The call finally came! The lab results are in and positive! I am eligible for the treatment. It's been a full month now since Dr. Olson wanted to get it started, but finally here we are ~ Kaci is on the phone telling me I have the green light... Then I coughed, wheezed a little and she stopped me. "You can't start the treatment if you're sick, Toni." The words stabbed through me like a dull knife...no no no no no no. I explained to her that I was just released from the hospital, but that I felt great, so much better. I was ready, completely ready to start.
She talked with Dr. Olson and they decided it was too risky. I needed to wait until I arrived in Denver and she could examine me before I started it. So, once again, not yet...
Friday, September 30, 2011
Thursday, September 29, 2011
plans plans plans
That was my plan anyhow, get better & get out on Wednesday like Dr. McIntosh had hinted...so much for the best laid plans. Sadly, Tuesday night was still pretty rocky. By morning, I was moving a bit more air according to all who listened to me, but sounded "terrible". What a nice thing to hear about your lungs on the day you wanna escape the hospital, eh? Oddly, I was still optimistic. I felt like he would know I could handle being on my own on the oral meds.
Once again, I was wrong, quite wrong. He came in after lunch and said there was no way he'd feel comfortable releasing me as obstructed as I still was. :( This is where I should add that I've been very unemotional lately. Almost detached in a way. Hospital usually really gets me and it had not this time...I was holding strong...until Dr. McIntosh told me I had to stay. I felt so...discouraged...like nothing really does matter or help anymore. I also felt very alone, which is so weird because I have sooo many people caring for me right now. It's hard to describe.
Anyhow, the deal was, he would remove all IV meds and switch to oral. If I remained stable or improved, I would get to go home Thursday.
That gets me to this morning, I once again thought things were going ok when the nurse came in and hooked the IV up again. I was crushed. She said I wasn't doing so well and needed more time on the IV. I decided to believe it was just a last boost of strong meds before he sent me home.
It was. I was released this afternoon with directions to go to Denver and let them do their thing! So, it's Thursday evening, I'm preparing for a busy day at work tomorrow and two short days of prep time before I hit the road. Nothing like a little change in the plans. At least I am breathing though.... :)
Once again, I was wrong, quite wrong. He came in after lunch and said there was no way he'd feel comfortable releasing me as obstructed as I still was. :( This is where I should add that I've been very unemotional lately. Almost detached in a way. Hospital usually really gets me and it had not this time...I was holding strong...until Dr. McIntosh told me I had to stay. I felt so...discouraged...like nothing really does matter or help anymore. I also felt very alone, which is so weird because I have sooo many people caring for me right now. It's hard to describe.
Anyhow, the deal was, he would remove all IV meds and switch to oral. If I remained stable or improved, I would get to go home Thursday.
That gets me to this morning, I once again thought things were going ok when the nurse came in and hooked the IV up again. I was crushed. She said I wasn't doing so well and needed more time on the IV. I decided to believe it was just a last boost of strong meds before he sent me home.
It was. I was released this afternoon with directions to go to Denver and let them do their thing! So, it's Thursday evening, I'm preparing for a busy day at work tomorrow and two short days of prep time before I hit the road. Nothing like a little change in the plans. At least I am breathing though.... :)
Tuesday, September 27, 2011
Really.Bad.Timing.
I started to have symptoms of an infection last week. I was stable and my meds were helping though. I knew I had this long standing appointment with Dr. Thompson on Monday, the 26th so I decided to hold off as long as I didn't get any worse....I didn't. I had a rough cough, congestion, etc. but was very stable. That was, until Monday afternoon around one o'clock. I was teaching reading groups (the first day of them I might add) and my chest was rapidly tightening. My inhalers weren't helping much at all. I was noticing that each time I went to pick up a new group, it was harder to get my breathing back under control. I was quickly spiralling downhill. I kept looking at the clock waiting for the day to end so I could get to the doctor. By dismissal...me the it's all okay person...I was feeling a little concerned. I actually thought about telling Leigh Ann I didn't think I could make it through bus duty - I stopped myself and thought how ridiculous - of course I can do my bus duty - it's my job...and I did it. I left immediately though and headed straight to the appointment. I did a nebulizer treatment on the way, but it didn't help much.
When I arrived they did spirometry and a pulse ox and sent me right back to the exam room. Dr. Thompson came in with the results in hand and a concerned look on his face. He asked what brought me in & I told him it was the follow up appointment that had been scheduled since back in the summer :). (A little humor never hurts). He chuckled - then quickly looked back to the results. He said the numbers were hospital level for normal people, but he knows I'm strong and positive and everything so he didn't want to be an alarmist. (haha) My O2 was 90% and my lung function was 20%. (not so cool). He offered that he might consider several hours in the ER on IV meds to get me on track then release me, but wanted to listen to me first. After he listened to me, he said that wasn't an option. I wasn't moving any air. He said it must be by sheer will power and the grace of God that I push through. He said the only option was a couple of days in the hospital to turn this around. My lungs were too obstructed. He felt confident that if he sent me home I wouldn't make it through the night without going into respiratory failure.
Within the hour, he wrote out the orders, I packed a bag, and I was here at good ole CB in the registration office. Not good timing - I am leaving for Denver Sunday - I have things to do. I do not need to be tied to a hospital bed right now. Uhg! Sometimes my body makes me sooooo angry. I must admit, I know it was the right decision though. I was in bad shape. By 7:00 p.m. I was in my room, IV in and everything all set, but only getting worse. My oxygen continued to drop. I'm pretty good at cool, but I'm pretty positive that if they had not acted when they did, I would be on a ventilator again right now. It was a perfect flashback to 2003 when I was in the ER in Georgetown and went into respiratory failure. This time my oxygen dropped to 82% and I couldn't take a breath at all. Good nurses and techs took care of me in time though. During the night and the next morning my lowest reading was 77%. The nurse called the doctor and he increased the solu-medrol, oxygen, resp-therapy treatments, etc. and altogether that worked to stabilize my stats. Now, on 4 liters of oxygen my O2 is holding strong at 94%.
Dr. McIntosh, one of Dr. Thompson's partners stopped in and said that if I stay on the right track he might be able to release me on a high dose of oral meds late tomorrow. That's something to hope for. :)
For now, I'm going to try to stop worrying about all the work I need to be doing at school and the precious time I'm missing out on with my students before I leave for Denver. I'm going to try not to break down. I'm going to try to let go and just get better so I can make the trip Sunday and start getting better for real...for good. That's the plan for now...
When I arrived they did spirometry and a pulse ox and sent me right back to the exam room. Dr. Thompson came in with the results in hand and a concerned look on his face. He asked what brought me in & I told him it was the follow up appointment that had been scheduled since back in the summer :). (A little humor never hurts). He chuckled - then quickly looked back to the results. He said the numbers were hospital level for normal people, but he knows I'm strong and positive and everything so he didn't want to be an alarmist. (haha) My O2 was 90% and my lung function was 20%. (not so cool). He offered that he might consider several hours in the ER on IV meds to get me on track then release me, but wanted to listen to me first. After he listened to me, he said that wasn't an option. I wasn't moving any air. He said it must be by sheer will power and the grace of God that I push through. He said the only option was a couple of days in the hospital to turn this around. My lungs were too obstructed. He felt confident that if he sent me home I wouldn't make it through the night without going into respiratory failure.
Within the hour, he wrote out the orders, I packed a bag, and I was here at good ole CB in the registration office. Not good timing - I am leaving for Denver Sunday - I have things to do. I do not need to be tied to a hospital bed right now. Uhg! Sometimes my body makes me sooooo angry. I must admit, I know it was the right decision though. I was in bad shape. By 7:00 p.m. I was in my room, IV in and everything all set, but only getting worse. My oxygen continued to drop. I'm pretty good at cool, but I'm pretty positive that if they had not acted when they did, I would be on a ventilator again right now. It was a perfect flashback to 2003 when I was in the ER in Georgetown and went into respiratory failure. This time my oxygen dropped to 82% and I couldn't take a breath at all. Good nurses and techs took care of me in time though. During the night and the next morning my lowest reading was 77%. The nurse called the doctor and he increased the solu-medrol, oxygen, resp-therapy treatments, etc. and altogether that worked to stabilize my stats. Now, on 4 liters of oxygen my O2 is holding strong at 94%.
Dr. McIntosh, one of Dr. Thompson's partners stopped in and said that if I stay on the right track he might be able to release me on a high dose of oral meds late tomorrow. That's something to hope for. :)
For now, I'm going to try to stop worrying about all the work I need to be doing at school and the precious time I'm missing out on with my students before I leave for Denver. I'm going to try not to break down. I'm going to try to let go and just get better so I can make the trip Sunday and start getting better for real...for good. That's the plan for now...
Wednesday, September 21, 2011
A bad attitude, submission, indifference, exhaustion?????
Well, I honestly can't explain, but I feel like it's time I write about it. Since the big diagnosis phone call there has been a pretty big change in me...slightly gradual...but at this point...significant. All in all, I guess the best way to be blunt about it is to say that I really don't care anymore...about much. Now I want to be clear and straight with the me down the road that looks back on this...I truly don't feel I don't care ~ depressed it's more of an indifference or done with this huge fight that I've been battling for~so~freaking~long. For example, I'm done fighting to eat when the thought of food makes me feel sick. I'm done trying to convince labs, doctors' offices, and such to share information, do tests, and schedule appointments. I'm done hoping results will be ready or even sunnier. I'm done sharing bad news with family and friends that hurt for me. I'm done trying to make good choices because I think it will make a difference. I'm done caring for a little while. I'm done dealing. I'm done trying to sleep. I'm done waking up short of breath. I'm done hurting, aching, and having muscle cramps all the time. I'm done hoping or believing that this next thing is going to work or make a difference. I done with the nots and the limits. I know, I know as much as anyone that it's not that bad. Things could and can be so much worse. I know that. I don't like to complain. I can't stand complaining. Even though this is a rant of my thoughts - it's less of a string of complaints and more of an explanation of how and why I feel indifferent. Maybe my body has coped and held itself together for so long being in a state of the unknown that when I finally got the diagnosis it just kind of let go. All those years of effort in holding myself together released in a kind of submission to finally having an end...and answer. As I said, I don't know the reason, all I know is I feel different, I don't know that it's necessarily good. Maybe after I get back out to Denver and start treatment I'll start feeling positive and stronger again. For now though, bad attitude, submission, exhaustion, I don't know...what I know is that I have an overwhelming feeling of I just don't care anymore. I'm just done for a while.
Monday, September 19, 2011
Is this a sick joke?
I left work at 8:20 this morning thinking this would be no problem to get Dr. Neal to order the TPMT level test, run upstairs to have the blood drawn and rush back to work. Oh me and my good intentions...when will I learn- I'm just glad I can still be blindly optimistic! Ha! As you can guess it was one silly road block after another. Sometimes I really feel like I'm in the middle of some kind of practical joke. First the nurse shewed me away after my detailed explanation like I was there to stalk or harrass Dr. Neal. She told me they'd get back to me in at least 48 hours....ummm NO! I went to the car, gathered my thoughts in the pouring rain and developed my plan of re-entry. Long story short, after three tries and 2 hours, I finially got the orders. Geez! I trotted upstairs to the lab (which has always been empty) ~ not today ~ no not today. One & a half hours later I was called back, passed my orders over, prepped for the draw, and halted by the tech short of a needle stick. Believe it or not, blood cannot be drawn for this test until after 3:00 p.m. - yes, that's right, not until after 3:00 p.m. By this time it was near lunchtime...not near 3:00 p.m. My blood was apparently not ripe...not ready for the draw. Lucky for me, this lab was closing at 3:00 today and it would be too risky to draw it at 2:45. I would have to go to another office between 3 and 4 today to finish this process. OMG
Well, the blood was drawn at exactly 3:43 p.m. at the alternate lab. My only hope now is that the correct test was ordered and my odd sleeping habits didn't effect whatever magical is supposed to happen to a person's blood at 3:00 p.m. daily. We shall see in 5-7 days...
Well, the blood was drawn at exactly 3:43 p.m. at the alternate lab. My only hope now is that the correct test was ordered and my odd sleeping habits didn't effect whatever magical is supposed to happen to a person's blood at 3:00 p.m. daily. We shall see in 5-7 days...
Friday, September 16, 2011
Not the Best News I've Heard All Week...
Well, to fill in on recent events...I did call about the labs for Dr. Olson~it wasn't a pleasant series of events that led to today. That Friday, they weren't in, but expected them Saturday which meant Monday. On Monday when I called, the lady actually yelled at me and told me NOT to call there again. I should get the results from my doctor. I calmly explained the situation, but it didn't matter to her. They weren't in and she wasn't in the mood to speak with me. Needless to say, I didn't call again Tuesday. I felt confident they should have been in and been faxed to Kaci though. We were emailing back and forth and I told her to expect them. Wednesday I tried to call, but they were already gone for the day.
This leads to Friday afternoon. I missed a call from National Jewish during bus duty. Of course I couldn't call back, because I didn't know who it was from. I had an email at home from Kaci, she said they had the labs and Dr. Olson just needed to review them and she would call me later. At 7:00 p.m. Kaci called, it had been her earlier. Her voice was almost...sad. She said she didn't have great things to share with me. :( Okay, let's hear it. They had reviewed the lab results and the lab had performed the WRONG TEST on the blood! Yes, that's right, WRONG TEST! Dr. Olson double checked the order she had sent and it was correct. She had ordered a TPMT level and the lab order some kind of liver test instead. Needless to say, over two weeks have been wasted and now we have to start over again with testing because I can't start treatment without the results of this test. Deep breath, deep breath, deep breath - I can handle this. Her suggestion was to go to the rheumatologists office Monday morning and have him order the test through his preferred lab, surely they would know to do the correct test.
On top of this she also explained that there is some confusion about my surgery. I got a bizarre phone call earlier today from the surgeon's temp assistant asking me why I had scheduled the surgery on my own. Of course I didn't do that, someone called me and told me to set it up, but she made me feel like I was losing my mind. What is going on??????? Apparently after talking to me, she called Kaci. Kaci said Dr. Olson was going to take care of everything. The surgery is extremely important. They would never have me do it if it wasn't. It's a type of sinus surgery, but they are telling me not to call it sinus surgery because it is so different and so much more complicated??? There is so much I don't understand right now.
This leads to Friday afternoon. I missed a call from National Jewish during bus duty. Of course I couldn't call back, because I didn't know who it was from. I had an email at home from Kaci, she said they had the labs and Dr. Olson just needed to review them and she would call me later. At 7:00 p.m. Kaci called, it had been her earlier. Her voice was almost...sad. She said she didn't have great things to share with me. :( Okay, let's hear it. They had reviewed the lab results and the lab had performed the WRONG TEST on the blood! Yes, that's right, WRONG TEST! Dr. Olson double checked the order she had sent and it was correct. She had ordered a TPMT level and the lab order some kind of liver test instead. Needless to say, over two weeks have been wasted and now we have to start over again with testing because I can't start treatment without the results of this test. Deep breath, deep breath, deep breath - I can handle this. Her suggestion was to go to the rheumatologists office Monday morning and have him order the test through his preferred lab, surely they would know to do the correct test.
On top of this she also explained that there is some confusion about my surgery. I got a bizarre phone call earlier today from the surgeon's temp assistant asking me why I had scheduled the surgery on my own. Of course I didn't do that, someone called me and told me to set it up, but she made me feel like I was losing my mind. What is going on??????? Apparently after talking to me, she called Kaci. Kaci said Dr. Olson was going to take care of everything. The surgery is extremely important. They would never have me do it if it wasn't. It's a type of sinus surgery, but they are telling me not to call it sinus surgery because it is so different and so much more complicated??? There is so much I don't understand right now.
Thursday, September 8, 2011
An Optimistic Call
Dr. Olson called tonight and she was so excited it was contagious! She was calling to find out what was going on with the labwork because she hasn't heard anything & it should be in. She asked me to call them in the morning to check on it and let her or Kaci know.
She also wanted me to know she and the other doctors had been studying my case more and felt really optimistic about the things they were putting into place. :) She felt like this treatment might be a little tough, but would be the real answer in the long run. It should even help with my sinuses and asthma! Wow. She was so happy to finally have answers! She went on and on about how good this could be. She made me promise to call her as soon as I knew something because I had to start getting better...all I'm doing now is getting worse every day and she insists that that stop SOON!! :)
She also wanted me to know she and the other doctors had been studying my case more and felt really optimistic about the things they were putting into place. :) She felt like this treatment might be a little tough, but would be the real answer in the long run. It should even help with my sinuses and asthma! Wow. She was so happy to finally have answers! She went on and on about how good this could be. She made me promise to call her as soon as I knew something because I had to start getting better...all I'm doing now is getting worse every day and she insists that that stop SOON!! :)
Wednesday, September 7, 2011
A little more info
In this nightmare I seem to be living out by having to deal with all this "medical mess" sometimes, Dr. Olson seems to be the constant I can count on. She did talk with Dr. Neal, my rheumatologist that very night apparently! Impressed! I got in to see him on Wednesday because of a lucky cancellation.
It was an interesting visit - one of those where you get really excited at first and think YAY - things are so much better than I thought, then the balloon is instantly deflated and you leave wondering what happened...yeah, like that :).
So, Dr. Neal walked into the exam room and said he'd spoken with Dr. Olson about the Churg Strauss diagnosis. He said he pretty much agreed with he and thought treatment was warranted because of all I have experienced. He stressed that he didn't foresee it being a big deal at all. He thought that a simple couple of months of the treatment would stop and even reverse my symptoms. We'd be able to stop the treatment and all would be well. He didn't think side effects would be a huge concern even in my situation because of the short term need. This all sounded WAY too good to be true - and we all know what that can sometimes mean. :(
Because he had mentioned that his most recent lab data was what he had ordered back in March, I pulled the reports I had brought to show him from my most recent visit to National Jewish. I had the reports from Dr. Maleki, the rheumatologist, Dr. Olson, and Dr. Katial. They were just the initial summaries from the visit, but provided more details & data than Dr. Neal had on hand. He started reading through Dr. Maleki's report immediately and making long faces and groaning. Then he started pointing his finger at me with a "wait a minute" type gesture. My stomach started to sink. I wanted to grab his hand like a 2nd grader and say "No backsies Mr.! You already gave me the good news!" I could feel my hands getting clammy as I waited...
He slowly looked up at me and said, "Okay, you've progressed quite rapidly since I saw you in March. These numbers are remarkably high. I'm afraid the outlook might be a little different than what I described..."
"What do you mean" I asked.
He proceeded to explain that my case is complicated (where haven't I heard that one before!). At this point he can't even give me a ballpark figure of how long I will need to be on the treatment or how my body will react to it. He still has every reason to be positive, but it does seem that it will be more difficult than what he had at first described. It's still an answer and a plan and that in itself is a good thing. He said the most important thing for now is getting that labwork and making sure I can take the drug. I told him the labs had been drawn Friday. He was delighted the process had been started. He expected them to be ready as early as tomorrow but no later than this Friday. He prescribed the treatment so that as soon as the labs came in, assuming positive results, he could call me and I could start taking it immediately. He, like Dr. Olson, was adamant that no more time could be wasted.
I left feeling slightly overwhelmed and more informed all at the same time.
It was an interesting visit - one of those where you get really excited at first and think YAY - things are so much better than I thought, then the balloon is instantly deflated and you leave wondering what happened...yeah, like that :).
So, Dr. Neal walked into the exam room and said he'd spoken with Dr. Olson about the Churg Strauss diagnosis. He said he pretty much agreed with he and thought treatment was warranted because of all I have experienced. He stressed that he didn't foresee it being a big deal at all. He thought that a simple couple of months of the treatment would stop and even reverse my symptoms. We'd be able to stop the treatment and all would be well. He didn't think side effects would be a huge concern even in my situation because of the short term need. This all sounded WAY too good to be true - and we all know what that can sometimes mean. :(
Because he had mentioned that his most recent lab data was what he had ordered back in March, I pulled the reports I had brought to show him from my most recent visit to National Jewish. I had the reports from Dr. Maleki, the rheumatologist, Dr. Olson, and Dr. Katial. They were just the initial summaries from the visit, but provided more details & data than Dr. Neal had on hand. He started reading through Dr. Maleki's report immediately and making long faces and groaning. Then he started pointing his finger at me with a "wait a minute" type gesture. My stomach started to sink. I wanted to grab his hand like a 2nd grader and say "No backsies Mr.! You already gave me the good news!" I could feel my hands getting clammy as I waited...
He slowly looked up at me and said, "Okay, you've progressed quite rapidly since I saw you in March. These numbers are remarkably high. I'm afraid the outlook might be a little different than what I described..."
"What do you mean" I asked.
He proceeded to explain that my case is complicated (where haven't I heard that one before!). At this point he can't even give me a ballpark figure of how long I will need to be on the treatment or how my body will react to it. He still has every reason to be positive, but it does seem that it will be more difficult than what he had at first described. It's still an answer and a plan and that in itself is a good thing. He said the most important thing for now is getting that labwork and making sure I can take the drug. I told him the labs had been drawn Friday. He was delighted the process had been started. He expected them to be ready as early as tomorrow but no later than this Friday. He prescribed the treatment so that as soon as the labs came in, assuming positive results, he could call me and I could start taking it immediately. He, like Dr. Olson, was adamant that no more time could be wasted.
I left feeling slightly overwhelmed and more informed all at the same time.
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