Wow - talk about memories being awakened by environment! My first appointment was on the stinkin' dreaded third floor. Probably not the best way for Debbie to have to start out at National Jewish (haha). We walked through the elevator doors, I checked in and we sat down. I was there for 30 seconds and suddenly overwhelmed with memories and emotions. Tears started flowing uncontrollably. My hands were shaking and a hundred images were running through my head - the bike, the blood gases, the walk, the box, the sighs, the faces, everything. I couldn't do this again. What was I thinking? Debbie was great - she reminded me that this time would be different.
A kind voice called my name - we went to the box. She chatted with me about holiday events in downtown Denver as we glided through each test. I was completing the tests without frustrating her - what a relief! It sounds ridiculous, but it was huge. There was even noticeable improvement in my VCD on the spirometry graphs. I was delighted.
Feeling a tad more confident, I headed back to the waiting room. Debbie was jubilant! Another kind voice called my name - it was Tom. He took me to the room to draw a blood gas. Before he started though, he talked to me. He warmed my wrist and said he read my file and knows what happened before. He was beyond thoughtful. He was outstanding. He got it on the second try. It was 92% but increased when we walked. That was good news. We were 2 for 2 so far.
We headed over for several scans in radiology and another six minute walk test on the rehab floor. It all went smoothly. The final test was an ECHO with agitated saline (bubble test) in cardiology. I was excited and nervous about this one. It would show if the hole was fixed or not. I'm certainly no doctor or technician and this whole world of cardiology is completely new to me. I have learned how to watch the bubbles in the heart though. I know if they stay on one side or shoot through to the other. I was so anxious as he pumped the first burst of bubbles through. It was perfectly clear. I was so excited. I asked the technician instantly - it looks good - right??? Of course he couldn't answer me, but I knew it did. I was beaming inside. He told the nurse to give another burst. This time it was different, bubbles went everywhere. I was crushed. I knew something was still wrong. The hole must still be there. I didn't say anything. I just waited and watched. I could see it in the technicians eyes too.
We left National Jewish and Denver as we knew it for a wild road adventure to Highlands Ranch. I had an appointment at the National Jewish Community Clinic with Dr. Fenster. We felt like we were taking a road trip and should have stopped for supplies! It was certainly a nice little escape for my mind to shift focus before the visit.
When we finally found the place, Dr. Fenster revealed that there is still a hole in my heart. The news broke my heart. In my mind, after all that had happened, it was supposed to be fixed. It was supposed to be over. A few tears trickled down my cheeks. I think his heart broke a little too. He immediately started consoling me and told me that it wasn't a big deal. He said the surgery was so huge and so complex that some imperfection was expected. This was something minimal. They could watch it and monitor it and with proper medical attention never do open heart surgery again. If it worsens it could be repaired through a heart cath. It's possible it could repair itself in time.
I could hear him and I understood him. On the surface I even accepted that it was minimal. On the inside though, I was crumbling. I was scared and frustrated and confused. I had to be strong though. I had to move forward.
As a great distraction, after dinner we took a side route home. We went sight seeing through downtown Denver to look at Christmas lights. This is one of the federal buildings. The entire city was an absolute winter wonderland. I was disappointed that I didn't have my camera with me to take better pictures.
Monday, December 6, 2010
Monday, November 15, 2010
The 2 Week Mark
It seems as though my body has a two week limit for wellness. Dr. Caudill is getting to know my case. He has most of my records from Dr. Greisner, Dr. Myers, and National Jewish now. He's decided to start seeing me every two weeks to try and stay on top of the infections before they get the best of me.
Somehow, sickness hit between appointments and got me down again. He took action quickly though. He ordered labs and a chest x-ray. I was very nervous about how he would deal with my lung function. I was so scared of going back on steroids. He had a confident plan though, he said as long as prednisone was prescribed in short bursts and stopped, I would not suffer the ill effects. Sadly though, I was quite sick and did miss nearly a week of school with this round.
Hopefully we would prevent the next one. He wanted to see me again before I was scheduled to leave for Denver.
Somehow, sickness hit between appointments and got me down again. He took action quickly though. He ordered labs and a chest x-ray. I was very nervous about how he would deal with my lung function. I was so scared of going back on steroids. He had a confident plan though, he said as long as prednisone was prescribed in short bursts and stopped, I would not suffer the ill effects. Sadly though, I was quite sick and did miss nearly a week of school with this round.
Hopefully we would prevent the next one. He wanted to see me again before I was scheduled to leave for Denver.
Tuesday, November 2, 2010
NO MORE STEROIDS ~ YIPPEE
The day has finally come!! Today was my follow-up appointment with Dr. Caudill. He checked my cortisol level and found that my adrenal glands are finally awake! Yippee! I am finally, finally done with steroids! After more than 12 long, terrible, side effect infested years - it's over!
This milestone hits just 24 weeks after my heart surgery! What a great day! This is big, just really special and big for me! :)
NO MORE STEROIDS :)
This milestone hits just 24 weeks after my heart surgery! What a great day! This is big, just really special and big for me! :)
NO MORE STEROIDS :)
Tuesday, October 19, 2010
Just one of those days
So it just happened to be one of those rough days. It was one of those days that I was having a tough time breathing. I had had several breathing treatments that weren't really helping and neither were my inhalers. During planning I had to meet with Leigh Ann to talk about my evaluation lesson. It was impossible to hide my shortness of breath because I couldn't even speak in complete sentence. She was very concerned and finally insisted that I go home and call the doctor. The big problem with that was that I didn't know who to call. I felt like Dr. Myers didn't care, Dr. Greisner didn't know what to do with me anymore, and I neither did Dr. Foxx.
As I was leaving, Debbie met me in the parking lot. She was very concerned and could tell that I was just done. We tried to call a few of my doctors with no luck. The receptionist at Dr. Thompson's office completely blew me off on the phone. Finally, she called her brother-in-law, a doctor at UK. He was able to work me in that afternoon. Debbie offered to pick me up at my house in an hour.
Dr. Caudill listened to my history and promised enthusistically to work with my doctors from National Jewish to help me. He said his specialty was coordinating multiple doctors for patients and keeping everything in order so that nothing contradicts. He ordered a chest x-ray and labs that day and started antibiotics. He seemed like a dream come true! He even wanted to schedule a follow-up appointment to make sure the antibiotics had worked and I was feeling better! I felt like a huge load had been lifted from my shoulders. Now I could focus on feeling better and getting back to work!
As I was leaving, Debbie met me in the parking lot. She was very concerned and could tell that I was just done. We tried to call a few of my doctors with no luck. The receptionist at Dr. Thompson's office completely blew me off on the phone. Finally, she called her brother-in-law, a doctor at UK. He was able to work me in that afternoon. Debbie offered to pick me up at my house in an hour.
Dr. Caudill listened to my history and promised enthusistically to work with my doctors from National Jewish to help me. He said his specialty was coordinating multiple doctors for patients and keeping everything in order so that nothing contradicts. He ordered a chest x-ray and labs that day and started antibiotics. He seemed like a dream come true! He even wanted to schedule a follow-up appointment to make sure the antibiotics had worked and I was feeling better! I felt like a huge load had been lifted from my shoulders. Now I could focus on feeling better and getting back to work!
Tuesday, October 12, 2010
Try, Try Again
After a little over a week back on a higher dose of steroids, I was back to myself! I did wake up pretty sick on the 6th with a fever and congestion. Luckily it was the first day of fall break. I went to see Dr. Greisner. He gave me an antibiotic and I kind of got the vibe that he didn't want to do more than that. Anything that I asked about Medrol he deferred to Dr. Myers and wouldn't even discuss.
I went on in for my scheduled labwork to check my cortisol level on October 7th. I hadn't heard anything by the 12th so I called the office. Finally, after not being able to get through on the phone, I decided to go over there. Debbie drove me over and waited while I ran up.
The nurse gave me a post-it note that said "Cortisol level still low but better. Go ahead and start taper again." Call me crazy ~ I wanted off steroids more than anyone would ever understand, but just a week earlier, this same doctor told me I was near multiple organ failure!! Now, with no check up or follow up scheduled, no plan of action, now, with a post-it he tells me to start the taper again!!!! I felt sooooo alone! I felt like no doctor was willing to treat me or take care of me. Nobody wanted to deal with the complications so they just passed them off assuming I would explain it to the next doctor. Oh I was getting so frustrated! If only I lived closer to National Jewish!
Ultimately, my desire to be off steroids won over my fear of organ failure or lack of medical care. :) I began the taper and basically decided to just take care of myself until I found a doctor that would tell me what to do.
I went on in for my scheduled labwork to check my cortisol level on October 7th. I hadn't heard anything by the 12th so I called the office. Finally, after not being able to get through on the phone, I decided to go over there. Debbie drove me over and waited while I ran up.
The nurse gave me a post-it note that said "Cortisol level still low but better. Go ahead and start taper again." Call me crazy ~ I wanted off steroids more than anyone would ever understand, but just a week earlier, this same doctor told me I was near multiple organ failure!! Now, with no check up or follow up scheduled, no plan of action, now, with a post-it he tells me to start the taper again!!!! I felt sooooo alone! I felt like no doctor was willing to treat me or take care of me. Nobody wanted to deal with the complications so they just passed them off assuming I would explain it to the next doctor. Oh I was getting so frustrated! If only I lived closer to National Jewish!
Ultimately, my desire to be off steroids won over my fear of organ failure or lack of medical care. :) I began the taper and basically decided to just take care of myself until I found a doctor that would tell me what to do.
Saturday, October 2, 2010
Something's not right...
September was simply a rough month. :( I went back to the doctor on the 18th because I was still not getting better and was having some other problems due to the medicine. This time I went to the Baptist Works Clinic because I couldn't get in at Dr. Foxx's office. Again, I had to tell my entire fascintating history. The doctor gave me more medicine and assured me that I'd be all better with a bit of rest.
Besides not being able to get well , I was also very emotional. I was crying constantly. I was not myself at all. I didn't know what was going on or who to talk to. I had heard about people have a tough time emotionally or a sort of depression after heart surgery, but I was nearly four months out??? I was embarrassed, confused, and very frustrated. I felt like everything about me was completely falling apart. Things were not good, and it was getting harder to pretend like they were.
I was at the end of my rope and had to do something. Whatever was wrong was only getting worse. Stacey talked me into calling the therapists we have available for us through work. I met with Jan on Wednesday, September 29th at 5:00 p.m. I shared my story and my concern for what was going on. She was intrigued by what I had been through. She said she was impressed with my strength and I was just fine. I should consider writing my feeling down from time to time and we could make another appointment for 3-4 weeks that I could later cancel if I felt better.
I left that office feeling worse than when I had arrived. I felt like I was falling apart when I arrived, but I left feeling like I had completely failed therapy. How could she think I was okay?? I was so far from okay! It was taking everything in me to hold myself together to focus on anything anymore. I hurt all over. Something was not right and I didn't know what to do. I was devastated.
Thursday, I decided to email Cathy Christopher for advice. She replied almost immediately telling me to contact my doctor or get to the ER because it sounded to her like symptoms of adrenal shock or adrenal crisis from the medrol taper. I was stunned! These were not symptoms Dr. Myers had said to look for! I called Dr. Greisner because Dr. Myers' office was already closed. He called Dr. Myers and they had me immediately take a dose of medrol. I went for labwork the next morning which revealed I was near kidney failure and all kinds of other terrible things like liver and even heart failure! They put me back on medrol and I was back to my stable self :) again in just a few days!!! It's just unreal what the body learns to handle and how it handles it!
Needless to say, my dream of getting off steroids by the beginning of October was squashed with this little crisis. I was pretty heartbroken by the whole thing, but what could I do. I had to believe that one day soon it would happen. I would be able to stop taking steroids. After all of this, it had to be possible.
Besides not being able to get well , I was also very emotional. I was crying constantly. I was not myself at all. I didn't know what was going on or who to talk to. I had heard about people have a tough time emotionally or a sort of depression after heart surgery, but I was nearly four months out??? I was embarrassed, confused, and very frustrated. I felt like everything about me was completely falling apart. Things were not good, and it was getting harder to pretend like they were.
I was at the end of my rope and had to do something. Whatever was wrong was only getting worse. Stacey talked me into calling the therapists we have available for us through work. I met with Jan on Wednesday, September 29th at 5:00 p.m. I shared my story and my concern for what was going on. She was intrigued by what I had been through. She said she was impressed with my strength and I was just fine. I should consider writing my feeling down from time to time and we could make another appointment for 3-4 weeks that I could later cancel if I felt better.
I left that office feeling worse than when I had arrived. I felt like I was falling apart when I arrived, but I left feeling like I had completely failed therapy. How could she think I was okay?? I was so far from okay! It was taking everything in me to hold myself together to focus on anything anymore. I hurt all over. Something was not right and I didn't know what to do. I was devastated.
Thursday, I decided to email Cathy Christopher for advice. She replied almost immediately telling me to contact my doctor or get to the ER because it sounded to her like symptoms of adrenal shock or adrenal crisis from the medrol taper. I was stunned! These were not symptoms Dr. Myers had said to look for! I called Dr. Greisner because Dr. Myers' office was already closed. He called Dr. Myers and they had me immediately take a dose of medrol. I went for labwork the next morning which revealed I was near kidney failure and all kinds of other terrible things like liver and even heart failure! They put me back on medrol and I was back to my stable self :) again in just a few days!!! It's just unreal what the body learns to handle and how it handles it!
Needless to say, my dream of getting off steroids by the beginning of October was squashed with this little crisis. I was pretty heartbroken by the whole thing, but what could I do. I had to believe that one day soon it would happen. I would be able to stop taking steroids. After all of this, it had to be possible.
Saturday, September 11, 2010
The New Sick?
I had been feeling worse each day for about a week until it hit full force on Wednesday evening. It happened. I was sick. The big question was could this be a new sick? Would I heal faster? Would weaker antibiotics work on me now? I already had an appointment with Dr. Foxx about my eyes on Thursday. I was still having problems with periods of blurry vision. Instead of making an appointment with Dr. Greisner too, I just decided to let Dr. Foxx take care of my sickness too. When I arrived, Dr. Foxx wasn't there and they placed me with one of his partners, Dr. Hayslip. I was okay with that, but had to explain my entire history to her before should could treat me.
As far as my eyes, she ordered an MRI and diagnosed me with ocular migraines. She prescribed Topamax on an increasing taper. She said it should stop or at least significantly reduce the blurry vision.
For the sickness, she said I had bronchitis and a sinus infection. She felt like a weaker antibiotic would do the trick and prescribed Bactrim. She said I should feel much better by Friday afternoon. If not, I should return to the office Saturday morning.
Saturday morning I woke with a fever and my symptoms were worse. It was as if I had not been taking any medicine at all. I called the office and went back in as Dr. Hayslip had suggested. Of course, it was another different doctor who I had to explain my entire history to all over again. He switched my antibiotic and increased my steroids. I was hoping this would do the trick.
As far as my eyes, she ordered an MRI and diagnosed me with ocular migraines. She prescribed Topamax on an increasing taper. She said it should stop or at least significantly reduce the blurry vision.
For the sickness, she said I had bronchitis and a sinus infection. She felt like a weaker antibiotic would do the trick and prescribed Bactrim. She said I should feel much better by Friday afternoon. If not, I should return to the office Saturday morning.
Saturday morning I woke with a fever and my symptoms were worse. It was as if I had not been taking any medicine at all. I called the office and went back in as Dr. Hayslip had suggested. Of course, it was another different doctor who I had to explain my entire history to all over again. He switched my antibiotic and increased my steroids. I was hoping this would do the trick.
Thursday, September 2, 2010
Time to taper the 'roids!
Oh what an exciting day!! Dr. Greisner had made an appointment for me with an endocrinologist to help get me off steroids! The day has finally come! Things have still been good. I've just started to feel a bit like I might be getting sick. I'm hoping things are different now though - that my body is different and so I'm thinking positive! (or in denial) Either way, things have been so good, I want to believe that my new improved body is a better fighter than my old wimpy one! Other quick news - I am no longer taking Pulmicort or Vospire for asthma! Yay!
My appointment with Dr. Myers was more like a meeting. Dr. Greisner had already sent him tons of infomation about me. We went into his office instead of an exam room. He explained the danger of tapering or stopping steroids especially after long term use. He wanted me to know what to look for so I could call the office if I had any of the symptoms. They would immediately order bloodwork to check my corisol levels and adjust the taper accordingly.
I was intrigued to learn that for a year after stopping the medrol, I would have to have what was called a stress dose of steroids in any type of emergency situation. The body is such a peculiar thing!
His plan was to taper the medrol so that I would be completely off by October 8th! I was elated! I couldn't believe it could happen so quickly! Dr. Myers was so positive about everything and so excited about my story. He said he just knew this would work out for me!
My appointment with Dr. Myers was more like a meeting. Dr. Greisner had already sent him tons of infomation about me. We went into his office instead of an exam room. He explained the danger of tapering or stopping steroids especially after long term use. He wanted me to know what to look for so I could call the office if I had any of the symptoms. They would immediately order bloodwork to check my corisol levels and adjust the taper accordingly.
I was intrigued to learn that for a year after stopping the medrol, I would have to have what was called a stress dose of steroids in any type of emergency situation. The body is such a peculiar thing!
His plan was to taper the medrol so that I would be completely off by October 8th! I was elated! I couldn't believe it could happen so quickly! Dr. Myers was so positive about everything and so excited about my story. He said he just knew this would work out for me!
Friday, August 27, 2010
How's my heart, doc?
Today was my much anticipated appointment with Dr. Bricker to find out how my heart has been healing. I rushed out of school at dismissal to make to the Gill Institute at UK hospital on time. I had to park at the hospital garage and walk over which was quite a feat!! Brandi, the nurse checked me in and rushed me over to the hospital for and ECHO. I was there for quite a while because they had some trouble getting the pictures they wanted. It was my first ECHO since being in Denver. Everything was fine but it did bring back a rush of memories. It was pretty painful when he was pressing over my sternum trying to get certain angles for the pictures. He wouldn't tell me if anything he was seeing was good, bad, or indifferent of course.
When they finished, I rushed back to the Gill where Brandi and Dr. Bricker were the only two souls around. Everyone else was already gone for the weekend. Dr. Bricker talked with me for a long time about how impressed he was with Dr. Campbell's work on my heart and the future. He said because of my condition, I could need a pacemaker years down the road, but not to worry now. Everything was looking good for now. It seemed to be healing nicely. I could begin increasing the amounts that I am lifting and working on strength training. I was even allowed to start mowing again!!! I was very excited! This was good news!
When they finished, I rushed back to the Gill where Brandi and Dr. Bricker were the only two souls around. Everyone else was already gone for the weekend. Dr. Bricker talked with me for a long time about how impressed he was with Dr. Campbell's work on my heart and the future. He said because of my condition, I could need a pacemaker years down the road, but not to worry now. Everything was looking good for now. It seemed to be healing nicely. I could begin increasing the amounts that I am lifting and working on strength training. I was even allowed to start mowing again!!! I was very excited! This was good news!
Sunday, August 22, 2010
The Dream is Real!!!!
Life is good! Life is so so good! I've been back at work for two weeks now! I can truly say I am breathing! I am breathing better than I have ever been able to breathe for as long as I can remember! I didn't have any idea it was possible to feel this good, this alive! I had no idea I felt that bad before honestly. Now I know how bad things were. Gosh, I don't even want to think about that now because things are so so good! I can breathe! :)
Today is Mom's birthday and it sounds quirky, but part of my gift to her (& the part that meant the most) was telling her that I put my nebulizer away! I've had my nebulizer (breathing machine) plugged in beside my bed for twelve years. In those twelve years, I could probably count on my two hands the number of nights I haven't had to wake up and use it multiple times. Today, I unplugged it and put it in the closet because I don't need it anymore!!!!!!!! What a miracle!
I am still on medrol (steroids) and all of my other asthma medicines. Dr. Greisner is talking about stopping them gradually very soon though! In fact, I have an appointment with an endocrinologist next week to discuss getting of steroids. It's apparently a very serious process since I've been on such a high dosage for so many years. The good news is that it is all actually becoming a reality!
As far as the heart surgery, I continue to get stronger daily. The past week and a half has truly been fantastic. I have had the least amount of pain and have been able to do more. I also have an appointment with Dr. Bricker this week. I'm very excited to find out how my heart is healing from the surgery.
The dream is finally real! I feel great! I can breathe! This is good!
Today is Mom's birthday and it sounds quirky, but part of my gift to her (& the part that meant the most) was telling her that I put my nebulizer away! I've had my nebulizer (breathing machine) plugged in beside my bed for twelve years. In those twelve years, I could probably count on my two hands the number of nights I haven't had to wake up and use it multiple times. Today, I unplugged it and put it in the closet because I don't need it anymore!!!!!!!! What a miracle!
I am still on medrol (steroids) and all of my other asthma medicines. Dr. Greisner is talking about stopping them gradually very soon though! In fact, I have an appointment with an endocrinologist next week to discuss getting of steroids. It's apparently a very serious process since I've been on such a high dosage for so many years. The good news is that it is all actually becoming a reality!
As far as the heart surgery, I continue to get stronger daily. The past week and a half has truly been fantastic. I have had the least amount of pain and have been able to do more. I also have an appointment with Dr. Bricker this week. I'm very excited to find out how my heart is healing from the surgery.
The dream is finally real! I feel great! I can breathe! This is good!
Thursday, June 10, 2010
Cataracts, really?
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.
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.
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.
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