Today was a long one at the clinic, but a good one. Got to be with my doctor of the last ten years or so. Always a comfort, he is thorough always, honest and truthful, however today no comments on my hair, so it must not have looked too bad.
He did tell me I am too worried, and part of that has to do with the fact I am still on some drugs he would like to see me off of, like Lorizipan, Ambien, and Dilauded. Guess I'm a little out of it, so off I go gradually and we shall see what happens.
I also have been removed from the antibiotics, Ceftazadime, Cipro, and TOBI. I am changed to one IV Vancomyacin because I have staph infection, of course. They found that when they pulled my pigtail. So I lose three and gain one that takes an hour, but it's movable so I can do anything but shower with it.
Which speaking of showering, I just got a shower chair, that should make that process easier, thanks to used stores like Salvation Army for a good used purchase.
Checked out pulmonary Rehab today which will help me use these new lungs to the best they can be. My next week feels tiring already. I just have to learn how to work and when to rest. I just need to gain weight, I am trying and I am always hungry, the prednisone burst for three days has messed up my gut and made eating harder, but hopefully that will fix in the next couple days.
Well enough about that. I got to ride in the super clean Honda last night. Chris was kind enough to take it through Simonize for a full inside and out wash, it looked brand new for a 14+ , year old car, I still love my baby. Give me three months and I will be behind that wheel.
Happy trails.
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Friday, November 18, 2011
Thursday, November 17, 2011
4.5 months
So! Something I have put out of my mind somewhat since my transplant is my long stay in the Respiratory Care Unit or the "Vent Unit" for short. First I have to say I had great care, amazing nurses, respiratory therapists, and doctors.
To be honest there was a lot of frustration at first that had to do with the doctors understanding that I was not going to get any better or see my home again until I had a transplant. It was something they hadn't dealt with before and to add to that I wasn't the only one with CF to show up in the unit, there was two of us at once.
My days were filled with therapy and suctioning of mucous, lots and lots of mucous. I remember my first full day on the unit, I had physical therapy, occupational therapy, and the respiratory therapists (RT for short), Rt's not only did my CPT, but were there to get me to walk on the portable vent, but also to get me to breathe on my own, which after my first out on the walk vent I was ready to try breathing on my own off the vent. It was hard but the first months I was able to shower and spend a good eight hours off the vent, leave the unit for walks and wheel chair rides to the chapel.
But then the infection set in that changed everything around September, the doctors were not taking my word that an infection was running rampant in my body, the white count wasn't up and my temp wasn't high enough. But my oxygen would dropped to 74 while showering barely making it out in my robe. It was scary, basically from then on I didn't leave the vent but for a few minutes until after my transplant.
I will never be able to explain or put into any words to describe how difficult it was to be suctioned so frequently so much junk out of the lungs, not sleep at night, and try to hang on for a surgery you hope will save your life and give you many years ahead. It was like looking to get over a wall, but not knowing what was on the other side.
I guess it's a good thing I have forgotten already some of my time on the vent, but it has started to creep back in. And though I finally scaled that wall to a world with new lungs I still don't know what's on this side of the wall. Not that I want suctioning back or a vent back, I just want to understand my new life better. Hope is hard to come by sometimes these days. I have had so many prayers and well wishes that I can't even begin to thank each person individually but I wish I could. I just hope I can get a few years out of these lungs, I hope soon they will settle in and I will feel some comfort in my body that doesn't feel my own. I guess I hoped it would be a little easier, but trying to gain weight while doing all this isn't easy.
I know I hurdled the wall but I still feel blind to what's ahead. Maybe soon I will see a break, I can only wish and dream just like I did when I was on the vent for a healthy future.
- Posted using BlogPress from my iPad
To be honest there was a lot of frustration at first that had to do with the doctors understanding that I was not going to get any better or see my home again until I had a transplant. It was something they hadn't dealt with before and to add to that I wasn't the only one with CF to show up in the unit, there was two of us at once.
My days were filled with therapy and suctioning of mucous, lots and lots of mucous. I remember my first full day on the unit, I had physical therapy, occupational therapy, and the respiratory therapists (RT for short), Rt's not only did my CPT, but were there to get me to walk on the portable vent, but also to get me to breathe on my own, which after my first out on the walk vent I was ready to try breathing on my own off the vent. It was hard but the first months I was able to shower and spend a good eight hours off the vent, leave the unit for walks and wheel chair rides to the chapel.
But then the infection set in that changed everything around September, the doctors were not taking my word that an infection was running rampant in my body, the white count wasn't up and my temp wasn't high enough. But my oxygen would dropped to 74 while showering barely making it out in my robe. It was scary, basically from then on I didn't leave the vent but for a few minutes until after my transplant.
I will never be able to explain or put into any words to describe how difficult it was to be suctioned so frequently so much junk out of the lungs, not sleep at night, and try to hang on for a surgery you hope will save your life and give you many years ahead. It was like looking to get over a wall, but not knowing what was on the other side.
I guess it's a good thing I have forgotten already some of my time on the vent, but it has started to creep back in. And though I finally scaled that wall to a world with new lungs I still don't know what's on this side of the wall. Not that I want suctioning back or a vent back, I just want to understand my new life better. Hope is hard to come by sometimes these days. I have had so many prayers and well wishes that I can't even begin to thank each person individually but I wish I could. I just hope I can get a few years out of these lungs, I hope soon they will settle in and I will feel some comfort in my body that doesn't feel my own. I guess I hoped it would be a little easier, but trying to gain weight while doing all this isn't easy.
I know I hurdled the wall but I still feel blind to what's ahead. Maybe soon I will see a break, I can only wish and dream just like I did when I was on the vent for a healthy future.
- Posted using BlogPress from my iPad
Tuesday, November 15, 2011
Too soon?
I thought I would try myself at blogging tonight, at 6 pm, I thought I would have my first happy blog to share, but instead I find myself back in the uncomfortable spot of not knowing where my life is going.
I traded a life with CF lungs for a life with a mystery. I know that my CF lungs were not going to last much longer but I didn't allow myself to think of the harsh realities of transplant life.
At 7:30ish I received a call from the clinic that the bronchoscopy I had today showed signs of rejection, what does that mean fully? At this point I don't know. I know rejection isn't good but I also know it happens and that it can be fixed with high doses of steroids, but I also know that it can be the beginning of something bad and right now I don't know where I sit.
It's interesting, in all truth here the last month or so on the vent I was ready for this life journey to be over, I was ready to go home to God and I was okay with it. Now I am where I wanted to be with new lungs and all I can think is, I hope this isn't as far as I get, just weeks into my new lungs before it blows up in my face, I am not ready to die. A month ago, yes, today not so much. I have plans, and people have told me to a plan for my new life with my new lungs so that's I what I have done, so this can only be a bump in the road.
I am not afraid to go to heaven if God will have me, I just don't want to leave my family behind. I enjoy them all too much. I guess I just want my dream, the one big dream I had of being a mom was doused so I hope this dream of a happy healthy future will come true.
I was told the first year could be bumpy and I guess we are starting off that way.
- Posted using BlogPress from my iPad
I traded a life with CF lungs for a life with a mystery. I know that my CF lungs were not going to last much longer but I didn't allow myself to think of the harsh realities of transplant life.
At 7:30ish I received a call from the clinic that the bronchoscopy I had today showed signs of rejection, what does that mean fully? At this point I don't know. I know rejection isn't good but I also know it happens and that it can be fixed with high doses of steroids, but I also know that it can be the beginning of something bad and right now I don't know where I sit.
It's interesting, in all truth here the last month or so on the vent I was ready for this life journey to be over, I was ready to go home to God and I was okay with it. Now I am where I wanted to be with new lungs and all I can think is, I hope this isn't as far as I get, just weeks into my new lungs before it blows up in my face, I am not ready to die. A month ago, yes, today not so much. I have plans, and people have told me to a plan for my new life with my new lungs so that's I what I have done, so this can only be a bump in the road.
I am not afraid to go to heaven if God will have me, I just don't want to leave my family behind. I enjoy them all too much. I guess I just want my dream, the one big dream I had of being a mom was doused so I hope this dream of a happy healthy future will come true.
I was told the first year could be bumpy and I guess we are starting off that way.
- Posted using BlogPress from my iPad
Monday, September 19, 2011
Day-o
Today my grandma Olivia was laid to rest, after 98great years. The matriarch of a family of 13children, 60+ grandchildren, and over 100 great-grandchildren. Now that is an accomplishment. Miss and love you always, there is no way to fill voids, except to remember the things you love about the person, and hope that you can learn and lead by example the way she did her life. No judgements, no foul words, and no ungratefulness.
I have seen the passing of my last grandparent, and not able to attend her funeral. Yet able to via today's technology a live feed, not the same but I was so happy to be viewing I can't explain. Grandparents are a foundation for our future, from them comes down the generations, strength, hard work, dedication and perseverance. What we do with that is our choice but we are a reflection of them. I was blessed with my grandparents, they were good people, made of strength of character, and did what hey needed to to give their family a life and food on their plates.
As I walk this life journey I like to think some of my strength comes from them, but feel as though I can never be truly to their caliber, if I was, I wouldn't cry and complain and beg God each day to bring me lungs. I also feel it shows my weakness and for that God pushes me back another day. My faith is not as strong as theirs either, I like to think it is but I like to believe that God will help me in my deepest despair, here I am on the precipice and I can't find him with help. I know he's here I just can't locate him. For all the struggling gramma Henrietta had she never wavered from God in all her years. Olivia in all her health scares of hers and the children I am sure she never wavered. I would like them all up their in heaven to send down me their strength and let me know God the way they knew God so I can have the strength I need for this journey. I am teetering on breakdown mode with no help in sight.
I've made it to the bargaining portion of acceptance and it isn't pretty. Problem is I don't know what to bargain with because God holds all the chips.
- Posted using BlogPress from my iPad
I have seen the passing of my last grandparent, and not able to attend her funeral. Yet able to via today's technology a live feed, not the same but I was so happy to be viewing I can't explain. Grandparents are a foundation for our future, from them comes down the generations, strength, hard work, dedication and perseverance. What we do with that is our choice but we are a reflection of them. I was blessed with my grandparents, they were good people, made of strength of character, and did what hey needed to to give their family a life and food on their plates.
As I walk this life journey I like to think some of my strength comes from them, but feel as though I can never be truly to their caliber, if I was, I wouldn't cry and complain and beg God each day to bring me lungs. I also feel it shows my weakness and for that God pushes me back another day. My faith is not as strong as theirs either, I like to think it is but I like to believe that God will help me in my deepest despair, here I am on the precipice and I can't find him with help. I know he's here I just can't locate him. For all the struggling gramma Henrietta had she never wavered from God in all her years. Olivia in all her health scares of hers and the children I am sure she never wavered. I would like them all up their in heaven to send down me their strength and let me know God the way they knew God so I can have the strength I need for this journey. I am teetering on breakdown mode with no help in sight.
I've made it to the bargaining portion of acceptance and it isn't pretty. Problem is I don't know what to bargain with because God holds all the chips.
- Posted using BlogPress from my iPad
Monday, September 5, 2011
Labor day
So, on day 97, I would like to write about all the people who I have meet in these last nearly one hundred days who's names I will someday forget or faces will fade from my mind but who presence has made a lasting impression on this life of mine.
You know when people say "deja vu", I have had that many times since being here. So, my theory is that I am here once again trying to do something different this time around, which is my typical reaction to deja vu, but my new theory is that these people I meet were Always meant to be part of my life and each one touching a different part of my needs. By needs I mean, caregivers, lifesavers, friends, artistic inspirations, spiritual guides, and more. I have learned that I can't change my past but I don't have to because the present is providing me with enough to guide a greater future. Because some of the people that have touched my life more than any are the ones I haven't or never will I meet.
To George, someone who I have met twice. You have left a mark on my heart, I wish you the longest life with your new lungs. The fact that My name was some of the first words written when you awoke from surgery is touching. I think you might have been wanting me to know how awesome it is to breathe. That for as little as we have known of each other a bond is formed. Thank you George.
Life is nothing without people making a difference, or rather making a presence, physically or from afar. Even if I knew you before day 1.
You are one of those who's made a difference in my life, yes you!
- Posted using BlogPress from my iPad
You know when people say "deja vu", I have had that many times since being here. So, my theory is that I am here once again trying to do something different this time around, which is my typical reaction to deja vu, but my new theory is that these people I meet were Always meant to be part of my life and each one touching a different part of my needs. By needs I mean, caregivers, lifesavers, friends, artistic inspirations, spiritual guides, and more. I have learned that I can't change my past but I don't have to because the present is providing me with enough to guide a greater future. Because some of the people that have touched my life more than any are the ones I haven't or never will I meet.
To George, someone who I have met twice. You have left a mark on my heart, I wish you the longest life with your new lungs. The fact that My name was some of the first words written when you awoke from surgery is touching. I think you might have been wanting me to know how awesome it is to breathe. That for as little as we have known of each other a bond is formed. Thank you George.
Life is nothing without people making a difference, or rather making a presence, physically or from afar. Even if I knew you before day 1.
You are one of those who's made a difference in my life, yes you!
- Posted using BlogPress from my iPad
Location:Mb 6650
Monday, August 22, 2011
"good"
Sometimes brutal honesty is hard. It's always easy to say "good" when someone asks how you feel. Truth be told right now I am not sure I could find a lower point in life as I wait for what could potentially be the best days yet to come but truth is this sucks.
Never one to take compliments well, as though I am unworthy of such well doing. But I have had more people tell me how inspirational I am, and inside I feel like somehow I am fooling them all with my mock cheeriness. Thing is I think they see the truth I don't but for different reasons. I am just too damn stubborn to quit and frankly I am pissed, I don't want to play this game, or fight this fight, but the images of the people I love float through my mind one by one and those images remind me why I fight this, I want more time with them. Simply put nothing is more important on this earth than them. That's why I continue on and don't have the heart to say I can't go on. Not to sound big headed but I know just as much if I lost one of them that losing me would create a emptiness and all our beautiful memories would lie in there only to stop every so often to pull out one of those memories and smile with a glint of tear, because those are sweet memories. I am not ready to be a memory, I am ready to add more to the photo album of life.
I guess in the midst of your biggest life struggle that you can be an inspiration and not even realize it. And it's being an inspiration to people you would never know. Saddest part is its easy to be a silent struggler but put on the face of a warrior, just so people don't see your real pain. That's what I have always done and yet maybe not as well as I think I did.
So, as I struggle another day between the silence of life on a vent and trying to stay afloat on just oxygen, I find another day floating by. Another day to drag myself from bed to chair, from chair to walking on a vent, to riding a bike. I find that each day is as hard as the last and easier than the day yet to come. I can only believe some force greater than me is driving this body because I am tired, bone tired. And if I had the strength I would say I am done, but I guess fighting hard is easier than doing nothing at all.
- Posted using BlogPress from my iPad
Never one to take compliments well, as though I am unworthy of such well doing. But I have had more people tell me how inspirational I am, and inside I feel like somehow I am fooling them all with my mock cheeriness. Thing is I think they see the truth I don't but for different reasons. I am just too damn stubborn to quit and frankly I am pissed, I don't want to play this game, or fight this fight, but the images of the people I love float through my mind one by one and those images remind me why I fight this, I want more time with them. Simply put nothing is more important on this earth than them. That's why I continue on and don't have the heart to say I can't go on. Not to sound big headed but I know just as much if I lost one of them that losing me would create a emptiness and all our beautiful memories would lie in there only to stop every so often to pull out one of those memories and smile with a glint of tear, because those are sweet memories. I am not ready to be a memory, I am ready to add more to the photo album of life.
I guess in the midst of your biggest life struggle that you can be an inspiration and not even realize it. And it's being an inspiration to people you would never know. Saddest part is its easy to be a silent struggler but put on the face of a warrior, just so people don't see your real pain. That's what I have always done and yet maybe not as well as I think I did.
So, as I struggle another day between the silence of life on a vent and trying to stay afloat on just oxygen, I find another day floating by. Another day to drag myself from bed to chair, from chair to walking on a vent, to riding a bike. I find that each day is as hard as the last and easier than the day yet to come. I can only believe some force greater than me is driving this body because I am tired, bone tired. And if I had the strength I would say I am done, but I guess fighting hard is easier than doing nothing at all.
- Posted using BlogPress from my iPad
Tuesday, August 2, 2011
A Match!
Sarah got the call this evening. She has been telling everyone that August 2nd was the day her lungs would come.
She was right.
Now it is just a matter of the docs checking them out and making sure they are acceptable. Then on to surgery. Big night, big changes. I'll post more when I can.
She was right.
Now it is just a matter of the docs checking them out and making sure they are acceptable. Then on to surgery. Big night, big changes. I'll post more when I can.
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