Since I was at Mom and Dad's recovering, Mom got me an appointment with her eye doctor, Dr. Talley to see what was going on with my eyes. I have patchy blurry vision which is much worse at night.
After a long examination Dr. Talley sat down to talk with me. He explained that oddly enough, I could still achieve 20/20 vision with effort but the bad news was that I had cataracts in both eyes. He seemed hopeful that because of the surgery and the corrected blood flow, they shouldn't get any worse. He said they were caused by long term high doses of steroids. When and if they do worsen, I can have surgery to correct them. For now, I'll just have to deal with the patchy blurry vision.
He explained that the "episodes" of blurriness are a separate problem. He suggested a visit to my primary care doctor to discuss that concern.
I have to admit, I was pretty bummed that afternoon about the diagnosis. I had learned that one of the side effects of steroids was glaucoma or cataracts. I guess I was hoping that there was at least a couple of side effect from the steroids I had avoided. At least it is better to have cataracts that glaucoma I suppose, but it is still a bit of tough blow right now. I just need to take a breath a let this information soak in.
Thursday, June 10, 2010
Tuesday, June 1, 2010
Welcome to UK
This was the big day to meet my new adult congenital heart specialist at U.K. I felt kind of weird going to the appointment because it was in the pediatric department. Dr. Bricker is a pediatric cardiologist who has an interest in adult congenital cardiology. He and one other doctor work together to run an adult congenital clinic once each month at the Gill Heart building connected to the hospital. It is such a small area of cardiology that it is hard to find a doctor that practices adult congenital defects full time. Dr. Bricker was so intrigued by my case that he didn't want to wait until the next clinic to meet me. That's why he was seeing me in the peds unit so soon after my return from Colorado. It all worked out nicely for all of us!
Overall the meeting went really well. He spent most of the time just talking to us and getting to know me and getting to know more about my history and my case. He talked to Mom a lot and comforted her about the fact that the congenital defects were not caused by anything she did or didn't do during pregnancy. She was relieved! He gave me a card with his home and cell number in case anything happened at all. He said I would need to call him anytime I was sent to the ER for now on because doctors would be so fascinated by my story that it could hinder decisions about the immediate problem.
He clearly defined my restrictions for recovery which were very limiting. One thing that was repeated by nearly every doctor was that my chest/sternum would likely take longer to heal because of the amount of time and dosage of steroids I had been taking. He gave me a general timeline saying that by August I would feel stronger but still get winded when I went back to work. November would be wonderful - I would feel stronger and better than ever. And I would be completely recovered from the surgery in one year. I was prepared to follow directions and let my body do what it needed to do to get well. I was ready for the good things that were coming my way!
After the appointment, we stopped by the house to pick up Jackson and made the long drive to Mom and Dad's house. It was time to recover :)
Overall the meeting went really well. He spent most of the time just talking to us and getting to know me and getting to know more about my history and my case. He talked to Mom a lot and comforted her about the fact that the congenital defects were not caused by anything she did or didn't do during pregnancy. She was relieved! He gave me a card with his home and cell number in case anything happened at all. He said I would need to call him anytime I was sent to the ER for now on because doctors would be so fascinated by my story that it could hinder decisions about the immediate problem.
He clearly defined my restrictions for recovery which were very limiting. One thing that was repeated by nearly every doctor was that my chest/sternum would likely take longer to heal because of the amount of time and dosage of steroids I had been taking. He gave me a general timeline saying that by August I would feel stronger but still get winded when I went back to work. November would be wonderful - I would feel stronger and better than ever. And I would be completely recovered from the surgery in one year. I was prepared to follow directions and let my body do what it needed to do to get well. I was ready for the good things that were coming my way!
After the appointment, we stopped by the house to pick up Jackson and made the long drive to Mom and Dad's house. It was time to recover :)
Sunday, May 30, 2010
Home Sweet Home...for a little while
I woke in my own bed which was a wonderful thing, but I was in a lot of pain and needed help getting up. It would just take practice to learn how to get in and out of my bed on my own without hurting my chest. Dad had to leave early to get back to work. He had used all his vacation days and didn't have any more time to spare. It still makes me sick to think that I caused him to use all his days for the year in May. He never thought twice about it though. Mom had already sacrificed so much too and needed to get back home. She was also out of her medicine. They decided that I wasn't strong enough to make another trip so soon after the flight though. A plan was put into place. Mom stayed through the week and went home that weekend to take care of things. Debbie, Melodie, and Stacey took turns staying with me until she returned on Monday. We would stop by the school Tuesday to say bye to my class, go to my appointment with the congenital heart doctor, then head back to Mom & Dad's house for a few weeks of recovery.
Cathy Christopher was right. It was hard. I couldn't do anything on my own but I was already exhausted from feeling like a burden. I wanted to be in my own home but I wanted to be with my family. I wanted to be with my friends who I missed dearly. I was sick of people griping at me and telling me that I couldn't do things. It was wonderful to see people those first few days after getting back and it was also hard. EVERY person that saw me exclaimed about how good I looked. I know that's wonderful but it's also very hard to handle too. After the surgery, since my body was actually getting oxygenated blood, my coloring truly went from a grayish tint to a healthy pinky-peach~~almost overnight! Each visitor meant so much to me because they took the time out of their lives to come and see me! That's huge to me especially since I couldn't really go anywhere and had been missing them all so much! Anyhow, as I said, Cathy was right, it was hard, but it was worth it! I'm so glad I had that week at my home sweet home before we headed west for recovery.
Cathy Christopher was right. It was hard. I couldn't do anything on my own but I was already exhausted from feeling like a burden. I wanted to be in my own home but I wanted to be with my family. I wanted to be with my friends who I missed dearly. I was sick of people griping at me and telling me that I couldn't do things. It was wonderful to see people those first few days after getting back and it was also hard. EVERY person that saw me exclaimed about how good I looked. I know that's wonderful but it's also very hard to handle too. After the surgery, since my body was actually getting oxygenated blood, my coloring truly went from a grayish tint to a healthy pinky-peach~~almost overnight! Each visitor meant so much to me because they took the time out of their lives to come and see me! That's huge to me especially since I couldn't really go anywhere and had been missing them all so much! Anyhow, as I said, Cathy was right, it was hard, but it was worth it! I'm so glad I had that week at my home sweet home before we headed west for recovery.
Monday, May 24, 2010
The Friendly Skies :(
I had one last follow up appointment at Dr. Campbell's office with Dr. Babu on Monday morning. Everything was as expected so I would be able to fly. They explained that it was safe for me to fly but not advised so soon after surgery. To continue with recovery though, I needed to be at home and needed to fly to get home. That's basically why I was cleared to fly.
Stacey hooked Mom up with knowledge of airport wheelchair transport and got us bulkhead seats on the planes. As soon as our bags were checked I was tossed in a wheelchair and we were flying through the airport. All I could do was squeeze that stuffed dog as tightly as possible against my throbbing chest as we raced along. Periodically he would lean down and mutter, "you k?" to which I would respond with a positive nod. That guy was serious about his job and didn't waste any time! We didn't wait in line anywhere, not even at security ~ he just pushed us right on through! All three of us were very relieved to see our gate. We were able to take a little break before the plane began loading.
Even though Mom was pushing oxycontin and percocet down me like tic tacs the plane ride was still pretty rough. During take-off and landing it truly felt like the force was ripping my heart from my chest. By the time we loaded the second flight to go from Atlanta to Lexington, I was so exhausted that I couldn't grip the stuffed dog anymore. I just wanted to be done, to be home.
Melodie picked us up from the airport in Lexington. It was so good to see her! Jackson was at the house waiting for us. He was so calm and careful with me. When I went to bed, I was laying on my side with my hands clasped together out from my chest. Jackson gently crawled up on the bed and held my hands between his two paws and went to sleep. I think my pup missed me. :)
Stacey hooked Mom up with knowledge of airport wheelchair transport and got us bulkhead seats on the planes. As soon as our bags were checked I was tossed in a wheelchair and we were flying through the airport. All I could do was squeeze that stuffed dog as tightly as possible against my throbbing chest as we raced along. Periodically he would lean down and mutter, "you k?" to which I would respond with a positive nod. That guy was serious about his job and didn't waste any time! We didn't wait in line anywhere, not even at security ~ he just pushed us right on through! All three of us were very relieved to see our gate. We were able to take a little break before the plane began loading.
Even though Mom was pushing oxycontin and percocet down me like tic tacs the plane ride was still pretty rough. During take-off and landing it truly felt like the force was ripping my heart from my chest. By the time we loaded the second flight to go from Atlanta to Lexington, I was so exhausted that I couldn't grip the stuffed dog anymore. I just wanted to be done, to be home.
Melodie picked us up from the airport in Lexington. It was so good to see her! Jackson was at the house waiting for us. He was so calm and careful with me. When I went to bed, I was laying on my side with my hands clasped together out from my chest. Jackson gently crawled up on the bed and held my hands between his two paws and went to sleep. I think my pup missed me. :)
Sunday, May 23, 2010
Dr. Kaye
Dr. Kaye was the adult congenital heart specialist that was pulled on board for me. I know I've said it so many times that it's starting to seem untrue, but he was wonderful! It just proves that God did masterfully put everything into place because when and where would it ever happen that one person could ever have so many top doctors that truly care!?!?
He visited me the whole time I was in the hospital. He explained things to us and took time to talk with us each time he stopped by. I was particularly impressed with his passion for finding me an adult congenital specialist at home. He said it was a very small field of doctors but that he was determined to find one for me that he approved. If not I'd just have to be coming back to Denver to see him. :) As promised though, he did find a doctor for me, and had an appointment for me on June 2nd which was remarkably fast in the medical world! What a doctor!
He visited me the whole time I was in the hospital. He explained things to us and took time to talk with us each time he stopped by. I was particularly impressed with his passion for finding me an adult congenital specialist at home. He said it was a very small field of doctors but that he was determined to find one for me that he approved. If not I'd just have to be coming back to Denver to see him. :) As promised though, he did find a doctor for me, and had an appointment for me on June 2nd which was remarkably fast in the medical world! What a doctor!
Saturday, May 22, 2010
The Pep Talk
So very early on Friday morning one of my many doctors had come into the room and told me I was going home! I was excited and scared all at the same time. A few hours later I called Mom and Dad and told them so they would know to come on over to the hospital that morning. The next doctor that came in didn't say anything about it so I asked and he said, "Oh, we all looked at your numbers again this morning and had decided you're not ready to go home yet." It turns out that my oxygen levels weren't steady enough and some other things they'd been checking like potassium and such.
As you can expect, I was a bit crushed. Probably more because I was extra sensitive than because I wasn't getting out of the hospital. I started thinking about all things the different doctors had said in the past days and overthinking it all. I felt like it meant that the surgery didn't work and my lungs were still going to be just as much of a problem. I was afraid it was all for nothing. By Saturday morning I was in a tailspin. I needed someone to prove to me that my chest had been ripped open for a good reason and things were going to get better! Almost right on cue, Cathy Christopher walked into the room! She was so calming and comforting. She knew so much about my case. She explained how important the surgery was and how remarkable it was that I had lived 32 years with those rare defects. She explained that I would not have been strong enough to continue much longer with my heart in that condition. It had to be repaired. That was exactly what I needed. I needed someone who knew my situation to prove to me that I was going through all of this for a good reason. She did just that. She also talked to me about how hard it would be to go home. She went into great detail about the impact going home would have on me, my family, and my friends and how it was going to be something I would need to be prepared for, but would still be very difficult. I tried to just soak everything she said in and remember it.
Saturday afternoon they did release me from the hospital. The car ride back to the hotel was scary for some reason. I felt very out of control. I had trouble keeping my balance with each curve or turn. It was something else to learn to adjust to. (The doctor had told me that I would have to be a back seat passenger for eight weeks. It would take that long for my sternum to heal, so until then there would be no driving or riding up front.) It was good to be back at the hotel, our temporary home away from home. It was a rough night, but we all made it through. ;)
As you can expect, I was a bit crushed. Probably more because I was extra sensitive than because I wasn't getting out of the hospital. I started thinking about all things the different doctors had said in the past days and overthinking it all. I felt like it meant that the surgery didn't work and my lungs were still going to be just as much of a problem. I was afraid it was all for nothing. By Saturday morning I was in a tailspin. I needed someone to prove to me that my chest had been ripped open for a good reason and things were going to get better! Almost right on cue, Cathy Christopher walked into the room! She was so calming and comforting. She knew so much about my case. She explained how important the surgery was and how remarkable it was that I had lived 32 years with those rare defects. She explained that I would not have been strong enough to continue much longer with my heart in that condition. It had to be repaired. That was exactly what I needed. I needed someone who knew my situation to prove to me that I was going through all of this for a good reason. She did just that. She also talked to me about how hard it would be to go home. She went into great detail about the impact going home would have on me, my family, and my friends and how it was going to be something I would need to be prepared for, but would still be very difficult. I tried to just soak everything she said in and remember it.
Saturday afternoon they did release me from the hospital. The car ride back to the hotel was scary for some reason. I felt very out of control. I had trouble keeping my balance with each curve or turn. It was something else to learn to adjust to. (The doctor had told me that I would have to be a back seat passenger for eight weeks. It would take that long for my sternum to heal, so until then there would be no driving or riding up front.) It was good to be back at the hotel, our temporary home away from home. It was a rough night, but we all made it through. ;)
Friday, May 21, 2010
Learning How to Adjust
The days after I was moved to the regular room were spent managing the pain and learning how to adjust to the changes. Things like coughing, raising up, and getting out of bed were real challenges. The nurses had suggested Mom and Dad get me something soft to "hug against my chest" while doing these painful things. They found this stuffed pup in the gift shop! It is absolutely adorable and worked perfectly. It became my best friend when we were rushing through the airport! :)
I also learned that dilaudid was not my friend! They had put me on a pain pump when I was in ICU. I quickly made the connection that my out of control itching was directly connected to pushing the button! I simply stopped pushing and waiting for them to bring the doses of pain meds. It was pretty funny the first night in the new room the nurses came in to help me get out of bed. Before I could stop her, she pushed the button to be helpful. Within minutes I was scratching madly. By morning they had the dilaudid pain pump unhooked!
By Friday, I was walking the halls regularly and getting better at all the things I'd been working on with OT and PT. The swelling in my arms was nearly gone. The bruises were even healing quickly. In fact, we began to notice that scars and bruises I'd had for months were suddenly healing! Dr. Campbell said it was because my body was finally getting oxygenated blood! How crazy is that? My body had been doing without for so long and now everything is healing all at once! This is a picture of my arms from the end of the week. We were simply amazed at how much they had healed in such a short time. Before the heart surgery, my entire arm would have stayed bruised for months!
By Friday, I was walking the halls regularly and getting better at all the things I'd been working on with OT and PT. The swelling in my arms was nearly gone. The bruises were even healing quickly. In fact, we began to notice that scars and bruises I'd had for months were suddenly healing! Dr. Campbell said it was because my body was finally getting oxygenated blood! How crazy is that? My body had been doing without for so long and now everything is healing all at once! This is a picture of my arms from the end of the week. We were simply amazed at how much they had healed in such a short time. Before the heart surgery, my entire arm would have stayed bruised for months!
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!
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| This was actually the window at the end of the hallway I walked down. |
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!
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