Those are heavy words to hear in a wrap up visit one hour before I have to rush to the airport. That's how it went though. Dr. Olson walked in saying those exact words. She was so relieved. She hugged me with tears in her eyes as she said it again with delight, "you don't have eosinophilic leukemia". She and Dr. Katial had been very concerned that it would be my diagnosis. It's not though!! (Let me tell ya though, even with the word NOT included, those words have a pretty hard impact when they're applied so close to home.) That's by far the biggest blessing of the week though! It's definitely something to celebrate. The preliminary results of the bone marrow biopsy are all they have so far, and all they know for certain is that it is NOT leukemia.
The next step is to wait. The rest of the results from the biopsy will be in by the middle of next week. Dr. Olson explained their expectations. It could be hypereosinophilic syndrome, Churg Strauss Syndrome, or terrible intrinsic asthma with high eosinophil counts. Regardless of the diagnosis, she said my treatment options have to change. Steroids do not work for my body anymore and have caused too much damage. There are chemo treatments or other therapies/antibodies they are going to try once a diagnosis is in place. Two of the possibilities are hydroxyurea or anti-interleukin-5 (IL5). She didn't go into details about prognosis or treatments for any of the possible outcomes. She said it would be best to discuss details when we know which one we are dealing with. As soon as the hospital calls with the results, all the doctors that treated or consulted on my case this week are going to have an interdisciplinary conference to create my treatment plan. She said she'll call as soon as she has any information.
That was the big news. On a smaller scale, she said tests confirmed I have an internal staph infection again. By Monday she will know which antibiotic she can prescribe for it and will call me with that information. We also discussed the dangerously low level of my current lung function and the fact that I'm heading back into a high risk environment Monday by going back to work. We were both concerned that I spiral downward too quickly before we will have time to get the new treatments started. She prescribed antibiotics and prednisone to get me back on track and stable.
She also increased my current asthma medications and added azithromycin, the antibiotic, three days per week. She said it would help to decrease lung inflammation. Many of the other tests from the week are still pending, so all of that information will also come later. For now, I'm thankful that I don't have leukemia and waiting hopefully to find out how to treat what I do have.
Saturday, July 30, 2011
Friday, July 29, 2011
the real me
What a week. Even though I am recounting these events daily, it's simply impossible for me to express what's really been going on inside me. I just won't allow myself time to process the gravity of what I've been through. I've adapted so strictly to the art of pushing through that I don't even know how to be truthful to myself about pain and weakness and even fear. I don't want to take the time to slow down and fall apart. I just want to believe that it's going to work out, and move forward with life. All in all that is a good plan and I truly believe that it is part of why I'm alive today. At the same time, I'm starting to recognize it's flaws. My illnesses, pain, weaknesses, and fears may not define me, but they are part of me and have definitely played a huge role in making me who I am today. Maybe instead of denying these parts of me, I need to start owning them.
The title of this blog is All for Good. That came from my belief that God can use everything for His Good. I have always known that in some way for some reason and somehow, all that I have experienced and lived through (no matter how yucky) would be worthwhile because in someway Good would come to someone because of it. I have been content even peace-filled about that. Maybe there's even more to it though...maybe it's time to become a little more accepting and own what I've been through. I've realized that by denying these parts of myself, I've been denying Good God has for me. I should be experiencing everything in my life~the good, the bad, and the ugly. It's all adding to the complicated mess of a project that I am.
I don't want to become a whiner, but I at least must learn to be real with myself. I can't continue to push past everything. This week was real and I need to be able to admit that it was unbelieveably tough. Each day was so packed with painful, exhausting tests and doctors relaying overwhelming news. Looking back, I know the only reason I made it through was because of prayers. This is the gift of my life...I am ready to own it. I am thankful beyond words for every test, doctor, nurse, and experience that I had this week. As hard as it was, I still loved being there because it was obvious that they ALL wanted to help me.
So I guess this means when I lay down tonight, I just might cry a little when I think about having to say yes to a third bone marrow biopsy. I also might chuckle when I think about my leg muscle cramping during the sleep study and I was afraid LaTasha, the tech would think I was thrashing about wildly on the video. Then I'll smile when I remember how Dr. Olson lit up and hugged me when she saw me in the hallway on Monday morning for the first time. And all of these emotions and more will be okay because they are part of me...christian, daughter, friend, asthmatic, dog lover, teacher, congenital heart disease, sister, undefined illness, althogether & more...the real me.
The title of this blog is All for Good. That came from my belief that God can use everything for His Good. I have always known that in some way for some reason and somehow, all that I have experienced and lived through (no matter how yucky) would be worthwhile because in someway Good would come to someone because of it. I have been content even peace-filled about that. Maybe there's even more to it though...maybe it's time to become a little more accepting and own what I've been through. I've realized that by denying these parts of myself, I've been denying Good God has for me. I should be experiencing everything in my life~the good, the bad, and the ugly. It's all adding to the complicated mess of a project that I am.
I don't want to become a whiner, but I at least must learn to be real with myself. I can't continue to push past everything. This week was real and I need to be able to admit that it was unbelieveably tough. Each day was so packed with painful, exhausting tests and doctors relaying overwhelming news. Looking back, I know the only reason I made it through was because of prayers. This is the gift of my life...I am ready to own it. I am thankful beyond words for every test, doctor, nurse, and experience that I had this week. As hard as it was, I still loved being there because it was obvious that they ALL wanted to help me.
So I guess this means when I lay down tonight, I just might cry a little when I think about having to say yes to a third bone marrow biopsy. I also might chuckle when I think about my leg muscle cramping during the sleep study and I was afraid LaTasha, the tech would think I was thrashing about wildly on the video. Then I'll smile when I remember how Dr. Olson lit up and hugged me when she saw me in the hallway on Monday morning for the first time. And all of these emotions and more will be okay because they are part of me...christian, daughter, friend, asthmatic, dog lover, teacher, congenital heart disease, sister, undefined illness, althogether & more...the real me.
Day Five~down to the wire
I woke up very early today...well, who am I kidding, I'm not sure if I really even slept??? This is it. As much as I want to stay here forever, as torn as I am about leaving with results pending~this is it. Our flight leaves Denver today at 6:10 and I'm pretty sure that I'll be on it. It's down to the wire and I don't only feel that sense of urgency within myself, but I feel it coming from Dr. Olson too. My schedule is jam packed today with everything else that she anticipates needing in order to diagnose me and develop a treatment plan. I approached the day filled with the clashing combination of anxiety and hope.
We completed the rental apartment check-out list, loaded the car, and headed around the corner to National Jewish. My first appointment was in radiology for a neck CT. It looks like the VCD is still cutting off my airway according to PFTs. The CT will make sure it is VCD and not damage from when I was intubated in the past. (The scan was normal - so it is the VCD I'm still fighting)
Next I had a Nutrition consult. Every doctor I've seen this week has been extremely concerned about my weight loss. My current weight is fine, but the problem is that the weight loss has been unintentional. Weight is something that I have never been one to talk about or point out (loss or gain) - on myself or anyone else. I'm just very uncomfortable with the subject. I've never been a huge eater, but gained weight like crazy anyway when I was put on such high doses of steroids long term. When I was finally off them in November, I suddenly started losing weight. I assumed that was the reason. Apparently there's more to it than that. They think it's a combination of natural loss and a possible adrenal insufficiency. The nutrionist and Dr. Olson talked to me about taking measures to not lose any more weight - how bizarre. They even connected it to impacting my illness. I trust Dr. Olson so much, but this one is definitely harder for me to grasp.
With nutrition concerns spinning in my head, I sprinted upstairs to the MIDC (minimally invasive diagnostic center) for my cosyntropin stimulation test which is the adrenal insufficiency test. It involved an IV and a lot of down time. Nurse Jennifer was administering the test but to my delight Deb (from Tuesday) was training her! They had to draw blood, inject cortisol, and draw blood again periodically. As time passed they would come in and out of the room to chat as they had time. Deb shared stories about crazy tunnels beneath National Jewish that led across Colorado Blvd and creepy chambers in the old TB wards. Seth, one of the nurses I had back in April & May even stopped in to catch up. I just adore these wonderful people. :)
I met with Dr. Musani next, an interventional pulmonologist. This meeting was informational more than anything. Dr. Olson wanted him to talk with me about the possibility of bronchial thermoplasty. It's a series of procedures over a six week time period where the doctor uses heat to reduce the smooth muscle in the airways of the lungs. This reduces their ability to constrict causing fewer asthmatic episodes. The problem in my case is that it is best suited only for patients with severe uncontrolled asthma, but are healthy in all other ways. My heart, sinuses, and high eosinophil count rule out the possibility of this treatment for now - but he said it could be an option in the near future.
On to rheumatology with Dr. Maleki ~ I really liked her a lot. This appointment was very long. She spent most of the time going step by step through symptoms of an autoimmune disease that she and Dr. Olson are looking at as a possible diagnosis for me. Churg Strauss Syndrome is so rare it only effects 10 in a million people. It presents as late onset asthma, heart defects, tingling or numbness in the extremities, and rashes. Dr. Maleki isn't certain that it fits me because I don't have the rashes. She's waiting for the bone marrow biopsy for more information. She ordered a few more labs and sent me on my way for the final wrap up with Dr. Olson.
We completed the rental apartment check-out list, loaded the car, and headed around the corner to National Jewish. My first appointment was in radiology for a neck CT. It looks like the VCD is still cutting off my airway according to PFTs. The CT will make sure it is VCD and not damage from when I was intubated in the past. (The scan was normal - so it is the VCD I'm still fighting)
Next I had a Nutrition consult. Every doctor I've seen this week has been extremely concerned about my weight loss. My current weight is fine, but the problem is that the weight loss has been unintentional. Weight is something that I have never been one to talk about or point out (loss or gain) - on myself or anyone else. I'm just very uncomfortable with the subject. I've never been a huge eater, but gained weight like crazy anyway when I was put on such high doses of steroids long term. When I was finally off them in November, I suddenly started losing weight. I assumed that was the reason. Apparently there's more to it than that. They think it's a combination of natural loss and a possible adrenal insufficiency. The nutrionist and Dr. Olson talked to me about taking measures to not lose any more weight - how bizarre. They even connected it to impacting my illness. I trust Dr. Olson so much, but this one is definitely harder for me to grasp.
With nutrition concerns spinning in my head, I sprinted upstairs to the MIDC (minimally invasive diagnostic center) for my cosyntropin stimulation test which is the adrenal insufficiency test. It involved an IV and a lot of down time. Nurse Jennifer was administering the test but to my delight Deb (from Tuesday) was training her! They had to draw blood, inject cortisol, and draw blood again periodically. As time passed they would come in and out of the room to chat as they had time. Deb shared stories about crazy tunnels beneath National Jewish that led across Colorado Blvd and creepy chambers in the old TB wards. Seth, one of the nurses I had back in April & May even stopped in to catch up. I just adore these wonderful people. :)
I met with Dr. Musani next, an interventional pulmonologist. This meeting was informational more than anything. Dr. Olson wanted him to talk with me about the possibility of bronchial thermoplasty. It's a series of procedures over a six week time period where the doctor uses heat to reduce the smooth muscle in the airways of the lungs. This reduces their ability to constrict causing fewer asthmatic episodes. The problem in my case is that it is best suited only for patients with severe uncontrolled asthma, but are healthy in all other ways. My heart, sinuses, and high eosinophil count rule out the possibility of this treatment for now - but he said it could be an option in the near future.
On to rheumatology with Dr. Maleki ~ I really liked her a lot. This appointment was very long. She spent most of the time going step by step through symptoms of an autoimmune disease that she and Dr. Olson are looking at as a possible diagnosis for me. Churg Strauss Syndrome is so rare it only effects 10 in a million people. It presents as late onset asthma, heart defects, tingling or numbness in the extremities, and rashes. Dr. Maleki isn't certain that it fits me because I don't have the rashes. She's waiting for the bone marrow biopsy for more information. She ordered a few more labs and sent me on my way for the final wrap up with Dr. Olson.
Thursday, July 28, 2011
Day Four ~ still amazed
Bike day - da dun da dun dadundadundadun! It's been such a traumatic and paralyzing thought to me that it's as if the Jaws music is playing in the background!! I don't know how I could have been more prepared. I dressed in my favorite Heart walk shirt :) and marched on to the third floor. My muscles tensed as I neared the check-in desk. Erin, the technician was ready and waiting for me (of course)! We went to the familiar room and she asked me to sit in the blood draw chair - eek.
Deep breath - I know this will be different I thought to myself...a man whose name I honestly blacked out came in and started working on my wrist for the arterial line. He had no luck. He tried three times. He became quite frustrated with my tense, trembling muscles and finally gave up. Brenda, the respiratory therapist jumped in to give it a whirl. She gave it good digging - gouging try with great effort, but no success. Throughout the process I was hinting and blatantly requesting that they get Tom to do it. He seems to be able to work with me like magic. Finally, they gave in. They returned to the room with Debbie (Bowdy- my friend) & Tom. I was instantly relieved! He smiled at me, asked for a hand warmer, and cleared the other therapists from the room. He placed in on my ice cold wrist and hand and waited patiently while he chatted with us (mostly Debbie - I wasn't so chatty at the time). He turned my wrist and calmly went to work. He took his time and successfully set up the IV in my artery. After drawing the first blood gas he called the others back into the room. We were finally able to move on with the test smoothly. Ten minutes later it was over. The nightmare had ended! Erin said my exercise tolerance was exceptional considering my lung function. I decided to mark that in the positive column and leave the third floor as quickly as possible. ;)
I had exactly ten minutes to change my clothes and check in on the first floor for my ENT appointment with Dr. Ramakrishna. I was shocked when he walked into the room because Dr. Olson was with him. She said she was concerned about the role my sinus disease was playing in my illness and wanted to be part of the appointment in person. (Wow) The consult revealed what he believed to be a staph infection in my sinuses and that I'll need another sinus surgery in the future. This time they strongly suggested that I have the surgery in Denver with Dr. Ramakrishna. They explained that I need a surgeon that specializes in complicated cases and treats them on a regular basis.
Cardiology was the focus for the afternoon. I had an ECG (which is the new acronym for EKG) first. At three o'clock I met with my cardiologist, Dr. Fenster. He explained the results from the bubble saline stress test I completed in February. (We didn't get to meet at that time). My heart was in great condition. The repair appeared to be a complete success. There was some evidence of bubble transfer between my lungs though. He said this was really nothing for me to worry about though, it was more diagnostic information for the doctors. It simply reveals that I have severe lung disease of some form-which we all know. :) Next, he discussed his and Dr. Olson's concern about my weight loss. He asked questions about my changes in taste since the heart surgery and let me know they are scheduling an adrenal insufficiency test. It will note any problems with my adrenal glands since the adrenal crisis which could be causing the unintentional weight loss.
At four o'clock I headed across the hall for an ECHO. Dr. Fenster explained that he ordered this ECHO to check for signs of eosinophils infiltrating the heart. He said he would review the test later this evening and consult with Dr. Olson tomorrow.
As we left, I had a call from my scheduler, Jennifer, so we stopped by to see her. She let me know that Dr. Olson had just called her and ordered more tests and consults for Friday. She still has one more test to fit in and at this point I only have one hour left open in the whole day! That doesn't allow much room for compromise! I know it will happen though - I have no worries. What I do have is awe. I am so blessed to be in this place. This is my fifth separate visit to National Jewish and I am still amazed at how wonderful it is. How often do you go to an appointment with two of your doctors collaborating in the same exam room because they want what's best for you?
Deep breath - I know this will be different I thought to myself...a man whose name I honestly blacked out came in and started working on my wrist for the arterial line. He had no luck. He tried three times. He became quite frustrated with my tense, trembling muscles and finally gave up. Brenda, the respiratory therapist jumped in to give it a whirl. She gave it good digging - gouging try with great effort, but no success. Throughout the process I was hinting and blatantly requesting that they get Tom to do it. He seems to be able to work with me like magic. Finally, they gave in. They returned to the room with Debbie (Bowdy- my friend) & Tom. I was instantly relieved! He smiled at me, asked for a hand warmer, and cleared the other therapists from the room. He placed in on my ice cold wrist and hand and waited patiently while he chatted with us (mostly Debbie - I wasn't so chatty at the time). He turned my wrist and calmly went to work. He took his time and successfully set up the IV in my artery. After drawing the first blood gas he called the others back into the room. We were finally able to move on with the test smoothly. Ten minutes later it was over. The nightmare had ended! Erin said my exercise tolerance was exceptional considering my lung function. I decided to mark that in the positive column and leave the third floor as quickly as possible. ;)
I had exactly ten minutes to change my clothes and check in on the first floor for my ENT appointment with Dr. Ramakrishna. I was shocked when he walked into the room because Dr. Olson was with him. She said she was concerned about the role my sinus disease was playing in my illness and wanted to be part of the appointment in person. (Wow) The consult revealed what he believed to be a staph infection in my sinuses and that I'll need another sinus surgery in the future. This time they strongly suggested that I have the surgery in Denver with Dr. Ramakrishna. They explained that I need a surgeon that specializes in complicated cases and treats them on a regular basis.
Cardiology was the focus for the afternoon. I had an ECG (which is the new acronym for EKG) first. At three o'clock I met with my cardiologist, Dr. Fenster. He explained the results from the bubble saline stress test I completed in February. (We didn't get to meet at that time). My heart was in great condition. The repair appeared to be a complete success. There was some evidence of bubble transfer between my lungs though. He said this was really nothing for me to worry about though, it was more diagnostic information for the doctors. It simply reveals that I have severe lung disease of some form-which we all know. :) Next, he discussed his and Dr. Olson's concern about my weight loss. He asked questions about my changes in taste since the heart surgery and let me know they are scheduling an adrenal insufficiency test. It will note any problems with my adrenal glands since the adrenal crisis which could be causing the unintentional weight loss.
At four o'clock I headed across the hall for an ECHO. Dr. Fenster explained that he ordered this ECHO to check for signs of eosinophils infiltrating the heart. He said he would review the test later this evening and consult with Dr. Olson tomorrow.
As we left, I had a call from my scheduler, Jennifer, so we stopped by to see her. She let me know that Dr. Olson had just called her and ordered more tests and consults for Friday. She still has one more test to fit in and at this point I only have one hour left open in the whole day! That doesn't allow much room for compromise! I know it will happen though - I have no worries. What I do have is awe. I am so blessed to be in this place. This is my fifth separate visit to National Jewish and I am still amazed at how wonderful it is. How often do you go to an appointment with two of your doctors collaborating in the same exam room because they want what's best for you?
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| Beautiful Downtown Denver |
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| Larimer Street |
Wednesday, July 27, 2011
Day Three ~ A Biopsy to Remember (times 3)
The big day was here. I've read about bone marrow biopsies and heard horror stories from people who've been through it. For some bizarre reason though, this morning, I was okay. I wasn't freaking out, I was surprisingly calm. I knew it needed to be done, and I knew I could handle it. I was ready.
We headed over to the University Hospital and checked in. Of course they needed to draw more blood right away - and chose to draw from the exact same over-abused spot. Next I was called to the back. They gave me ativan to help me relax. (honestly I didn't feel like I'd taken a thing). The nurse practitioner, Christy, asked me to lie on the table on my stomach. I was surprised to find out that I didn't even have to change into a hospital gown. :) (there's a positive). Hank, the friendly and calming nurse put on some music. They rolled down the waist of my jeans and started cleaning.
She started by putting pressure on the back of my left hip to find a spot on the bone that didn't seem to be hitting a nerve. She numbed the surface then went deeper to numb the bone. She drew out the aspirate first (the liquid marrow) from the bone. Next she began to drill or dig out the core (the hard bone) section. I'll admit this was a bit painful. Pain was shooting down my leg and up my back as she loosened the section of the core. Sadly, the first piece was too small. She had to go in at a second site on my left hip and try again for a larger core. I just pushed through knowing it was all for good and better health will come for me because of this.
When she finished, she asked me to roll over. I was all bandaged up and applying pressure to stop the bleeding. Hank and Christy were preparing the core and aspirate to send to the lab. There was a pause and an uncomfortable silence between the two of them. The needle tool the extracts the core had broken and would not release the piece of bone marrow from the tube. They couldn't get it out! They called for help from three other doctors. After thirty minutes of diligent effort they through in the towel. I told them I was willing to go through it again for a valid test sample. With shocked faces they praised my strength and prepared the surgical table to start again. This time she went in on my right hip. The extraction was successful and the tool released the core with ease (thank goodness)!
In the end today, I suppose you could say rather than one, I had three bone marrow biopsies ~ and I made it through just fine. I pray the information gleaned from this test will provide rich answers in Dr. Olson's quest to help me. What an experience to remember!
We headed over to the University Hospital and checked in. Of course they needed to draw more blood right away - and chose to draw from the exact same over-abused spot. Next I was called to the back. They gave me ativan to help me relax. (honestly I didn't feel like I'd taken a thing). The nurse practitioner, Christy, asked me to lie on the table on my stomach. I was surprised to find out that I didn't even have to change into a hospital gown. :) (there's a positive). Hank, the friendly and calming nurse put on some music. They rolled down the waist of my jeans and started cleaning.
She started by putting pressure on the back of my left hip to find a spot on the bone that didn't seem to be hitting a nerve. She numbed the surface then went deeper to numb the bone. She drew out the aspirate first (the liquid marrow) from the bone. Next she began to drill or dig out the core (the hard bone) section. I'll admit this was a bit painful. Pain was shooting down my leg and up my back as she loosened the section of the core. Sadly, the first piece was too small. She had to go in at a second site on my left hip and try again for a larger core. I just pushed through knowing it was all for good and better health will come for me because of this.
When she finished, she asked me to roll over. I was all bandaged up and applying pressure to stop the bleeding. Hank and Christy were preparing the core and aspirate to send to the lab. There was a pause and an uncomfortable silence between the two of them. The needle tool the extracts the core had broken and would not release the piece of bone marrow from the tube. They couldn't get it out! They called for help from three other doctors. After thirty minutes of diligent effort they through in the towel. I told them I was willing to go through it again for a valid test sample. With shocked faces they praised my strength and prepared the surgical table to start again. This time she went in on my right hip. The extraction was successful and the tool released the core with ease (thank goodness)!
In the end today, I suppose you could say rather than one, I had three bone marrow biopsies ~ and I made it through just fine. I pray the information gleaned from this test will provide rich answers in Dr. Olson's quest to help me. What an experience to remember!
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| Team of doctors attempting to save the core... |
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| still trying... |
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| one last idea...but no luck :( |
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| The core and the aspirate ready for the lab! |
Tuesday, July 26, 2011
Day Two ~ Spinning with Information
We woke to a beautiful Colorado morning! The skies were clear and bright and the air was crisp and calling us to enjoy it's wonder. What a place! I'm in love!
My first test was the ENO, which measures the amount of inflammation in my lungs. She called me back and reminded me that in February my score was 74. Dr. Olson wanted my score to be lower this time because the 74 meant I had a lot of inflammation in my airways in the winter.
No problem! I had this one covered! That was February when I was sick and now I've been quarentined from kids and people all summer. I was CERTAIN that the number would be super low! I took the test hopefully! Two minutes later a 234 popped up. I was certain that was a number that had to be converted. I asked if it was good - lower than 74??? She choked and said it showed massived amounts of inflammation. :( I took a breath and we tried again to see if the number remained consistent ~ 237. Wow - what a remarkable increase. Something is really going on with my body. I am so glad to be here in the capable hands of Dr. Olson.
After a short speech consult for vocal cord dysfunction, it was time for my appointment with Dr. Olson. I was filled with anxiety, impatience, hope, and confusion. I just want to give her everything she needs to help me to get on the right track. I went into the appointment alone because I tend to get so nervous with someone else in the room that I shut down and don't speak at all. I needed to speak.
Our time was priceless. She reviewed recent events to make sure she was up to date. She also asked a lot of questions about how I feel, how I'm dealing with things, what I do about problems. She was still waiting on most of the lab orders that Dr. Katial had sent, but a few were in. My eosinophils have gone from a high 1320 on July 7th to over 2200 now. They were also concerned about a few other results and wanted to discuss them together further to make a decision and a plan.
The sinus CT was a disaster. You couldn't even tell that I'd had sinus surgery four months ago. It it so frustrating. She immediatedly went to the other side of the building and found an ENT that she likes and made an appointment for me. She is insistent on getting to the bottom of my problems and helping me to have a wonderful life! She said she would be ordering more tests, talking with Dr. Katial, and getting back with me soon.
Soon must have meant very soon! She saw me in the hallway about an hour later and stopped me. She said they had spoken and she wanted me to go have a few more labs drawn and get a new schedule. She had added a few more appointments.
DanniLynn in the lab department laughed when she saw me again! It was my third blood draw today! They kept using the exact same site too because it is the only "good" vein in my arms. (ugh) After that, I headed to my GI appointment with Dr. Toribara. Surprise, surprise ~ he was simply wonderful. He was a delightful man. He acknowledged that his role was probably a small one in my complicated treatment plan. He explained how they were looking for possible silent reflux which has been documented to cause asthma symptoms. I don't have symptoms of reflux or any stomach symptoms at that, but I suppose it's better to go ahead and check everything.
To check for reflux, they use a terribly uncomfortable device called an impedence pH probe. It's a wire that is run from the nose to the top of the stomach and has to stay there for 24 (miserable) ;) hours! I know, I know! There are totally worse things in the world - but I will say that this thing stinks!! It totally makes you feel like you're gagging constantly - not cool. The end result is important though.
When Deb, the nurse called my back to insert the probe, she said Dr. Olson had called and wanted to talk with me before she started. I heard her fast footsteps coming around the corner. She peeked in and smiled that big smile, "Hey Toni! How are you?" She told me she and Dr. Katial had been talking about more of the results and were not finding a cause for the heightened eosinophils. They both believed it was very important and necessary that I have a bone marrow biopsy right away. She was scheduling it to be performed at the University of Colorado Hospital tomorrow morning. She insisted that they are the best and the information was key. "We're going to figure this out Toni, we are." I trusted her and believed it would be all for good in the end.
Deb inserted the probe and gave me my final instructions. I left National Jewish with a few more bruises and mind spinning with new information. That night I insisted we head down to the 16th Street Mall to walk around and escape the day. (or at least pretend to escape)
My first test was the ENO, which measures the amount of inflammation in my lungs. She called me back and reminded me that in February my score was 74. Dr. Olson wanted my score to be lower this time because the 74 meant I had a lot of inflammation in my airways in the winter.
No problem! I had this one covered! That was February when I was sick and now I've been quarentined from kids and people all summer. I was CERTAIN that the number would be super low! I took the test hopefully! Two minutes later a 234 popped up. I was certain that was a number that had to be converted. I asked if it was good - lower than 74??? She choked and said it showed massived amounts of inflammation. :( I took a breath and we tried again to see if the number remained consistent ~ 237. Wow - what a remarkable increase. Something is really going on with my body. I am so glad to be here in the capable hands of Dr. Olson.
After a short speech consult for vocal cord dysfunction, it was time for my appointment with Dr. Olson. I was filled with anxiety, impatience, hope, and confusion. I just want to give her everything she needs to help me to get on the right track. I went into the appointment alone because I tend to get so nervous with someone else in the room that I shut down and don't speak at all. I needed to speak.
Our time was priceless. She reviewed recent events to make sure she was up to date. She also asked a lot of questions about how I feel, how I'm dealing with things, what I do about problems. She was still waiting on most of the lab orders that Dr. Katial had sent, but a few were in. My eosinophils have gone from a high 1320 on July 7th to over 2200 now. They were also concerned about a few other results and wanted to discuss them together further to make a decision and a plan.
The sinus CT was a disaster. You couldn't even tell that I'd had sinus surgery four months ago. It it so frustrating. She immediatedly went to the other side of the building and found an ENT that she likes and made an appointment for me. She is insistent on getting to the bottom of my problems and helping me to have a wonderful life! She said she would be ordering more tests, talking with Dr. Katial, and getting back with me soon.
Soon must have meant very soon! She saw me in the hallway about an hour later and stopped me. She said they had spoken and she wanted me to go have a few more labs drawn and get a new schedule. She had added a few more appointments.
DanniLynn in the lab department laughed when she saw me again! It was my third blood draw today! They kept using the exact same site too because it is the only "good" vein in my arms. (ugh) After that, I headed to my GI appointment with Dr. Toribara. Surprise, surprise ~ he was simply wonderful. He was a delightful man. He acknowledged that his role was probably a small one in my complicated treatment plan. He explained how they were looking for possible silent reflux which has been documented to cause asthma symptoms. I don't have symptoms of reflux or any stomach symptoms at that, but I suppose it's better to go ahead and check everything.
To check for reflux, they use a terribly uncomfortable device called an impedence pH probe. It's a wire that is run from the nose to the top of the stomach and has to stay there for 24 (miserable) ;) hours! I know, I know! There are totally worse things in the world - but I will say that this thing stinks!! It totally makes you feel like you're gagging constantly - not cool. The end result is important though.
When Deb, the nurse called my back to insert the probe, she said Dr. Olson had called and wanted to talk with me before she started. I heard her fast footsteps coming around the corner. She peeked in and smiled that big smile, "Hey Toni! How are you?" She told me she and Dr. Katial had been talking about more of the results and were not finding a cause for the heightened eosinophils. They both believed it was very important and necessary that I have a bone marrow biopsy right away. She was scheduling it to be performed at the University of Colorado Hospital tomorrow morning. She insisted that they are the best and the information was key. "We're going to figure this out Toni, we are." I trusted her and believed it would be all for good in the end.
Deb inserted the probe and gave me my final instructions. I left National Jewish with a few more bruises and mind spinning with new information. That night I insisted we head down to the 16th Street Mall to walk around and escape the day. (or at least pretend to escape)
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| Who wouldn't want this piano? On 16th Street |
Monday, July 25, 2011
Day One ~ Familiar Faces/Familiar Failures
My first day back at National Jewish was filled with highs and lows. It was so good to be back in this comforting place where I know they "never say never"! I know my well being and improvement is their priority. Teamwork oozes throughout the building. In some ways, you feel like you're among celebrities when you're at National Jewish because of the level of excellence that is upheld.
My day began with an appointment with Dr. Katial, the Immunologist that performed my aspirin desensitization before my heart surgery. He asked for a summary of how my asthma/health has been since then. We had a pretty fun conversation because of my tendency to minimize the severity of my history. :) He caught on quickly and called me out! I guess I have been a bit "sicker" than I prefer to admit.
He ordered a truckload of labs and said he and Dr. Olson would review the results after they have more information and touch base with me.
From there, I moved on to radiology for CTs of my sinuses and my chest. In the hallway, I ran into Dr. Olson. She gave me a hug and asked what had happened so far. When I reported that I had already met with Katial, she turned to go talk with him about his plan.
My last test for this short day was the pulmonary function test in the box on that darn third floor. :( As the elevator rose higher I could feel my muscles tensing up. My peak flows have not been superb lately. Dr. Katial even gasped at the numbers from my morning spirometry. I knew all I could do was my best, I am here to get better. The technician couldn't get a consistant reading so she had me repeat the test time after time after time. It was terrible. I felt like such a huge failure, but what else could I do - I can't make my lungs work any better - I've tried - believe me - my will is quite powerful, but not that powerful...
Sadly, this was a familiar failure. It was nothing new, but still quite frustrating. To add salt to the wound, she said the tests were showing a lot of truncation. That means my VCD (vocal cord dysfunction) isn't under control like I thought it was. Ugh!! Sometimes I just want to scream with all this information. I must remind myself, that I am in the best place for failing though. I have the best team on MY side and they are beyond determined to help me have a better life.
I know this is all for good.
My day began with an appointment with Dr. Katial, the Immunologist that performed my aspirin desensitization before my heart surgery. He asked for a summary of how my asthma/health has been since then. We had a pretty fun conversation because of my tendency to minimize the severity of my history. :) He caught on quickly and called me out! I guess I have been a bit "sicker" than I prefer to admit.
He ordered a truckload of labs and said he and Dr. Olson would review the results after they have more information and touch base with me.
From there, I moved on to radiology for CTs of my sinuses and my chest. In the hallway, I ran into Dr. Olson. She gave me a hug and asked what had happened so far. When I reported that I had already met with Katial, she turned to go talk with him about his plan.
My last test for this short day was the pulmonary function test in the box on that darn third floor. :( As the elevator rose higher I could feel my muscles tensing up. My peak flows have not been superb lately. Dr. Katial even gasped at the numbers from my morning spirometry. I knew all I could do was my best, I am here to get better. The technician couldn't get a consistant reading so she had me repeat the test time after time after time. It was terrible. I felt like such a huge failure, but what else could I do - I can't make my lungs work any better - I've tried - believe me - my will is quite powerful, but not that powerful...
Sadly, this was a familiar failure. It was nothing new, but still quite frustrating. To add salt to the wound, she said the tests were showing a lot of truncation. That means my VCD (vocal cord dysfunction) isn't under control like I thought it was. Ugh!! Sometimes I just want to scream with all this information. I must remind myself, that I am in the best place for failing though. I have the best team on MY side and they are beyond determined to help me have a better life.
I know this is all for good.
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| A few pics from our VRBO Oh yes! That's a fancy chadelier over the bed! We were living it up! |
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| The cute little kitchen. |
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| Every rental needs a pretty pink bathroom :) |
Thursday, July 14, 2011
A Preliminary Schedule
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!).
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 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. :)
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