bit drained and congested. I had a low grade temp of 99.8. I was so frustrated when she told me. I had only worked 4 1/2 days and was getting sick again! I'm so tired of handling this. I stayed calm though, waited for Dr. Thompson, and heard him out.
He reviewed my kidney function tests first. The aspirin is so important that we're not going to change anything for now. He's just going to continue to monitor the kidney function regularly and make changes if things get worse.
He said it appears as though I'm getting another sinus infection. He seemed as sad and frustrated as I am. He apologized for not knowing how to help my sinuses and that the surgery didn't seem to help. As far as the high eosinophil count, he discussed the possible causes and wanted to run some more tests to narrow the field. He also wanted to check for some other diseases and problems that could manifest with pulmonary symptoms. He ordered more labwork and said he would call me when it comes back.
Talk about perfect timing and dear friends though ~ this card from Linda was waiting for me at the end of the day. :)
Tuesday, April 12, 2011
A Long Year
Dr. Olson called tonight and I just broke down crying after I hung up the phone. She has to have one of the most comforting voices ever. She was concerned about a report from Dr. Thompson and wanted to check in on me. She wanted more information. Through our conversation I found out that my eosinophil count was up to 1000 at my last labs. That was very disheartening. I also just found out that my kidney function is elevated because of the high dosage of aspirin I'm on. Of course she was on top of everything talking about possible plans of action. She asked me to fax the CBC to her as soon as possible so she could see it for herself. She also wants me to call her Thursday with the pathology report from the sinus surgery. The last thing she said to me was, "there are good things we can still do. I want to talk to you at the end of the week."
My first day at National Jewish was one year ago today. That's kind of been in the back of my mind all day. The memories of that first day and week have been popping in and out of my head. I've been tired back at work this week, but hopeful because my peak flows have been strong. It all came flooding to the surface when I found out about the eosinophil count. I know it's not the end of the world by any means. It just hit me that it's been a long year. It's just been a long year. I'm so blessed to have such amazing doctors on my side.
My first day at National Jewish was one year ago today. That's kind of been in the back of my mind all day. The memories of that first day and week have been popping in and out of my head. I've been tired back at work this week, but hopeful because my peak flows have been strong. It all came flooding to the surface when I found out about the eosinophil count. I know it's not the end of the world by any means. It just hit me that it's been a long year. It's just been a long year. I'm so blessed to have such amazing doctors on my side.
Tuesday, March 29, 2011
Just another surgery???
I was surprisingly calm before the surgery. I was actually quite proud of myself! :) It was supposed to start at 9:30 but they didn't even call be back for prep until almost 11:00. Everything went smoothly. Dr. Hughes came out and spoke with Mom afterwards. He said the prayers worked because the bleeding wasn't nearly as much of a problem as he expected considering my dosage of aspirin! That was wonderful news!
Everything has gone as expected so far. He operated on the sinuses around my eyes and forehead so that's obviously where most of the pain has been. I have a follow up appointment with him next Friday. Hopefully they'll have the lab results with the eosinophil counts by then. Maybe this really will be the big answer...
Friday, March 25, 2011
Thursday, March 24, 2011
I understand what you're saying
More appointments...today I had to miss school again because I had four separate appointments scheduled. I can't let myself think about it though. When I do, I get to where I can't catch my breath. That doesn't help anything. So instead, I just do what I have to do and push through, processing when I'm ready.
The first appointment was with rheumatologist, Dr. Jeffrey Neal. He was very informative. He explained all about how I am in the high risk catagories for developing an auto-immune disease. Much to his surprise, I understood everything he was saying. He wants to continue to monitor me every few months for the next several years. He also discussed concerns & treatment plan about my bone density due to the years of steroids. Our final topic was very intriguing! He explained the possibility of using the drug methotrexate as a new treatment for my refractory asthma. It is well known as a chemotherapy drug but in small doses has been used in patients for which other asthma meds have been unsuccessful. Dr. Neal said he would work with Dr. Thompson to monitor the dosage of the drug. The side effects could be intense, but it could be the right treatment plan for me.
From that appointment, I went to a very frustrating session with Wafa working on VCD. She is wonderful, but since I am still recovering from pneumonia, I guess my vocal cords just weren't up to being challenged. Sadly this was my last session with her because she's going on maternity leave next week. I'm really going to miss working with her!
At the pulmonologist I learned that methotrexate is not something to get excited about right now. Dr. Thompson was a bit leary about the strength and the side effects of the drug and said we should save it for a later option. He agreed that it was something to keep in mind, but that we should wait to see how the sinus surgery works out first. I understood what he was saying. He also shared the results of the lab work they ran while I was in the hospital last week. My IGg level was a lot lower than it was back in February. This news is kind of a blow because we had all hoped it was going up. I didn't qualify for the IVIg therapy. All in all this means that I have an IGg deficiency but can't be treated for it. That stinks. :( Dr. Thompson and Kristy were both in the room talking with me. They said maybe it's time to change our expectations. ~For example...my lungs are still recovering and I'm still a bit run down, but what if we called today's lung function pretty good?? I sure didn't like the idea. Actually, just listening to them talk was crushing. I understood what they were saying though.
I'm not giving up hope because my doctors are frustrated. I know God is still in this and whatever the outcome, it will be all for good. I understand that this is way bigger than me!
The first appointment was with rheumatologist, Dr. Jeffrey Neal. He was very informative. He explained all about how I am in the high risk catagories for developing an auto-immune disease. Much to his surprise, I understood everything he was saying. He wants to continue to monitor me every few months for the next several years. He also discussed concerns & treatment plan about my bone density due to the years of steroids. Our final topic was very intriguing! He explained the possibility of using the drug methotrexate as a new treatment for my refractory asthma. It is well known as a chemotherapy drug but in small doses has been used in patients for which other asthma meds have been unsuccessful. Dr. Neal said he would work with Dr. Thompson to monitor the dosage of the drug. The side effects could be intense, but it could be the right treatment plan for me.
From that appointment, I went to a very frustrating session with Wafa working on VCD. She is wonderful, but since I am still recovering from pneumonia, I guess my vocal cords just weren't up to being challenged. Sadly this was my last session with her because she's going on maternity leave next week. I'm really going to miss working with her!
At the pulmonologist I learned that methotrexate is not something to get excited about right now. Dr. Thompson was a bit leary about the strength and the side effects of the drug and said we should save it for a later option. He agreed that it was something to keep in mind, but that we should wait to see how the sinus surgery works out first. I understood what he was saying. He also shared the results of the lab work they ran while I was in the hospital last week. My IGg level was a lot lower than it was back in February. This news is kind of a blow because we had all hoped it was going up. I didn't qualify for the IVIg therapy. All in all this means that I have an IGg deficiency but can't be treated for it. That stinks. :( Dr. Thompson and Kristy were both in the room talking with me. They said maybe it's time to change our expectations. ~For example...my lungs are still recovering and I'm still a bit run down, but what if we called today's lung function pretty good?? I sure didn't like the idea. Actually, just listening to them talk was crushing. I understood what they were saying though.
I'm not giving up hope because my doctors are frustrated. I know God is still in this and whatever the outcome, it will be all for good. I understand that this is way bigger than me!
Tuesday, March 22, 2011
Time to Deal
Well, I did get released from the hospital Friday afternoon. I spent the weekend recovering and working on report cards. I'm still getting over the pneumonia so I've only been working mornings. I did go to pulmonary rehab yesterday. I was able to get through everything but was pretty beat when I left. This afternoon I had the follow up appointment with Dr. Hughes, my ENT to discuss sinus surgery.
I've known about this appointment for over a month now, but haven't been able to let myself deal with the thought of having another surgery even if it is just on my sinuses. So, in my own special way, I have completely avoided thinking about it until today. On my way to the office I really started to fall apart. You would think that after open heart surgery, the thought of any other type of surgery would be cake but for some reason it's not working out that way for me. My body is going into serious panic mode and I can't control it! I don't even know what I'm scared of, it's just an unconscious reaction that I have to get a handle on.
Dr. Hughes said my sinuses were worse than he had previously thought and that the surgery was very necessary. It would be a more complicated surgery than he had first expected because of the high dose of aspirin I am taking and the sinus problems he'll be repairing. He also let me know that my recovery time would be longer because of my health complications and the aspirin. The most important thing is that he believes it will help me to have fewer asthma symptoms and fewer infections in the future.
Sometimes I feel so smothered by the things I'm dealing with lately that I start to doubt the good that I know will come. It's time to deal with this surgery and take back the hope that I am going to be well. Maybe this surgery could be the missing puzzle piece my body needs to fully recover.
I've known about this appointment for over a month now, but haven't been able to let myself deal with the thought of having another surgery even if it is just on my sinuses. So, in my own special way, I have completely avoided thinking about it until today. On my way to the office I really started to fall apart. You would think that after open heart surgery, the thought of any other type of surgery would be cake but for some reason it's not working out that way for me. My body is going into serious panic mode and I can't control it! I don't even know what I'm scared of, it's just an unconscious reaction that I have to get a handle on.
Dr. Hughes said my sinuses were worse than he had previously thought and that the surgery was very necessary. It would be a more complicated surgery than he had first expected because of the high dose of aspirin I am taking and the sinus problems he'll be repairing. He also let me know that my recovery time would be longer because of my health complications and the aspirin. The most important thing is that he believes it will help me to have fewer asthma symptoms and fewer infections in the future.
Sometimes I feel so smothered by the things I'm dealing with lately that I start to doubt the good that I know will come. It's time to deal with this surgery and take back the hope that I am going to be well. Maybe this surgery could be the missing puzzle piece my body needs to fully recover.
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