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!
Thursday, June 30, 2011
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 |
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