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! :)
Monday, October 18, 2010
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 :)))))
Tuesday, August 31, 2010
God is GOOD!
Today was a really good day! I had been wanting to get up walk around with the physical therapist and they finally thought I was up to it, so I did a lap around the unit! I was so happy because I didn't think I'd make it two steps out the door. They put that oxygen mask on me and we cranked that puppy up and off I went. I cannot describe how good it felt to be walking around again, I seriously think I was smiling the whole time, people think I'm crazy I'm sure. Before I went walking one of the nurses brought me a little pedal bike you put on the floor and just use your feet, I was even able to do that for 10 minutes without stopping, which I was proud of.
After that they came and got me for PFT which is a pretty rigorous breathing test, especially when you feel like poop. They needed my scores for the evaluation. I actually did a lot better than I expected to. My baseline has been about 40% lately and today it was only 33%. Which, don't get me wrong, is pretty terrible, but considering how I've been feeling lately I thought it was going to be a 2%. When I got back to the room and rested a minute, I told mom I felt like showering (I am not going to tell you how long it was since I had a shower, it's a little embarrassing). So that felt AMAZING! You don't know how much you appreciate little things like that until you can't or don't feel like doing them.
The transplant committee also meets on Tuesdays, so the docs said they were talking about me. He was saying that we always have the option of transplanting me from the hospital, instead of discharging me and then having to come back. It's all depending on how I do though. I think things are looking up, and I am definitely getting stronger every day! I'll be in rehab in no time!!
Just wanted to write a little update today, thanks so much everyone for reading and for your nice comments, it really means a lot to me. Thank you as well for the thoughts and prayers they also mean more than you know, and they are WORKING!! GOD IS GOOD!!!!!!
After that they came and got me for PFT which is a pretty rigorous breathing test, especially when you feel like poop. They needed my scores for the evaluation. I actually did a lot better than I expected to. My baseline has been about 40% lately and today it was only 33%. Which, don't get me wrong, is pretty terrible, but considering how I've been feeling lately I thought it was going to be a 2%. When I got back to the room and rested a minute, I told mom I felt like showering (I am not going to tell you how long it was since I had a shower, it's a little embarrassing). So that felt AMAZING! You don't know how much you appreciate little things like that until you can't or don't feel like doing them.
The transplant committee also meets on Tuesdays, so the docs said they were talking about me. He was saying that we always have the option of transplanting me from the hospital, instead of discharging me and then having to come back. It's all depending on how I do though. I think things are looking up, and I am definitely getting stronger every day! I'll be in rehab in no time!!
Just wanted to write a little update today, thanks so much everyone for reading and for your nice comments, it really means a lot to me. Thank you as well for the thoughts and prayers they also mean more than you know, and they are WORKING!! GOD IS GOOD!!!!!!
Saturday, August 28, 2010
Officially Moved to NC
Today, Mom and I became official residents of North Carolina. Mom got all the stuff moved out of the hotel we were staying in and in to our new place about 10 miles from the hospital. She says I'm really going to like it because it's around a lot of good shopping, haha.
I can't wait to get this current exacerbation behind me so I can get up and move around! I just felt really short of breath today and actually wore my Bipap all day long. One major step forward though, no pain today, only took tylenol for a headache..so the meds are starting to work!
I am actually excited to go to Pulmonary Rehab (SCARY, I know). It might be hard and they might have to crank that oxygen up to 25 liters but I know it is all for something GREAT in the end! Just getting tired of sitting here in this old bed watching everyone else walk the halls...
I don't have any tests planned for over the weekend, the plan was just to rest up. I did have a ABG today (successful after 3 tries :( ). ANYWAYS, I just figured I'd write a little something since I somewhat felt like it today. Thanks for reading and continued prayers and support, they mean so much :)
I can't wait to get this current exacerbation behind me so I can get up and move around! I just felt really short of breath today and actually wore my Bipap all day long. One major step forward though, no pain today, only took tylenol for a headache..so the meds are starting to work!
I am actually excited to go to Pulmonary Rehab (SCARY, I know). It might be hard and they might have to crank that oxygen up to 25 liters but I know it is all for something GREAT in the end! Just getting tired of sitting here in this old bed watching everyone else walk the halls...
I don't have any tests planned for over the weekend, the plan was just to rest up. I did have a ABG today (successful after 3 tries :( ). ANYWAYS, I just figured I'd write a little something since I somewhat felt like it today. Thanks for reading and continued prayers and support, they mean so much :)
Thursday, August 26, 2010
Eval Update
Ok, so I have been very slack about keeping this updated this week. Mostly because wireless would NOT work in the hotel. grrrr.
The first day of eval went fine. Got some blood drawn (23 tubes) out of my port :) X-ray, EKG, and the heart cath meeting. Nothing too exciting that first day. But I did start to notice my shortness of breath and pain level were getting worse. I just thought it was stress due to the rigorous schedule.
So Tuesday after getting absolutely no sleep the night before being up all night from pain we called the coordinator to see if we could reschedule that morning's test for later in the day until I could manage my pain and breath somewhat comfortably. Let's just say by Wednesday I was not doing good at all. Luckily, I had my meeting with the Transplant Doc that morning and he decided he wanted to go ahead and admit me here at Duke for an exacerbation.
I am still completing the tests for transplant as an inpatient. Right now we are just focused on getting me better. Leave it to me to have an exacerbation during the most important hospital visit of my life, haha! I know I am in a great place though and they are taking wonderful care of me.
The transplant doc also came in this morning and said that he doesn't want me to go back home after this hospitalization. He says it is time for mom and I to relocate, start rehab, and get on the list. Which is really exciting!! But also I'm focused on just getting better right now! I couldn't be more pleased with the way things went and are still going this week. I know Duke is the place for me to get transplanted, I can feel it. The docs I've met so far are really great and the program here seems to be really great as well.
I will try my best to keep this thing updated now that I have Internet in my hospital room. But all in all, everything is right on track for new lungs soon :)
The first day of eval went fine. Got some blood drawn (23 tubes) out of my port :) X-ray, EKG, and the heart cath meeting. Nothing too exciting that first day. But I did start to notice my shortness of breath and pain level were getting worse. I just thought it was stress due to the rigorous schedule.
So Tuesday after getting absolutely no sleep the night before being up all night from pain we called the coordinator to see if we could reschedule that morning's test for later in the day until I could manage my pain and breath somewhat comfortably. Let's just say by Wednesday I was not doing good at all. Luckily, I had my meeting with the Transplant Doc that morning and he decided he wanted to go ahead and admit me here at Duke for an exacerbation.
I am still completing the tests for transplant as an inpatient. Right now we are just focused on getting me better. Leave it to me to have an exacerbation during the most important hospital visit of my life, haha! I know I am in a great place though and they are taking wonderful care of me.
The transplant doc also came in this morning and said that he doesn't want me to go back home after this hospitalization. He says it is time for mom and I to relocate, start rehab, and get on the list. Which is really exciting!! But also I'm focused on just getting better right now! I couldn't be more pleased with the way things went and are still going this week. I know Duke is the place for me to get transplanted, I can feel it. The docs I've met so far are really great and the program here seems to be really great as well.
I will try my best to keep this thing updated now that I have Internet in my hospital room. But all in all, everything is right on track for new lungs soon :)
Friday, August 20, 2010
MUSC Visit
So, Mom and I went to MUSC yesterday for our transplant visit just to touch base with the docs and make sure we are on the same page before I head up to Duke for the evaluation. Everything went well. I kind of thought they were going to try and talk me out of going to Duke, just because they don't want to lose a patient, but they really didn't at all. They are all for me going and having the evaluation done there while they are still waiting for certification down here.
They can still use all the results from the tests I get done at Duke. I'm just really glad because I know that if something happens and Duke does not want to list me, MUSC will. They are hoping to be certified by the end of this month and then to have everything cleared up with insurance companies by September! I am still excited about my trip up to Duke and I am very interested to see what they say about my situation and if they think I'm ready.
My doctor basically said, "Whoever gets lungs for you first, should be where you go". And that makes me very happy to hear that. I couldn't agree more.
They can still use all the results from the tests I get done at Duke. I'm just really glad because I know that if something happens and Duke does not want to list me, MUSC will. They are hoping to be certified by the end of this month and then to have everything cleared up with insurance companies by September! I am still excited about my trip up to Duke and I am very interested to see what they say about my situation and if they think I'm ready.
My doctor basically said, "Whoever gets lungs for you first, should be where you go". And that makes me very happy to hear that. I couldn't agree more.
Wednesday, August 18, 2010
Bittersweet Day
Well, today was an interesting day. I finished up IV antibiotics after three weeks, so that was a good thing. But today also marks the 8 year anniversary of my brother's death. I cannot believe it has been that long ago. I was in the 9th grade when it happened, and to think of how all of our lives have changed since then is amazing. I guess I think about him more now since I'm starting my journey towards transplant, and that is where his life ended.
My brother was very sick, and like I said before we had always received our care at UNC Chapel Hill, so naturally when the time came for him to be evaluated for a transplant, it was done at UNC-no big deal. Well, little did my parents know that he would sit on the waiting list for over 2 years. We all know what 2 years can do in a CFers life and to their lungs. Let's just say it did not help the situation. Realizing that he was declining very quickly, the option was brought to my parents attention that they could do the living donor operation at Duke. My parents were very excited and so they went for appointments and evals right away. When they got to Duke the transplant doctor was horrified that my brother had been on a waiting list for lungs for 2 years. He said, "We get his blood type all the time". He had my brother listed at Duke right away. Six weeks later, my brother got a call.
They drove up as fast as they could and found out the operation was a go. Needless to say, he didn't survive the operation. We found out later he had a heart attack before they even opened up his chest. He also suffered a brain hemorrhage which damaged his brain beyond recovery and life support was removed a few days later.
So, you can see where my family and I might have some hesitations with the whole transplant process. Although, I completely understand that what happened to my brother was a freak accident and he was just too weak to survive the operation. We are making sure that doesn't happen this time around. No waiting 2 years when you could only have to wait 6 weeks. Hindsight is 20/20 and it really sucks that we didn't know better when my brother was still here. But, you trust your doctors, and you don't ever think that they would let you sit on a waiting list, gradually getting sicker and sicker, while healthy lungs are waiting on you at another hospital right down the road. Was it competition? money? I guess it doesn't matter. But it still hurts and makes you wonder sometimes.
I tried to spend most of my down time today thinking about his life and the fun things we did when he was here. We were only a year and a week apart, so we did a lot together. Sharing a disease made it easier too I guess. I know he would want me to get a transplant. I have no doubts at all about that. And I guess part of the reason I want one so bad and want it to be successful, is for him. I want to do everything that he never got to do in his short life, and do it with the healthy lungs that he deserved.
Breathe Easy My Sweet Baby Brother Forever and Always
06-14-87 -- 08-18-02
My brother was very sick, and like I said before we had always received our care at UNC Chapel Hill, so naturally when the time came for him to be evaluated for a transplant, it was done at UNC-no big deal. Well, little did my parents know that he would sit on the waiting list for over 2 years. We all know what 2 years can do in a CFers life and to their lungs. Let's just say it did not help the situation. Realizing that he was declining very quickly, the option was brought to my parents attention that they could do the living donor operation at Duke. My parents were very excited and so they went for appointments and evals right away. When they got to Duke the transplant doctor was horrified that my brother had been on a waiting list for lungs for 2 years. He said, "We get his blood type all the time". He had my brother listed at Duke right away. Six weeks later, my brother got a call.
They drove up as fast as they could and found out the operation was a go. Needless to say, he didn't survive the operation. We found out later he had a heart attack before they even opened up his chest. He also suffered a brain hemorrhage which damaged his brain beyond recovery and life support was removed a few days later.
So, you can see where my family and I might have some hesitations with the whole transplant process. Although, I completely understand that what happened to my brother was a freak accident and he was just too weak to survive the operation. We are making sure that doesn't happen this time around. No waiting 2 years when you could only have to wait 6 weeks. Hindsight is 20/20 and it really sucks that we didn't know better when my brother was still here. But, you trust your doctors, and you don't ever think that they would let you sit on a waiting list, gradually getting sicker and sicker, while healthy lungs are waiting on you at another hospital right down the road. Was it competition? money? I guess it doesn't matter. But it still hurts and makes you wonder sometimes.
I tried to spend most of my down time today thinking about his life and the fun things we did when he was here. We were only a year and a week apart, so we did a lot together. Sharing a disease made it easier too I guess. I know he would want me to get a transplant. I have no doubts at all about that. And I guess part of the reason I want one so bad and want it to be successful, is for him. I want to do everything that he never got to do in his short life, and do it with the healthy lungs that he deserved.
Breathe Easy My Sweet Baby Brother Forever and Always
06-14-87 -- 08-18-02
Monday, August 16, 2010
First Post
So, I've noticed that a lot of people start blogging when they are about to go through transplant to keep a record of what is going on and also to keep friends and family updated. I figured I'd join them.
I guess a little history about me, I'm 22 and live in South Carolina. I completed college up until my last semester and had to withdraw for lovely health reasons. My major was Chemistry and Biology with a concentration in Forensic Science (Obviously, I love torture). I now live back at home with my parents, which takes some getting used to after being on my own for 4 years, but they are great. I have three older brothers. One who passed away when he was 15 in 2002. We were the only 2 with CF. My two older brothers are very successful, college graduates and one is a cop, the other is married and in the Navy.
Before I got so sick I loved being up at school, living in my apartment with my boyfriend and our three babies (2 little pup pups and a kitty). He is still up at school, and has one more year to go. It's really hard being away from him after we spent so much time together. We will have been together 3 years this month! He is very supportive and tries his best not to worry, but you know how that is. I honestly couldn't ask for anyone better.
I currently recieve treatment for my CF at MUSC in Charleston, but they do not currently have a transplant program. That is why I am going to Duke for my evaluation. MUSC is actually in the process of getting their program certified, and there were talks of me being the first transplantee there, but time is starting to become an issue for me.
I recieved care at UNC Chapel Hill up until I was about 14, when my brother died. LONG STORY, details later. So, going back to NC won't be that big of a deal, just going to Dukie might be kind of weird for me. I can't help it, I'll always be a Tarheel.
Other than having a million questions and being slightly terrified but also extremely excited about transplant, I think I'm handling it pretty well. I don't know if anyone is going to read this blog, and that's ok. I guess I'm doing it more for myself and my own sanity more than anything. But, your advice and comments are certainly welcome and I appreciate any thing you might have to offer.
I guess this will do for a first blog, I will have to write more when I'm not trying to be so quiet because everyone is my house in asleep. Why I waited until 12:22 AM to start this, I don't know. Hmmm gotta love that prednisone :)
I guess a little history about me, I'm 22 and live in South Carolina. I completed college up until my last semester and had to withdraw for lovely health reasons. My major was Chemistry and Biology with a concentration in Forensic Science (Obviously, I love torture). I now live back at home with my parents, which takes some getting used to after being on my own for 4 years, but they are great. I have three older brothers. One who passed away when he was 15 in 2002. We were the only 2 with CF. My two older brothers are very successful, college graduates and one is a cop, the other is married and in the Navy.
Before I got so sick I loved being up at school, living in my apartment with my boyfriend and our three babies (2 little pup pups and a kitty). He is still up at school, and has one more year to go. It's really hard being away from him after we spent so much time together. We will have been together 3 years this month! He is very supportive and tries his best not to worry, but you know how that is. I honestly couldn't ask for anyone better.
I currently recieve treatment for my CF at MUSC in Charleston, but they do not currently have a transplant program. That is why I am going to Duke for my evaluation. MUSC is actually in the process of getting their program certified, and there were talks of me being the first transplantee there, but time is starting to become an issue for me.
I recieved care at UNC Chapel Hill up until I was about 14, when my brother died. LONG STORY, details later. So, going back to NC won't be that big of a deal, just going to Dukie might be kind of weird for me. I can't help it, I'll always be a Tarheel.
Other than having a million questions and being slightly terrified but also extremely excited about transplant, I think I'm handling it pretty well. I don't know if anyone is going to read this blog, and that's ok. I guess I'm doing it more for myself and my own sanity more than anything. But, your advice and comments are certainly welcome and I appreciate any thing you might have to offer.
I guess this will do for a first blog, I will have to write more when I'm not trying to be so quiet because everyone is my house in asleep. Why I waited until 12:22 AM to start this, I don't know. Hmmm gotta love that prednisone :)
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