So, I haven't written in a really long time, but better late than never I suppose. :)
I hope everyone who reads this is doing wonderfully and staying healthy! :) Wow, I haven't written since I got home I guess. I had a wonderful Christmas with my family and I'm so blessed and happy to say that it was the first Christmas that I've ever had when I was NOT on IV medicine! I've only had one bout with rejection since my transplant and it was very minor and happened 3 months after transplant. It has now been 7 months, almost 8, and I haven't had any rejection since. I am staying in contact with my donor's family and I was so suprised to find out that he was a 57 year old man who was a priest. He was a terrific man/person and I am so honored to have a part of him with me forever. He is my hero.
I've also payed what I owe to Newberry College and have now applied to transfer to Charleston Southern University! I cannot wait to get back in to school! I can't imagine how school will be now. It was always really hard to study and wake up and get ready for class. But now, I feel like I will be able to study and do so much better on all of my assignments! I like how CSU is a Christian based school much like Newberry and it is small as well.
I'm going up to Newberry for graduation to see some of my very good friends graduate in May. I can't wait for that day! I have missed my Newberry friends so much these last couple of months and I want them to see me happy and healthy!!!! I'm also planning to move with my friend Sam to Charleston. I'm so excited to start my new life and finally be independent. Don't get me wrong, I love my parents with all of my heart and I appreciate everything they have ever and continue to do for me, but I also feel like it's time to go. Now that I am healthy, I feel like I can handle it without a problem. I will visit a lot, I know, haha.
Just thought I would update this thing and let y'all know how I am doing. I really can't say enough how wonderful I feel these days. I truly have a brand new life. It's like I started all over. I thank my donor everyday for his gift to me. There is no way to ever express my appreciation for this new life that I have and how thankful I am to him for making it possible. All the struggles and pain I've gone through in my life are worth just one second with my new lungs. I would do it all over again in a heartbeat, no question. When I look back on everything that has happened in my life, I know now that it was preparing me for the way things are now. It is amazing how God's plan is unfolding right in front of my eyes these last 7 months. God made me such a strong person, and I have the strongest family. I am truly blessed in every aspect of my life.
Sorry for babbling on, I just have a lot on my mind lately ;) Love to everyone!!!! Thanks for reading and caring :)))) Write soon, I hope.
Wednesday, April 27, 2011
Monday, October 18, 2010
It's Been a Whirlwind
I have been awake since 4am with a headache, and as I was sitting in the recliner my mind started to wander. I starting thinking about the last 2 1/2 months and what all has happened. I honestly cannot believe the difference 2 1/2 months and a new set of lungs can make.
In August my Mom and I came up to Duke for the transplant evaluation. I was excited, but obviously not feeling my best. We went through the first couple of days all right. I was on a lot of oxygen and Mom had to push me around in a wheelchair when we went to the hospital because it was just too much walking for me. By the middle of the week I was already exhausted. Our appointment that day was with Dr. Zaas, one of the transplant doctors. I remember telling Mom, "I don't know if I can do this". She offered to pack up the car and drive home, immediately to the hospital (MUSC) for treatment. Me being stubborn said, "I can't, I have to finish this". Thank God we went to that appointment, because once he saw the condition I was in, and how much oxygen I was using at rest, he decided to admit me to the hospital and get me on the transplant list ASAP.
The next week was basically meeting all the doctors up here at Duke (pulmonary team) and trying to figure out the best IV meds to treat my infection. I also completed what tests I could for the rest of the evaluation. I was having to wear my BIPAP all the time at this point to keep my oxygen saturation above 88%. A BIPAP is a mask you wear and it helps you to breathe by forcing air into your lungs, that way you don't have to exert as much effort to breathe. Mine just fit over my nose, so that way my mouth was free to talk and eat (Thank God :) ). I lost strength pretty fast, getting winded just to walk from the bed to the bathroom. Mom had to start to help me bathe, and pretty much anything else that involved standing, walking, or getting up. It was not looking too good.
The following week I was listed. I remember signing the papers praying to God to let the transplant come soon. My Dad was there with me when I signed all the papers. I honestly don't think I really read any of the consent forms. At that point, I was willing to do anything to just be well again.
I believe it was just 4 days after I signed the papers that I got my first call. She called the night of September 8th 2010 saying that they might have some lungs for me. I, of course, starting flipping out and calling my Mom to tell her. We didn't know at that time if the lungs were good and if everything was a go for surgery, and we wouldn't know for sure until about 3am the next morning. I stayed up the whole night waiting for her call. Nurses were in and out of the room getting me ready (They have to prep you for surgery as if it is the real thing, even if they aren't sure the condition of the lungs) to go at any minute. When she called to say it was a go and everything looked good, I remember being so nervous I couldn't even think straight. I was also extremely excited. And scared. Correction: Terrified. I got on the phone, I think I may have even hung up on the woman who called me (oops), and called my Mom and Dad to tell them to get over to the hospital, "It's a Go!" By the time they got there I was about to be taken down to surgery. The anesthesiologist took me down to the operating room and I remember him talking to me, but I have no clue what he said now. He gave me some pretty good sleepy time medicine and I was out like a light. For about 8 hours I believe.
Next thing I know I'm in the Recovery Room ICU trying to breathe. It seems like everyone asks me, "What was it like to wake up and be able to breathe?" Well, I actually couldn't breathe when I woke up. I was on a respirator, but they wanted to take me off of it so I had to show them that I could breathe on my own. The thing about transplanted lungs is that your body doesn't recognize them because they aren't yours. So when they are trying to breathe, your brain doesn't realize it and it is telling you that you CAN'T breathe even though you are. Crazy, huh? So basically you feel like you are suffocating. Just those first few breaths though, then your body slowly gets used to it. Now you see what I mean by whirlwind.
Mom says they had me up and walking the day after surgery. I remember none of this, but they were impressed with my progress and I moved to the Step Down Unit in a few days. This was much better because my family could come visit and stay as long as they wanted. In ICU they could only stay for 20 minutes at a time and only 2 people at a time.
I still don't remember much about this either. I had an IV in my neck (carotid artery) so they could deliver meds quickly during and after surgery. Mom said when I first came out of surgery, they had 10 IVs hooked up to it all running in at the same time. The highest chance of rejection is right after surgery so that's why they put you on so many drugs. They even give you a dose before the operation. But anyways..I remember having my "happy button". Which was my pain killer coming through an epidural that was placed at the top of my spine. They put it in when I was still out of it, so thankfully I do not remember that. I had 7 chest tubes in, 5 big, 2 small, and a nice incision from my left armpit to my right armpit with 70 staples running across it. So needless to say, me and the "happy button" became the best of friends.
The sucky thing about it was that since I was under anesthesia for so long and had just undergone major surgery, everything in my body was still acting like it was asleep (or at least really groggy). So I couldn't swallow correctly for awhile, my stomach was very sluggish for a while, which led to a laxative and enema..YUCKKKK! And my muscles were mush. The only cure for those things is time...and exercise. The physical therapists had me up and walking laps around the Unit in no time. I will admit I did not like to see them coming to my room, but I'm thankful for them everyday because they are part of the reason why my recovery moved so quickly.
The worst part by FAR had to have been when they removed my chest tubes. Two words: Living Hell. I'm sorry, but I could not wish that pain upon my worst enemy. Thankfully she only took 3 out the first time, 2 the second, and then the small ones the third time right before I went home. It literally feels like they are pulling, no, yanking your insides out. But right after that experience came the best experience of my new life so far....with all the tubes out of me my lungs had room to expand and I got my first REAL breath of air. It was the most amazing experience. I started crying and Mom said, "What's wrong?", and all I could say was, "I can breathe." So I had the worst experience and the best all within about half an hour of each other. God's funny that way.
So, with things moving right along I was discharged from the hospital about a week after my transplant. And here we are today, October 18th and I'm still getting better! Rehab is going great..I walked 17 laps around the track the other day in my 30 minutes. I went up a level on my weights and resistance band. I have 11 sessions in, so that puts me about half way until I can graduate! I am so grateful for this gift of life given to me by a selfless donor who is my hero. They gave me a second chance at life and it is impossible to show my gratitude as well as sympathy to the family of this amazing person. My only wish is that my brother had the same opportunities that I have been given.
Well, I know this has been an unusually long blog, but I just felt like writing some of this stuff down. Just in case I get more anesthesia and forget everything again, ha ha. I hope you enjoyed reading though. Thank you for the continued support and love. I miss you all and love you even more! :)
In August my Mom and I came up to Duke for the transplant evaluation. I was excited, but obviously not feeling my best. We went through the first couple of days all right. I was on a lot of oxygen and Mom had to push me around in a wheelchair when we went to the hospital because it was just too much walking for me. By the middle of the week I was already exhausted. Our appointment that day was with Dr. Zaas, one of the transplant doctors. I remember telling Mom, "I don't know if I can do this". She offered to pack up the car and drive home, immediately to the hospital (MUSC) for treatment. Me being stubborn said, "I can't, I have to finish this". Thank God we went to that appointment, because once he saw the condition I was in, and how much oxygen I was using at rest, he decided to admit me to the hospital and get me on the transplant list ASAP.
The next week was basically meeting all the doctors up here at Duke (pulmonary team) and trying to figure out the best IV meds to treat my infection. I also completed what tests I could for the rest of the evaluation. I was having to wear my BIPAP all the time at this point to keep my oxygen saturation above 88%. A BIPAP is a mask you wear and it helps you to breathe by forcing air into your lungs, that way you don't have to exert as much effort to breathe. Mine just fit over my nose, so that way my mouth was free to talk and eat (Thank God :) ). I lost strength pretty fast, getting winded just to walk from the bed to the bathroom. Mom had to start to help me bathe, and pretty much anything else that involved standing, walking, or getting up. It was not looking too good.
The following week I was listed. I remember signing the papers praying to God to let the transplant come soon. My Dad was there with me when I signed all the papers. I honestly don't think I really read any of the consent forms. At that point, I was willing to do anything to just be well again.
I believe it was just 4 days after I signed the papers that I got my first call. She called the night of September 8th 2010 saying that they might have some lungs for me. I, of course, starting flipping out and calling my Mom to tell her. We didn't know at that time if the lungs were good and if everything was a go for surgery, and we wouldn't know for sure until about 3am the next morning. I stayed up the whole night waiting for her call. Nurses were in and out of the room getting me ready (They have to prep you for surgery as if it is the real thing, even if they aren't sure the condition of the lungs) to go at any minute. When she called to say it was a go and everything looked good, I remember being so nervous I couldn't even think straight. I was also extremely excited. And scared. Correction: Terrified. I got on the phone, I think I may have even hung up on the woman who called me (oops), and called my Mom and Dad to tell them to get over to the hospital, "It's a Go!" By the time they got there I was about to be taken down to surgery. The anesthesiologist took me down to the operating room and I remember him talking to me, but I have no clue what he said now. He gave me some pretty good sleepy time medicine and I was out like a light. For about 8 hours I believe.
Next thing I know I'm in the Recovery Room ICU trying to breathe. It seems like everyone asks me, "What was it like to wake up and be able to breathe?" Well, I actually couldn't breathe when I woke up. I was on a respirator, but they wanted to take me off of it so I had to show them that I could breathe on my own. The thing about transplanted lungs is that your body doesn't recognize them because they aren't yours. So when they are trying to breathe, your brain doesn't realize it and it is telling you that you CAN'T breathe even though you are. Crazy, huh? So basically you feel like you are suffocating. Just those first few breaths though, then your body slowly gets used to it. Now you see what I mean by whirlwind.
Mom says they had me up and walking the day after surgery. I remember none of this, but they were impressed with my progress and I moved to the Step Down Unit in a few days. This was much better because my family could come visit and stay as long as they wanted. In ICU they could only stay for 20 minutes at a time and only 2 people at a time.
I still don't remember much about this either. I had an IV in my neck (carotid artery) so they could deliver meds quickly during and after surgery. Mom said when I first came out of surgery, they had 10 IVs hooked up to it all running in at the same time. The highest chance of rejection is right after surgery so that's why they put you on so many drugs. They even give you a dose before the operation. But anyways..I remember having my "happy button". Which was my pain killer coming through an epidural that was placed at the top of my spine. They put it in when I was still out of it, so thankfully I do not remember that. I had 7 chest tubes in, 5 big, 2 small, and a nice incision from my left armpit to my right armpit with 70 staples running across it. So needless to say, me and the "happy button" became the best of friends.
The sucky thing about it was that since I was under anesthesia for so long and had just undergone major surgery, everything in my body was still acting like it was asleep (or at least really groggy). So I couldn't swallow correctly for awhile, my stomach was very sluggish for a while, which led to a laxative and enema..YUCKKKK! And my muscles were mush. The only cure for those things is time...and exercise. The physical therapists had me up and walking laps around the Unit in no time. I will admit I did not like to see them coming to my room, but I'm thankful for them everyday because they are part of the reason why my recovery moved so quickly.
The worst part by FAR had to have been when they removed my chest tubes. Two words: Living Hell. I'm sorry, but I could not wish that pain upon my worst enemy. Thankfully she only took 3 out the first time, 2 the second, and then the small ones the third time right before I went home. It literally feels like they are pulling, no, yanking your insides out. But right after that experience came the best experience of my new life so far....with all the tubes out of me my lungs had room to expand and I got my first REAL breath of air. It was the most amazing experience. I started crying and Mom said, "What's wrong?", and all I could say was, "I can breathe." So I had the worst experience and the best all within about half an hour of each other. God's funny that way.
So, with things moving right along I was discharged from the hospital about a week after my transplant. And here we are today, October 18th and I'm still getting better! Rehab is going great..I walked 17 laps around the track the other day in my 30 minutes. I went up a level on my weights and resistance band. I have 11 sessions in, so that puts me about half way until I can graduate! I am so grateful for this gift of life given to me by a selfless donor who is my hero. They gave me a second chance at life and it is impossible to show my gratitude as well as sympathy to the family of this amazing person. My only wish is that my brother had the same opportunities that I have been given.
Well, I know this has been an unusually long blog, but I just felt like writing some of this stuff down. Just in case I get more anesthesia and forget everything again, ha ha. I hope you enjoyed reading though. Thank you for the continued support and love. I miss you all and love you even more! :)
Friday, October 1, 2010
TGIF
Thank God It's Friday! :) This week was actually pretty good. Just the usual working out Monday, Doctors all day Tuesday, Working out Wednesday, 3 hour medicine on Thursday and shopping with mom ;), Work out today and then Dad came to visit for the weekend!
Therapy has been going really good and gets easier every time. I still use a walker to get around the track, but I walk around on my own around the apartment. I'm starting to find myself getting antsy when it's time to go because I WANT to go exercise so bad. It's amazing how good it makes you feel afterwards. I've made some cool friends there too, so that helps. It doesn't really feel like you are there from 12:30-4:30.
Sleeping is getting easier too, I can lay on my side for a few hours at a time, which is AWESOME because that's the only way I used to lay before when I slept. Sleeping on your back is just awkward to me for some reason. I still have to use a wedge though because of acid reflux and aspirating and all that junk. BUT, things are getting BETTER, and that's all that matters. My incision is healing nicely and so are the stitches where the tubes were.
I just want to say thank you again to everyone who is praying and thinking about me during this time. It really means a lot to me. I just ask that you please keep my family especially my parents in your prayers as well because they are going through a lot right now as you can imagine. They have been so supportive and wonderful throughout this entire thing. Just pray for them, thank you :) I love all of yall, thanks for reading :)
Therapy has been going really good and gets easier every time. I still use a walker to get around the track, but I walk around on my own around the apartment. I'm starting to find myself getting antsy when it's time to go because I WANT to go exercise so bad. It's amazing how good it makes you feel afterwards. I've made some cool friends there too, so that helps. It doesn't really feel like you are there from 12:30-4:30.
Sleeping is getting easier too, I can lay on my side for a few hours at a time, which is AWESOME because that's the only way I used to lay before when I slept. Sleeping on your back is just awkward to me for some reason. I still have to use a wedge though because of acid reflux and aspirating and all that junk. BUT, things are getting BETTER, and that's all that matters. My incision is healing nicely and so are the stitches where the tubes were.
I just want to say thank you again to everyone who is praying and thinking about me during this time. It really means a lot to me. I just ask that you please keep my family especially my parents in your prayers as well because they are going through a lot right now as you can imagine. They have been so supportive and wonderful throughout this entire thing. Just pray for them, thank you :) I love all of yall, thanks for reading :)
Thursday, September 23, 2010
The Journey Begins.......
So, obviously I haven't been on the computer in a while. But for good reason. I HAVE NEW LUNGS!!!!!!!! I am sore, but have done really well post-op.
At first, everything was pretty overwhelming, but I'm slowly getting used to my new lungs and also learning how to do everything normally again. I have to teach myself how to breathe in these new lungs because my brain is confused by these healthy things! It's a lot of work, but worth it in the end I know. I'm retraining every muscle in my body because anesthesia has such an effect on the body during a major surgery. Even my throat muscles have to be trained. Not to mention I have 70 staples from arm pit to arm pit. That is one BA scar, lol.
I just want to thank everyone for praying for me during this whole process. This is one of the happiest/hardest/most exciting times of my life and I'm glad to have shared it with all of you. I will try to get on here and write more now that I'm feeling up to it. Hopefully with rehab and medicines I can fit in some blogging! :) Love Yall
At first, everything was pretty overwhelming, but I'm slowly getting used to my new lungs and also learning how to do everything normally again. I have to teach myself how to breathe in these new lungs because my brain is confused by these healthy things! It's a lot of work, but worth it in the end I know. I'm retraining every muscle in my body because anesthesia has such an effect on the body during a major surgery. Even my throat muscles have to be trained. Not to mention I have 70 staples from arm pit to arm pit. That is one BA scar, lol.
I just want to thank everyone for praying for me during this whole process. This is one of the happiest/hardest/most exciting times of my life and I'm glad to have shared it with all of you. I will try to get on here and write more now that I'm feeling up to it. Hopefully with rehab and medicines I can fit in some blogging! :) Love Yall
Wednesday, September 8, 2010
First Call!
Just got my first call tonight! Hopefully, it's the ONLY call. They won't know if everything is a go until about 3 AM, so here i wait :///. I AM SO EXCITED!!! Hopefully next time I blog, I will have new lungs...tata for now!
Friday, September 3, 2010
OFFICIALLY LISTED!!
Well, GREAT NEWS, I have officially been listed on the lung transplant list here at Duke!! YAYYYYYYYY!!!! Now all I have to do is....wait. And continue to get stronger. Today turned out to be really great because my Dad and brother and sister-in-law all came to visit, and then we got the good news! My brain is kind of all over the place right now with tons of different thoughts, but i just wanted to share the good news!!!!!!!!!!
Thursday, September 2, 2010
6 Minute Walk
Today was officially my last test, the 6 minute walk of doom. Nah just kidding, but it was tough. They basically want to see how far you can walk in 6 minutes, i think they like to see around 1000 ft, but the more the better. She said I walked about 1050 ft, which was 3 laps around the unit here. After not walking pretty much at all for a month, except to the bathroom and around the house, I thought I did pretty good, and the docs were happy, so I'm happy. :)
It's weird how something like walking can make you nervous. I was so nervous for this test, like I could fail it or something. A nurse told me recently, "90% of what we worry about doesn't happen, and the other 10% doesn't happen the way you thought it would". I found that especially true today. Not being able to breathe can do funny things to you. I just have to slow down and think, "you HAVE air, you CAN breathe", that usually works. I've been learning a lot of relaxation techniques since I've been here. And I'll admit I thought that stuff was silly, but it really does work. It's amazing how much of our breathing is mental just as much as physical work.
I guess the walk wasn't too bad because I went for another 2 laps about 30 minutes ago, lol. Now I'm watching them GAMECOCKS!!! Could this night get any better? :) Love you all my Clemson fans :)
My Dad and brother and sister-in-law are coming up tomorrow so I am very excited about having some company. I'm glad someone will be here to stay with Mom for a few days. I'm weird about having people visit me when I'm so sick. I'm trying to get over that, haha. Just wanted to write a little update today, thanks for reading :) Love to Everyone :)))))
It's weird how something like walking can make you nervous. I was so nervous for this test, like I could fail it or something. A nurse told me recently, "90% of what we worry about doesn't happen, and the other 10% doesn't happen the way you thought it would". I found that especially true today. Not being able to breathe can do funny things to you. I just have to slow down and think, "you HAVE air, you CAN breathe", that usually works. I've been learning a lot of relaxation techniques since I've been here. And I'll admit I thought that stuff was silly, but it really does work. It's amazing how much of our breathing is mental just as much as physical work.
I guess the walk wasn't too bad because I went for another 2 laps about 30 minutes ago, lol. Now I'm watching them GAMECOCKS!!! Could this night get any better? :) Love you all my Clemson fans :)
My Dad and brother and sister-in-law are coming up tomorrow so I am very excited about having some company. I'm glad someone will be here to stay with Mom for a few days. I'm weird about having people visit me when I'm so sick. I'm trying to get over that, haha. Just wanted to write a little update today, thanks for reading :) Love to Everyone :)))))
Subscribe to:
Posts (Atom)