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.
Monday, May 9, 2011
Thursday, May 5, 2011
Fighting Staph
Sadly, Dr. Thompson was right. I was getting a sinus infection. I toughed it out until it got the best of me a week later. Joelle talked with the doctors and they called in a prescription for Bactrim on Wednesday, April 20th. It hasn't worked in the past, but I thought it was worth another try. I was feeling pretty bad and my big Heart Walk was scheduled for Saturday morning! I was so determined to walk no matter how I felt! Unfortunately (& slightly for the best) it was cancelled due to thunderstorms. I spent the rest of the weekend fighting to feel better without much success.
That week I did continue to get worse and had appointments with both the pulmonologist and the ENT. Test results revealed that the infection was staph in my sinuses. My antibiotic was changed and other meds were added. They seemed confident it would take care of the infection. Other test results were also in. My eosinophils were higher than before ~ 1334 now but all the tests for what could cause the increase were negative. Dr. Thompson was at a loss. He told me to stop taking Singulair because it has been known to increase eosinophils in some studies.
Today was my last day of Levaquin and my symptoms have been getting worse. Dr. Thompson is out of town, so I made an appointment with Kristy. She said the staph infection has spread to my lungs which certainly isn't a good thing. There were some patches on my x-ray and my lung function was below 40%. She prescribed a new antibiotic and increased the steroids. She also took some blood to check my eosinophils again and do another CBC. She's going to check in on me at rehab Monday. Hopefully these changes will do the trick, if not, she said the next step will be the hospital.
Here's to high hopes and much faith that some staph will be beat down in my body this weekend. :)
That week I did continue to get worse and had appointments with both the pulmonologist and the ENT. Test results revealed that the infection was staph in my sinuses. My antibiotic was changed and other meds were added. They seemed confident it would take care of the infection. Other test results were also in. My eosinophils were higher than before ~ 1334 now but all the tests for what could cause the increase were negative. Dr. Thompson was at a loss. He told me to stop taking Singulair because it has been known to increase eosinophils in some studies.
Today was my last day of Levaquin and my symptoms have been getting worse. Dr. Thompson is out of town, so I made an appointment with Kristy. She said the staph infection has spread to my lungs which certainly isn't a good thing. There were some patches on my x-ray and my lung function was below 40%. She prescribed a new antibiotic and increased the steroids. She also took some blood to check my eosinophils again and do another CBC. She's going to check in on me at rehab Monday. Hopefully these changes will do the trick, if not, she said the next step will be the hospital.
Here's to high hopes and much faith that some staph will be beat down in my body this weekend. :)
Tuesday, May 3, 2011
Tough Decisions
Friday, Dr. Olson called. She was the third doctor of the week to have a serious conversation with me about my job. Talk about a strong message. :( All three of them talked with me about what working around children is doing to my health. How I am stronger in the summer and sick again each time I go back to work after a break. It's getting harder for me to fight off infection and viruses even with stronger medicines. Hearing it for the third time was tough. I've been ready to do so much ~ even pack up and move to Denver, but give up my classroom...my students...
Dr. Olson talked to me sincerely about it. She asked about other options in the school. She thought that an intervention type position would be the best option from a medical standpoint for my health. In that position, I wouldn't be exposed to germs and illness as heavily as a classroom teacher. I would only work with small groups of children at a time and in a more controlled environment.
Since this conversation, I've talked with Leigh Ann and have started the medical accommodations paperwork with human resources at central office. I know it's what has to happen because I can't physically continue to teach until I am better. Stacey, Debbie, Leigh Ann, & my family are the only people I've told. So many things have been running though my head. I feel like a liar each time I have to work on something for the 2nd grade team for next year. I don't know what is going to happen because there isn't an intervention position at our school right now. What I do know is that my heart is absolutely crumbling inside. I love things about my job that so many classroom teachers hate. I start crying each time I think about packing up my room, making classlists, or typing summer letters. I have dreamed of retiring as a classroom teacher. I feel like such an enormous failure in my life. It is so frustrating to not be able to take medicine and just get better. I look back now and wonder where I went wrong.
I still have to believe things are going to get better and I know this is All For Good or I wouldn't agree to it. I have to believe. I also know that I can and will be an amazing intervention teacher. The thing is, right now, it's tough, and it really hurts...
Dr. Olson talked to me sincerely about it. She asked about other options in the school. She thought that an intervention type position would be the best option from a medical standpoint for my health. In that position, I wouldn't be exposed to germs and illness as heavily as a classroom teacher. I would only work with small groups of children at a time and in a more controlled environment.
Since this conversation, I've talked with Leigh Ann and have started the medical accommodations paperwork with human resources at central office. I know it's what has to happen because I can't physically continue to teach until I am better. Stacey, Debbie, Leigh Ann, & my family are the only people I've told. So many things have been running though my head. I feel like a liar each time I have to work on something for the 2nd grade team for next year. I don't know what is going to happen because there isn't an intervention position at our school right now. What I do know is that my heart is absolutely crumbling inside. I love things about my job that so many classroom teachers hate. I start crying each time I think about packing up my room, making classlists, or typing summer letters. I have dreamed of retiring as a classroom teacher. I feel like such an enormous failure in my life. It is so frustrating to not be able to take medicine and just get better. I look back now and wonder where I went wrong.
I still have to believe things are going to get better and I know this is All For Good or I wouldn't agree to it. I have to believe. I also know that I can and will be an amazing intervention teacher. The thing is, right now, it's tough, and it really hurts...
Friday, April 15, 2011
Let's run some more tests...
Friday - yay! I did make it through my first week back! I woke up feeling a bit chilled and achy, but blamed it on it being the end of a long week and moved on. I left work at lunch because I had a pulmonology appointment/lung function tests with Dr. Thompson today. I felt exhausted and a bit congested so with an hour to spare before the appointment I went home and rested a while hoping to shake off whatever was slowing me down.
My PFTs actually went pretty well! When I got back to the exam room and the nurse took my temp, she asked how I was feeling. I told her I was okay, just feeling a bit drained and congested. I had a low grade temp of 99.8. I was so frustrated when she told me. I had only worked 4 1/2 days and was getting sick again! I'm so tired of handling this. I stayed calm though, waited for Dr. Thompson, and heard him out.
He reviewed my kidney function tests first. The aspirin is so important that we're not going to change anything for now. He's just going to continue to monitor the kidney function regularly and make changes if things get worse.
He said it appears as though I'm getting another sinus infection. He seemed as sad and frustrated as I am. He apologized for not knowing how to help my sinuses and that the surgery didn't seem to help. As far as the high eosinophil count, he discussed the possible causes and wanted to run some more tests to narrow the field. He also wanted to check for some other diseases and problems that could manifest with pulmonary symptoms. He ordered more labwork and said he would call me when it comes back.
Talk about perfect timing and dear friends though ~ this card from Linda was waiting for me at the end of the day. :)
My PFTs actually went pretty well! When I got back to the exam room and the nurse took my temp, she asked how I was feeling. I told her I was okay, just feeling a bit drained and congested. I had a low grade temp of 99.8. I was so frustrated when she told me. I had only worked 4 1/2 days and was getting sick again! I'm so tired of handling this. I stayed calm though, waited for Dr. Thompson, and heard him out.
He reviewed my kidney function tests first. The aspirin is so important that we're not going to change anything for now. He's just going to continue to monitor the kidney function regularly and make changes if things get worse.
He said it appears as though I'm getting another sinus infection. He seemed as sad and frustrated as I am. He apologized for not knowing how to help my sinuses and that the surgery didn't seem to help. As far as the high eosinophil count, he discussed the possible causes and wanted to run some more tests to narrow the field. He also wanted to check for some other diseases and problems that could manifest with pulmonary symptoms. He ordered more labwork and said he would call me when it comes back.
Talk about perfect timing and dear friends though ~ this card from Linda was waiting for me at the end of the day. :)
Tuesday, April 12, 2011
A Long Year
Dr. Olson called tonight and I just broke down crying after I hung up the phone. She has to have one of the most comforting voices ever. She was concerned about a report from Dr. Thompson and wanted to check in on me. She wanted more information. Through our conversation I found out that my eosinophil count was up to 1000 at my last labs. That was very disheartening. I also just found out that my kidney function is elevated because of the high dosage of aspirin I'm on. Of course she was on top of everything talking about possible plans of action. She asked me to fax the CBC to her as soon as possible so she could see it for herself. She also wants me to call her Thursday with the pathology report from the sinus surgery. The last thing she said to me was, "there are good things we can still do. I want to talk to you at the end of the week."
My first day at National Jewish was one year ago today. That's kind of been in the back of my mind all day. The memories of that first day and week have been popping in and out of my head. I've been tired back at work this week, but hopeful because my peak flows have been strong. It all came flooding to the surface when I found out about the eosinophil count. I know it's not the end of the world by any means. It just hit me that it's been a long year. It's just been a long year. I'm so blessed to have such amazing doctors on my side.
My first day at National Jewish was one year ago today. That's kind of been in the back of my mind all day. The memories of that first day and week have been popping in and out of my head. I've been tired back at work this week, but hopeful because my peak flows have been strong. It all came flooding to the surface when I found out about the eosinophil count. I know it's not the end of the world by any means. It just hit me that it's been a long year. It's just been a long year. I'm so blessed to have such amazing doctors on my side.
Tuesday, March 29, 2011
Just another surgery???
I was surprisingly calm before the surgery. I was actually quite proud of myself! :) It was supposed to start at 9:30 but they didn't even call be back for prep until almost 11:00. Everything went smoothly. Dr. Hughes came out and spoke with Mom afterwards. He said the prayers worked because the bleeding wasn't nearly as much of a problem as he expected considering my dosage of aspirin! That was wonderful news!
Everything has gone as expected so far. He operated on the sinuses around my eyes and forehead so that's obviously where most of the pain has been. I have a follow up appointment with him next Friday. Hopefully they'll have the lab results with the eosinophil counts by then. Maybe this really will be the big answer...
Friday, March 25, 2011
Thursday, March 24, 2011
I understand what you're saying
More appointments...today I had to miss school again because I had four separate appointments scheduled. I can't let myself think about it though. When I do, I get to where I can't catch my breath. That doesn't help anything. So instead, I just do what I have to do and push through, processing when I'm ready.
The first appointment was with rheumatologist, Dr. Jeffrey Neal. He was very informative. He explained all about how I am in the high risk catagories for developing an auto-immune disease. Much to his surprise, I understood everything he was saying. He wants to continue to monitor me every few months for the next several years. He also discussed concerns & treatment plan about my bone density due to the years of steroids. Our final topic was very intriguing! He explained the possibility of using the drug methotrexate as a new treatment for my refractory asthma. It is well known as a chemotherapy drug but in small doses has been used in patients for which other asthma meds have been unsuccessful. Dr. Neal said he would work with Dr. Thompson to monitor the dosage of the drug. The side effects could be intense, but it could be the right treatment plan for me.
From that appointment, I went to a very frustrating session with Wafa working on VCD. She is wonderful, but since I am still recovering from pneumonia, I guess my vocal cords just weren't up to being challenged. Sadly this was my last session with her because she's going on maternity leave next week. I'm really going to miss working with her!
At the pulmonologist I learned that methotrexate is not something to get excited about right now. Dr. Thompson was a bit leary about the strength and the side effects of the drug and said we should save it for a later option. He agreed that it was something to keep in mind, but that we should wait to see how the sinus surgery works out first. I understood what he was saying. He also shared the results of the lab work they ran while I was in the hospital last week. My IGg level was a lot lower than it was back in February. This news is kind of a blow because we had all hoped it was going up. I didn't qualify for the IVIg therapy. All in all this means that I have an IGg deficiency but can't be treated for it. That stinks. :( Dr. Thompson and Kristy were both in the room talking with me. They said maybe it's time to change our expectations. ~For example...my lungs are still recovering and I'm still a bit run down, but what if we called today's lung function pretty good?? I sure didn't like the idea. Actually, just listening to them talk was crushing. I understood what they were saying though.
I'm not giving up hope because my doctors are frustrated. I know God is still in this and whatever the outcome, it will be all for good. I understand that this is way bigger than me!
The first appointment was with rheumatologist, Dr. Jeffrey Neal. He was very informative. He explained all about how I am in the high risk catagories for developing an auto-immune disease. Much to his surprise, I understood everything he was saying. He wants to continue to monitor me every few months for the next several years. He also discussed concerns & treatment plan about my bone density due to the years of steroids. Our final topic was very intriguing! He explained the possibility of using the drug methotrexate as a new treatment for my refractory asthma. It is well known as a chemotherapy drug but in small doses has been used in patients for which other asthma meds have been unsuccessful. Dr. Neal said he would work with Dr. Thompson to monitor the dosage of the drug. The side effects could be intense, but it could be the right treatment plan for me.
From that appointment, I went to a very frustrating session with Wafa working on VCD. She is wonderful, but since I am still recovering from pneumonia, I guess my vocal cords just weren't up to being challenged. Sadly this was my last session with her because she's going on maternity leave next week. I'm really going to miss working with her!
At the pulmonologist I learned that methotrexate is not something to get excited about right now. Dr. Thompson was a bit leary about the strength and the side effects of the drug and said we should save it for a later option. He agreed that it was something to keep in mind, but that we should wait to see how the sinus surgery works out first. I understood what he was saying. He also shared the results of the lab work they ran while I was in the hospital last week. My IGg level was a lot lower than it was back in February. This news is kind of a blow because we had all hoped it was going up. I didn't qualify for the IVIg therapy. All in all this means that I have an IGg deficiency but can't be treated for it. That stinks. :( Dr. Thompson and Kristy were both in the room talking with me. They said maybe it's time to change our expectations. ~For example...my lungs are still recovering and I'm still a bit run down, but what if we called today's lung function pretty good?? I sure didn't like the idea. Actually, just listening to them talk was crushing. I understood what they were saying though.
I'm not giving up hope because my doctors are frustrated. I know God is still in this and whatever the outcome, it will be all for good. I understand that this is way bigger than me!
Tuesday, March 22, 2011
Time to Deal
Well, I did get released from the hospital Friday afternoon. I spent the weekend recovering and working on report cards. I'm still getting over the pneumonia so I've only been working mornings. I did go to pulmonary rehab yesterday. I was able to get through everything but was pretty beat when I left. This afternoon I had the follow up appointment with Dr. Hughes, my ENT to discuss sinus surgery.
I've known about this appointment for over a month now, but haven't been able to let myself deal with the thought of having another surgery even if it is just on my sinuses. So, in my own special way, I have completely avoided thinking about it until today. On my way to the office I really started to fall apart. You would think that after open heart surgery, the thought of any other type of surgery would be cake but for some reason it's not working out that way for me. My body is going into serious panic mode and I can't control it! I don't even know what I'm scared of, it's just an unconscious reaction that I have to get a handle on.
Dr. Hughes said my sinuses were worse than he had previously thought and that the surgery was very necessary. It would be a more complicated surgery than he had first expected because of the high dose of aspirin I am taking and the sinus problems he'll be repairing. He also let me know that my recovery time would be longer because of my health complications and the aspirin. The most important thing is that he believes it will help me to have fewer asthma symptoms and fewer infections in the future.
Sometimes I feel so smothered by the things I'm dealing with lately that I start to doubt the good that I know will come. It's time to deal with this surgery and take back the hope that I am going to be well. Maybe this surgery could be the missing puzzle piece my body needs to fully recover.
I've known about this appointment for over a month now, but haven't been able to let myself deal with the thought of having another surgery even if it is just on my sinuses. So, in my own special way, I have completely avoided thinking about it until today. On my way to the office I really started to fall apart. You would think that after open heart surgery, the thought of any other type of surgery would be cake but for some reason it's not working out that way for me. My body is going into serious panic mode and I can't control it! I don't even know what I'm scared of, it's just an unconscious reaction that I have to get a handle on.
Dr. Hughes said my sinuses were worse than he had previously thought and that the surgery was very necessary. It would be a more complicated surgery than he had first expected because of the high dose of aspirin I am taking and the sinus problems he'll be repairing. He also let me know that my recovery time would be longer because of my health complications and the aspirin. The most important thing is that he believes it will help me to have fewer asthma symptoms and fewer infections in the future.
Sometimes I feel so smothered by the things I'm dealing with lately that I start to doubt the good that I know will come. It's time to deal with this surgery and take back the hope that I am going to be well. Maybe this surgery could be the missing puzzle piece my body needs to fully recover.
Friday, March 18, 2011
Good Ole CBH
Friday, March 18, 2011
I must give a shout out to all the nurses, techs, and other staff members at Central Baptist Hospital! You guys are remarkable! As much as I detest being in the hospital, each caretaker that has walked through my door has been simply fabulous. I have been treated with such a level of kindness, sincerity and competence! It’s nice to know that they truly want me to be well and are on top of doing whatever it takes to make it happen – even when I’m not asking for anything!
Since that first evening, things have certainly settled down. It has been a very different stay compared to ones from my past. I have not been allowed to get up and walk the halls like before. The nurse said it’s because I’m still too sick and it isn’t in the doc’s orders. A couple of interesting things have happened too. The first night my blood pressure kept dropping. Several different times during the night there were two nurses in here a little concerned about it. By morning it was up to 90/54. It stayed in that range for next day or two. The second night my IV went bad. That was a nightmare I choose not to relive. Last night, my BP finally went up to 107/59, but my heart rate decided to drop. They were in and out all night having me talk and move around. It stayed in the low 40s all night. This morning it has been hanging stronger at 51.
Total hightlights have been visitors :). I am so blessed to have such wonderful friends! My family couldn't come up and I know it sounds terrible, but I'm glad they didn't. Really ~ I don't mean it that way!! It just tears me up inside when they have to leave their life & jobs & responsibilities & spend the money and time to drive all the way to Lexington to sit in a hospital room and stare at a sick person ~ not what you want your loved ones to go through. I'm glad they were able to stay in the comfort of home this time. All the while, I've not been forgotten :). The hospital is seriously not a place anyone should ever choose to "hang" - especially during March Madness, but my dear friends have been here with radiant smiles. Stacey, Melodie, Eleanor, Susan, Stephanie, Elizabeth, Debbie, Leigh Ann, Jenn, Melanie, and Doug all stopped in to show they care. Words will NEVER express what a hospital visit truly means. I would never expect anyone to visit, but the people who do take the time, are showing a true act of kindness that isn't forgotten! To top it off, my own personal superstar, Dr. Woody even stopped by to say hi! I was touched and even more impressed with her after the visit!
Total hightlights have been visitors :). I am so blessed to have such wonderful friends! My family couldn't come up and I know it sounds terrible, but I'm glad they didn't. Really ~ I don't mean it that way!! It just tears me up inside when they have to leave their life & jobs & responsibilities & spend the money and time to drive all the way to Lexington to sit in a hospital room and stare at a sick person ~ not what you want your loved ones to go through. I'm glad they were able to stay in the comfort of home this time. All the while, I've not been forgotten :). The hospital is seriously not a place anyone should ever choose to "hang" - especially during March Madness, but my dear friends have been here with radiant smiles. Stacey, Melodie, Eleanor, Susan, Stephanie, Elizabeth, Debbie, Leigh Ann, Jenn, Melanie, and Doug all stopped in to show they care. Words will NEVER express what a hospital visit truly means. I would never expect anyone to visit, but the people who do take the time, are showing a true act of kindness that isn't forgotten! To top it off, my own personal superstar, Dr. Woody even stopped by to say hi! I was touched and even more impressed with her after the visit!
Yesterday, Dr. G, one of the partners at Dr. Thompson’s office, told me she would be sending me home this morning. She emphasized the fact that I am still sick with pneumonia, but stable enough to continue treatment on oral meds at home. I desperately want out of the hospital, but at the same time it bothers me to hear that I am still not well. I just want to be well. I’m ready for that.
It’s 10:35 a.m., I guess content for now would be a set of hospital discharge papers. We’ll see what happens…
Tuesday, March 15, 2011
Sometimes I wish I didn’t know what I feel…
Tuesday, March 15, 2011
For whatever reason, the antibiotics and prednisone have suddenly decided to take a break and allow this infection to take over again. I woke this morning feeling pretty rough. My peak flows were low, but not terrible, the problem was the feeling I had – the feeling I knew. It was pain inside my chest and back. It was a familiar feeling that brought back very bad memories and instant frustration. The thing was that today we had a much anticipated field trip to Safety City & it was already 4:45 a.m. I’ve been doing everything I’m supposed to do according to every doctor across the country to “get better” so maybe I was just tired and I would feel better when the meds kicked in. The doctors know what they are doing and they just told me yesterday that I’ll be okay I just need to give the meds more time. So I tried to suck it up, buck up, and go do my job to create a wonderful memory for my students.
By 2:30 my suck it up was out of suction. I was pretty positive that my morning pep talk did not hold true. I called Joelle, my respiratory therapist to ask for advice. She talked with the pulmonologists and they wanted me to come over immediately for a spirometry test. As soon as my last student was gone, I headed to the office. I was sure they were going to help me feel better this time. When I went to hand the receptionist my co-pay she said, “Oh, the doctor isn’t going to see you. They just want the spiro results. You don’t have to pay! J” I was crushed. For the next forty-five minutes I waited with quiet teary eyes in the corner of the lobby thinking about how sick I felt and that they weren’t even going to help me, but just do a lung test. I knew I wouldn’t even be able to do a spiro at the time – I was way too congested. Nevertheless, I was there, and I try to believe that the best will come of doing what these doctors ask.
I was called back and failed miserably at the spiro several times while the lady politely told me that I was not doing a good job and need to think about it and try again – ha! Finally, I coughed at a convenient time that made the result sufficient enough to take to the doctor. Minutes later, Kristy, the PA, was in the room with me totally concerned. HELLO! I told the receptionist, the therapist, and the tech that I was sick – did they not tell you?????? My temp was 102.9 & the lung function was so low they insisted on admitting me to the hospital.
By 10:00 p.m. I was in the hospital bed after a nightmarish experience with two lab techs digging in my arm for blood cultures, IV trauma, shots in the stomach, and more other meds/treatments than I’ve ever had in one hospital stay. Dr. Thompson was treating me for the pneumonia I knew I felt this morning, possible H1N1, asthma exacerbation, and dehydration.
I know now tomorrow will be a better day.
Saturday, March 12, 2011
Sick Day
I did end up having to take a sick day - in fact I was out until Friday afternoon. Despite the way it started with the fever and chills, the biggest problem was how it effected my breathing. I was down big time. It hit me hard. I could barely speak a couple of words at a time.
I went to see Kristy the pulmonologist on Wednesday and she prescribed augmentin and put me back on prednisone. I was doing xopenex treatments almost constantly. I didn't want to go in the hospital. I even increased the prednisone on my own because the dose she put me on wasn't making a difference.
Finally, by the weekend I was doing better. On Saturday night I felt like the antibiotic was starting to work and I was getting better. Hopefully the next week would be better. :)
I went to see Kristy the pulmonologist on Wednesday and she prescribed augmentin and put me back on prednisone. I was doing xopenex treatments almost constantly. I didn't want to go in the hospital. I even increased the prednisone on my own because the dose she put me on wasn't making a difference.
Finally, by the weekend I was doing better. On Saturday night I felt like the antibiotic was starting to work and I was getting better. Hopefully the next week would be better. :)
Tuesday, March 8, 2011
More about those titers
Sometimes timing is funny. Today during reading I started feeling bad. It hit me like a mack truck. I was chilled, achy, congested, and having trouble breathing. Luckily, it was almost 2 o'clock so I knew I could push through to the end of the day. Just as we were starting to clean up, my phone rang and it was Dr. Olson. She was calling about the titers that had been drawn. When I answered she immediated changed her train of thought asking what's going on? Who's on top of it? Who's taking care of you? What are they doing? What's the plan? I had to smile. I finally convinced her that it literally just hit me and I was going to call right after school.
Back to the titers, the results showed that I am IGg immune deficient, but she and Dr. Katial do not think IVIg is the right treatment for me. The news was a tough blow. I had been pretty hopeful that IVIg could be my white knight. Dr. Thompson later explained that IVIg is made from the proteins from the blood from 30 different donors and it's a gamble how the body will react to it each time it is given. He was concerned that my body would not respond to it well. He didn't think the risk was worth the possible benefit. What a bummer.
Back to the titers, the results showed that I am IGg immune deficient, but she and Dr. Katial do not think IVIg is the right treatment for me. The news was a tough blow. I had been pretty hopeful that IVIg could be my white knight. Dr. Thompson later explained that IVIg is made from the proteins from the blood from 30 different donors and it's a gamble how the body will react to it each time it is given. He was concerned that my body would not respond to it well. He didn't think the risk was worth the possible benefit. What a bummer.
Monday, February 28, 2011
Pulmonary Rehab
Pulmonary Rehab is meant to help you rebuild strength after chronic pulmonary illness and to help learning coping strategies for daily living with those illnesses. I'm scheduled to go every Monday and Wednesday from 3-5 p.m. My respiratory therapist is Joelle. She is super sweet. One other therapist is working with a patient at the same time, her name is Johnna and she is fantastic too. I start out each session with a breathing treatment, then several breathing exercises to strengthen my bronchioles and small airways. I get a percussion massage which actually kind of hurts if I am sore from struggling to breathe. Finally we move on to stretches, exercise machines and weights.
One of the things that has been really interesting is getting to see how my blood pressure, heart rate, and O2 stats change with breathing and physical exercises. My blood pressure has been very low consistently. My heart rate and O2 have been very good because the heart surgery. Any time I've been sick or getting sick though, it shows quickly and drastically in my heart rate and O2 stats. My heart rate gets erratic and my O2 sats drop.
I've already learned a lot from this program and it's supposed to last 18 visits. I'm pretty excited about the time I'll get to spend getting stronger here.
One of the things that has been really interesting is getting to see how my blood pressure, heart rate, and O2 stats change with breathing and physical exercises. My blood pressure has been very low consistently. My heart rate and O2 have been very good because the heart surgery. Any time I've been sick or getting sick though, it shows quickly and drastically in my heart rate and O2 stats. My heart rate gets erratic and my O2 sats drop.
I've already learned a lot from this program and it's supposed to last 18 visits. I'm pretty excited about the time I'll get to spend getting stronger here.
Tuesday, February 22, 2011
titers please
Dr. Olson called after work and asked me to contact Dr. Greisner to order labwork to get the titers for pneumo & tetanus vaccs I'd had recently. This test would somehow show how severe my IGg immune deficiency really is.
I was intrigued by this phone call. It gave me hope that they were rethinking the IVIg treatment option. I don't know if it is right for me or not. I just like the possibility of an answer. I can't wait to see what comes of this.
I was intrigued by this phone call. It gave me hope that they were rethinking the IVIg treatment option. I don't know if it is right for me or not. I just like the possibility of an answer. I can't wait to see what comes of this.
Thursday, February 17, 2011
things are going to happen now
After my return from Denver, Dr. Raghavan was immediately on top of scheduling everything Dr. Olson had requested. She worked major miracles with scheduling. I was set up for a sinus CT on that first Wednesday back. The next week I had appointments with the ENT, speech therapist, and pulmonologist back to back.
Dr. Hughes, the ENT spent a lot of time with me. He recommended surgery, but didn't want to go forward with it until he had the go ahead from Dr. Olson concerning my heart. He also performed a hearing test and results showed hearing loss in both ears caused by the infections.
Wafa, the speech therapist was fantastic. She was so interested in setting goals and helping me to improve my VCD. She was also interested in partnering with my speech therapist, Julie from National Jewish. I was comforted and relieved after our appointment.
Dr. Thompson, the pulmonologist talked with me about the events of the past year and seemed excited about the possibilities yet to come. He looked through my file of the tests that have been done and reports given. He agreed that I needed to begin pulmonary rehab and see a rheumatologist. He was looking forward to talking with Dr. Olson on the phone to discuss next steps and said he would get back with me after they spoke.
What a difference a month makes. I hope and pray these changes are real and right. I'm in this. I'm exhausted. I feel bad almost all the time. But I have a new spark of hope and I'm not gonna stop. I'm gonna continue to do everything they ask and jump through every hoop because I know it's all for good because God is in it with me.
Dr. Hughes, the ENT spent a lot of time with me. He recommended surgery, but didn't want to go forward with it until he had the go ahead from Dr. Olson concerning my heart. He also performed a hearing test and results showed hearing loss in both ears caused by the infections.
Wafa, the speech therapist was fantastic. She was so interested in setting goals and helping me to improve my VCD. She was also interested in partnering with my speech therapist, Julie from National Jewish. I was comforted and relieved after our appointment.
Dr. Thompson, the pulmonologist talked with me about the events of the past year and seemed excited about the possibilities yet to come. He looked through my file of the tests that have been done and reports given. He agreed that I needed to begin pulmonary rehab and see a rheumatologist. He was looking forward to talking with Dr. Olson on the phone to discuss next steps and said he would get back with me after they spoke.
What a difference a month makes. I hope and pray these changes are real and right. I'm in this. I'm exhausted. I feel bad almost all the time. But I have a new spark of hope and I'm not gonna stop. I'm gonna continue to do everything they ask and jump through every hoop because I know it's all for good because God is in it with me.
Friday, February 4, 2011
Day Four
The big day - the results. I was super nervous. Mom had been really stressed and was not enjoying being in Denver at all. I didn't want to say anything to upset her or make her trip any worse. I had so much hope riding on getting some kind of solid answer - I was ready for something to wrong just so they could fix it. I just wanted things to get better.
A lot of the appointment is a blur to me now. I remember not being able to speak. Dr. Olson was talking and asking me questions and I just didn't have answers. Mom was getting very frustrated with me which of course was making me shut down more.
I do remember that in the end, she wanted more bloodwork and a sinus CT. Because of our flight, there wasn't time for the CT so she asked that I have it done as soon as I get back to Lexington. She also wanted me to get into see an ENT, a pulmonologist, a speech therapist, and begin pulmonary rehab as soon as possible.
I left feeling stressed out and frustrated with myself. I wanted a redo but it was too late.
A lot of the appointment is a blur to me now. I remember not being able to speak. Dr. Olson was talking and asking me questions and I just didn't have answers. Mom was getting very frustrated with me which of course was making me shut down more.
I do remember that in the end, she wanted more bloodwork and a sinus CT. Because of our flight, there wasn't time for the CT so she asked that I have it done as soon as I get back to Lexington. She also wanted me to get into see an ENT, a pulmonologist, a speech therapist, and begin pulmonary rehab as soon as possible.
I left feeling stressed out and frustrated with myself. I wanted a redo but it was too late.
Thursday, February 3, 2011
Day Three
Today was a bit busier, but everything was still pretty familiar. I began on the dreaded third floor expecting to have a blood gas drawn. I was delighted when it was Tom that called my name. I was even happier when he took me back to the room and said we were just walking and skipping the blood gas!! Yay for good news on the third floor! To make it even better, he said that when I walked, my oxygen level increased - which was what it was supposed to do for once! More good news!
Down the hall I was placed back in the box for the breathing tests. Everything there went as expected. I had some trouble on a few of the tests, but Brenda didn't seem as frustrated with me as she has in the past. ;)
Next I had a chest CT and then a new test to me called an ENO - exhaled nitric oxide test. It checks for inflammation in the lungs, bronchioles, and smaller airways. It was a very short test and given in a neat way. I had to blow into a machine until a picture of a cloud smiled. LOL. Pretty cute - huh? It showed that my airways are still quite swollen or inflamed even with the meds I am taking.
My final appointment was with Julie in speech therapy. She was great. She reviewed everything we had done with Heather back in April. I talked with her about the voice therapy at UK and she understood why I didn't wish to return. She performed a search on her computer for me and found a list of great therapists in my area that I could call when I get home. Surely I'll have better luck with one of them. She also explainly what should happen in a therapy session for VCD. I left feeling better prepared to help myself.
Down the hall I was placed back in the box for the breathing tests. Everything there went as expected. I had some trouble on a few of the tests, but Brenda didn't seem as frustrated with me as she has in the past. ;)
Next I had a chest CT and then a new test to me called an ENO - exhaled nitric oxide test. It checks for inflammation in the lungs, bronchioles, and smaller airways. It was a very short test and given in a neat way. I had to blow into a machine until a picture of a cloud smiled. LOL. Pretty cute - huh? It showed that my airways are still quite swollen or inflamed even with the meds I am taking.
My final appointment was with Julie in speech therapy. She was great. She reviewed everything we had done with Heather back in April. I talked with her about the voice therapy at UK and she understood why I didn't wish to return. She performed a search on her computer for me and found a list of great therapists in my area that I could call when I get home. Surely I'll have better luck with one of them. She also explainly what should happen in a therapy session for VCD. I left feeling better prepared to help myself.
Wednesday, February 2, 2011
Day Two
This was a short day with one really long test. I just had to go to radiology. We got to see Kevin again. He's such a fantastic person. National Jewish is a better place for having him. He took me back and helped me get ready. They were doing the MRA w/wo contrast to check on my heart and pulmonary veins post surgery.
Of course, the test took forever, but they said they were finally able to get all the angles they needed. Apparently everything went well. Dr. Fenster ordered the test, but is vacationing in France so Dr. Olson will go over the results of all the heart procedures with us on Friday.
Of course, the test took forever, but they said they were finally able to get all the angles they needed. Apparently everything went well. Dr. Fenster ordered the test, but is vacationing in France so Dr. Olson will go over the results of all the heart procedures with us on Friday.
Tuesday, February 1, 2011
Day One
One of the big reasons Dr. Olson wanted me back out here was to meet with immunology. I thought Courtney had said she'd worked out the schedule with Dr. Katial and that was who I was seeing today - he was in Hawaii though. I ended up seeing Dr. Mela, who I did meet last April and Dr. Weber. They were both very nice and thorough - I have to admit I was a bit disappointed though. :(
After a long consultation, Dr. Weber decided to double my aspirin dosage to 1300 mg per day for the next six months at least. He's hoping that will help get my asthma under control and we'll be able to drop back to 650 mg per day after that. He also ordered a full panel of labs to check all of my immune antibodies and such. They were very interested to see my IGg level since I've been off steroids a few weeks.
Later I had a repeat cardiac stress test with the agitated saline shunt (bubble test). I was so nervous about this test. It was supposed to be Wednesday morning, but they changed the schedule on me. I was still feeling pretty weak from being sick and didn't have much stamina yet. I was so concerned about not doing any better than I had done back in April.
Nikki and Rachel were in there to perform the test again just like before. That was very comforting. They could tell I was still a little under the weather, but said not to worry about it. I did all I could do and the test actually went okay. The good news was that now we could take our time getting ready on Wednesday morning. :)
After a long consultation, Dr. Weber decided to double my aspirin dosage to 1300 mg per day for the next six months at least. He's hoping that will help get my asthma under control and we'll be able to drop back to 650 mg per day after that. He also ordered a full panel of labs to check all of my immune antibodies and such. They were very interested to see my IGg level since I've been off steroids a few weeks.
Later I had a repeat cardiac stress test with the agitated saline shunt (bubble test). I was so nervous about this test. It was supposed to be Wednesday morning, but they changed the schedule on me. I was still feeling pretty weak from being sick and didn't have much stamina yet. I was so concerned about not doing any better than I had done back in April.
Nikki and Rachel were in there to perform the test again just like before. That was very comforting. They could tell I was still a little under the weather, but said not to worry about it. I did all I could do and the test actually went okay. The good news was that now we could take our time getting ready on Wednesday morning. :)
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