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!!!!!!
Tuesday, August 31, 2010
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 :)
Subscribe to:
Posts (Atom)