Hi guys!
So hell week is over and I am back home! I decided to try something new this time around....I made a video of my hell week experience. Head on over to my youtube channel to check it out! So far I have part 1 up but stay tuned for the rest as I will be getting that up soon. For those of you wanting a more traditional experience (is blogging even traditional? Maybe truly traditional would be coming over to my house and asking me about it. I'm down for that! Come on over!) you can read my first experience through hell week here. For hell week 2.0 go here.
I'd love to hear your thoughts on the changes, feel free to comment here or on youtube. I hope you enjoy it!
I also would like to do a Q&A video so send me any questions you might have, seriously ANY question, transplant or health related or not, if you want to know it, ASK IT!
Until next time!
Showing posts with label Cystic Fibrosis. Show all posts
Showing posts with label Cystic Fibrosis. Show all posts
Wednesday, February 13, 2019
Thursday, January 24, 2019
Stunt Doubles Wanted
Hello blogollowers,
Its that time again: Update Time! Things have been pretty quiet the past few weeks as far as my medical journey goes which has been a nice little break. I finished my Rituxan treatment about two weeks ago and do not go to Duke again until next week. I have however been pretty busy especially for a person who sleeps about 18 hours a day.
What have I been doing? Traveling of course! Two weeks ago I got the opportunity to spend time with my stepmom and some of her family in Portland. It was a lot of fun and a nice change of pace. From there I flew to Phoenix to work on packing up my apartment as I am officially moving. While in Phoenix I went to a tiny home show and got to look at several tiny houses. I am currently in the process of planning my own tiny house, but that is a topic for another day. It was fun to see the houses and get a better feel for them, it also helped to inspire me to get rid of a lot of my stuff while I was packing. Nothing like picturing yourself living in 200sq to get you to cut back on stuff.
After Phoenix I got the opportunity to go to Florida for a few days with my mom and some of her family. It was super nice to be in warm places for a week and finally thaw out a bit. I am not used to this cold Colorado weather anymore.
I had a good time on all my travels and it was nice to have something to do. It also helped me to feel better getting out of the house and being a little more active. When I am home I do not do a whole lot, I can definitely tell that my energy level is greatly reduced and I end up having to nap about half the day.
Next week is the big week. I will be flying off to Duke this weekend and will be out there for the next week and a half. I am most definitely not looking forward to it. The tests I am having to do are not my most favorite thing in the world. The worst offenders are the Barium Swallow and Manometry test. Both of these tests have to do with the digestive system and as we have previously discussed, this system and I are not really friends, so it is only fitting that it would have the worst tests. Though, the badness of these tests has nothing to do with my silly digestive system, they are just plain unpleasant. The first test, the barium swallow, involves drinking a thick, chalky, artificially sweetened, radioactive concoction while pictures of it moving through my system are taken. It wouldn't be so bad except that my body rebells against drinking something radioactive which makes for a very unpleasant time while I try to force more of it back in.
Then there is the manometry testing. This test involves having asmall large tube shoved in your nose and down into your stomach. Its kinda like that whole noodle trick only the "noodle" is the worlds longest piece of rigatoni and nobody is laughing. After that fun a more reasonable noodle size tube is placed. What this one lacks in size it gains in time as it stays there for 24 hours.
I am currently taking applications on stunt doubles for these two tests. Any takers?
Besides these fun ones the rest should be a walk in the park, a few IVs and some minor procedures but nothing terribly unpleasant. Hopefully not too long after all this testing we will get the verdict. Am I a candidate for a second transplant and when? I do not feel that sick and am not on oxygen so I am thinking it may not be time. On the other hand I have lost a lot of function and do not have much more to go. I also do not want to have to do these tests again. I also kinda want to get this over with and get out of the limbo state I currently find myself in. I am thankful that God is in control and that his plan is good. I can stay in that in the midst of all this uncertainty and have peace that most of these decisions will be made for me!
Until next time!
Get out there and live while you can!
Its that time again: Update Time! Things have been pretty quiet the past few weeks as far as my medical journey goes which has been a nice little break. I finished my Rituxan treatment about two weeks ago and do not go to Duke again until next week. I have however been pretty busy especially for a person who sleeps about 18 hours a day.
What have I been doing? Traveling of course! Two weeks ago I got the opportunity to spend time with my stepmom and some of her family in Portland. It was a lot of fun and a nice change of pace. From there I flew to Phoenix to work on packing up my apartment as I am officially moving. While in Phoenix I went to a tiny home show and got to look at several tiny houses. I am currently in the process of planning my own tiny house, but that is a topic for another day. It was fun to see the houses and get a better feel for them, it also helped to inspire me to get rid of a lot of my stuff while I was packing. Nothing like picturing yourself living in 200sq to get you to cut back on stuff.
After Phoenix I got the opportunity to go to Florida for a few days with my mom and some of her family. It was super nice to be in warm places for a week and finally thaw out a bit. I am not used to this cold Colorado weather anymore.
I had a good time on all my travels and it was nice to have something to do. It also helped me to feel better getting out of the house and being a little more active. When I am home I do not do a whole lot, I can definitely tell that my energy level is greatly reduced and I end up having to nap about half the day.
Next week is the big week. I will be flying off to Duke this weekend and will be out there for the next week and a half. I am most definitely not looking forward to it. The tests I am having to do are not my most favorite thing in the world. The worst offenders are the Barium Swallow and Manometry test. Both of these tests have to do with the digestive system and as we have previously discussed, this system and I are not really friends, so it is only fitting that it would have the worst tests. Though, the badness of these tests has nothing to do with my silly digestive system, they are just plain unpleasant. The first test, the barium swallow, involves drinking a thick, chalky, artificially sweetened, radioactive concoction while pictures of it moving through my system are taken. It wouldn't be so bad except that my body rebells against drinking something radioactive which makes for a very unpleasant time while I try to force more of it back in.
Then there is the manometry testing. This test involves having a
I am currently taking applications on stunt doubles for these two tests. Any takers?
Besides these fun ones the rest should be a walk in the park, a few IVs and some minor procedures but nothing terribly unpleasant. Hopefully not too long after all this testing we will get the verdict. Am I a candidate for a second transplant and when? I do not feel that sick and am not on oxygen so I am thinking it may not be time. On the other hand I have lost a lot of function and do not have much more to go. I also do not want to have to do these tests again. I also kinda want to get this over with and get out of the limbo state I currently find myself in. I am thankful that God is in control and that his plan is good. I can stay in that in the midst of all this uncertainty and have peace that most of these decisions will be made for me!
Until next time!
Get out there and live while you can!
Thursday, September 18, 2014
A letter to the Show Biz Peeps
Dear creators of Red Band Society,
I watched the show and I was kept entertained. It has a fun group of characters and is interesting to watch. I also agree with the message that you can still have fun and be happy despite having an illness. However it is completely unrealistic and that is a huge problem.
Please make your show realistic or please take it off the air. As a Cystic Fibrosis and Cancer patient, who has also been kept in a coma after my lung transplant, and who as a child stayed on the same floor as (and even sometimes shared a bathroom with) the eating disorder patients I beg you to make a change. You are doing a huge disservice to the medical community especial that of Cystic Fibrosis(CF).
Cystic fibrosis is a disease that does not get a lot of air time. The CF community has been very excited about what this show could mean for us. Unfortunately I do not think anyone thought it would be bad, but it is. Before CF was brought into the main stream when I told people I had cf they would be curious and ask what it was. I then would have an opportunity to educate them on this horrible childhood disease. However, since the show people have heard of CF and think they know what it is. Well thanks to the poor portrayal people will now assume it's not really a big deal, I mean Dash seems fine and he's at his worst since he's in a hospital, right? Wrong so very very wrong.
Having CF is horrible, you can't breath, you can hardly eat and you certainly aren't running around a hospital stealing cars and throwing helicopter pad parties. If you are one of the "lucky" cfers to not have bad symptoms, you aren't in a hospital. A real cfer in the hospital is weak, very thin, tired, struggling to breath and has a productive cough pretty much all the time. Most are also on oxygen and all are on iv medications around the clock. We have what is called a PICC line inserted in our arms for medication or a port if our hospital stays are long enough. Hospitalized cfers also do neublizer treatments, which was shown slightly, and vest treatments several times a day, 4 in my case, these treatments can last an hour or more and are given by respiratory therapists. Many of us also have feeding tubes and are fed a special formula by a pump at night to help us gain weight (like I said we are super skinny). In most cases hospitals have strict infection control rules for CF patients we are often not aloud to leave our room and in the cases where patients can leave they definitely must be wearing a mask. This goes for cancer patients as well. Both of these diseases allow a person to catch illnesses easily, cancer from the chemo and CF from all the mucous in the lungs, and hospital are basically one giant petri dish.
I understand what this world (hospital life) is like and I know it would not make very good tv. That being said it is still possible to have an entertaining show while portraying some realistic aspects of the disease. First of all the patients need to dress down a little bit, this is not high school, it's a hospital. We don't do our hair or wear make-up and nice clothes. More like hospital gowns, pajamas and sweats and a messy pony tail (if we have hair, I now where hats!). Yes we hospital kids often decorate our rooms but not as excessively as the one on the show. Coma kids are definitely in a hospital gown and hooked up to a few more monitors. Also hospital patients are there for a reason, meaning they get treatment, ivs, oral medications, monitoring vitals etc. And last but not least (and probably not really the last problem either) Sick kids wear masks, kids who can get sick easily also wear masks.
So please help all of the children who actually live in hospitals by portraying their life a little more accurately. Without some changes kids will be jealous of those of us who "get" to go to the hospital. Having a chronic illness is nothing to be jealous of.
Thank you Very Much,
Anna the lemon
Cystic Fibrosis, Lung Transplant, Diabetes and Lymphoma
P.S. Leo's eyebrows are pretty much the bushiest eyebrows I've ever seen. If he is that bald on his head you bet his eyebrows are at least somewhat thinned.
I watched the show and I was kept entertained. It has a fun group of characters and is interesting to watch. I also agree with the message that you can still have fun and be happy despite having an illness. However it is completely unrealistic and that is a huge problem.
Please make your show realistic or please take it off the air. As a Cystic Fibrosis and Cancer patient, who has also been kept in a coma after my lung transplant, and who as a child stayed on the same floor as (and even sometimes shared a bathroom with) the eating disorder patients I beg you to make a change. You are doing a huge disservice to the medical community especial that of Cystic Fibrosis(CF).
Cystic fibrosis is a disease that does not get a lot of air time. The CF community has been very excited about what this show could mean for us. Unfortunately I do not think anyone thought it would be bad, but it is. Before CF was brought into the main stream when I told people I had cf they would be curious and ask what it was. I then would have an opportunity to educate them on this horrible childhood disease. However, since the show people have heard of CF and think they know what it is. Well thanks to the poor portrayal people will now assume it's not really a big deal, I mean Dash seems fine and he's at his worst since he's in a hospital, right? Wrong so very very wrong.
Having CF is horrible, you can't breath, you can hardly eat and you certainly aren't running around a hospital stealing cars and throwing helicopter pad parties. If you are one of the "lucky" cfers to not have bad symptoms, you aren't in a hospital. A real cfer in the hospital is weak, very thin, tired, struggling to breath and has a productive cough pretty much all the time. Most are also on oxygen and all are on iv medications around the clock. We have what is called a PICC line inserted in our arms for medication or a port if our hospital stays are long enough. Hospitalized cfers also do neublizer treatments, which was shown slightly, and vest treatments several times a day, 4 in my case, these treatments can last an hour or more and are given by respiratory therapists. Many of us also have feeding tubes and are fed a special formula by a pump at night to help us gain weight (like I said we are super skinny). In most cases hospitals have strict infection control rules for CF patients we are often not aloud to leave our room and in the cases where patients can leave they definitely must be wearing a mask. This goes for cancer patients as well. Both of these diseases allow a person to catch illnesses easily, cancer from the chemo and CF from all the mucous in the lungs, and hospital are basically one giant petri dish.
I understand what this world (hospital life) is like and I know it would not make very good tv. That being said it is still possible to have an entertaining show while portraying some realistic aspects of the disease. First of all the patients need to dress down a little bit, this is not high school, it's a hospital. We don't do our hair or wear make-up and nice clothes. More like hospital gowns, pajamas and sweats and a messy pony tail (if we have hair, I now where hats!). Yes we hospital kids often decorate our rooms but not as excessively as the one on the show. Coma kids are definitely in a hospital gown and hooked up to a few more monitors. Also hospital patients are there for a reason, meaning they get treatment, ivs, oral medications, monitoring vitals etc. And last but not least (and probably not really the last problem either) Sick kids wear masks, kids who can get sick easily also wear masks.
So please help all of the children who actually live in hospitals by portraying their life a little more accurately. Without some changes kids will be jealous of those of us who "get" to go to the hospital. Having a chronic illness is nothing to be jealous of.
Thank you Very Much,
Anna the lemon
Cystic Fibrosis, Lung Transplant, Diabetes and Lymphoma
P.S. Leo's eyebrows are pretty much the bushiest eyebrows I've ever seen. If he is that bald on his head you bet his eyebrows are at least somewhat thinned.
Thursday, July 11, 2013
beep, beep, beep
With nothing new to post in the world of transplant and the fact that I am still in the hospital and a bit board I figured it was time to back this thing up and give anyone out there wondering a quick, History of Anna (be sure to read that with the voice of one of those commercial voice over dudes! Trust me it adds to it!!)
So Grab on, here we go!
I was born, obviously, I'm pretty sure everyones story starts out the same. I was born in Colorado, one of the few states at the time that checked for Cystic Fibrosis in the newborn screening. My test was positive so further tests were done and it was confirmed a few weeks after I was born that I was the lovely "winner" of cystic fibrosis from the genetic lottery!
A quick note for those readers out there that are lucky enough to have no idea what Cystic Fibrosis, or CF as it is shortened to, is. CF is a genetic disease that affects the mucous membranes of the body. If you want to get all technical I could tell you that it specifically effects the protein that makes up the chlorine channels, causing them to either not work correctly or in some cases be nonexistent and is a recessive disease (meaning you need two mutated genes to get it). This lovely mutation creates not so lovely thick sticky mucous that gets stuck in the various organs and organ systems it effects, mainly the lungs but also the digestive system. The teeny tiny error in a CFers genetic code leads to some huge consequences, frequent and sever lung infections, digestive problems, malnutrition and insulin deficiencies being the main ones. There is currently no cure for CF, at least not for most of the different mutations, but there are many medications that can help to slow the process. In the end though, CF leads to death (though as I like to say, life leads to death....well that and cancer! )
Sounds fun, right?
Okay children gather round as we dive back into this fabulous tale!
Due to my inability to develop a fantastically advanced memory at a young age I do not in fact remember most of my childhood so bare with me here as this information is slightly ...fuzzy. I do not believe I had many problems with my CF as a young kid. I did take enzymes when I ate and did nubulizer treatments I think daily. I also did what is called CPT, which is where someone, my parents, would pound on my chest to help loosen things up. (I have no idea what it stands for I would guess chest percussion therapy...?) When I was I think 4ish I got the wonderfully exciting vest machine (it is actually a bit exciting) which replaced CPT. As far as hospital stays I did not have many, and none for "normal" CF reasons. I was in the hospital I believe for testing when I was really little and then again at maybe 3 or 4 because I got pneumonia and was not getting better. I also think I was in the hospital after having a bronchoscopy, where they put a camera down your throat and look at your lungs. During the bronch they tried to open up my lungs more and instead ended up releasing a bunch of bacteria which made me pretty sick. Again I have no actual memories of any of this so it is purely what I remember being told but overall I think I had a pretty healthy and normal early childhood.
And then I turned 9...
at 9 years old my friend CF decided to awaken and get busy. It launched its first attack on me in October of 2000. After seeing the doctor for one of my regular check ups he decided it was time for me to join the world of other CFers and experience the wonderful invention of a "tune-up". A tune-up is where you take a person with CF from their normal life, put them in a hospital for at least 2 weeks and pump them full of drugs, while doing nublizer and vest treatments 4 times a day and shoveling in as much food as possible in a full fledged counter attack on CF. Now I know how great this sounds to the normal person, but imagine for a second that you are a nine year old kid who frankly doesn't feel sick at all. (Oh yeah and its also almost Halloween) In addition to the horribleness they call the hospital, which I like to refer to as jail, it was also discovered that I was the happy home to the superbug MRSA. This got me, at the time, a one way ticket to the "isolation zone" a crazy world confined to four small walls, where visitors wear yellow "banana" suits and the only access to the outside world is a window with built in curtains that faces a parking garage. Again did I mention it was almost Halloween and I was 9. Then because this wasn't exciting enough I was put on steroids, which don't mix so well with me. These drugs give me a ton of energy, make me CRAZY and send my blood sugar through the roof, we're talking high 400s to 500s here (normal is 70s-low 100s). This made for a very unpleasant experience for both my mother (who stayed with me) and myself. Luckily I have mostly blocked out this and subsequent hospital stays, though I do remember some details, trick-or-treating in my room by knocking on the bathroom door and having my mom pretend to be different people and giving me candy being one of them. Luckily as most policies in the hospital like to do, the MRSA policy changed, allowing a person to be taken off isolation if they had a negative MRSA test enough times. I thankfully only tested positive for MRSA that one fateful October so when the policy changed I was taken off of isolation and let me tell you what a world of difference that did for me psychologically. There is just something to seeing people in normal clothes and knowing I can leave my room if the desire were to strike.
I was in and out of the hospital a few times a year from then on. It became a routine almost, go in for a check-up be told I needed a tune up, be pumped up with drugs, go crazy, get out, be happy and then do it all again.
By 7th grade the decision was made that I needed more support nutritionally and surgery was scheduled to have a g-tube put in. I have had it for 8 and a half years now and have finally made peace with it. I also, thankfully, don't really remember not having it or the entire process of getting it which helps. I do know two things; it hurt and it took a while before it stopped hurting. I have just recently started using my g-tube every night while I sleep, which is the typical CFer way to rock the tube! The night feeds are helping me though, so although my lungs are going downhill my weight is the best it has ever been! (well almost)
As far as my lungs go they are doing pretty bad, obviously. In February or 2011 I got pretty sick and was in the hospital for a few weeks. During that time it was discovered that my right lung had pretty much collapsed, we tried to get it to reopen but with no luck. Since that time I have done fairly well and felt decent for me but have definitely been very limited in what I can do. This past winter I made the decision to move to Phoenix for school. I loved it in Phoenix but unfortunately due to the lower elevation had a lot of trouble when I would return home. I ended up getting pretty sick over spring break and never really recovered from that. That brings us to now. I am currently on my second hospital stay since I have been home for the summer. I was only home a total of 13 days before I felt the need to return here. I am also on oxygen 24/7. I had known oxygen was needed when I returned to the hospital the last time but hoped I could be weened off of it completely. This has not been the case and instead it is seeming that I will be entirely oxygen dependent until I get my new lungs. Hopefully that will be sooner rather than later but until then I am learning how to deal with yet another aspect of my CF.
What do all those crazy words mean????
Here is a list, with explanation of the various things I do on a daily basis for anyone thinking a nebulizer is some futuristic zombie tranquilizing gun and the vest, is the latest fashion trend that only CFers seem to be in on.
Enzymes: Yes these are exactly what they sound like. They
are digestive enzymes to help replace the ones
that my body can't produce. I take them any time I
eat.
The Vest: It is indeed a vest though I would not say it is
very fashionable. The vest part hooks up to a
machine and fills with air that is vibrated. It
helps to loosen the stuff in my lungs.
Nebulizer: Blows air through a special mouth piece cup thing
that holds a liquid, usually medication but
sometimes just salt water. This liquid is then
turned into a vapor and breathed in. This helps my
lungs either by loosening or thinning mucous or
delivering antibiotics, it just depends on what
liquid I put in the cup.
G-Tube: A small tube that is inserted through the skin into
the stomach. It allows me to be feed formula by a
pump while I am sleeping.
Insulin: Used to regulate blood sugar. Most people make it
naturally but if not it can be taken as a shot.
This is by no means a complete list but it gives you an idea of what I do. If you have any questions please feel free to ask, I like answering them!
So Grab on, here we go!
I was born, obviously, I'm pretty sure everyones story starts out the same. I was born in Colorado, one of the few states at the time that checked for Cystic Fibrosis in the newborn screening. My test was positive so further tests were done and it was confirmed a few weeks after I was born that I was the lovely "winner" of cystic fibrosis from the genetic lottery!
A quick note for those readers out there that are lucky enough to have no idea what Cystic Fibrosis, or CF as it is shortened to, is. CF is a genetic disease that affects the mucous membranes of the body. If you want to get all technical I could tell you that it specifically effects the protein that makes up the chlorine channels, causing them to either not work correctly or in some cases be nonexistent and is a recessive disease (meaning you need two mutated genes to get it). This lovely mutation creates not so lovely thick sticky mucous that gets stuck in the various organs and organ systems it effects, mainly the lungs but also the digestive system. The teeny tiny error in a CFers genetic code leads to some huge consequences, frequent and sever lung infections, digestive problems, malnutrition and insulin deficiencies being the main ones. There is currently no cure for CF, at least not for most of the different mutations, but there are many medications that can help to slow the process. In the end though, CF leads to death (though as I like to say, life leads to death....well that and cancer! )
Sounds fun, right?
Okay children gather round as we dive back into this fabulous tale!
Due to my inability to develop a fantastically advanced memory at a young age I do not in fact remember most of my childhood so bare with me here as this information is slightly ...fuzzy. I do not believe I had many problems with my CF as a young kid. I did take enzymes when I ate and did nubulizer treatments I think daily. I also did what is called CPT, which is where someone, my parents, would pound on my chest to help loosen things up. (I have no idea what it stands for I would guess chest percussion therapy...?) When I was I think 4ish I got the wonderfully exciting vest machine (it is actually a bit exciting) which replaced CPT. As far as hospital stays I did not have many, and none for "normal" CF reasons. I was in the hospital I believe for testing when I was really little and then again at maybe 3 or 4 because I got pneumonia and was not getting better. I also think I was in the hospital after having a bronchoscopy, where they put a camera down your throat and look at your lungs. During the bronch they tried to open up my lungs more and instead ended up releasing a bunch of bacteria which made me pretty sick. Again I have no actual memories of any of this so it is purely what I remember being told but overall I think I had a pretty healthy and normal early childhood.
And then I turned 9...
at 9 years old my friend CF decided to awaken and get busy. It launched its first attack on me in October of 2000. After seeing the doctor for one of my regular check ups he decided it was time for me to join the world of other CFers and experience the wonderful invention of a "tune-up". A tune-up is where you take a person with CF from their normal life, put them in a hospital for at least 2 weeks and pump them full of drugs, while doing nublizer and vest treatments 4 times a day and shoveling in as much food as possible in a full fledged counter attack on CF. Now I know how great this sounds to the normal person, but imagine for a second that you are a nine year old kid who frankly doesn't feel sick at all. (Oh yeah and its also almost Halloween) In addition to the horribleness they call the hospital, which I like to refer to as jail, it was also discovered that I was the happy home to the superbug MRSA. This got me, at the time, a one way ticket to the "isolation zone" a crazy world confined to four small walls, where visitors wear yellow "banana" suits and the only access to the outside world is a window with built in curtains that faces a parking garage. Again did I mention it was almost Halloween and I was 9. Then because this wasn't exciting enough I was put on steroids, which don't mix so well with me. These drugs give me a ton of energy, make me CRAZY and send my blood sugar through the roof, we're talking high 400s to 500s here (normal is 70s-low 100s). This made for a very unpleasant experience for both my mother (who stayed with me) and myself. Luckily I have mostly blocked out this and subsequent hospital stays, though I do remember some details, trick-or-treating in my room by knocking on the bathroom door and having my mom pretend to be different people and giving me candy being one of them. Luckily as most policies in the hospital like to do, the MRSA policy changed, allowing a person to be taken off isolation if they had a negative MRSA test enough times. I thankfully only tested positive for MRSA that one fateful October so when the policy changed I was taken off of isolation and let me tell you what a world of difference that did for me psychologically. There is just something to seeing people in normal clothes and knowing I can leave my room if the desire were to strike.
I was in and out of the hospital a few times a year from then on. It became a routine almost, go in for a check-up be told I needed a tune up, be pumped up with drugs, go crazy, get out, be happy and then do it all again.
By 7th grade the decision was made that I needed more support nutritionally and surgery was scheduled to have a g-tube put in. I have had it for 8 and a half years now and have finally made peace with it. I also, thankfully, don't really remember not having it or the entire process of getting it which helps. I do know two things; it hurt and it took a while before it stopped hurting. I have just recently started using my g-tube every night while I sleep, which is the typical CFer way to rock the tube! The night feeds are helping me though, so although my lungs are going downhill my weight is the best it has ever been! (well almost)
As far as my lungs go they are doing pretty bad, obviously. In February or 2011 I got pretty sick and was in the hospital for a few weeks. During that time it was discovered that my right lung had pretty much collapsed, we tried to get it to reopen but with no luck. Since that time I have done fairly well and felt decent for me but have definitely been very limited in what I can do. This past winter I made the decision to move to Phoenix for school. I loved it in Phoenix but unfortunately due to the lower elevation had a lot of trouble when I would return home. I ended up getting pretty sick over spring break and never really recovered from that. That brings us to now. I am currently on my second hospital stay since I have been home for the summer. I was only home a total of 13 days before I felt the need to return here. I am also on oxygen 24/7. I had known oxygen was needed when I returned to the hospital the last time but hoped I could be weened off of it completely. This has not been the case and instead it is seeming that I will be entirely oxygen dependent until I get my new lungs. Hopefully that will be sooner rather than later but until then I am learning how to deal with yet another aspect of my CF.
What do all those crazy words mean????
Here is a list, with explanation of the various things I do on a daily basis for anyone thinking a nebulizer is some futuristic zombie tranquilizing gun and the vest, is the latest fashion trend that only CFers seem to be in on.
Enzymes: Yes these are exactly what they sound like. They
are digestive enzymes to help replace the ones
that my body can't produce. I take them any time I
eat.
The Vest: It is indeed a vest though I would not say it is
very fashionable. The vest part hooks up to a
machine and fills with air that is vibrated. It
helps to loosen the stuff in my lungs.
Nebulizer: Blows air through a special mouth piece cup thing
that holds a liquid, usually medication but
sometimes just salt water. This liquid is then
turned into a vapor and breathed in. This helps my
lungs either by loosening or thinning mucous or
delivering antibiotics, it just depends on what
liquid I put in the cup.
G-Tube: A small tube that is inserted through the skin into
the stomach. It allows me to be feed formula by a
pump while I am sleeping.
Insulin: Used to regulate blood sugar. Most people make it
naturally but if not it can be taken as a shot.
This is by no means a complete list but it gives you an idea of what I do. If you have any questions please feel free to ask, I like answering them!
Monday, July 8, 2013
Hello Blogging World
My name is Anna (hi Anna). Okay so maybe I'm not so new to this whole blogging thing (I'll admit I have had quite a few "rough" starts) but I am starting fresh and have a plan to keep this thing rolling,or scrolling, as I head down this new, scary, terrifying, slow, interesting, exciting and, probably a few feelings I haven't even thought of yet, path in my life.
For those of you who do not already know or who are just now tuning (clicking?) into the craziness that is Anna I have officially decided to get a lung transplant (eek), or at least go down that road in the hopes that I get accepted and in a few short long months it all works out and I am the happy and, for the first time much more, healthy new home to a fabulous "gently used" pair of lungs!
My hope is that this blog is a place for me to share my experience with others on a regular basis and without having to individually tell everyone of you what is going on with me (though I am sure I will do a bit of that as well!) So buckle up and enjoy the ride!
I have just started the whole transplant process and actually don't even think the official doctor talk between my current CF team and the transplant center has even happened yet so in the world of transplant there isn't really much to report.
So in other news....
I got my port de-accessed and then re-accessed for the first time ever today. (i'm not even sure those are the right terms but hey makes sense to me!) I was pretty nervous about it but it went really well. Taking off the first dressing made my skin, super itchy but this is the same as it has been with my piccs so I was used to that part. The nurse put numbing cream on the site so it would not hurt when it got re-accesed, then I was free for a bit. It was nice not having all the tape and tubing on/in my arm so I am liking that aspect of the port. Putting the new needle in freaked me out a tiny bit but it wasn't bad at all. I am not sure if the numbing cream worked because I did feel the needle but it was super quick and barely hurt at all. I'm not sure if this is just how it is with ports or if it wasn't numb enough, the times I have had the numbing cream for blood draws I did not feel the needle at all so I guess I will find out next time. We left out the cavilon, a type of skin prep, since I am suspecting it may be the culprit of my allergy, again only time will tell.
Not much else to report on today, pretty much same old same old here in the Children's Hospital. I think I will put a post up later with some of my background but for now this is all you get so enjoy!
Peace out home skillets 
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