currently listening to Lana del rey
you know the ol' saying "life is what happens when your busy making other plans"....well I am home now from clinic with a saline lock peripheral IV....10 days of IVantibiotics. Ceftazadine....so flight delayed hopefully only 2 weeks. It's better to find everything out now and get it all sorted out before I get there and have to be pryed back here. I probably would not be a happy camper.
My creatine was down to 95. Normal. It is never usually below 100 which is normal.
My wbc was down to 10 from 12.7 (indicating less infection)
My haemoglobin was 121, a normal non lung double transplant woman usually sits at 120. Normal.
I know...right?...seems like they got my blood work mixed up with someone elses...but i swear i double checked!
The good thing is, breathing still a-okay, everything is dandy, minus the tight chest which they said was probably due to the pseudomonas. So these drugs will nip her in the bud.
They also found something like asperitus (sp?) pneumonia...meaning I may not be swallowing my food properly and going in to my lungs causing the rejection and other not so nice things to have...so I start a stomach emptying pill as well today.
The funny thing about being a doctor is you never really truly know whats wrong with someone...it's science but also it's a lot of art...an educated guessing game on what to add, what it could be, what should be done...no one knows why you get cancer, why you got that mark on your back, why your back is sore, or why exactly you have heart burn....it's all an educated guessing game...a very skilled art form with a minor in science. At least that seems to be in the case in transplants.
Dear universe,
thanks for making this glitch seem not so big in the grand scheme of things. Thanks for making this glitch treatable. thanks for making the doctors able to have theories and hypothesis'.
Eternally grateful to still be here breathing, planning, dreaming
Sincerely,
the girl with curls
Dear vancouver,
I'm coming, I'm coming. Save me a seat.
Sincerely,
the girl with the orange 1920's umbrella
Showing posts with label IV antibiotics. Show all posts
Showing posts with label IV antibiotics. Show all posts
Monday, January 16, 2012
Tuesday, June 29, 2010
The Secret World of Status 3
Hey everyone, this is Hattie's "cystic cyster" L.
No, Hattie has not got the call yet--we are still anxiously waiting on that--but our girl was simply too emotionally and physically drained today to update the blog herself, so I will be her hands and relay the messages she text me this afternoon.
Yesterday was very hard for Hattie and it wasn't any easier today. Clinic was surprisingly not busy and she was pleased to see the head honcho, Dr. T. And there it was confirmed: the new med combo is not working. Her pfts have continued to decrease and are now sitting at 15% and her WBC has risen to 20, from 17 last week. The doctors decided (and Hattie even messaged me this in anticipation of it happening) that she is 'rapidly deteriorating' and will be moved up to the 'secret' third status list.
Unfortunately, for now she must also stay in the hospital again, at least until they try a new drug combo and confirm it is working (they are trying piptazo and colistin). Following her last, er, memorable hospital stay, she was not too enthused but she also accepted that--realistically--it's not wise for her to go home at this point in time. On the upside, she is staying in my old room with the giant fridge and freakishly huge washroom and her Mom will be staying with her tonight. The entire fam jam will also be coming down for her Mom's birthday tonight too.
It's all very scary for Hattie and her family now, so they are asking for all your super-charged-positive-vibes! Let's start visualizing those new lungs!
- Lindsay
No, Hattie has not got the call yet--we are still anxiously waiting on that--but our girl was simply too emotionally and physically drained today to update the blog herself, so I will be her hands and relay the messages she text me this afternoon.
Yesterday was very hard for Hattie and it wasn't any easier today. Clinic was surprisingly not busy and she was pleased to see the head honcho, Dr. T. And there it was confirmed: the new med combo is not working. Her pfts have continued to decrease and are now sitting at 15% and her WBC has risen to 20, from 17 last week. The doctors decided (and Hattie even messaged me this in anticipation of it happening) that she is 'rapidly deteriorating' and will be moved up to the 'secret' third status list.
Unfortunately, for now she must also stay in the hospital again, at least until they try a new drug combo and confirm it is working (they are trying piptazo and colistin). Following her last, er, memorable hospital stay, she was not too enthused but she also accepted that--realistically--it's not wise for her to go home at this point in time. On the upside, she is staying in my old room with the giant fridge and freakishly huge washroom and her Mom will be staying with her tonight. The entire fam jam will also be coming down for her Mom's birthday tonight too.
It's all very scary for Hattie and her family now, so they are asking for all your super-charged-positive-vibes! Let's start visualizing those new lungs!
- Lindsay
Wednesday, April 28, 2010
sometimes it's okay to be sad...
sometimes it's okay to be sad...so I let myself be sad. Yesterday I came home from clinic grabbed my cat, laid on my bed, closed the door, turned on the musical talents of sigur ros and just allowed myself to be sad.
I have not updated my blog in a while.
I was on IV for two weeks. I stopped last Friday, with still short of breath symptoms, but we were hoping it was just asthma symptoms, since the infection symptoms seemed to be at bay, we switched puffers, last Tuesday but all Advair seemed to do was make my voice disappear...no improvement on the shortness of breath front.
On Sunday everything felt like an effort. It felt like I was drowning. Everything just seemed to much. Everything seemed like such an effort. It was a horrible horrible feeling. On Tuesday my lung function was down to 0.71 20%, down from where I was before I caught my cold a few weeks ago at 24% and .0.83 liters. With someone as low as lung function as me, those 4 percents mean the world.
How much longer do I keep living in this little in between world? This thought is what I have been mulling around on the back burner the last couple weeks. Is it time for me to get a transplant? I'm having lung envy, and life jealousy. I'm so tired of not being able to breathe, I'm tired of being on this roller coaster ride. ( I hate roller coasters, and it seems i have been on this one for months now)...I'm tired of missing out on things because I can't walk, or carry things, or it's too much energy, too much effort. These are all things that I had been mulling around in my brain....and then my doctor says these words to me yesterday "this is your second, maybe third infection this year already. You've been on IV for almost all of this year, if things don't improve in the next few weeks, I think we should really consider lung transplant. It's not an over night, thing like okay I'll have new lungs now, It takes awhile, there's a waiting game, and when you're in the 0.70's we don't want to miss the boat.".............
so i'm back on IV...just resting and taking it easy, going in to hibernation mode. Lots of 'brothers and sisters' tv series will be watched! Hoping to get back to 0.83...but really, maybe I am suppose to get a lung transplant soon...my doctor is right, I have been on IV for most of this year, and it seems one day I feel good, the next I don't...it's so inconsistent. When I have this low a lung function, and when I know it's going to take awhile, maybe even a year once I'm on the list to get lungs, what is the right choice? Living in this inbetween world is no fun. I want to start living life. I just keep thinking that if a transplant does work, being able to suck in air right to the bottom of my lungs, being able to walk around my home without getting winded, being able to go on trips without thinking about how exhausted or overwhelmed I'll be....being able to take a walk outside without gasping for breath....I want all that. Lately everything is just so much harder. I don't want to miss the boat on a lung transplant...but I don't want to get one too early either. I guess we just wait and see if these drugs work, and if I can actually manage to stay off IV....waiting game again.
I have not updated my blog in a while.
I was on IV for two weeks. I stopped last Friday, with still short of breath symptoms, but we were hoping it was just asthma symptoms, since the infection symptoms seemed to be at bay, we switched puffers, last Tuesday but all Advair seemed to do was make my voice disappear...no improvement on the shortness of breath front.
On Sunday everything felt like an effort. It felt like I was drowning. Everything just seemed to much. Everything seemed like such an effort. It was a horrible horrible feeling. On Tuesday my lung function was down to 0.71 20%, down from where I was before I caught my cold a few weeks ago at 24% and .0.83 liters. With someone as low as lung function as me, those 4 percents mean the world.
How much longer do I keep living in this little in between world? This thought is what I have been mulling around on the back burner the last couple weeks. Is it time for me to get a transplant? I'm having lung envy, and life jealousy. I'm so tired of not being able to breathe, I'm tired of being on this roller coaster ride. ( I hate roller coasters, and it seems i have been on this one for months now)...I'm tired of missing out on things because I can't walk, or carry things, or it's too much energy, too much effort. These are all things that I had been mulling around in my brain....and then my doctor says these words to me yesterday "this is your second, maybe third infection this year already. You've been on IV for almost all of this year, if things don't improve in the next few weeks, I think we should really consider lung transplant. It's not an over night, thing like okay I'll have new lungs now, It takes awhile, there's a waiting game, and when you're in the 0.70's we don't want to miss the boat.".............
so i'm back on IV...just resting and taking it easy, going in to hibernation mode. Lots of 'brothers and sisters' tv series will be watched! Hoping to get back to 0.83...but really, maybe I am suppose to get a lung transplant soon...my doctor is right, I have been on IV for most of this year, and it seems one day I feel good, the next I don't...it's so inconsistent. When I have this low a lung function, and when I know it's going to take awhile, maybe even a year once I'm on the list to get lungs, what is the right choice? Living in this inbetween world is no fun. I want to start living life. I just keep thinking that if a transplant does work, being able to suck in air right to the bottom of my lungs, being able to walk around my home without getting winded, being able to go on trips without thinking about how exhausted or overwhelmed I'll be....being able to take a walk outside without gasping for breath....I want all that. Lately everything is just so much harder. I don't want to miss the boat on a lung transplant...but I don't want to get one too early either. I guess we just wait and see if these drugs work, and if I can actually manage to stay off IV....waiting game again.
Saturday, April 10, 2010
I get by with a little help from my friends....
sooo I have some really really...REALLY great friends. My trip to bdos was cancelled due to a cold that I couldn't kick...until next year! sigh...
I also had to get in ANOTHER picc line yesterday. FYI, it went smoothly. Thank gosh. ( I guess the extra ativan pills I popped, are doin' the trick these days? ha I asked not to have the dr. that always butchers me. I even told the male nurse attending me, (well I think it was the ativan 'happy' drugs doing all the talking at this point) which doctor always screwed up on me and that I always ask not to have, he started laughing, as if he knew that the dr. was bad at them! gesh..
I started IV drugs yesterday, and am already feeling better! (could be the placebo effect, and the bouquet flower effect ha, but I'll take it!)...but my week is already filling up with fun activities to replace barbados...including wearing frilly frocks, big hats, and speaking with british accents for high tea! haha so fun, can't wait NM.
Also I got a call this morning asking where I lived, that they had a delivery for me, a flower arrangement delivery??? Well I'll be!....tickled pink I was! Who could it be from? so exciting! They were from my ghost best friend! Thanks cysta! LOVE YOU! They really truly absolutely made my day! My mom even cried! haha
She sometimes has it harder then me when I get my picc lines in...I've never been on the other side of the waiting room during surgery, but I imagine it's not fun...at least I'm the one on the happy pills, poor mama has to sit there worrying sans drugs. If they take longer, she starts to worry they're butchering my arms again. If she sees the dr. we fear walk out of the room, her heart starts to race, her palms start to sweat, and her tear ducts start to leak....and she didn't get any happy pills...so maybe she has it worse? ha
Anyways we made it through it...I'm on mero and cefapime this time. Every eight hours, so I'll get to stay out later then 9 this time round! haha my friend Brit is glad to here that! lol
Anyways just a little post saying, I'm doing well, so is my mom! ha
Sometimes even though you would think everything should be just awful...there are soo many negative ways I could be looking at this chest infection, but I'll focus on all the positives, heck i just got a kick ass bouquet of flowers this morning!...there are always little smiles, little laughs, little quirks, little happinesses to be found, always. Probably from those so called bad things in one's life, is when the great things in one's life will transpire. So I've had another set back...do you know how many "set ups" I have...tons. I have tons to look forward to in the next few weeks! I'll get on another trip....maybe San Fransisco?? Smile world...I am.
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