My start to 2015:
I started planning my wedding, got started on the CF Walk for Princeton, and I was ready to begin a new clinical trial! However, over the last few months I started to drop in lung function. It was always little by little and since I wasn't feeling sick, we kept holding out for an increase. Read more details in this blog post here! Why weren't we worried? Well, we were cautious. But I'm allergic to all of the options for oral anitbiotics and most IVmeds used to fight the Psudeomonas in my lungs. Therefore, we like to exhaust all other options before IVs to make sure I don't build a resistance or even an allergy to the only 3 IV meds I can be on.
However, on Jan 7th (as you have read if you clicked the blog post above) that my lung function was 48%. In October 2013 it was 64 right after IVs in the hospital and my baseline for 2013-2014 was around 57-58%. I started to nocitce I would get out of breath walking normal amounts or doing any type of physcial activity (even cleaning the house). It's time for a "tune up" when I can't do dishes, start a load of laundry and wipe down counters/tables in the morning without getting winded. Andrew and I would go grocery shopping and I'd be so tired half way through, I'd either go sit and he finished shopping, or we'd just cut the list short and go home. And anyone who knows me understands I usually have tons of energy, so clearly I'm not okay with my shortness of breath (as medical proffessionals call it).
So Doc decided we had two options when we talked on Friday: 1.) Get Cayston approved by insurance and try a round (but who knows if it will get approved, we've been trying for it since October, ever since my machine broke) OR 2. Try IV meds and see if it helps. So Doc's office said they'd see if they could get my cayston machine approved by Monday or we'd discuss the admission to hospital more.
By Monday I was just ready to be admitted, I'm tired of not having energy, coughing more, having to carry my rescue inhaler with me from room to room, and coughing to death. So we set plans for me to be admitted last night (after Andrew got off work) and I'm going to be here for a couple days. I told Doc I just wanted to be out by Friday, so I could go to the meetings (Wedding Stuff & CF Walk) and Bridal Show this weekend.
So hopefully, that will work out and then I can finish the IVs at home. I don't mind doing them at home, it just takes a lot of time!
I'll be keeping everyone updated on my CF Support Facebook Page!
Now for the Hospital Opinion: I love the my Nurses, PCTs, RT, etc. Another perk (mainly due to my CF) is that I have a nice private room, I'd prefer the beach or skyline window sets... but I'm sure kids like the Barnyard animals, but not my thing.
The State of the Union Address was on last night, and then Andrew & I sat on my bed and watch as Mr. President used the advances in the research & medicine towards progess for a cure for Cystic Fibrosis as an example! Whoot Whoot! It was really neat to hear the Shoutout about CF advances, considering how hard we work towards fundraising for it!
The food is great here. The other 3-4 hospitals I have been in have typical bland and boring food. Including a very limited menu. Here I can order an unlimited amount (since I'm on a high calorie diet. Plus, the options are endless: Shrimp Scampio, Mexican,Turkey, Hummus and Pita bread, Any fruit or veggie, pizza, hot beef sandwich, over 15 entrees and 30 sides to choose from. I'm boring and always order shrimp scampi or hot turkey meals with varying sides. I always gain weight when I'm in the hospital. So that's another perk for sure!
I'm currently waiting for my Doc B to come in, so I can tell him I no longer want a pulsox on. It beeps constantly whenever I have to take it off to go to bathroom or get out of bed. I understand its precaution the first night in the hospital, but after that he lets me if my pulsox numbers are decent. Which they hardly ever go below 97. Plus blogging with this big clunky thing on my finger is driving me nuts!
I feel bad complaining, knowing that some of my CF friends are doing way worse and struggling to fight
transplant rejection, etc. So It's not really all that bad when you put things into perspective. However, all of them would agree with me too, pulsox is annoying. lol
And for anyone who doesn't like needles sorry, but its a really good (informative) picture. This is my mediport needle. The long gray needle part goes into the center of the port (which is bouncy feeling, from rubber top), because and then the needles hits/goes into the back wall of the mediport. By accessing the backwall it gives a direct access to main vein. No more blowing IVS, etc. I love my mediport, but it's old (from 1996). So its not a power port. Which means they can't draw blood off it. Also a difference with mine that I've noticed from others is the placement. Mine is located in my right breast (slightly to the inside). This does make it more difficult to keep it stable/immobile while putting in the needle. But I love the placement, I can wear bikinis and nobody even knows it there (except the scar above my right breast), I joke sometimes I jot a boob job. But really I'd never want one anywhere else, arms, above the chest, by the shoulder, not for me.I had to be a little careful taking this picture, but I think seeing it accessed makes it eaiser to understand how it works. I love that I can have IVs in and still work or go to school. LOVE my mediport.
I know I usually post a Funny but annoying moment. But you'll just have to wait til later. I'll be uploading a Vlog later today on that Facebook page (I posted above). This will be my first Vlog ever, but one of my best friend's insists I should do some. So I'll get it a whirl later today... perhaps after I shower (very carefully to not get my IV wet).
And I promise to keep everyone updated. And please send good thoughts and prayers to my friend Cloey, who has been in the hospital since before Christmas! She is a strong, beautiful, fun lovin 13 year old who should not be fighting a transplant rejection to the new lungs she received little over a year ago!
However, on Jan 7th (as you have read if you clicked the blog post above) that my lung function was 48%. In October 2013 it was 64 right after IVs in the hospital and my baseline for 2013-2014 was around 57-58%. I started to nocitce I would get out of breath walking normal amounts or doing any type of physcial activity (even cleaning the house). It's time for a "tune up" when I can't do dishes, start a load of laundry and wipe down counters/tables in the morning without getting winded. Andrew and I would go grocery shopping and I'd be so tired half way through, I'd either go sit and he finished shopping, or we'd just cut the list short and go home. And anyone who knows me understands I usually have tons of energy, so clearly I'm not okay with my shortness of breath (as medical proffessionals call it).So Doc decided we had two options when we talked on Friday: 1.) Get Cayston approved by insurance and try a round (but who knows if it will get approved, we've been trying for it since October, ever since my machine broke) OR 2. Try IV meds and see if it helps. So Doc's office said they'd see if they could get my cayston machine approved by Monday or we'd discuss the admission to hospital more.
By Monday I was just ready to be admitted, I'm tired of not having energy, coughing more, having to carry my rescue inhaler with me from room to room, and coughing to death. So we set plans for me to be admitted last night (after Andrew got off work) and I'm going to be here for a couple days. I told Doc I just wanted to be out by Friday, so I could go to the meetings (Wedding Stuff & CF Walk) and Bridal Show this weekend.
So hopefully, that will work out and then I can finish the IVs at home. I don't mind doing them at home, it just takes a lot of time!
I'll be keeping everyone updated on my CF Support Facebook Page!
Now for the Hospital Opinion: I love the my Nurses, PCTs, RT, etc. Another perk (mainly due to my CF) is that I have a nice private room, I'd prefer the beach or skyline window sets... but I'm sure kids like the Barnyard animals, but not my thing.The State of the Union Address was on last night, and then Andrew & I sat on my bed and watch as Mr. President used the advances in the research & medicine towards progess for a cure for Cystic Fibrosis as an example! Whoot Whoot! It was really neat to hear the Shoutout about CF advances, considering how hard we work towards fundraising for it!
The food is great here. The other 3-4 hospitals I have been in have typical bland and boring food. Including a very limited menu. Here I can order an unlimited amount (since I'm on a high calorie diet. Plus, the options are endless: Shrimp Scampio, Mexican,Turkey, Hummus and Pita bread, Any fruit or veggie, pizza, hot beef sandwich, over 15 entrees and 30 sides to choose from. I'm boring and always order shrimp scampi or hot turkey meals with varying sides. I always gain weight when I'm in the hospital. So that's another perk for sure!I'm currently waiting for my Doc B to come in, so I can tell him I no longer want a pulsox on. It beeps constantly whenever I have to take it off to go to bathroom or get out of bed. I understand its precaution the first night in the hospital, but after that he lets me if my pulsox numbers are decent. Which they hardly ever go below 97. Plus blogging with this big clunky thing on my finger is driving me nuts!
I feel bad complaining, knowing that some of my CF friends are doing way worse and struggling to fight
transplant rejection, etc. So It's not really all that bad when you put things into perspective. However, all of them would agree with me too, pulsox is annoying. lol And for anyone who doesn't like needles sorry, but its a really good (informative) picture. This is my mediport needle. The long gray needle part goes into the center of the port (which is bouncy feeling, from rubber top), because and then the needles hits/goes into the back wall of the mediport. By accessing the backwall it gives a direct access to main vein. No more blowing IVS, etc. I love my mediport, but it's old (from 1996). So its not a power port. Which means they can't draw blood off it. Also a difference with mine that I've noticed from others is the placement. Mine is located in my right breast (slightly to the inside). This does make it more difficult to keep it stable/immobile while putting in the needle. But I love the placement, I can wear bikinis and nobody even knows it there (except the scar above my right breast), I joke sometimes I jot a boob job. But really I'd never want one anywhere else, arms, above the chest, by the shoulder, not for me.I had to be a little careful taking this picture, but I think seeing it accessed makes it eaiser to understand how it works. I love that I can have IVs in and still work or go to school. LOVE my mediport.I know I usually post a Funny but annoying moment. But you'll just have to wait til later. I'll be uploading a Vlog later today on that Facebook page (I posted above). This will be my first Vlog ever, but one of my best friend's insists I should do some. So I'll get it a whirl later today... perhaps after I shower (very carefully to not get my IV wet).
And I promise to keep everyone updated. And please send good thoughts and prayers to my friend Cloey, who has been in the hospital since before Christmas! She is a strong, beautiful, fun lovin 13 year old who should not be fighting a transplant rejection to the new lungs she received little over a year ago!
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