Hey y'all! I have not been feeling well lately. For the past two weeks I have been coughing up tons of blood. Pure blood with no mucus. By tons, I mean I have been filling up the bottom of a bathroom sink with it. It only happens when I lay down to go to bed. I start feeling a bubbly feeling, almost like a wheeze that is when I know the blood is coming. Then I have to cough and up it comes. I coughed up so much the other day that I could not stop and was actually choking on the blood. It was gross.
SO... my doctor decided that it might be from the Colistin I started, so she took me off of it for a week to see if that helps. She also had me stopped hypertonic saline at night to see if that helps as well.
I went to the doctor Tuesday and it is now Thursday...so after only two nights of not doing Colistin or hypertonic, my lungs are not happy. I can barely breathe. My chest is tight and hurting. I cannot imagine a whole week of this.. To be fair though, the coughing up blood did stop. I almost think I would rather just cough up blood than feel like this. Funny how that is.
If I had continued to cough up blood, my doctor wanted to possibly do a CT scan and a bronch but so far...no blood! I also had an x-ray done.
In other news, my doctor wants my decision about which transplant facility I want to use so they can set up a meeting for me to just talk with them!
Showing posts with label blood. Show all posts
Showing posts with label blood. Show all posts
Thursday, April 24, 2014
Tuesday, March 25, 2014
Why I'm done with Walmart and other ramblings
Hey y'all! So one thing about me is that I eat, a lot, like a lot a lot. You would not be able to tell by looking at me but I could probably out eat any one of you. I am constantly starving and can eat like two grown men. I just cannot seem to gain weight. So the doctor's put me on Periactin which is an appetite stimulant. I am going to go broke just buying food to sustain me. I'll probably eat myself out of a house and home. Did you know periactin is also an antihistamine? Weird right? It makes me a tad tired. I'm also trying to drink at least one scandishake a day to up my weight.
I'm not sure how many of y'all have sinus issues but I have them and they bother the heck out of me. My ENT says to try doing my TOBI and Colistin with a mask to get the antibiotics in my sinuses as well. So maybe that might bee something for y'all to try as well, but of course I'm no doctor. Some of my sinus cavities are getting gross again so I'm also taking a nasal steroid. This will be my first month trying Colistin. Has anyone else used it before? How did y'all like it? I've tried Cayston before but it made me cough up tons of blood so I had to stop using it.
Let me tell y'all one thing about doctor's that just annoys me. You fill out all this paperwork right? You have to write down every single medication you take, then you go back and they ask you the same thing. I'm just always like ugh really and repeat them all over again.
I got to spend the weekend with my boyfriend who I'm ever so thankful for. But....everything went downhill yesterday. I took my car to Wal-Mart (which was my first mistake) to get an old change. It took them 3 and a half hours! There were barely any other costumers there, just one other. I should have expected that I guess. Wal-Mart is the home of 30 something registers and they only open 2 at a time. The oil change cost me $74 which hurt my pockets. I was also told I needed a new battery which is another $105. My poor college kid pockets are getting emptier and emptier. After all that, I go out to my car and it doesn't start. The guy says "well the car won't start because the battery is bad" no really? despite his comment, he brings the jumper cables and a battery out to jump my car off. He hooks the cables to my car, but had the other two cables hooked to the metal cart which promptly started to spark and almost electrocuted him. So I am done with Walmart. I shall find a new place to do my auto care.
Sorry this is kind of a rambling post. I guess y'all are used to that by now though.
I'm not sure how many of y'all have sinus issues but I have them and they bother the heck out of me. My ENT says to try doing my TOBI and Colistin with a mask to get the antibiotics in my sinuses as well. So maybe that might bee something for y'all to try as well, but of course I'm no doctor. Some of my sinus cavities are getting gross again so I'm also taking a nasal steroid. This will be my first month trying Colistin. Has anyone else used it before? How did y'all like it? I've tried Cayston before but it made me cough up tons of blood so I had to stop using it.
Let me tell y'all one thing about doctor's that just annoys me. You fill out all this paperwork right? You have to write down every single medication you take, then you go back and they ask you the same thing. I'm just always like ugh really and repeat them all over again.
I got to spend the weekend with my boyfriend who I'm ever so thankful for. But....everything went downhill yesterday. I took my car to Wal-Mart (which was my first mistake) to get an old change. It took them 3 and a half hours! There were barely any other costumers there, just one other. I should have expected that I guess. Wal-Mart is the home of 30 something registers and they only open 2 at a time. The oil change cost me $74 which hurt my pockets. I was also told I needed a new battery which is another $105. My poor college kid pockets are getting emptier and emptier. After all that, I go out to my car and it doesn't start. The guy says "well the car won't start because the battery is bad" no really? despite his comment, he brings the jumper cables and a battery out to jump my car off. He hooks the cables to my car, but had the other two cables hooked to the metal cart which promptly started to spark and almost electrocuted him. So I am done with Walmart. I shall find a new place to do my auto care.
Sorry this is kind of a rambling post. I guess y'all are used to that by now though.
Monday, February 10, 2014
Well I do declare!
Hey y'all! Good gracious it has been awhile! I've been a busy bee lately. I have been taking my time off of school to do things I'm passionate about: baking and painting canvases!
I have also been running up and down the roads to various doctor's appointments. I had to get my eyes checked for diabetes damage (where the nurse that saw had just came back to work that day after having the flu and all her children had it). She was still sneezing and sniffling all over the place. I also had to see endocrinology where I now have to take a shot every time I eat along with a shot at night. I also have to check my blood sugars four times a day. I feel like a human pin cushion. My fingers are all bruised as well as my stomach from all the poking! But now that my blood sugar is under control I am hoping to maybe gain some weight! I still feel awful so that sucks but I'm not ready to be back on IVs again so suffer I shall.
For all those who have not seen Foreverland and 65_RedRoses, I highly recommend both! They are really good. I must admit I teared up at both of them. They need to make a really great, really popular movie about CF. I think it would give CF more publicity and therefore we would be as well known as cancer. We need to be more proactive at fundraising. I wish CF was as well known as say breast cancer.
Another thing I want to touch on is how CFers can make other CFers feel bad without even knowing. Like for instance I know some CFers who are like "there's no excuse not to get out and do something everyday" "I work out everyday no matter how sick I am" "I eat so healthy and now I don't have to take any medications." Sorry y'all but shut up. Some CFers can get offended. Sometimes it's a struggle to pull yourself out of bed. Hell, sometimes it's a struggle just to breathe. Some people just cannot get up and work out everyday. So saying there's no excuse makes them feel like there is something wrong with them and that they are lazy. Also some people do not have as severe cases of CF. If you don't have to do treatments or take enzymes or have diabetes too, good for you. You are blessed. Not others are as blessed. As CFers we should embrace other CFers because who knows better what they have to go through. I found a quote recently that I really love. It goes:
"You are not obligated to do everything a healthy person does. You are not obligated to be an inspiration. You are not obligated to hide your illness in order to make other people comfortable. You are allowed to know your limits. You are allowed to have bad days. You are allowed to stay in bed if you can’t get up to do anything but go to the bathroom. It is not your fault if other people leave you because of your illness. It is not your fault that you are sick. You don’t have to apologize for something that is out of your control." -unknown
I really do love this.
I have also been running up and down the roads to various doctor's appointments. I had to get my eyes checked for diabetes damage (where the nurse that saw had just came back to work that day after having the flu and all her children had it). She was still sneezing and sniffling all over the place. I also had to see endocrinology where I now have to take a shot every time I eat along with a shot at night. I also have to check my blood sugars four times a day. I feel like a human pin cushion. My fingers are all bruised as well as my stomach from all the poking! But now that my blood sugar is under control I am hoping to maybe gain some weight! I still feel awful so that sucks but I'm not ready to be back on IVs again so suffer I shall.
For all those who have not seen Foreverland and 65_RedRoses, I highly recommend both! They are really good. I must admit I teared up at both of them. They need to make a really great, really popular movie about CF. I think it would give CF more publicity and therefore we would be as well known as cancer. We need to be more proactive at fundraising. I wish CF was as well known as say breast cancer.
Another thing I want to touch on is how CFers can make other CFers feel bad without even knowing. Like for instance I know some CFers who are like "there's no excuse not to get out and do something everyday" "I work out everyday no matter how sick I am" "I eat so healthy and now I don't have to take any medications." Sorry y'all but shut up. Some CFers can get offended. Sometimes it's a struggle to pull yourself out of bed. Hell, sometimes it's a struggle just to breathe. Some people just cannot get up and work out everyday. So saying there's no excuse makes them feel like there is something wrong with them and that they are lazy. Also some people do not have as severe cases of CF. If you don't have to do treatments or take enzymes or have diabetes too, good for you. You are blessed. Not others are as blessed. As CFers we should embrace other CFers because who knows better what they have to go through. I found a quote recently that I really love. It goes:
"You are not obligated to do everything a healthy person does. You are not obligated to be an inspiration. You are not obligated to hide your illness in order to make other people comfortable. You are allowed to know your limits. You are allowed to have bad days. You are allowed to stay in bed if you can’t get up to do anything but go to the bathroom. It is not your fault if other people leave you because of your illness. It is not your fault that you are sick. You don’t have to apologize for something that is out of your control." -unknown
I really do love this.
Monday, January 13, 2014
Calling all Cysters and Fibros
Hey y'all! I'm currently writing this blog via my iPhone so please forgive me if I make some mistakes. My apartment does not have internet anymore. Anyways!!!! I have never really got to know anyone with CF. So I'm calling for all my Cysters and Fibros! I want some CF friends. It's nice to be able to have people who actually understand. If I try to talk to my friends about things, they can get uncomfortable or can't fully understand. Sometimes I tend to have a dark sense of humor and I also like to openly talk about things others feel are scary, like dying and stuff of that nature. I need people I can talk to, people who understand! I'm fun, at least I think so. I just want to make some new friends with CF. So come on!!!
On another note, my endocrinologist has put me on 10 units of lantus at night but when I take it my blood sugar drops too low. Anyone else have this problem?
On another note, my endocrinologist has put me on 10 units of lantus at night but when I take it my blood sugar drops too low. Anyone else have this problem?
Sunday, January 12, 2014
Taking a semester off
I know I promised to be more of a blogger last year and I was a failure of epic proportions. This year will be different. I will have more time to blog. I am taking the semester off of school! This was a decision I deliberated on for weeks and weeks. I am still not completely happy with it but I know it is probably for the best.
*Flashback to last semester*
I was sick as could be and managed to get 3 PICC lines in four months. My FEV1 dipped to 22%. Despite all of this, I managed to not miss any class. I prided myself on being in class no matter how sick I was. I am an early childhood education major so I worked in a school this past semester with kindergartners. As much as I loved my kinderbabies, they made me so sick. One week I could not even talk because I had coughed so much that I messed my throat up. I even spent a weekend in the hospital and got out just in time to be at my practicum school on Monday to teach my kinderbabies. School and my kinders were the most important things to me. My health fell by the wayside. My parents and doctors both urged me to put my health first but my stubborn 20 year old self had my eyes on the prize- a college degree.
*Back to now*
My health has declined once more. My chest is heavy and I can barely breathe. I have had massive cough attacks. I cannot taste or smell anything. Every night since New Year's Eve, I have coughed up copious amounts of blood. My FEV1 was at 32% and I had lost four pounds. My doctor decided it was time for another hospitalization. My doctor also thought getting a port was the best thing to do. Now I am a pretty skinny girl. I am only 5'2 and weigh a whopping 82 pounds. My main concern as a 20 year old female was how the port would make me look and how much it would stick out.
So I was hospitalized. The first night they stuck me four times before the nurses could finally successfully start an IV. That night should have signaled to me that this visit would be bad. I was stuck over 20 times within 6 days. I just seemed to get stuck with nurses that could not draw blood or start IVs. New nurses I am assuming but hey, they have to learn at some point. Lucky for them they got to practice on me and not someone who screams and cries at the sight of a needle. Then Monday I was wheeled down and put to sleep and my port was placed. Now I am not going to lie, so far I hate it. It sticks out and looks hideous. But hopefully one it heals I will like it more. I am finally out of the hospital. I am still in lots of pain from the port. I feel even worse than before I went into the hospital.
School starts Monday. It feels weird to not be starting. I have been going to school since kindergarten with no breaks except summers. I feel lazy. I know I need to take this time to focus on my health. It is the most important, especially when my doctors are talking of sending me to talk to the transplant people. I just wish I did not feel like I was taking the easy way out. I need to find something to fill my time this semester between appointments and treatments. Blogging will probably be my saving grace to keep me from going crazy.
*Flashback to last semester*
I was sick as could be and managed to get 3 PICC lines in four months. My FEV1 dipped to 22%. Despite all of this, I managed to not miss any class. I prided myself on being in class no matter how sick I was. I am an early childhood education major so I worked in a school this past semester with kindergartners. As much as I loved my kinderbabies, they made me so sick. One week I could not even talk because I had coughed so much that I messed my throat up. I even spent a weekend in the hospital and got out just in time to be at my practicum school on Monday to teach my kinderbabies. School and my kinders were the most important things to me. My health fell by the wayside. My parents and doctors both urged me to put my health first but my stubborn 20 year old self had my eyes on the prize- a college degree.
*Back to now*
My health has declined once more. My chest is heavy and I can barely breathe. I have had massive cough attacks. I cannot taste or smell anything. Every night since New Year's Eve, I have coughed up copious amounts of blood. My FEV1 was at 32% and I had lost four pounds. My doctor decided it was time for another hospitalization. My doctor also thought getting a port was the best thing to do. Now I am a pretty skinny girl. I am only 5'2 and weigh a whopping 82 pounds. My main concern as a 20 year old female was how the port would make me look and how much it would stick out.
So I was hospitalized. The first night they stuck me four times before the nurses could finally successfully start an IV. That night should have signaled to me that this visit would be bad. I was stuck over 20 times within 6 days. I just seemed to get stuck with nurses that could not draw blood or start IVs. New nurses I am assuming but hey, they have to learn at some point. Lucky for them they got to practice on me and not someone who screams and cries at the sight of a needle. Then Monday I was wheeled down and put to sleep and my port was placed. Now I am not going to lie, so far I hate it. It sticks out and looks hideous. But hopefully one it heals I will like it more. I am finally out of the hospital. I am still in lots of pain from the port. I feel even worse than before I went into the hospital.
School starts Monday. It feels weird to not be starting. I have been going to school since kindergarten with no breaks except summers. I feel lazy. I know I need to take this time to focus on my health. It is the most important, especially when my doctors are talking of sending me to talk to the transplant people. I just wish I did not feel like I was taking the easy way out. I need to find something to fill my time this semester between appointments and treatments. Blogging will probably be my saving grace to keep me from going crazy.
Monday, October 15, 2012
Decisions, Decisions
My internal debate about my future career is raging once again. By the end of my spring semester I have to officially declare my major and start in on those career specific classes. When I went into college I knew exactly what I wanted to be: a kindergarten teacher. After a horrible education related class I had my doubts. So after that so many options bounced around in my mind. I'm currently majoring in nursing, but I transferred and lost a lot of credits so I'm pretty far behind. I thought I would enjoy being a school nurse but one night after watching my little sister wiggle her not so loose tooth so violently that it came out along with tons of blood, I changed my mind. Now I know what most of you are thinking: I have CF so it seems like I should be used to the blood and nasty things that go along with the medical field. I am, but seeing my blood or watching somebody give me an IV or even a PICC procedure is different. I'm totally comfortable with it. I'm not so sure I'd be as comfortable doing it to someone else. Plus as much as I go into the hospital the medical field should be the last thing I want to work in.
Anyway back to my career battle. So then I thought about how I love to bake, I really do love it. I wanted to go to culinary school for baking and pastry. Every time I think of a career my dad usually tells me how that career might not be a good fit for me with my CF. For instance, being around sick kids, being around sick patients, and coughing constantly around food. I get his point, my lung functions definitely are not very good for my young age of 19 years old. I was around the 50s in May. I have not been able to go back to the doctor's yet because I lost health insurance once I turned 19. Still its discouraging to say the least. I have no idea what to do. What if all I want to do in life is get married and then be a stay at home mom? Is that really so bad? I cannot honestly think of any degree that I would love to have. Should I finish my early childhood degree. Should I go to culinary school? Should I just jump right in and try to start my bakery? I know I want degree whether I use it or not. Decisions, decisions.
Anyway back to my career battle. So then I thought about how I love to bake, I really do love it. I wanted to go to culinary school for baking and pastry. Every time I think of a career my dad usually tells me how that career might not be a good fit for me with my CF. For instance, being around sick kids, being around sick patients, and coughing constantly around food. I get his point, my lung functions definitely are not very good for my young age of 19 years old. I was around the 50s in May. I have not been able to go back to the doctor's yet because I lost health insurance once I turned 19. Still its discouraging to say the least. I have no idea what to do. What if all I want to do in life is get married and then be a stay at home mom? Is that really so bad? I cannot honestly think of any degree that I would love to have. Should I finish my early childhood degree. Should I go to culinary school? Should I just jump right in and try to start my bakery? I know I want degree whether I use it or not. Decisions, decisions.
Subscribe to:
Posts (Atom)