Guess what?
I get to begin testing for my new kidney on Wednesday!! I got a call from Mayo Clinic on Friday while I was in musical rehearsal. I wasn't able to call them back until this morning, but when I did she said they have an opening for me to begin this Wednesday. I'm so excited! This means there is a light at the end of the tunnel!
The only down side is that the testing is going to take four days, which means I'll be out even more days from school. I don't have any more sick days left, so every day I'm gone is almost $100 out of my paycheck. It will all be worth it, but it's hard to take that kind of a hit every time I'm out for dialysis, or for this testing...
I feel really good about this. I know that it's the right thing for me to do. Now I just need to be patient. My nephrologist said the shortest time he's ever seen from testing to transplant is three months. I'm hoping to break that record...it would be nice to get it done right as soon as school is out so I can have the maximum time to heal before band camp starts up!
Anyway--good news! Thanks for all of your prayers and good wishes...they mean more to me than you know!
Monday, April 12, 2010
Wednesday, April 7, 2010
Love, Love, Love
My mom told me to write happier blogs...so here you go: :)
I went to dialysis yesterday and took Ian's iPod. He saved up all of his money for a little over a year and finally decided what he wanted to spend it on. He's had a lot of fun trying to find all of the little silly free apps you can get online. I played Tetris until my bloood pressure started going up because I was frustrated!
For one reason or another, I've missed all of the episodes of "Survivor" this season. I'm a "Survivor" junkie, so this has been difficult for me. I decided to look on iTunes to see if I could download episodes, and...sure enough...you can buy the entire season for $17.00. So I did. :) Yesterday while at dialysis I watched four episodes, and the time went by SO quickly! (I actually watched the fourth episode while driving home, but don't tell anyone...)
I love "Survivor." I actually love most reality TV shows. I guess you could call it my escape from reality. I love how "Survivor" is a microcosm of life--you make alliances with people, you betray people to get ahead, and sometimes the "villain" wins. It's an interesting show for me to watch, and my kids love it, too so we get to enjoy it together, which is fun.
Last night was "Lennon and McCartney" night on American Idol. Also very fun. Any Beatles song reminds me of my mom. It also reminds me of the trip we took to California one summer when we couldn't get any radio stations in and the only cassette tape we had was the Beatles. So guess what we listened to for at least four hours? Does anyone wonder why I know all of the lyrics to all of their songs? (At least their hits.)
I had a great trip to Utah last weekend. It was nice to be with my family--I've missed them while I've been sick. My grandpa, dad, uncle, brother-in-law, and husband were able to give me a priesthood blessing. My dad blessed me to know that my Heavenly Father loves me and that in His time my health would be restored. He also blessed me with patience...something that I've struggled with the last few months.
My grandpa told me a story that I didn't remember. He said that while I was sick with cancer, he and my grandma took me to visit my great-grandparents. After the visit, on the way home, my health declined quickly and my grandparents knew they needed to get me to a hospital. My grandpa said that at the time he wondered if it was worth it to keep fighting for my health when I was suffering and so sick. He said that when he looks back on that and then looks at where I am now--with a loving husband and two amazing kids--he knows it was worth every painful minute. I know it, too.
From this weekend, I've learned that:
1. I need to be patient
2. I have an amazing family
3. I have a Heavenly Father that loves me
4. I'll be all right--when the time is right
I went to dialysis yesterday and took Ian's iPod. He saved up all of his money for a little over a year and finally decided what he wanted to spend it on. He's had a lot of fun trying to find all of the little silly free apps you can get online. I played Tetris until my bloood pressure started going up because I was frustrated!
For one reason or another, I've missed all of the episodes of "Survivor" this season. I'm a "Survivor" junkie, so this has been difficult for me. I decided to look on iTunes to see if I could download episodes, and...sure enough...you can buy the entire season for $17.00. So I did. :) Yesterday while at dialysis I watched four episodes, and the time went by SO quickly! (I actually watched the fourth episode while driving home, but don't tell anyone...)
I love "Survivor." I actually love most reality TV shows. I guess you could call it my escape from reality. I love how "Survivor" is a microcosm of life--you make alliances with people, you betray people to get ahead, and sometimes the "villain" wins. It's an interesting show for me to watch, and my kids love it, too so we get to enjoy it together, which is fun.
Last night was "Lennon and McCartney" night on American Idol. Also very fun. Any Beatles song reminds me of my mom. It also reminds me of the trip we took to California one summer when we couldn't get any radio stations in and the only cassette tape we had was the Beatles. So guess what we listened to for at least four hours? Does anyone wonder why I know all of the lyrics to all of their songs? (At least their hits.)
I had a great trip to Utah last weekend. It was nice to be with my family--I've missed them while I've been sick. My grandpa, dad, uncle, brother-in-law, and husband were able to give me a priesthood blessing. My dad blessed me to know that my Heavenly Father loves me and that in His time my health would be restored. He also blessed me with patience...something that I've struggled with the last few months.
My grandpa told me a story that I didn't remember. He said that while I was sick with cancer, he and my grandma took me to visit my great-grandparents. After the visit, on the way home, my health declined quickly and my grandparents knew they needed to get me to a hospital. My grandpa said that at the time he wondered if it was worth it to keep fighting for my health when I was suffering and so sick. He said that when he looks back on that and then looks at where I am now--with a loving husband and two amazing kids--he knows it was worth every painful minute. I know it, too.
From this weekend, I've learned that:
1. I need to be patient
2. I have an amazing family
3. I have a Heavenly Father that loves me
4. I'll be all right--when the time is right
Wednesday, March 31, 2010
After All
Courtnie came home yesterday with a note from her teacher telling me that she'd like to meet with me about Courtnie's progress. After giving Courtnie the third degree about why she wanted to meet, we came to really no conclusion.
I have been so tired after school that I usually just go to bed and let the kids fend for themselves on their homework. Gordon helps when needed, but we haven't been checking their homework and monitoring their school work like we should.
Turns out Courtnie's work has been slipping. Her handwriting isn't as good as it used to be and her grades are taking a nose dive. When I talked to her teacher this morning, she told me that Courtnie seems distracted--especially before spring break, which was the time I was so sick and in the hospital.
I started to cry because the last thing I want is for my illness to affect my family. This is killing me. Courtnie is such a smart girl, and can do the work with one hand tied behind her back. She's never let on that she's worried about me--she's always been easy-going, cheerful Courtnie. For those reasons, it never occurred to me that it would bother her at school.
Her teacher was very understanding, and had no idea what was going on at home. I should have told her so that she could keep a special eye on her, but for whatever reason, I didn't. Now that she knows, she said that she'd try to keep her focused. Luckily, I'm feeling SO much better and can be a better mom now.
I feel awful. I know there's nothing I could have done about it, but I want to maintain some degree of normalcy so badly. I'm hoping things will be different from here on out.
I have been so tired after school that I usually just go to bed and let the kids fend for themselves on their homework. Gordon helps when needed, but we haven't been checking their homework and monitoring their school work like we should.
Turns out Courtnie's work has been slipping. Her handwriting isn't as good as it used to be and her grades are taking a nose dive. When I talked to her teacher this morning, she told me that Courtnie seems distracted--especially before spring break, which was the time I was so sick and in the hospital.
I started to cry because the last thing I want is for my illness to affect my family. This is killing me. Courtnie is such a smart girl, and can do the work with one hand tied behind her back. She's never let on that she's worried about me--she's always been easy-going, cheerful Courtnie. For those reasons, it never occurred to me that it would bother her at school.
Her teacher was very understanding, and had no idea what was going on at home. I should have told her so that she could keep a special eye on her, but for whatever reason, I didn't. Now that she knows, she said that she'd try to keep her focused. Luckily, I'm feeling SO much better and can be a better mom now.
I feel awful. I know there's nothing I could have done about it, but I want to maintain some degree of normalcy so badly. I'm hoping things will be different from here on out.
Sunday, March 28, 2010
Headache
I woke up this morning at 6 a.m. with a screaming headache. I tried my usual relaxation techniques to get rid of it, but they didn't work today. (Bill will remember the relaxation techniques...remember that workshop we went to when we were in high school? "What color is your headache? What shape is your headache? If you held a candle up to it, could you see through it?")
So I got out of bed and took a pain pill. Maybe I'm addicted. I sure hope not. That would be one MORE thing to have to deal with! :)
I went to dialysis yesterday and forgot to take my blood pressure meds first. BAD move! My initial blood pressure reading was 195/105. YIKES! It goes down a little once they start dialysis, but that was still scary. As a result--yep--you guessed it--I threw up a bunch when it was all over. I felt so stupid. I just can't forget to take my meds. I felt awful all of the way home. I got home and took my meds and felt better right away. I suppose that's the answer to why I would get so nauseous. High blood pressure=throwing up.
The best part about not feeling so well is that Gordon came to bed with me and we snuggled most of the night. We watched "Steel Magnolias," which is one of our favorite movies ever. Gordon says it's the only "chick flick" he can actually stand. The one-liners from that movie are priceless, and I use them all of the time. My favorites: "You are evil, and you must be destroyed" and "you are a pig from HELL!"
About the time when Shelby starts dialysis is when Courtnie left the room. She said, "I don't like this movie anymore." I guess it hit home for her. She's seen it before and knew what happened to Shelby when her kidney transplant failed.
That hit home for me, too. As much as I'm looking forward to getting a kidney transplant, there's the possibility that it might fail. There's always going to be the unknown, I suppose. The "what ifs" in life keep things interesting. Maybe that's why that man at the dialysis center I go to has been on dialysis for 15 years...he's scared of the "what ifs." I know that I will have good doctors that will monitor things for me very carefully and if I am good to my body, it will be good to me. I also know that I have WAY too much work to do yet on this earth and I'm not ready to be done yet. I need to see Ian off on a mission, Courtnie getting married, and holding and taking care of my grand babies. That means I've got to be around for another 30 years at least!
I'm not going anywhere!
So I got out of bed and took a pain pill. Maybe I'm addicted. I sure hope not. That would be one MORE thing to have to deal with! :)
I went to dialysis yesterday and forgot to take my blood pressure meds first. BAD move! My initial blood pressure reading was 195/105. YIKES! It goes down a little once they start dialysis, but that was still scary. As a result--yep--you guessed it--I threw up a bunch when it was all over. I felt so stupid. I just can't forget to take my meds. I felt awful all of the way home. I got home and took my meds and felt better right away. I suppose that's the answer to why I would get so nauseous. High blood pressure=throwing up.
The best part about not feeling so well is that Gordon came to bed with me and we snuggled most of the night. We watched "Steel Magnolias," which is one of our favorite movies ever. Gordon says it's the only "chick flick" he can actually stand. The one-liners from that movie are priceless, and I use them all of the time. My favorites: "You are evil, and you must be destroyed" and "you are a pig from HELL!"
About the time when Shelby starts dialysis is when Courtnie left the room. She said, "I don't like this movie anymore." I guess it hit home for her. She's seen it before and knew what happened to Shelby when her kidney transplant failed.
That hit home for me, too. As much as I'm looking forward to getting a kidney transplant, there's the possibility that it might fail. There's always going to be the unknown, I suppose. The "what ifs" in life keep things interesting. Maybe that's why that man at the dialysis center I go to has been on dialysis for 15 years...he's scared of the "what ifs." I know that I will have good doctors that will monitor things for me very carefully and if I am good to my body, it will be good to me. I also know that I have WAY too much work to do yet on this earth and I'm not ready to be done yet. I need to see Ian off on a mission, Courtnie getting married, and holding and taking care of my grand babies. That means I've got to be around for another 30 years at least!
I'm not going anywhere!
Friday, March 26, 2010
Info About Being a Kidney Donor
So--a friend suggested that I post my blood type on my blog so that those interested in possibly getting screened as a kidney donor have that information.
I have A+ blood. (I wish that meant I was super smart...) ;) This means that you can only donate a kidney to me if you have A or O blood type. Evidently the + or - doesn't really make a difference. There are other tests that need to be done to determine if our tissue types match, and other criteria. Here's a really great website with some good info on being a kidney donor:
http://www.kidney.org/transplantation/livingDonors/infoQA.cfm
I found it very helpful...glad this friend sent it my way.
On a funnier note...one of my friends has offered to donate a kidney to me. She's a devout Catholic, so she said if I used her kidney, I'd be part-Catholic. I told her that would be an honor...I've always found the Catholic religion to be beautiful. ;0)
Love to all,
Amie
I have A+ blood. (I wish that meant I was super smart...) ;) This means that you can only donate a kidney to me if you have A or O blood type. Evidently the + or - doesn't really make a difference. There are other tests that need to be done to determine if our tissue types match, and other criteria. Here's a really great website with some good info on being a kidney donor:
http://www.kidney.org/transplantation/livingDonors/infoQA.cfm
I found it very helpful...glad this friend sent it my way.
On a funnier note...one of my friends has offered to donate a kidney to me. She's a devout Catholic, so she said if I used her kidney, I'd be part-Catholic. I told her that would be an honor...I've always found the Catholic religion to be beautiful. ;0)
Love to all,
Amie
Wednesday, March 17, 2010
"Why ME?" Answered
I just got home from the hospital and was looking forward to a GREAT night sleep in my OWN bed.
Unfortunately, I'm having trouble falling asleep, so I'm on my second blog of the night.
I got on Facebook to see what's up with my homies. I had six friend requests...woo hoo! One of them was from a friend I had back in 2nd grade. She said she'd been looking for me for the past 25 years. She and I were best friends and I used to stay the night at her house.
This would have been the time when I had cancer, and I don't remember much about that time. I've blocked out most of the memories. We also moved at least 10 times between the time I was born and we moved to Utah when I was nine, so cities, schools, and friends blend together.
She said she'd been looking for me all of this time because I made such an impression on her, even when I was that young. Another boy from our 2nd grade class was also looking for me and they happened to find me at the same time. (He also added me as a friend tonight.)
Last Sunday in church, the Relief Society lesson was given by our president. She gave it on finding blessings through trials. She asked something about examples of people who have overcome adversity. One of my good friends raised her hand and talked about me. She said that she has been so impressed with mine and Gordon's testimony and faith that things will get better. Our attitude, she said, has been an inspiration to her. Others commented and shared the same sentiment.
I said that I'm just one little person trying to stay positive. I don't mean to influence people, I'm just trying to muddle through. Someone else said that I am having a huge influence. Then my good friend Debbie said, "Maybe that's the answer to 'why me?'"
Since that comment, I've been thinking a lot about "why me?" Perhaps the reason I'm going through this is to help others. I've been through a lot in my life, and all along the way people tell me that I've inspired them or caused them to think about their own life. Perhaps I'm a teacher of more than just music.
I don't mean to sound arrogant about this--I'd give anything to not have to go through what I'm going through. If I can help someone through their trials by my example, then maybe it's worth it.
One of the nurses commented about my remarkable attitude while I was in the hospital. I told him that I believe 100% that it's the only choice we have in this life. Attitude is the only thing we have complete control over. We don't get to choose what happens to us a lot of the time, but we do get to choose how we react to it. I know that the attitude I choose to have affects so much of how I feel and how others around me feel.
I'm grateful for this choice. I hope I can continue to help others through my trials. (Don't get me wrong...I'd still like to not have them!) :)
Unfortunately, I'm having trouble falling asleep, so I'm on my second blog of the night.
I got on Facebook to see what's up with my homies. I had six friend requests...woo hoo! One of them was from a friend I had back in 2nd grade. She said she'd been looking for me for the past 25 years. She and I were best friends and I used to stay the night at her house.
This would have been the time when I had cancer, and I don't remember much about that time. I've blocked out most of the memories. We also moved at least 10 times between the time I was born and we moved to Utah when I was nine, so cities, schools, and friends blend together.
She said she'd been looking for me all of this time because I made such an impression on her, even when I was that young. Another boy from our 2nd grade class was also looking for me and they happened to find me at the same time. (He also added me as a friend tonight.)
Last Sunday in church, the Relief Society lesson was given by our president. She gave it on finding blessings through trials. She asked something about examples of people who have overcome adversity. One of my good friends raised her hand and talked about me. She said that she has been so impressed with mine and Gordon's testimony and faith that things will get better. Our attitude, she said, has been an inspiration to her. Others commented and shared the same sentiment.
I said that I'm just one little person trying to stay positive. I don't mean to influence people, I'm just trying to muddle through. Someone else said that I am having a huge influence. Then my good friend Debbie said, "Maybe that's the answer to 'why me?'"
Since that comment, I've been thinking a lot about "why me?" Perhaps the reason I'm going through this is to help others. I've been through a lot in my life, and all along the way people tell me that I've inspired them or caused them to think about their own life. Perhaps I'm a teacher of more than just music.
I don't mean to sound arrogant about this--I'd give anything to not have to go through what I'm going through. If I can help someone through their trials by my example, then maybe it's worth it.
One of the nurses commented about my remarkable attitude while I was in the hospital. I told him that I believe 100% that it's the only choice we have in this life. Attitude is the only thing we have complete control over. We don't get to choose what happens to us a lot of the time, but we do get to choose how we react to it. I know that the attitude I choose to have affects so much of how I feel and how others around me feel.
I'm grateful for this choice. I hope I can continue to help others through my trials. (Don't get me wrong...I'd still like to not have them!) :)
Incoherent Thoughts
I knew something was really wrong when I couldn't finish my cereal Wednesday morning.
I needed to take my students to a jazz festival Wednesday, so I bucked up and went to school. The students played really well--we received the only "Excellent" rating of the whole year, so I was STOKED! We stopped to eat in Anthem at the food court, and all I could eat was a couple of pretzel sticks.
I got home later that afternoon and went straight to bed. Gordon came home and asked what he could make me for dinner. I thought that tacos sounded good, so he made them for me...fresh taco shells and all. They came back up about 15 minutes later.
I vomited and vomited the rest of the night. I can't ever remember feeling so sick. My heart was racing and I just couldn't get comfortable. I think I may have dozed off for a bit around 4:00 a.m.
Gordon came home from work and took me straight to the ER. They tried to put in an IV for about 30 minutes before finally finding a vein in the knuckle of my ring finger on my right hand. They pumped some fluids in me and sent me home about six hours later. We stopped at Costco to fill a new anti-nausea medication and I got so hot that I took my shirt off and rode the rest of the way home semi-naked. THAT must have been a sight. I can only imagine what Gordon was thinking...
Another "vomitous" night took place Thursday. By this time, I was just vomiting everywhere...on my bed, in the kitchen sink. I even threw up into the bag that contains all of my medications. (They're all ruined now...GREAT!) I knew I wouldn't make it to school again on Friday, so I told Gordon I needed to call in for a sub. Evidently I tried to make a phone call using the TV remote. I then found my phone and threw up all over it. (Luckily it still works!)
Gordon took me back to the ER Friday and luckily we had a new doctor who actually listened to us. He admitted me right away and the hospital staff worked on getting me "equilibrilized" quickly. I didn't really know where I was, what year or month it was, who my kids' teachers are or what school they attend. Gordon tells me that he was so scared. I'm usually a stickler for details, so I can only imagine.
It took until Saturday for me to start to get back to normal. I'll never forget Gordon's eyes when he kissed me and said, "Thanks for coming back to me."
I had a great doctor--not my own--who was diligent in checking on me...even on Sunday. I was so impressed with his care for me. He ordered a bunch of tests, including a couple of GI tests that weren't so pleasant. I had an endoscopy done on Monday...not too bad. I enjoyed being "sedated" for the test. (A nice feeling after being so sick!) Tuesday I had a test that involved a radioactive hard boiled egg. I HATE eggs! They make me sick! I choked down the egg and then had to lay on a table for 90 minutes so that they could watch it digest. Turns out one of my big problems may be that I don't digest food fast enough. They prescribed the drug Reglan today and it helped a great deal. We'll see... The doctor also prescribed Valium and Zofran (an anti-nausea medication) for me to take before going to dialysis...just in case my nausea relating to dialysis is psychosomatic. (Which it very well may be. I am a little goofy!)
I had a couple of difficult days in the hospital. Days when I wondered if it was worth it at all. They put a central line in my neck because I don't have any veins to speak of at all, and it stopped giving blood on Monday. In come the phlebotomists who mean well and I know are just doing their job, but have no clue what it's like to be me. I got poked nine times Monday morning and they all hurt like hell. I've got nine lovely bruises on my arms to show for it. After that torture I called Gordon and told him that I didn't think my Heavenly Father loved me anymore. I felt like I had nothing to show for it. I know that's not true, but it sure did feel like it at the time. I have to admit that I've felt on more than one occasion that He's forgotten about me.
So, I'm home today. It feels so good. I enjoyed my Streets of New York pizza and snuggling Courtnie on the couch while watching "Twister" on TV. I love my family so much. Whenever I wonder if it's all worth it, I know that it is because I have two beautiful children and an amazing husband who (for whatever reason) want me around. During my darkest times, I can hold fast to that.
I needed to take my students to a jazz festival Wednesday, so I bucked up and went to school. The students played really well--we received the only "Excellent" rating of the whole year, so I was STOKED! We stopped to eat in Anthem at the food court, and all I could eat was a couple of pretzel sticks.
I got home later that afternoon and went straight to bed. Gordon came home and asked what he could make me for dinner. I thought that tacos sounded good, so he made them for me...fresh taco shells and all. They came back up about 15 minutes later.
I vomited and vomited the rest of the night. I can't ever remember feeling so sick. My heart was racing and I just couldn't get comfortable. I think I may have dozed off for a bit around 4:00 a.m.
Gordon came home from work and took me straight to the ER. They tried to put in an IV for about 30 minutes before finally finding a vein in the knuckle of my ring finger on my right hand. They pumped some fluids in me and sent me home about six hours later. We stopped at Costco to fill a new anti-nausea medication and I got so hot that I took my shirt off and rode the rest of the way home semi-naked. THAT must have been a sight. I can only imagine what Gordon was thinking...
Another "vomitous" night took place Thursday. By this time, I was just vomiting everywhere...on my bed, in the kitchen sink. I even threw up into the bag that contains all of my medications. (They're all ruined now...GREAT!) I knew I wouldn't make it to school again on Friday, so I told Gordon I needed to call in for a sub. Evidently I tried to make a phone call using the TV remote. I then found my phone and threw up all over it. (Luckily it still works!)
Gordon took me back to the ER Friday and luckily we had a new doctor who actually listened to us. He admitted me right away and the hospital staff worked on getting me "equilibrilized" quickly. I didn't really know where I was, what year or month it was, who my kids' teachers are or what school they attend. Gordon tells me that he was so scared. I'm usually a stickler for details, so I can only imagine.
It took until Saturday for me to start to get back to normal. I'll never forget Gordon's eyes when he kissed me and said, "Thanks for coming back to me."
I had a great doctor--not my own--who was diligent in checking on me...even on Sunday. I was so impressed with his care for me. He ordered a bunch of tests, including a couple of GI tests that weren't so pleasant. I had an endoscopy done on Monday...not too bad. I enjoyed being "sedated" for the test. (A nice feeling after being so sick!) Tuesday I had a test that involved a radioactive hard boiled egg. I HATE eggs! They make me sick! I choked down the egg and then had to lay on a table for 90 minutes so that they could watch it digest. Turns out one of my big problems may be that I don't digest food fast enough. They prescribed the drug Reglan today and it helped a great deal. We'll see... The doctor also prescribed Valium and Zofran (an anti-nausea medication) for me to take before going to dialysis...just in case my nausea relating to dialysis is psychosomatic. (Which it very well may be. I am a little goofy!)
I had a couple of difficult days in the hospital. Days when I wondered if it was worth it at all. They put a central line in my neck because I don't have any veins to speak of at all, and it stopped giving blood on Monday. In come the phlebotomists who mean well and I know are just doing their job, but have no clue what it's like to be me. I got poked nine times Monday morning and they all hurt like hell. I've got nine lovely bruises on my arms to show for it. After that torture I called Gordon and told him that I didn't think my Heavenly Father loved me anymore. I felt like I had nothing to show for it. I know that's not true, but it sure did feel like it at the time. I have to admit that I've felt on more than one occasion that He's forgotten about me.
So, I'm home today. It feels so good. I enjoyed my Streets of New York pizza and snuggling Courtnie on the couch while watching "Twister" on TV. I love my family so much. Whenever I wonder if it's all worth it, I know that it is because I have two beautiful children and an amazing husband who (for whatever reason) want me around. During my darkest times, I can hold fast to that.
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