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| This was actually the window at the end of the hallway I walked down. |
Wednesday, May 19, 2010
A New Room with a View
Late Wednesday I finally graduated to a regular room! Let it be known that I still had the huge IV in my neck and the drainage bags hooked to my chest. I was still losing blood, but it was apparently at a much more tolerable rate. :) We entered the room to see a wall length window with a view of Pike's Peak in the distance! Now if you must be in a hospital after heart surgery, I recommend Denver just for the view! Our pictures are terrible compared to the actual view. Honestly, I could have been looking at anything ~ the window just brightened my day!
ICU Memories
When you think about all that the body goes through in a surgery like mine, it's pretty amazing to realize how relatively soon I was able to do certain things. I, of course, was terribly frustrated with myself at the time for the things I couldn't do on my own, but looking back, I'm impressed! As I mentioned on Tuesday, I was able to sit in a chair and stand. I was on a liquid diet which was completely fine with me because I didn't want anything at all except water and ice. That night, I had a pseudo sponge bath which was beyond humiliating to me.
Wednesday morning the physical therapist came and we walked a short distance down the hallway. It was like learning to walk all over again! That afternoon they removed the pacer wires to my heart. That wasn't a favorite experience for sure! They also removed the catheter that afternoon. I remember after going to the restroom by myself that first time I stood in front of the mirror to wash my hands and caught a glimpse of my chest & the incision in the mirror. I know it may sound odd, but to that point I had not looked at it at all. I had been so focused on just dealing with what I knew I could handle that I had not even thought about looking down. It was like looking at someone else in the mirror. I looked mangled. My entire left forearm was still swollen and a solid bruise. My right arm was a near match. My wrists were covered with holes likely from blood gases. This is what Mom and Dad were looking at each time they saw me - it was horrible!
Wednesday morning the physical therapist came and we walked a short distance down the hallway. It was like learning to walk all over again! That afternoon they removed the pacer wires to my heart. That wasn't a favorite experience for sure! They also removed the catheter that afternoon. I remember after going to the restroom by myself that first time I stood in front of the mirror to wash my hands and caught a glimpse of my chest & the incision in the mirror. I know it may sound odd, but to that point I had not looked at it at all. I had been so focused on just dealing with what I knew I could handle that I had not even thought about looking down. It was like looking at someone else in the mirror. I looked mangled. My entire left forearm was still swollen and a solid bruise. My right arm was a near match. My wrists were covered with holes likely from blood gases. This is what Mom and Dad were looking at each time they saw me - it was horrible!
Monday, May 17, 2010
Open Heart Surgery
We woke to a beautiful Denver day. I felt anxious and calm all at the same time. Waiting was impossible! I was supposed to be at the hospital at noon and the surgery was scheduled to begin at 2:00 p.m. Our phones were all ringing with prayers and well wishes from friends and family. Dr. Fenster even called me to let me know Dr. Campbell was a stellar surgeon and I couldn't be in better hands. He said he was thinking of me and would be checking in with Dr. Campbell after the surgery to hear the good news.
The time finally came to head to the hospital. We checked in and I signed all the paperwork. They called me back alone first. I changed into a gown and got into the bed. They brought my parents back. The nurse started working on my IV and was finally successful in my left hand. The anethesiologist talked with us for a while, followed by a few medical students and fellows who drew a big blue X on my chest. Finally Dr. Campbell came in at 1:45 to say hi and see if we had any last minute questions. I hugged Mom and Dad as they rolled me down the hall. In the OR I remember several people rushing around me and some were introducing themselves. They were adjusting the table and everything went black...
My next memory is waking up and seeing Mom and Dad in the doorway of the room. They looked worried. I could tell by the way people were rushing around the room that things weren't all rosy. I wanted Mom and Dad to talk to me but I wasn't ready to know about the surgery. Mom started to tell me about it and I shook my head and closed my eyes. I know now that must have been very frustrating to her, but I just wasn't ready to hear what had happened. I guess they made my parents leave after I was stable because I didn't see them again until morning. The next thing I remember is someone shouting, "Toni, Toni you have to breathe! Breathe Toni!" They had been trying to take me off the ventilator for several hours, but I wasn't breathing on my own. I guess they thought a firm pep talk would help! :) I remember trying, but had no power over my lungs at the time. I just couldn't breathe on my own yet. They were finally able to take me off sometime later Tuesday morning.
That's when Mom and Dad were back and I was a bit more lucid. The nurse came in and said I needed another transfusion. That terrified me! I looked at him, then to Mom and Dad in confusion. Dad said there were some complications during my surgery. Rather than lasting three hours it took almost seven hours. It just turned out to be a very complicated surgery. One major problem was that I lost a lot of blood and continued to lose it even after surgery. I had to have several transfusions totaling eight pints in the end. That news hit me pretty hard for some reason.
I quickly realized that I wasn't following the plan outlined by Cathy Christopher for the surgery timeline. I did get to sit up on Tuesday which seemed pretty amazing. Looking back, I think my body was in a survival mode physically and mentally. I was very focused on what I needed to focus on for that moment to get by.
The time finally came to head to the hospital. We checked in and I signed all the paperwork. They called me back alone first. I changed into a gown and got into the bed. They brought my parents back. The nurse started working on my IV and was finally successful in my left hand. The anethesiologist talked with us for a while, followed by a few medical students and fellows who drew a big blue X on my chest. Finally Dr. Campbell came in at 1:45 to say hi and see if we had any last minute questions. I hugged Mom and Dad as they rolled me down the hall. In the OR I remember several people rushing around me and some were introducing themselves. They were adjusting the table and everything went black...
My next memory is waking up and seeing Mom and Dad in the doorway of the room. They looked worried. I could tell by the way people were rushing around the room that things weren't all rosy. I wanted Mom and Dad to talk to me but I wasn't ready to know about the surgery. Mom started to tell me about it and I shook my head and closed my eyes. I know now that must have been very frustrating to her, but I just wasn't ready to hear what had happened. I guess they made my parents leave after I was stable because I didn't see them again until morning. The next thing I remember is someone shouting, "Toni, Toni you have to breathe! Breathe Toni!" They had been trying to take me off the ventilator for several hours, but I wasn't breathing on my own. I guess they thought a firm pep talk would help! :) I remember trying, but had no power over my lungs at the time. I just couldn't breathe on my own yet. They were finally able to take me off sometime later Tuesday morning.
That's when Mom and Dad were back and I was a bit more lucid. The nurse came in and said I needed another transfusion. That terrified me! I looked at him, then to Mom and Dad in confusion. Dad said there were some complications during my surgery. Rather than lasting three hours it took almost seven hours. It just turned out to be a very complicated surgery. One major problem was that I lost a lot of blood and continued to lose it even after surgery. I had to have several transfusions totaling eight pints in the end. That news hit me pretty hard for some reason.
I quickly realized that I wasn't following the plan outlined by Cathy Christopher for the surgery timeline. I did get to sit up on Tuesday which seemed pretty amazing. Looking back, I think my body was in a survival mode physically and mentally. I was very focused on what I needed to focus on for that moment to get by.
Friday, May 14, 2010
The Plan
Friday morning I was a little stiff from the heart cath, but it was nothing like I had expected. That was a good thing! I was supposed to have an appointment with Dr. Olson, but now I had to have a neck and chest CT instead.
That afternoon I received a phone call from Dr. David Campbell, a cardiothoracic surgeon. He said, "Hey Toni, care if I crack your chest open Monday around 2?" I mean seriously!! What a phone call?? I told him that would work for me and he let me know that he was really looking forward to meeting me. He had been talking with Dr. Carroll, Dr. Fenster, and even Dr. Olson and was very intrigued by my case. He said Cathy, my case manager, would call later with instructions and details about the surgery.
As expected, my phone rang again and it was the very kind voice of a lady named Cathy Christopher. She explained in detail what to expect from my open heart surgery. She told me what I had to do to prepare including shower with special soap prior to arriving to the hospital. It was a lot to take in. This was the play by play...
I guess I took to heart what Cathy said and it scared me. I realized I wouldn't get to finish the school year with my students. I wouldn't get to go back to work at all. Someone else would have to do the job I am supposed to do. I probably wouldn't get to plant a garden this year. I wouldn't be able to mow my yard for a while. Dad was going to miss another week of work because of me. Mom and Dad were both going to be in Denver longer which they were
not enjoying & it was so expensive for them. These thoughts were flooding in so fast that I was losing control. I couldn't handle that right now. There was nothing I could do about any of it. I just couldn't think about it anymore. I had to focus on the good. I had to focus on the possibility that in six months I could be able to run at the park with Jackson. I had to focus on the possibility that this was the big life changing answer I had been waiting for all these years. I had to focus on the fact that I know this is part of God's good plan for me and no matter how scared I am He has is all under control.
That afternoon I received a phone call from Dr. David Campbell, a cardiothoracic surgeon. He said, "Hey Toni, care if I crack your chest open Monday around 2?" I mean seriously!! What a phone call?? I told him that would work for me and he let me know that he was really looking forward to meeting me. He had been talking with Dr. Carroll, Dr. Fenster, and even Dr. Olson and was very intrigued by my case. He said Cathy, my case manager, would call later with instructions and details about the surgery.
As expected, my phone rang again and it was the very kind voice of a lady named Cathy Christopher. She explained in detail what to expect from my open heart surgery. She told me what I had to do to prepare including shower with special soap prior to arriving to the hospital. It was a lot to take in. This was the play by play...
- Pre-op ~ they would wheel me to the OR & put me to sleep
- surgery should last 3 hours
- move to ICU
- wake with big IV in my neck
- remove the neck IV & ventilator when I wake up
- sit up Tuesday morning & move to regular floor ~ walking
- released from hospital by Wednesday or Thursday
I guess I took to heart what Cathy said and it scared me. I realized I wouldn't get to finish the school year with my students. I wouldn't get to go back to work at all. Someone else would have to do the job I am supposed to do. I probably wouldn't get to plant a garden this year. I wouldn't be able to mow my yard for a while. Dad was going to miss another week of work because of me. Mom and Dad were both going to be in Denver longer which they were
not enjoying & it was so expensive for them. These thoughts were flooding in so fast that I was losing control. I couldn't handle that right now. There was nothing I could do about any of it. I just couldn't think about it anymore. I had to focus on the good. I had to focus on the possibility that in six months I could be able to run at the park with Jackson. I had to focus on the possibility that this was the big life changing answer I had been waiting for all these years. I had to focus on the fact that I know this is part of God's good plan for me and no matter how scared I am He has is all under control.
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| Perfect timing! Melodie sent some pics of Jackson. :) |
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| It was just what I needed! |
Thursday, May 13, 2010
"Oh My Gosh That Hole is Huge!"
Even though I was desensitized and ready, I was still nervous (whether I wanted anyone to know it or not)! How could I not be? I was about to undergo a procedure (that they were calling a surgery) on my heart which wasn't even a medical concern in my life one month ago! Yeah, I was nervous. I didn't like the idea of a big tube being stuck in through the artery in my groin and threaded up through my body to my heart. I didn't like the idea of being strong on the outside while I was falling apart on the inside and completely freaking out! I knew God was in control and still totally believed it was all for good. I was just scared about what was happening in the right now. Once again though, God did give me the strength to pull it together.
We went to the University of Colorado Hospital in Denver and checked in on the third floor at six o'clock in the morning. It didn't take long for them to call me back to prep me for everything. I dressed in their lovely hospital gown and waited for the Fellow to come and talk with us. He discussed the timeline and procedures with me and my parents and wheeled me away.
In the cath lab, there were four people with me. Mike, the nurse that stayed near my head most of the time and answered any questions I had along with his other duties. Sarah, another nurse who stayed at the other end of the table and worked with monitors and other things. The Fellow, (sadly I don't recall his name) who worked side by side with Dr. Carroll and of course, Dr. Carroll. As Mike and Sarah prepped me for the procedure they were very talkative and friendly. They did their best to make me as comfortable as possible. Dr. Carroll came in and told Mike that he could not give me any sedative at all for the procedure. Mike grabbed my hand and whispered, "It's okay, you're tough, you won't even need it. I'll be right here the whole time." I didn't know whether to be comforted or concerned. My mind was just a whirlwind of thoughts and confusion. For some reason, I focused in on my O2 sats on the only monitor I could really see and just fixated on that and my heart rate. I was watching my stats go up and down as I listened to the doctors talk about things I didn't really understand.
Suddenly, Dr. Carroll got very quiet, asked for more of something and then shouted, "Oh my gosh! That hole is huge! Look at that hole!" I asked Mike if that was rare. His eyes were very big as he nodded yes. Minutes later, Dr. Carroll seemed frustrated as he was whispering something to the Fellow. I heard him say, "This problem is much more significant than we expected." I calmly called his name from the table, "Dr. Carroll, what do you mean, more significant?" He took a deep breath, almost as if he'd forgotten I was awake, he walked closer to my head and said, "I can't repair the hole or the other defect through the cath, Toni. You're going to have to have open heart surgery." "When?" I asked. "Immediately, you can't get back on a plane. These problems are too serious. I know the best surgeon and I'll call him as soon as I get out of here."
I don't remember a lot more about what happened after that conversation. Mom and Dad said he came out and talked with them very openly about his surprise and how uncommon the defects were. He said he would have a surgeon named Dr. David Campbell call me personally to talk to me and schedule the surgery. He was sure he would take the case because it was so intriguing.
We spent the rest of the afternoon at the hotel resting after the procedure. Everything that I had felt before the cath was gone. It's so hard to describe how I was feeling that afternoon. It's almost like I was in shock ~ as if I wasn't feeling anything but "okayness".
We went to the University of Colorado Hospital in Denver and checked in on the third floor at six o'clock in the morning. It didn't take long for them to call me back to prep me for everything. I dressed in their lovely hospital gown and waited for the Fellow to come and talk with us. He discussed the timeline and procedures with me and my parents and wheeled me away.
In the cath lab, there were four people with me. Mike, the nurse that stayed near my head most of the time and answered any questions I had along with his other duties. Sarah, another nurse who stayed at the other end of the table and worked with monitors and other things. The Fellow, (sadly I don't recall his name) who worked side by side with Dr. Carroll and of course, Dr. Carroll. As Mike and Sarah prepped me for the procedure they were very talkative and friendly. They did their best to make me as comfortable as possible. Dr. Carroll came in and told Mike that he could not give me any sedative at all for the procedure. Mike grabbed my hand and whispered, "It's okay, you're tough, you won't even need it. I'll be right here the whole time." I didn't know whether to be comforted or concerned. My mind was just a whirlwind of thoughts and confusion. For some reason, I focused in on my O2 sats on the only monitor I could really see and just fixated on that and my heart rate. I was watching my stats go up and down as I listened to the doctors talk about things I didn't really understand.
Suddenly, Dr. Carroll got very quiet, asked for more of something and then shouted, "Oh my gosh! That hole is huge! Look at that hole!" I asked Mike if that was rare. His eyes were very big as he nodded yes. Minutes later, Dr. Carroll seemed frustrated as he was whispering something to the Fellow. I heard him say, "This problem is much more significant than we expected." I calmly called his name from the table, "Dr. Carroll, what do you mean, more significant?" He took a deep breath, almost as if he'd forgotten I was awake, he walked closer to my head and said, "I can't repair the hole or the other defect through the cath, Toni. You're going to have to have open heart surgery." "When?" I asked. "Immediately, you can't get back on a plane. These problems are too serious. I know the best surgeon and I'll call him as soon as I get out of here."
I don't remember a lot more about what happened after that conversation. Mom and Dad said he came out and talked with them very openly about his surprise and how uncommon the defects were. He said he would have a surgeon named Dr. David Campbell call me personally to talk to me and schedule the surgery. He was sure he would take the case because it was so intriguing.
We spent the rest of the afternoon at the hotel resting after the procedure. Everything that I had felt before the cath was gone. It's so hard to describe how I was feeling that afternoon. It's almost like I was in shock ~ as if I wasn't feeling anything but "okayness".
Wednesday, May 12, 2010
Desensitized and Ready
Just as Dr. Katial had explained, the second day of desensitization was much easier than the first. My reactions, if any were much milder. Most of the day was quite boring. I worked on report cards on the laptop from my hospital bed and got plenty of doctor ordered rest. I felt so bad for Mom and Dad. I'm sure it was a miserable day for both of them. I tried to get them to go sight seeing or at least go out for a nice lunch, but they wouldn't hear of it.
Dr. Fenster came in for my appointment about mid-morning. He spent time further explaining the information they had about my heart and why he thought the cath was so important. He stressed that fact that at this point they all believed Dr. Carroll would be able to close the hole with a device and the other defect was so minor that it could be left alone. The defects had been so hard to detect in all the scans and tests that they were really believing that they were going to be rather simple for Dr. Carroll to repair. As soon as I was desensitized I would be ready to go!
Dr. Fenster came in for my appointment about mid-morning. He spent time further explaining the information they had about my heart and why he thought the cath was so important. He stressed that fact that at this point they all believed Dr. Carroll would be able to close the hole with a device and the other defect was so minor that it could be left alone. The defects had been so hard to detect in all the scans and tests that they were really believing that they were going to be rather simple for Dr. Carroll to repair. As soon as I was desensitized I would be ready to go!
Tuesday, May 11, 2010
Gotta Get Desensitized
I woke up pretty nervous. A lot was on the line today and I wasn't feeling great. I wasn't sure what kind of an impact that would have on the procedures they had scheduled for me. I was also excited about Dad meeting everyone at National Jewish. He would finally see how wonderful this place is in person.
Upon arrival, instead of starting with my appointment with Dr. Olson which was on the schedule, they sent me straight to the MIDC (which is their version of ICU) to prep me for the aspirin desensitization. They said all the doctors on my schedule would come to meet with me there instead. I started with a spirometry which showed my lung function was below 40%. Not the lowest I've ever been, but not high enough for Dr. Katial to be comfortable to go forward with desensitization. Dr. Olson came over and they both examined me and ordered a chest x-ray & immediate meds/breathing treatments to improve my lung function. The x-ray showed pneumonia. I heard the two doctors discussing my treatment outside my room. Dr. Olson convinced Dr. Katial to go forward with the procedure. She was sure that I was strong enough to handle it even with the compromised lung function. We just couldn't postpone the heart cath again and she knew the desensitization would take the full two days.
Dr. Katial came in to talk with me and complete the consent form. He told me how uncomfortable he was about moving forward with the procedure and asked me not to sign the consent. I understood what was on the line in every way. I completely trusted that the procedure was meant to happen and that any complications could be handled by Dr. Katial and his team at National Jewish.
They did move forward with the procedure. The first day was pretty rocky. I never had to be intubated, but I did react to the increased doses of aspirin. Dr. Katial was like a nervous new parent. He was in and out of the MIDC checking on me and his team constantly. Dr. Olson also stopped in a few times. She started me on strong antibiotics for the pneumonia and assured us that she would get me well enough for the heart docs to move forward with everything on Thursday.
Needless to say, even though I was in one room all day, I was completely exhausted by the end of it. We left around four o'clock that afternoon with orders to return at eight the next morning to finish the procedure.
Upon arrival, instead of starting with my appointment with Dr. Olson which was on the schedule, they sent me straight to the MIDC (which is their version of ICU) to prep me for the aspirin desensitization. They said all the doctors on my schedule would come to meet with me there instead. I started with a spirometry which showed my lung function was below 40%. Not the lowest I've ever been, but not high enough for Dr. Katial to be comfortable to go forward with desensitization. Dr. Olson came over and they both examined me and ordered a chest x-ray & immediate meds/breathing treatments to improve my lung function. The x-ray showed pneumonia. I heard the two doctors discussing my treatment outside my room. Dr. Olson convinced Dr. Katial to go forward with the procedure. She was sure that I was strong enough to handle it even with the compromised lung function. We just couldn't postpone the heart cath again and she knew the desensitization would take the full two days.
Dr. Katial came in to talk with me and complete the consent form. He told me how uncomfortable he was about moving forward with the procedure and asked me not to sign the consent. I understood what was on the line in every way. I completely trusted that the procedure was meant to happen and that any complications could be handled by Dr. Katial and his team at National Jewish.
They did move forward with the procedure. The first day was pretty rocky. I never had to be intubated, but I did react to the increased doses of aspirin. Dr. Katial was like a nervous new parent. He was in and out of the MIDC checking on me and his team constantly. Dr. Olson also stopped in a few times. She started me on strong antibiotics for the pneumonia and assured us that she would get me well enough for the heart docs to move forward with everything on Thursday.
Needless to say, even though I was in one room all day, I was completely exhausted by the end of it. We left around four o'clock that afternoon with orders to return at eight the next morning to finish the procedure.
Monday, May 10, 2010
Rollin' with the changes
The whole heart situation was still a little fuzzy at this point. No one really knew how serious it was, but it seemed that they had a feeling it was a bigger deal than they were letting on. Dad took off work and joined us on this trip. The original plan was for us to fly to Denver on Sunday so I would be ready for the heart cath on Monday morning. I would have appointments at National Jewish on Tuesday and Wednesday and fly back home on Thursday. The plan was simple.
Sunday evening I got a call that the plan had changed. They decided I needed to go through aspirin desensitization before the heart cath could take place. That way, if they needed to implant the device to close the hole in my heart they would be able to do it and put me on aspirin afterwards. This meant we would be rolling with some changes. Monday was now wide open and the cath was scheduled for Thursday.
We planned a trip to the Denver Science Museum and did some other random things that Monday. I talked with the airline and changed our flight to Saturday morning. I could tell this trip was going to be different from our last one...
Sunday evening I got a call that the plan had changed. They decided I needed to go through aspirin desensitization before the heart cath could take place. That way, if they needed to implant the device to close the hole in my heart they would be able to do it and put me on aspirin afterwards. This meant we would be rolling with some changes. Monday was now wide open and the cath was scheduled for Thursday.
We planned a trip to the Denver Science Museum and did some other random things that Monday. I talked with the airline and changed our flight to Saturday morning. I could tell this trip was going to be different from our last one...
Thursday, May 6, 2010
To Travel Well and To Be Well
I walked into Cheddar's where I was expecting to meet a couple of friends for dinner before my weekend departure to Denver. I was surprised (and overtaken by emotion) to see a huge gathering of friends! They were all there to cheer me on, encourage me, and send me off to get better in the hands of the best doctors around.
You would think that was enough, but not for my dear friends. I had asked Stacey if I could borrow her luggage for the trip. Instead of borrowed luggage, everyone had chipped in and bought me brand new beautiful luggage of my very own! Apparently this secret plan was in the works before I even asked to borrow the luggage! :) Each suitcase was stuffed full of fun things for me to do when I returned from Denver well! I can't even explain how it feels to have so many people supporting me with such belief and hope!
You would think that was enough, but not for my dear friends. I had asked Stacey if I could borrow her luggage for the trip. Instead of borrowed luggage, everyone had chipped in and bought me brand new beautiful luggage of my very own! Apparently this secret plan was in the works before I even asked to borrow the luggage! :) Each suitcase was stuffed full of fun things for me to do when I returned from Denver well! I can't even explain how it feels to have so many people supporting me with such belief and hope!
Friday, April 16, 2010
Team Toni
Day Five ~ Friday, April 16, 2010
My last day at National Jewish was certain to be a big one. Mom and I were hoping to have a lot of questions answered. Deep down I'm sure we were both still dreaming of leaving Denver with a nice little treatment plan wrapped up in a neat little package! I arrived at 8:00 a.m. to begin my pharmacokinetics testing. It was be a day long schedule of taking steroids & having blood draws to analyze how my body metabolizes the medicine. In between blood draws I had an OT evaluation followed by a session with a physical therapist.
It was finally 12:30 and time for my appointment with cardiologist, Dr. Brett Fenster. I was so nervous about this appointment. I guess lungs have been my thing for so long, I just didn't feel like I knew enough about "heart stuff" to even talk to a cardiologist. I don't even have to say it though, you know he was amazing.
He started by explaining the possible hole and how everyone is born with one in their heart. He explained all the possibilities as he sketched them. The hole in my heart could be a PFO that could be no big deal at all. It could also be an ASD which is less common and would have to be repaired surgically. Another possibility was that it might be a hole that could be repaired with a device through a heart cath. Besides the hole, I seemed to have another possible congenital heart defect. They thought I could have a partial anomalous pulmonary venous return which is basically a vein routed the wrong direction that was possibly keeping infections in my system (& causing other problems I still don't understand).
He was very cautious about the connection between my respiratory problems and these congenital heart problems at first. I waited patiently for him to explain his thoughts and advise us on what to do. At first he recommended having a heart cath sometime back home, maybe later in the summer just to have it all checked out. It seemed like no big deal.
Then, he began to squinch his lips and forehead as he read further through my chart. He was very intrigued by my low O2 saturations and my elevated heart rate. With this information he casually suggested seeing a cardiologist in Denver so he could work with them. This only confused me more, so I pressed him for more guidance. At that point he wanted more information so he sent me over to prep for the cardio stress/agitated saline test.
By that point in the week, my veins were as spent as I was. A team of people were working on my IV when finally a nurse named Kristie came through! The rest of the test went as expected until the end. As I mentioned earlier, my resting heart rate has always been very high. It would usually be around the 120 range. After the test, Kristie and the tech, Rachel became very concerned because my heart rate was near 200 and not falling. They called the cardiologist in and he tried everything from having me drink water to massaging my carotid. They finally got it down to the 150 range. I was due for a nuclear lung scan upstairs so they decided the only way I could go was in a wheelchair.
At the elevators we crossed paths with Dr. Olson. She was clearly busy, but stopped in her tracks when she saw me in the wheelchair. She asked Kristie for full details on the situation. Rather than go on her way, she asked where to find Dr. Fenster because she wanted to discuss my case and the test results with him immediately. I felt like I had a team of super heroes fighting for me and working together to solve my case.
About twenty minutes later, I was on the table in the nuclear scan room. There was a knock and a familiar voice at the door. It was Dr. Fenster asking the tech if he could come in to talk with me and touch me. She welcomed him in and he pulled up a chair next to me at the table. He took my pulse and asked how I was feeling. He told me he and Dr. Olson had been talking and that he'd also spoken with my Mom. He said they thought it would be best for me to come back to Denver in a month to have a heart cath with Dr. Carroll. He really believed Dr. Carroll would be able to see what was wrong with my heart and hopefully repair it through the cath. With that, he squeezed my hand, pushed the chair away, and said good bye.
That afternoon, I walked through the Rose Petal Place toy scented entryway slightly transformed from the person I was six days before. No one could have prepared me for impact it would have on my life. And this place, this National Jewish ~ and Denver, this has become more than a place for me, it is an indescribable part of me now.
My last day at National Jewish was certain to be a big one. Mom and I were hoping to have a lot of questions answered. Deep down I'm sure we were both still dreaming of leaving Denver with a nice little treatment plan wrapped up in a neat little package! I arrived at 8:00 a.m. to begin my pharmacokinetics testing. It was be a day long schedule of taking steroids & having blood draws to analyze how my body metabolizes the medicine. In between blood draws I had an OT evaluation followed by a session with a physical therapist.
It was finally 12:30 and time for my appointment with cardiologist, Dr. Brett Fenster. I was so nervous about this appointment. I guess lungs have been my thing for so long, I just didn't feel like I knew enough about "heart stuff" to even talk to a cardiologist. I don't even have to say it though, you know he was amazing.
He started by explaining the possible hole and how everyone is born with one in their heart. He explained all the possibilities as he sketched them. The hole in my heart could be a PFO that could be no big deal at all. It could also be an ASD which is less common and would have to be repaired surgically. Another possibility was that it might be a hole that could be repaired with a device through a heart cath. Besides the hole, I seemed to have another possible congenital heart defect. They thought I could have a partial anomalous pulmonary venous return which is basically a vein routed the wrong direction that was possibly keeping infections in my system (& causing other problems I still don't understand).
Then, he began to squinch his lips and forehead as he read further through my chart. He was very intrigued by my low O2 saturations and my elevated heart rate. With this information he casually suggested seeing a cardiologist in Denver so he could work with them. This only confused me more, so I pressed him for more guidance. At that point he wanted more information so he sent me over to prep for the cardio stress/agitated saline test.
By that point in the week, my veins were as spent as I was. A team of people were working on my IV when finally a nurse named Kristie came through! The rest of the test went as expected until the end. As I mentioned earlier, my resting heart rate has always been very high. It would usually be around the 120 range. After the test, Kristie and the tech, Rachel became very concerned because my heart rate was near 200 and not falling. They called the cardiologist in and he tried everything from having me drink water to massaging my carotid. They finally got it down to the 150 range. I was due for a nuclear lung scan upstairs so they decided the only way I could go was in a wheelchair.
At the elevators we crossed paths with Dr. Olson. She was clearly busy, but stopped in her tracks when she saw me in the wheelchair. She asked Kristie for full details on the situation. Rather than go on her way, she asked where to find Dr. Fenster because she wanted to discuss my case and the test results with him immediately. I felt like I had a team of super heroes fighting for me and working together to solve my case.
About twenty minutes later, I was on the table in the nuclear scan room. There was a knock and a familiar voice at the door. It was Dr. Fenster asking the tech if he could come in to talk with me and touch me. She welcomed him in and he pulled up a chair next to me at the table. He took my pulse and asked how I was feeling. He told me he and Dr. Olson had been talking and that he'd also spoken with my Mom. He said they thought it would be best for me to come back to Denver in a month to have a heart cath with Dr. Carroll. He really believed Dr. Carroll would be able to see what was wrong with my heart and hopefully repair it through the cath. With that, he squeezed my hand, pushed the chair away, and said good bye.
That afternoon, I walked through the Rose Petal Place toy scented entryway slightly transformed from the person I was six days before. No one could have prepared me for impact it would have on my life. And this place, this National Jewish ~ and Denver, this has become more than a place for me, it is an indescribable part of me now.
Thursday, April 15, 2010
This is sooo God's plan
Day Four ~ Thursday, April 15, 2010
We got to sleep in a bit today (which of course I didn't). :) We met with Dr. Olson for our follow up appointment at 9:00 a.m. It was a long and deeply intense appointment. Looking back I wish I'd had a recorder because it was simply too much to take in. It was shocking to hear how many things they had found medically wrong with me in a few short days. Some things were more severe than others of course. The big ticket item was that on the chest CT she had noticed that veins or vessels that were supposed to be small were large and vice versa. This was apparently a red flag for a bigger problem. She said I needed an MRA w/o contrast and a cardio stress test. She showed us what seemed to be a hole in my heart, but said it was difficult to detect. She also explained that anytime I exerted myself my O2 would drop in the low 80s. My years of coping made it harder to detect because I apparently did not react to my stats in the typical way. She looked me in the eyes and called me a hot mess but promised they were all over making a plan to change things!
Mom and I were both in a bit of a fog walking away from that appointment. My whole understanding of my medical status had just been shattered. I wasn't upset or even scared at the time, I think I was just frozen with too much information. We were talking with scheduling about the cardio tests when I realized I was almost late for my bicycle lung function test on the 3rd floor :(.
This test was by far the hardest thing I went through at National Jewish that first week. If you recall, the impedance probe had not been removed at this time and was getting more uncomfortable with each passing hour. This particular test required an A-line which is an IV in the artery in the wrist to pull blood gases throughout the session. It took 4 people more than 12 tries (I spaced out) using both wrists to get the A-line started. My heart rate was so high at that point they almost discontinued the test. Next, they put a mask over my head and strap it to monitors. Finally, I was supposed to pedal as hard and fast as possible for X amount of time. What a gift it was to leave that room and see a text from Debbie telling me some silly something! Thankfully, when it was over, it was time to have the impedance probe removed! What a relief! Then we had a short break for lunch while they worked on fitting the new tests into my schedule.
During lunch I received a call from Gina, my scheduler, saying God had worked yet another miracle and MRA schedule had opened up! They were ready for me right away. Everything else had been worked out as well. It was clear that God was not only with me, He was moving mountains for me!
If ever there was a time for a friendly face, this was probably it and I got it. Kevin from radiology was waiting for us as we stepped off the elevator. He took my labels and asked us to sit for just a minute while he grabbed the paperwork. It was perfect timing, because while we waited, Donald Sutherland, the actor walked through! For real! It was pretty neat seeing him in person. Kevin returned and prepped me for the MRA w/o contrast which meant yet another IV. Altogether, I was in the "tube" for 3 1/2 hours. They called in the radiologist, pulmonologist, and cardiologist to try and help with the imaging so they could figure out what was going on with my heart.
I rounded out the day with a tailored barium swallow test and a speech consult with the therapist Heather Hughes. These appointments were related to the reflux and the VCD. I learned that a speech therapist can help me retrain my vocal cords so they will be more controlled.
That night I ran a bit of a fever. We went out for dinner and right back to the house. With it being such a big day for information, Mom was catching up on a lot of phone calls. I remember sitting on the couch listening to her recount the day just feeling so confident that this is sooo God's plan. I didn't get it. I wasn't enjoying some of it. But it didn't matter, somehow, someday, something good would come from all of this.
We got to sleep in a bit today (which of course I didn't). :) We met with Dr. Olson for our follow up appointment at 9:00 a.m. It was a long and deeply intense appointment. Looking back I wish I'd had a recorder because it was simply too much to take in. It was shocking to hear how many things they had found medically wrong with me in a few short days. Some things were more severe than others of course. The big ticket item was that on the chest CT she had noticed that veins or vessels that were supposed to be small were large and vice versa. This was apparently a red flag for a bigger problem. She said I needed an MRA w/o contrast and a cardio stress test. She showed us what seemed to be a hole in my heart, but said it was difficult to detect. She also explained that anytime I exerted myself my O2 would drop in the low 80s. My years of coping made it harder to detect because I apparently did not react to my stats in the typical way. She looked me in the eyes and called me a hot mess but promised they were all over making a plan to change things!
Mom and I were both in a bit of a fog walking away from that appointment. My whole understanding of my medical status had just been shattered. I wasn't upset or even scared at the time, I think I was just frozen with too much information. We were talking with scheduling about the cardio tests when I realized I was almost late for my bicycle lung function test on the 3rd floor :(.
This test was by far the hardest thing I went through at National Jewish that first week. If you recall, the impedance probe had not been removed at this time and was getting more uncomfortable with each passing hour. This particular test required an A-line which is an IV in the artery in the wrist to pull blood gases throughout the session. It took 4 people more than 12 tries (I spaced out) using both wrists to get the A-line started. My heart rate was so high at that point they almost discontinued the test. Next, they put a mask over my head and strap it to monitors. Finally, I was supposed to pedal as hard and fast as possible for X amount of time. What a gift it was to leave that room and see a text from Debbie telling me some silly something! Thankfully, when it was over, it was time to have the impedance probe removed! What a relief! Then we had a short break for lunch while they worked on fitting the new tests into my schedule.
During lunch I received a call from Gina, my scheduler, saying God had worked yet another miracle and MRA schedule had opened up! They were ready for me right away. Everything else had been worked out as well. It was clear that God was not only with me, He was moving mountains for me!
If ever there was a time for a friendly face, this was probably it and I got it. Kevin from radiology was waiting for us as we stepped off the elevator. He took my labels and asked us to sit for just a minute while he grabbed the paperwork. It was perfect timing, because while we waited, Donald Sutherland, the actor walked through! For real! It was pretty neat seeing him in person. Kevin returned and prepped me for the MRA w/o contrast which meant yet another IV. Altogether, I was in the "tube" for 3 1/2 hours. They called in the radiologist, pulmonologist, and cardiologist to try and help with the imaging so they could figure out what was going on with my heart.
I rounded out the day with a tailored barium swallow test and a speech consult with the therapist Heather Hughes. These appointments were related to the reflux and the VCD. I learned that a speech therapist can help me retrain my vocal cords so they will be more controlled.
That night I ran a bit of a fever. We went out for dinner and right back to the house. With it being such a big day for information, Mom was catching up on a lot of phone calls. I remember sitting on the couch listening to her recount the day just feeling so confident that this is sooo God's plan. I didn't get it. I wasn't enjoying some of it. But it didn't matter, somehow, someday, something good would come from all of this.
Wednesday, April 14, 2010
Just Take a Breath & Smile
Day Three ~ Wednesday, April 14, 2010
I was wide awake very early Wednesday morning. It was only three something in Denver and Stacey was doing her thing to brighten my day with antics from our classrooms. We texted back and forth for a bit until she had to head to work. Little did I know how different this day was going to be.
It started with a simple ENT consult with Dr. Todd Kingdom. Like every other doctor at National Jewish, he must have had to pass the phenomenal doctor test to be there! He was wonderful. He explained my tri-ad asthma a bit more and reviewed the sinus CT. He felt like with the other things Dr. Olson was focusing on, sinus surgery was something that could be put on the back burner. He hoped the sinus problems would be eliminated by resolving the other related problems over time.
That was the end of simple for the day. I went to the dreaded third floor for a bronchial provocation test & a laryngoscopy. Dr. Olson performed the procedure. The laryngoscopy revealed that I had severe VCD (vocal cord dysfunction) which means that my vocal cords simply close off my airway constantly and uncontrollably adding to my breathing problems. She also shared that they had found something on the ECHO and needed to do further testing in the cardiac unit. She was trying to work out the schedule to add several more tests and a cardiology consult.
After being slammed with that information, I had to go to the MIDC procedure area for a bronchoscopy (also by Dr. Olson) and an impedance insertion. With only minutes to spare, I tried to fill Mom in on what Dr. Olson had said. It was pretty overwhelming at the time especially when you think about the fact that I had been living under the strong impression that my problem was strictly asthma for years. So much was going through my head and there I was heading in for another IV and anesthesia. There was no time to process anything, I just had to move forward and know it was all for good.
I woke up from the bronchoscopy to the comforting voice of Dr. Olson telling me it was over. They moved me to a recovery room where they inserted the impedance probe. That was not my cup of tea! It was to test for reflux which can also trigger asthma symptoms. The probe had to stay in for 24 hours. It was horrid. The probe results revealed that I have silent reflux which trigger asthma exacerbations.
The last thing of the day was a six-minute rehab walk test and they sent us on our way. I remember being pretty quiet that night. It had been a taxing day, but I don't think I was as exhausted physically as I was mentally. I was worried about Mom and didn't want to make things harder on her. I was feeling guilty about not being at work and doing my job. I had missed so much work already for the year. Finally, there was the confusion factor. What was going on with this information? I was at the National Jewish Lung Institute because I had uncontrolled asthma. Where did this heart stuff come into play? That's when I did what I often do. I stopped my thoughts, took a breath, smiled, and said everything will be okay. I knew it was all for the good of God's plan so I did all I could do to press on.
I was wide awake very early Wednesday morning. It was only three something in Denver and Stacey was doing her thing to brighten my day with antics from our classrooms. We texted back and forth for a bit until she had to head to work. Little did I know how different this day was going to be.
It started with a simple ENT consult with Dr. Todd Kingdom. Like every other doctor at National Jewish, he must have had to pass the phenomenal doctor test to be there! He was wonderful. He explained my tri-ad asthma a bit more and reviewed the sinus CT. He felt like with the other things Dr. Olson was focusing on, sinus surgery was something that could be put on the back burner. He hoped the sinus problems would be eliminated by resolving the other related problems over time.
That was the end of simple for the day. I went to the dreaded third floor for a bronchial provocation test & a laryngoscopy. Dr. Olson performed the procedure. The laryngoscopy revealed that I had severe VCD (vocal cord dysfunction) which means that my vocal cords simply close off my airway constantly and uncontrollably adding to my breathing problems. She also shared that they had found something on the ECHO and needed to do further testing in the cardiac unit. She was trying to work out the schedule to add several more tests and a cardiology consult.
After being slammed with that information, I had to go to the MIDC procedure area for a bronchoscopy (also by Dr. Olson) and an impedance insertion. With only minutes to spare, I tried to fill Mom in on what Dr. Olson had said. It was pretty overwhelming at the time especially when you think about the fact that I had been living under the strong impression that my problem was strictly asthma for years. So much was going through my head and there I was heading in for another IV and anesthesia. There was no time to process anything, I just had to move forward and know it was all for good.
I woke up from the bronchoscopy to the comforting voice of Dr. Olson telling me it was over. They moved me to a recovery room where they inserted the impedance probe. That was not my cup of tea! It was to test for reflux which can also trigger asthma symptoms. The probe had to stay in for 24 hours. It was horrid. The probe results revealed that I have silent reflux which trigger asthma exacerbations.
The last thing of the day was a six-minute rehab walk test and they sent us on our way. I remember being pretty quiet that night. It had been a taxing day, but I don't think I was as exhausted physically as I was mentally. I was worried about Mom and didn't want to make things harder on her. I was feeling guilty about not being at work and doing my job. I had missed so much work already for the year. Finally, there was the confusion factor. What was going on with this information? I was at the National Jewish Lung Institute because I had uncontrolled asthma. Where did this heart stuff come into play? That's when I did what I often do. I stopped my thoughts, took a breath, smiled, and said everything will be okay. I knew it was all for the good of God's plan so I did all I could do to press on.
Tuesday, April 13, 2010
Scans & Pharmacokinetics
Day Two ~ Tuesday, April 13, 2010
We wrapped up the day with a physical therapy evaluation and more lung function tests on the dreaded third floor. In a nutshell, Tuesday turned out to be an extremely informative day.
Tuesday started with scans and the beginning of another National Jewish friendship. :) Kevin in radiology performed my chest & sinus CTs & the chest X-ray. He was yet another staff member that embodied the standard of this place.
From radiology, I moved on to a nutrition consult followed by an esophogram/barium swallow test. The next appointment was with Dr. Katial, an asthma/immunology specialist. He was a very knowledgeable and kind man. He discussed the severity of my asthma and how treatment was complicated because of my lack of triggers. I have no allergies, but I do fall in the less common catagory of aspirin sensitivity. He added an ENT consult to my schedule and had a few other ideas he wanted to discuss with Dr. Olson. I was very impressed with how willing he was to work with my other doctor to figure things out.
After a quick lunch in the cafeteria, we headed up to meet Dr. Spahn for pharmacokinetics. Wow is all I can say. He used football analogies to explain how the body metabolizes steroids and much more. It was a fascinating lesson from which I've included the diagrams for the sake of the memory more than comprehension! :) He described problems caused from long term steroid use and explained many of the irreversible side effects. All in all, we had to swallow a lot of tough news in this session. I'd been fighting Dr. Greisner on the steroids for years because I knew they were bad. The list included bone deterioration, skin thinning, immune deficiency, cataracts, glaucoma, weight gain, bruising, insomnia, muscle /joint pain, muscle weakness, and elevated heart rate. The good news was that Dr. Spahn & Dr. Olson were running a pharmacokinetics test so that a plan to stop the steroids could be developed!
Monday, April 12, 2010
Introductions & Needles
Day One ~Monday, April 12, 2010
Brimming with anticipation, nerves, and hope I was as ready as ever to get this adventure rolling! I really felt the prayers and support from all of my family and friends back home showering over us that morning. It's hard to describe how much power a little text can pack. The encouraging messages on the way maintained my stamina many times!
We checked in at the concierge desk where we met the lovely Ms. Janie. Her smiles and trusted information quickly became important parts of our days. My schedule began with a spirometry (lung function test) that didn't go so well. Spiros have always been very frustrating for me because the nurse usually seems to believe that I'm not trying my best. Anyone who knows me, knows that question is an immediate blow to me personally. I was very familiar with this test and knew I was here to get help. I couldn't get down on myself this early!
My name was called by Kaci Morgan, Dr. Olson's nurse. The next ninety minutes are a bit of a blur. I clearly recall feeling at peace when I was with Kaci and Dr. Olson. They both had such a comforting personna. They were genuine, likable, and impressively intelligent. Dr. Olson talked in depth about my history and already had a basic plan for the week. She explained that as she reviewed results daily, my schedule could change to follow the findings. I remember that she was a bit surprised at how I coped with my illness. Even on that first meeting she impressed to me that I was functioning beyond my stats. I had been living in distress for so long that it had become normal to me. That was about to change.
Skin allergy testing was next on the list. They tested for 100 allergens. The timer went off and the tech walked back into the room to check my back. She just said, "Oh my goodness! I have to go get someone." Seriously! I was baffled? I wasn't itching at all. What was going on? She returned with someone else who said, "What?!" I asked what was wrong. At the same time they both said that I had not responded to ANYTHING except the tester. That meant I didn't have any allergies at all. Neither of them had ever seen a completely negative test before! I thought that was pretty funny!
The next tests were all heart related. Mom and I were confused at first, but we knew it was all in the plan. A very sweet lady named Lynn did an ECG, a routine ECHO, and an ECHO with agitated saline. I left 100 tiny needles to have my first IV of the week. :( IVs and my body just don't get along. Richard, the nurse, finally found a site for the IV to start the ECHO with agitated saline (also called a bubble test). They inject bubbles through the bloodstream to find leakages in the heart. Now I know, that Dr. Olson's first indicator of my congenital heart problem was during a test at 4:00 on Monday. I had no idea at the time. They removed the IV and sent me on my way.
The final test of the day involved a dreaded blood gas. It was up on the third floor of the main building. It soon became my least favorite place in National Jewish. I have to admit, I was wearing down a bit. I had been through the sleep study that night, this pretty intense first day, and now I was in a tiny room where a nice lady named Brenda was trying to dig a needle down into my wrist to get blood from my artery. On the sixth try she was able to get the blood she needed. I completed the six-minute walk test and she told me I had done a great job.
Back at the smelly house I was greeted by uplifting messages on facebook, sweet texts, and phone calls with Dad and friends. It was a good first day.
Brimming with anticipation, nerves, and hope I was as ready as ever to get this adventure rolling! I really felt the prayers and support from all of my family and friends back home showering over us that morning. It's hard to describe how much power a little text can pack. The encouraging messages on the way maintained my stamina many times!
We checked in at the concierge desk where we met the lovely Ms. Janie. Her smiles and trusted information quickly became important parts of our days. My schedule began with a spirometry (lung function test) that didn't go so well. Spiros have always been very frustrating for me because the nurse usually seems to believe that I'm not trying my best. Anyone who knows me, knows that question is an immediate blow to me personally. I was very familiar with this test and knew I was here to get help. I couldn't get down on myself this early!
My name was called by Kaci Morgan, Dr. Olson's nurse. The next ninety minutes are a bit of a blur. I clearly recall feeling at peace when I was with Kaci and Dr. Olson. They both had such a comforting personna. They were genuine, likable, and impressively intelligent. Dr. Olson talked in depth about my history and already had a basic plan for the week. She explained that as she reviewed results daily, my schedule could change to follow the findings. I remember that she was a bit surprised at how I coped with my illness. Even on that first meeting she impressed to me that I was functioning beyond my stats. I had been living in distress for so long that it had become normal to me. That was about to change.
Skin allergy testing was next on the list. They tested for 100 allergens. The timer went off and the tech walked back into the room to check my back. She just said, "Oh my goodness! I have to go get someone." Seriously! I was baffled? I wasn't itching at all. What was going on? She returned with someone else who said, "What?!" I asked what was wrong. At the same time they both said that I had not responded to ANYTHING except the tester. That meant I didn't have any allergies at all. Neither of them had ever seen a completely negative test before! I thought that was pretty funny!
The next tests were all heart related. Mom and I were confused at first, but we knew it was all in the plan. A very sweet lady named Lynn did an ECG, a routine ECHO, and an ECHO with agitated saline. I left 100 tiny needles to have my first IV of the week. :( IVs and my body just don't get along. Richard, the nurse, finally found a site for the IV to start the ECHO with agitated saline (also called a bubble test). They inject bubbles through the bloodstream to find leakages in the heart. Now I know, that Dr. Olson's first indicator of my congenital heart problem was during a test at 4:00 on Monday. I had no idea at the time. They removed the IV and sent me on my way.
The final test of the day involved a dreaded blood gas. It was up on the third floor of the main building. It soon became my least favorite place in National Jewish. I have to admit, I was wearing down a bit. I had been through the sleep study that night, this pretty intense first day, and now I was in a tiny room where a nice lady named Brenda was trying to dig a needle down into my wrist to get blood from my artery. On the sixth try she was able to get the blood she needed. I completed the six-minute walk test and she told me I had done a great job.
Back at the smelly house I was greeted by uplifting messages on facebook, sweet texts, and phone calls with Dad and friends. It was a good first day.
All for Good
Putting this experience in writing now is very difficult for me, but it's something that I want and need to do for myself. It's a time I need to be able to look back on and remember the details. Before I continue, I want to clarify where my head was ten months ago in the midst of everything.
There was no doubt in my being that this journey was lined out by God for my good and for His plan. Dr. Woody had said, "It doesn't have to be this way." Barb had said, "We'll do so much more." I was in Denver for medical treatment ~ not a typical thing I would do. This was big - this was different. I believed, but it was in such a deep and certain way that it's hard to explain. At the time I was very rigid and as cautious as possible with my emotions. I knew things were the way they were supposed to be. I couldn't deal with everything that was frustrating and seemingly unforgiveable about lost time being sick. To me, that had to have been part of the plan too. You know, part of the journey. Maybe someone's life was changed along the path because of my health. I knew I couldn't handle the burden of that anger. I also realized how hard the situation was on Mom. Imagine watching someone you love going through all that & she couldn't do a thing ~ I had to be strong for her. It hurt me so much that I'd put her (& all my family and friends) through so much worry and heartache for so long. I believe all this helped me to get through each tough minute just thinking about the ultimate goal...it was all for good.
Ten months later, I can see the bigger picture. So as I record the memory, I want it to be true. That first week at National Jewish was wonderful and life changing, but it was also horrible and tough and unbelievably scary. As you will see, God was working miracles every step of the way. I was doing what I could to understand and remember that it was All For Good.
There was no doubt in my being that this journey was lined out by God for my good and for His plan. Dr. Woody had said, "It doesn't have to be this way." Barb had said, "We'll do so much more." I was in Denver for medical treatment ~ not a typical thing I would do. This was big - this was different. I believed, but it was in such a deep and certain way that it's hard to explain. At the time I was very rigid and as cautious as possible with my emotions. I knew things were the way they were supposed to be. I couldn't deal with everything that was frustrating and seemingly unforgiveable about lost time being sick. To me, that had to have been part of the plan too. You know, part of the journey. Maybe someone's life was changed along the path because of my health. I knew I couldn't handle the burden of that anger. I also realized how hard the situation was on Mom. Imagine watching someone you love going through all that & she couldn't do a thing ~ I had to be strong for her. It hurt me so much that I'd put her (& all my family and friends) through so much worry and heartache for so long. I believe all this helped me to get through each tough minute just thinking about the ultimate goal...it was all for good.
Ten months later, I can see the bigger picture. So as I record the memory, I want it to be true. That first week at National Jewish was wonderful and life changing, but it was also horrible and tough and unbelievably scary. As you will see, God was working miracles every step of the way. I was doing what I could to understand and remember that it was All For Good.
Sunday, April 11, 2010
The Sleep Study
Sunday Night, April 11, 2010
I grabbed an overnight bag and a favorite pillow as ordered in my directions, left Mom in the barred up house, and headed toward my first experience at National Jewish. The drive there was pretty easy because we had already scoped things out after dinner. Pulling into the empty parking lot was rather unsettling as opposed to the uplifting feeling you would expect with the same discovery at any other time. J
I walked inside the first set of double doors and was immediately overtaken by the aroma-induced memory of the Rose Petal Place scented character toys that I had and adored as a child! What a comforting, yet random greeting! From there I proceeded onto the elevators to the third floor and wound through the halls until I found three other people with pillows and overnight bags. I assumed I was in the right place…
We chatted politely for a while about travels and hometowns until we were finally called to our resting places. I was beyond nervous. I was a wreck. The idea of someone watching me sleep was just dreadful to me. I couldn’t have asked for a better nurse/technician though. Greta loved her job and was truly there to help improve people’s lives. She was so caring, sincere, light-hearted and thorough all in one! I was still a mess – but she was comforting. J
Long story short, I had been on so many strong asthma meds and steroids for so long that sleep was simply not part of my life anymore. When Greta told me to lie on my back and go to sleep like “normal”, I did just that...ha ha. I got in the bed and stared at the ceiling for hours!!! Of course it was even worse because I was there & nervous, but that was pretty “normal” for me at the time. I believe I did sleep an hour and a half or so before the 8 hour study was over. Greta said the results would be in my report by the end of the week. Something to look forward to...oh my!
At six o’clock I hurried home to shower and get Mom so we could make it back to National Jewish for my first official day of testing which was supposed to begin at 7:30!
VRBO ~ Denver
April 11, 2010
So I can't share this story without talking about Norm's house in Denver! What an experience! We all know things aren't always as they seem in pictures and that was so true with Norm's house...
We pulled into the driveway at about 4 p.m., Sunday afternoon. We had driven from Lexington, Kentucky to Denver, Colorado in a weekend and I was certainly ready for my picturesque vacation rental. The first things that caught my eyes were the bars on the windows..very nice! As we pulled even closer, we noticed a couple of bullet holes in the front windows! I suppose the bars didn't stop the bullets! :) Add to this first impression the fact that I had to be at National Jewish for a sleep study that first night and Mom would be staying in the vacation rental alone...
Inside, things weren't horrid, but not fabulous either! The smell was quite unbearable. We immediately made a trip to the nearest Wal-Mart for air freshener and Clorox wipes! All in all, it ended up being our home away from home for the week. It was without a doubt a house we will never forget!!
So I can't share this story without talking about Norm's house in Denver! What an experience! We all know things aren't always as they seem in pictures and that was so true with Norm's house...
We pulled into the driveway at about 4 p.m., Sunday afternoon. We had driven from Lexington, Kentucky to Denver, Colorado in a weekend and I was certainly ready for my picturesque vacation rental. The first things that caught my eyes were the bars on the windows..very nice! As we pulled even closer, we noticed a couple of bullet holes in the front windows! I suppose the bars didn't stop the bullets! :) Add to this first impression the fact that I had to be at National Jewish for a sleep study that first night and Mom would be staying in the vacation rental alone...
Inside, things weren't horrid, but not fabulous either! The smell was quite unbearable. We immediately made a trip to the nearest Wal-Mart for air freshener and Clorox wipes! All in all, it ended up being our home away from home for the week. It was without a doubt a house we will never forget!!
Saturday, March 20, 2010
A Powerful Visit
March 2010
I recall a sunny Saturday morning about a year ago. Mom was here because I had just come home from the hospital the day before. I was still pretty weak and feeling a little down. (The doctors had actually discharged me & stopped my treatment due to the knowledge that I was heading to National Jewish in a couple of weeks.) I was sitting on the couch when Stacey and Elle dropped by for a surprise visit! It was such an uplifting treat!! They both bounced in through the door with huge smiles on their faces! As a bonus, they brought me a Kassidy smoothie from the little place we recently had breakfast near Gymboree! On top of that, Stacey took Jackson for a neighborhood jog while Elle hung out with Mom and me. :)
I recall a sunny Saturday morning about a year ago. Mom was here because I had just come home from the hospital the day before. I was still pretty weak and feeling a little down. (The doctors had actually discharged me & stopped my treatment due to the knowledge that I was heading to National Jewish in a couple of weeks.) I was sitting on the couch when Stacey and Elle dropped by for a surprise visit! It was such an uplifting treat!! They both bounced in through the door with huge smiles on their faces! As a bonus, they brought me a Kassidy smoothie from the little place we recently had breakfast near Gymboree! On top of that, Stacey took Jackson for a neighborhood jog while Elle hung out with Mom and me. :)
I must admit, the visit was exhausting, but it meant the world to me! I still remember how blessed I felt that day (& still do) to have such a friend. That visit did more than brighten my morning, it gave me a boost that helped me through the next few weeks! Thanks Stacey and Eleanor!
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| Elle wishing me safe travels on the road to Denver!! |
Thursday, March 4, 2010
and then Barb called
It was a busy March day, about a year ago. I was on my home from work and the phone rang. It was an unrecognized number with a 303 area code. When I answered, (expecting a tele-marketer) I was surprised to be introduced to Barb, a lung nurse from National Jewish Health in Denver.
It was evident as soon as she began speaking that this place was so different. She wasn't just calling to get insurance information or schedule my trip ~ she was calling to get to know me. I could tell that she cared about me and she didn't even know me.
At the end of our conversation, she asked what my biggest hope was for in this trip to National Jewish. I said in a dream scenario I would like be hospitalized less often & to stop taking steroids. Barb responded, "Oh Toni, your dreams aren't big enough! We're going to do so much more for you!"
It was evident as soon as she began speaking that this place was so different. She wasn't just calling to get insurance information or schedule my trip ~ she was calling to get to know me. I could tell that she cared about me and she didn't even know me.
At the end of our conversation, she asked what my biggest hope was for in this trip to National Jewish. I said in a dream scenario I would like be hospitalized less often & to stop taking steroids. Barb responded, "Oh Toni, your dreams aren't big enough! We're going to do so much more for you!"
Monday, February 22, 2010
So it began...
So I've intended to start this for almost 10 months now. Can I say procrastination?? Well, really I think it's a little more than that, but that's a good enough reason for now. : )
So did I say 10 months???? For real! St. Patrick's Day will mark the 10 month anniversary of my open heart surgery! What's really crazy about that is that I don't think I've ever really acknowledged that it really happened to me. Anyway - I'll deal with that later! Initially, I want to record some of my memories from this journey. It has been quite an experience. I regret that I didn't write along the way, but I realize that I just wasn't ready to put it to paper. The story actually begins 16 months ago...
November 2009
So, after being on steroids constantly for 12 years, numerous other strong asthma meds, and still finding myself in and out of the doctor's office on a regular basis, it's easy to understand that my uncontrolled asthma had become my way of life. It was simply "the way it was" for me. I wasn't at all negative about it and I really didn't feel cheated or limited anymore. I was past those thoughts. I knew how to handle the exacerbations and I just dealt with it. Somehow that didn't make being in the hospital any easier for me. November of 2009 was particularly rough. I had bronchitis followed by H1N1, and then another round of sinus/lung infections. I was hospitalized for low oxygen levels & not being able to fight the infections on my own. My hospitalist was Dr. Woody & she changed my life. She was the first doctor to ever tell me that I was not okay the way things were going. She insisted that my life could and should be better. And that I deserved to be well. She referred me to a pulmonologist for further testing.
January-February 2010
Dr. Woody referred me to Dr. Thompson a great pulmonologist. I went to him for the first time in January 2010. He agreed that I should be able to have a much better quality of life. He ordered a full day of testing at the hospital. They did everything from labwork to GI scans & CTs. Every test that he ordered came back negative. He was at a loss & I felt crushed. It may seem bizarre to hope a test to reveal a problem, but to me that meant hope for a treatment. Rather than simply increase the already high dosage of steroids I was on, he recommended I try one more thing. He asked if I would be willing to go to the Mayo Clinic or the National Jewish Lung Institute. I was completely caught off guard. I had spent so many years coping & convincing myself that I was just fine the way I was that I never imagined I could be even close to the severity of people that go to places like that. I was not that sick? He said they spend their funding listening to hoof beats and looking for zebras rather than horses. Was Dr. Thompson saying I could be a zebra? That all this time, what I thought was good enough really could be better...maybe it was worth another shot?? I trusted his recommendation and told him to make the call. I had no idea what was ahead of me, but at the time I just knew that God did. My life has been one miracle after another, so I had to believe that this too would be all for the good of His plan.
So did I say 10 months???? For real! St. Patrick's Day will mark the 10 month anniversary of my open heart surgery! What's really crazy about that is that I don't think I've ever really acknowledged that it really happened to me. Anyway - I'll deal with that later! Initially, I want to record some of my memories from this journey. It has been quite an experience. I regret that I didn't write along the way, but I realize that I just wasn't ready to put it to paper. The story actually begins 16 months ago...
November 2009
So, after being on steroids constantly for 12 years, numerous other strong asthma meds, and still finding myself in and out of the doctor's office on a regular basis, it's easy to understand that my uncontrolled asthma had become my way of life. It was simply "the way it was" for me. I wasn't at all negative about it and I really didn't feel cheated or limited anymore. I was past those thoughts. I knew how to handle the exacerbations and I just dealt with it. Somehow that didn't make being in the hospital any easier for me. November of 2009 was particularly rough. I had bronchitis followed by H1N1, and then another round of sinus/lung infections. I was hospitalized for low oxygen levels & not being able to fight the infections on my own. My hospitalist was Dr. Woody & she changed my life. She was the first doctor to ever tell me that I was not okay the way things were going. She insisted that my life could and should be better. And that I deserved to be well. She referred me to a pulmonologist for further testing.
January-February 2010
Dr. Woody referred me to Dr. Thompson a great pulmonologist. I went to him for the first time in January 2010. He agreed that I should be able to have a much better quality of life. He ordered a full day of testing at the hospital. They did everything from labwork to GI scans & CTs. Every test that he ordered came back negative. He was at a loss & I felt crushed. It may seem bizarre to hope a test to reveal a problem, but to me that meant hope for a treatment. Rather than simply increase the already high dosage of steroids I was on, he recommended I try one more thing. He asked if I would be willing to go to the Mayo Clinic or the National Jewish Lung Institute. I was completely caught off guard. I had spent so many years coping & convincing myself that I was just fine the way I was that I never imagined I could be even close to the severity of people that go to places like that. I was not that sick? He said they spend their funding listening to hoof beats and looking for zebras rather than horses. Was Dr. Thompson saying I could be a zebra? That all this time, what I thought was good enough really could be better...maybe it was worth another shot?? I trusted his recommendation and told him to make the call. I had no idea what was ahead of me, but at the time I just knew that God did. My life has been one miracle after another, so I had to believe that this too would be all for the good of His plan.
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