On Saturday I spent two hours working on my sisters triptic, I have put a lot of hours into it and really thought I was mostly done...I was wrong.
The last time I painted on it was in September I believe when I was in the hospital but I hit a wall and refused to work on it further, I believed I would one day finish it outside the hospital. I certainly believed I would and I am nearly there, at this point anyone who can mix two colors together could finish it but I am so happy to see it come together as it has.
Mostly though I am excited to be able to focus on something beyond my daily goings on related to my health. I am also able to focus enough to read, part of this has to do with going off the heavy drugs and sleeping pill. Been four nights since I took a sleeping pill, doesn't mean my sleeping is great but I am hoping the quality is better when I finally do fall asleep. Last night I finally gave up after an hour and a half of tossing and turning and went to the couch, fell asleep instantly and stayed there until four am, go figure.
Well I am off to the mall for some activity, aka, black Friday return. Wanting a pair of black boots, can't seem to find what I want except on other peoples feet!
By the way where is the sun hiding these days?
Monday, November 28, 2011
Saturday, November 26, 2011
The Good, The Bad (but could be worse), and the Ugly
As with everything in life there are multiple facets, as I have found to be the case with new healthy lungs.
The good, by far the best, part of this situation is no ventilator, no suctioning volumes of crap a.k.a pus from my lungs every hour like a drippy faucet that won't quit, no vinyl mattress to sleep on, no nurses at three in the morning to hook up a med, on the same note no stupid iv pumps randomly screaming that they need attention just the moment you fell asleep after laying awake for two hours, and of course the ability to enjoy things again like reading, or watching tv, or playing the wii. Also, I am absorbing all my drugs almost too good, that is new. Oh I forgot the best, I can now make it to the basement, well more importantly back up the 16 steps, yay!
The bad (but could be worse), did I mention no vinyl bed or nurses waking me, the bad is I still can't sleep without drugs, still have to get up at least once if not twice to pee during the night which is super annoying especially if I have just fallen asleep, and up until yesterday I dreamt a nurse was at my bedside during the night (no nurse in particular just a nurse), trying to gain weight but avoiding too much salt, and now too much potassium. On the vent unit with my CF lungs I was always low potassium, now I have the opposite problem and it is sad how many things I like to eat are medium to high in potassium. Of course the elephant that still sits on my chest daily from being stretched/contorted in a very unnatural manner, and the sternum that is wired back together, but I say it could be worse.
The ugly, basically that comes down to the reaction to the drugs, the shakiness, which I am afraid will effect my art and detail ability (we will find out today), the broken out or acne skin, I hate that but hope it I'll go away in time, and my favorite 'ugly' the socks I wear to keep down the swelling in my ankles, if you are familiar with Mama, from the show Mama's Family and her rolled down brown knee highs, that's what these are like. Hopefully I won't have to wear them this summer with my shorts, sundress or worse yet, my swimsuit.
So, there you have it! I think my lists probably could be longer but that's what I am thinking of today. I am off to do something productive, maybe even creative, while I continue to consume my eight daily magnesium pills, yup, I may not be low in potassium but I make up for it in magnesium depletion.
Have a great day, enjoy those Christmas decorations as they start going up today.
The good, by far the best, part of this situation is no ventilator, no suctioning volumes of crap a.k.a pus from my lungs every hour like a drippy faucet that won't quit, no vinyl mattress to sleep on, no nurses at three in the morning to hook up a med, on the same note no stupid iv pumps randomly screaming that they need attention just the moment you fell asleep after laying awake for two hours, and of course the ability to enjoy things again like reading, or watching tv, or playing the wii. Also, I am absorbing all my drugs almost too good, that is new. Oh I forgot the best, I can now make it to the basement, well more importantly back up the 16 steps, yay!
The bad (but could be worse), did I mention no vinyl bed or nurses waking me, the bad is I still can't sleep without drugs, still have to get up at least once if not twice to pee during the night which is super annoying especially if I have just fallen asleep, and up until yesterday I dreamt a nurse was at my bedside during the night (no nurse in particular just a nurse), trying to gain weight but avoiding too much salt, and now too much potassium. On the vent unit with my CF lungs I was always low potassium, now I have the opposite problem and it is sad how many things I like to eat are medium to high in potassium. Of course the elephant that still sits on my chest daily from being stretched/contorted in a very unnatural manner, and the sternum that is wired back together, but I say it could be worse.
The ugly, basically that comes down to the reaction to the drugs, the shakiness, which I am afraid will effect my art and detail ability (we will find out today), the broken out or acne skin, I hate that but hope it I'll go away in time, and my favorite 'ugly' the socks I wear to keep down the swelling in my ankles, if you are familiar with Mama, from the show Mama's Family and her rolled down brown knee highs, that's what these are like. Hopefully I won't have to wear them this summer with my shorts, sundress or worse yet, my swimsuit.
So, there you have it! I think my lists probably could be longer but that's what I am thinking of today. I am off to do something productive, maybe even creative, while I continue to consume my eight daily magnesium pills, yup, I may not be low in potassium but I make up for it in magnesium depletion.
Have a great day, enjoy those Christmas decorations as they start going up today.
Wednesday, November 23, 2011
Being Thankful
Been busy lately with the clinic and haven't been sure what exactly to write about, maybe that's a good thing for once.
I was in clinic Tuesday and saw a doctor on transplant I haven't met before, I was a little nervous as it is difficult to meet someone new when the same people have been part of your care for the last while. My one doctor has been with me for over 10 years now and he can read me like a book, which is probably a good and bad thing, he calls me trouble and it makes me laugh inside every time. I have a tendency to ask a lot of questions, and worry pretty much about everything. It's a wonder I can make it through this without worrying myself crazy.
I was reading a post today of another CFer who had a transplant over a year ago, I went back to when she had the surgery to see her account of how she felt and coped in the weeks and months post transplant. She was so thankful just within days after her transplant it made me question how I was feeling. It isn't that I am not thankful it's just that I can't seem to wrap my head around this new life I have, or the fact that I have the lungs of someone else inside me. I think of the donor and I pray for their family and the fact that they made the decision to donate their organs as if they didn't I would still be sitting on the vent on MB6F, and only God knows how much longer I would have survived there.
This journey is unknown, many have done this before and have succeeded and there should be no reason I should think otherwise, but right now it is so hard to see the future. Between this constant pain in my chest, the elephant to seems to have taken residence right smack dab in the middle of my chest thanks to being cranked upon like a clamshell. So, even though I am not at a point where I am going to gush over the fact I have new lungs, and my life is so much better, and I can't wait for the future to begin. I rather take this hours at a time, as some day I hope I will tell you that this was the best decision I ever made in my life. Right now I can't say that but I can say that I am so thankful to all the people who have keep me in their thoughts and prayers these months, and that I am off the vent and that I get to see my family in the home setting and celebrate thanksgiving at the table with my parents and husband. It maybe a quiet Thanksgiving but none the less thankful to be celebrating just being alive, for today being alive is enough when every ounce of me wants to sit and relax and let the pain wash away but I push through another minute another hour so I can one day look back and be fully thankful for all this pain as it will one day bring me to enjoying more things that I haven't in years. Things like taking a walk and being told to slow down, watching my nieces and nephews grow, visiting friends and family, and taking a vacation that I haven't done in five years, that is my hope.
I will continue to push forward as there are too many people have hopes for me that probably are greater than my own and I owe them to push onward.
Wishing you all a beautiful, tasty, thankful Thanksgiving.
I was in clinic Tuesday and saw a doctor on transplant I haven't met before, I was a little nervous as it is difficult to meet someone new when the same people have been part of your care for the last while. My one doctor has been with me for over 10 years now and he can read me like a book, which is probably a good and bad thing, he calls me trouble and it makes me laugh inside every time. I have a tendency to ask a lot of questions, and worry pretty much about everything. It's a wonder I can make it through this without worrying myself crazy.
I was reading a post today of another CFer who had a transplant over a year ago, I went back to when she had the surgery to see her account of how she felt and coped in the weeks and months post transplant. She was so thankful just within days after her transplant it made me question how I was feeling. It isn't that I am not thankful it's just that I can't seem to wrap my head around this new life I have, or the fact that I have the lungs of someone else inside me. I think of the donor and I pray for their family and the fact that they made the decision to donate their organs as if they didn't I would still be sitting on the vent on MB6F, and only God knows how much longer I would have survived there.
This journey is unknown, many have done this before and have succeeded and there should be no reason I should think otherwise, but right now it is so hard to see the future. Between this constant pain in my chest, the elephant to seems to have taken residence right smack dab in the middle of my chest thanks to being cranked upon like a clamshell. So, even though I am not at a point where I am going to gush over the fact I have new lungs, and my life is so much better, and I can't wait for the future to begin. I rather take this hours at a time, as some day I hope I will tell you that this was the best decision I ever made in my life. Right now I can't say that but I can say that I am so thankful to all the people who have keep me in their thoughts and prayers these months, and that I am off the vent and that I get to see my family in the home setting and celebrate thanksgiving at the table with my parents and husband. It maybe a quiet Thanksgiving but none the less thankful to be celebrating just being alive, for today being alive is enough when every ounce of me wants to sit and relax and let the pain wash away but I push through another minute another hour so I can one day look back and be fully thankful for all this pain as it will one day bring me to enjoying more things that I haven't in years. Things like taking a walk and being told to slow down, watching my nieces and nephews grow, visiting friends and family, and taking a vacation that I haven't done in five years, that is my hope.
I will continue to push forward as there are too many people have hopes for me that probably are greater than my own and I owe them to push onward.
Wishing you all a beautiful, tasty, thankful Thanksgiving.
Friday, November 18, 2011
Long day, longer to come
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.
- Posted using BlogPress from my iPad
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.
- Posted using BlogPress from my iPad
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
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