I'm a horrible blogger! I apologize to anyone who was patiently waiting to hear my life on the other side. Before I go into that, I have to be a bit honest here and admit that I have been avoiding a lot of what consumed my former life, blogging included. I did such a 360 that I wanted to pretend, at least for a little while, that that part of me didn't exist. Seeing people still on the list, getting sicker and even passing away, was something I had an even harder time dealing with because of the guilt I felt for being given a second chance out of pure luck and nothing else. When I heard the news of a fellow cyster passing away, who was truly loved by all, it really affected me. And, although I didn't know her personally, I know she was a good person. I cut myself off. I haven't been following facebook that much either. I'm starting to hear a lot of good stories lately though, of people receiving their second chance and I've been slowly coming to terms with my old life and feel that I'm ready to face it, not with fear, but, with a better understanding of what it took to get where I am today. I need to be a beacon of hope to all those that wish to take this path. I need to be strong because that's what it takes to start AND finish this journey.
So I guess it's needless to say that I've been doing pretty awesome. I've been busy living instead of existing, which is what my life was like prior. I had a bit of rejection at my three month mark, which they promptly got rid of with a super high dose of prednisone (I forget the name of the IV drug). I didn't sleep for three days straight on that stuff. All the effects I felt in the first little while after having the transplant have long since gone and I feel pretty normal now. I still notice a little bit of a puffier face but that, and the scars of course, are the only tell tale signs that anything was ever wrong. Our lives here were literally getting back to normal. We had an awesome summer. Jeff and I bought a brand new (oxymoron here) century home. We LOVE it! We cut down a Christmas tree today and it suits the place perfectly, just like my new lungs. I guess everything that has been happening has been pretty symbolic in that it has all been fitting into place so perfectly.....until now. Yep, the shoe dropped and my family got wind of some pretty terrible news about my only sister, who happens to have cystic fibrosis as well but that is not actually the worse part. She was recently diagnosed with Hodgkins lymphoma cancer. That dreadful word. We must have been a cruel family in another life. She's a new mom, a caring wife and absolutely loving daughter and sister. She doesn't deserve this. Just as we take our boots off, and throw away our battle swords, we are called back to battle. But, fight we will and we WILL win this war. Our family is one tight unit, we are lucky for that. She is strong like bull! Hahaha. I love her so much that it hurts to think about all of this. I don't want to watch her suffer. I realize now how difficult is to be on this side, watching those you love go through something you have NO control over. It's a whole other dynamic of illness that I really have not yet experienced. I was not around when my grandmother got sick with cancer because I had moved away to college. I didn't witness her getting smaller, weaker and sicker by the day. This will be tough, to say the least. What will keep me going is knowing that she WILL be okay at the end of this. They say that if someone is to get cancer, this is the cancer to get because it has such a high survival rate. So no doubt she will come out on top, it's just going to be shitty getting there.
On a more positive note, my nephew is the cutest little guy ever! He makes us all smile and laugh everyday. I love having him in my life. I can't wait to be the cool, goofy aunt. I never thought I could love someone else's child so much but I've fallen for him like he's my own.
Well my computer is about to die so I have to cut this short, although I'm sure there's a lot more I could ramble about. I will really try to update more regularly now that I have started back in.
Congratulations to all those who have recently received your second chance. I have been reading your blogs and smiling knowing you will love it!! I'm so happy for all of you. And for those of you still waiting, your time WILL come so stay strong and keep fighting because It's sooooo worth it. I know you read that a lot when you're considering transplant and trust me, it's the truth.
Love you all,
Carla :)
Monday, November 28, 2011
Friday, July 1, 2011
Thank You Donor, Good Night!
So it's 17 days out of transplant and I'm feeling damn good. That's not to say that I feel perfect physically, yet, but it's coming along. I came home yesterday after they finally removed my last two chest tubes. I'm not even all that sure they should have come out as they were still leaking quite a bit, more than I thought the doctors liked but I'm putting my faith and trust in the very smart doctors, that they know what they are doing and not just pushing me out the door because it's a long weekend. Not that I was complaining! I'm so happy to be home sitting in my nice quiet, soft bed. Eating home cooked meals under the warm sun, only to finish the nights off around a fire watching fireworks with the ones I love. It pretty much doesn't get any better that this. And that is why, even though I'm having some side effects show up, I'm still very very happy. These sides effects include the fact that I'm up right now at 2:15 a.m. and cannot fall asleep for the life of me. This is after a day of getting up at 8:00 a.m. and not having a nap all day. Not to mention the fact that last night I didn't fall asleep until around 3:30 a.m. because I was having tremors that caused me to contract my muscles constantly. How am I NOT tired? As for the tremors, I'm guessing they were because I discontinued using any sort of narcotic and it was a withdrawal symptom. I was also sick to my stomach and throwing up all day yesterday. As for today, I'm quite puffy. I woke up feeling like a was run over across my chest. I took 2 Tylenol to alleviate that problem but everything still feels tight around my stomach and my chest, as if my new lungs are trying to push the borders of their new found home but there's no where for them to expand to. I push my stomach out to allow for more room and do some breathing exercises with my bong-like device to stretch my chest. It helps a little. I'm also retaining water now that the chest tubes aren't leaking the excess fluid so my face is noticeably bigger along with my belly and my legs, almost overnight. It's kinda freakin' me out, I'm not going to lie, but I know it will subside eventually so I'm trying not to worry too much. My family thinks I'm crazy, by the way, but I can see it in their faces that they see it too, they're just trying to be nice. That's a question I'd like to pose other post-transplanters, how long did it take you to notice the swelling go down? My prednisone was lowered today to 20mg and next week it will be 15mg.
I spent one hour today sorting all my pills into the cool pill dispenser the nice pharmacist gave me. It's makes it so much more convenient. I also went on two walks outside. No O2. No tubes. No tanks. Just my hubby, my dog, my mom, my sister and my nephew. Nice! I even found myself saying I was restless. I have to remind myself to slow down a lot. I want to do so much more but I have to wait for my body to catch up to what my mind can't wait to do. I AM only a little over two weeks out of major surgery, after all. But, I'm so excited. I've even emailed some people on Kijiji about buying their Bowflex machines because I can't wait to start working out again. I have been an avid exerciser since I was in high school so it just feels natural to work up a sweat to me. When I was sick I stopped working out accept the little bit I did at physio, because, well, I just couldn't. My legs are a little wobbly from the two weeks in the hospital but it could definitely be worse. Physio works! Oh another thing, the nerves in my hands and feet are extra sensitive now. They feel warm water as if it's scalding. By the way, I'm really not trying to complain here. I'm really just relaying my experiences. I'm extremely grateful to be on this side and I'll deal with all these things as they come.
I had my first Bronchoscopy last Tuesday. It wasn't as bad as I thought. The worst part was gargling that nasty freezing stuff. I didn't even gag when they shoved the swabs down my throat. I was pretty conscious too. They probably could have given me a bit more sedative although coming down off those is brutal. It knocks you right out. It was all women in the room and I felt very comfortable with the doctors and the nurse. They said everything looked like it was healing really well. I coughed up a little blood later that afternoon but it's normal to have a little after they biopsied.
What else? Things are progressing the way I figure they're supposed to for the most part. I'm regular now, which took a while because of the pain medications. I had to drink a fluid called 'GoLytle' a couple times in the hospital. I doesn't make you Go Lightly, it makes you Go Lots! Although today I noticed I didn't pee all that much which is why I'm sure I"m noticing the puffiness everywhere else. Should I be drinking less? I assume I should be drinking lots of water to help flush my system out.
Anyways my friends, I'm going to attempt to fall asleep again. I'll stop grossing you out with my excretion stories.
From a very elated girl with new lungs: Thank you donor, good night :)
I spent one hour today sorting all my pills into the cool pill dispenser the nice pharmacist gave me. It's makes it so much more convenient. I also went on two walks outside. No O2. No tubes. No tanks. Just my hubby, my dog, my mom, my sister and my nephew. Nice! I even found myself saying I was restless. I have to remind myself to slow down a lot. I want to do so much more but I have to wait for my body to catch up to what my mind can't wait to do. I AM only a little over two weeks out of major surgery, after all. But, I'm so excited. I've even emailed some people on Kijiji about buying their Bowflex machines because I can't wait to start working out again. I have been an avid exerciser since I was in high school so it just feels natural to work up a sweat to me. When I was sick I stopped working out accept the little bit I did at physio, because, well, I just couldn't. My legs are a little wobbly from the two weeks in the hospital but it could definitely be worse. Physio works! Oh another thing, the nerves in my hands and feet are extra sensitive now. They feel warm water as if it's scalding. By the way, I'm really not trying to complain here. I'm really just relaying my experiences. I'm extremely grateful to be on this side and I'll deal with all these things as they come.
I had my first Bronchoscopy last Tuesday. It wasn't as bad as I thought. The worst part was gargling that nasty freezing stuff. I didn't even gag when they shoved the swabs down my throat. I was pretty conscious too. They probably could have given me a bit more sedative although coming down off those is brutal. It knocks you right out. It was all women in the room and I felt very comfortable with the doctors and the nurse. They said everything looked like it was healing really well. I coughed up a little blood later that afternoon but it's normal to have a little after they biopsied.
What else? Things are progressing the way I figure they're supposed to for the most part. I'm regular now, which took a while because of the pain medications. I had to drink a fluid called 'GoLytle' a couple times in the hospital. I doesn't make you Go Lightly, it makes you Go Lots! Although today I noticed I didn't pee all that much which is why I'm sure I"m noticing the puffiness everywhere else. Should I be drinking less? I assume I should be drinking lots of water to help flush my system out.
Anyways my friends, I'm going to attempt to fall asleep again. I'll stop grossing you out with my excretion stories.
From a very elated girl with new lungs: Thank you donor, good night :)
Tuesday, June 21, 2011
So yesterday I had a rough day. I woke up fine but when I asked for pain pills from the nurse she gave me only one oxycoton and I needed two at the time. So the next time she ended up bringing me I.V. for pain and that was too much. I didn't know she did that and I didn't want that. I ended up so loopy that I thought I was speaking correctly but I wasn't. I slept almost the whole day. I couldn't even stay open when other people where here. It was also really scary at times because this was the first time I've had that happen to me and it can be frightening to sort of lose your brain. My vision is also starting to go which sucks but they said it should get better when I start to take less prednisone. I had diabetes before too so that's getting hard to manage but I knew that would happen. So needless to say I'm really trying not to take as much pain medication which resulted in a migraine today but that's going away too so all in all tonight should hopefully be good.
Today was pretty uneventful. I might get my chest tubes out soon though. They are leaking a lot less. That would be amazing. I'll keep updating for everyone.
Later, :)
Today was pretty uneventful. I might get my chest tubes out soon though. They are leaking a lot less. That would be amazing. I'll keep updating for everyone.
Later, :)
Sunday, June 19, 2011
Yep I got The Call!!
Ok I just tried to post my blog from last night and it didn't save so I lost a good two hours worth of writing. Sorry for the delay but I will attempt to keep updating as the days go by. This is what did save....
It's now 9p.m at night and I'm sitting here from my hospital bed at TGH (Toronto General Hospital). I'm sitting here in complete amazement that I am past 'The Call'. It's so beyond words that I'm literally scrambbling to write them and describe how I feel in the most perfect way possible. Obviously I'm elated and excited and also completely thankful to my donor and his/her family. I'm also in shock and afraid that I will jinx it by getting too excited. My family and myself have been knocking on every wood surface and then some since the day of the call. I'll try to go back to the beginning and give everyone a recap of my experience of this amazing gift. This is all my perspective on all of this so it may differ from others, obviously.
It was Monday night at 9:54 p.m. and a phone number crosses the T.V. screen with an unknown name and 416 number. Rogers displays our call display in this fashion so one of us will usually be shouting out who it is calling to calm those of us who know it's a long distance ring but can't see the T.V. I was in the living room with Mom, Jeff and Dan and we all looked at each other with the look of "This could be it".
And I will continue...
My mom answered the phone and I could tell it was the call. She handed me the phone with a small nod. The lady on the other end told me she was from the transplant team and that they had a new set of lungs for me if I wanted them. Hell ya I want them. I didn't say that but I could have. It was pretty standard, she asked me when I had eaten last and told me not to eat or drink anything and where to go when we got to the hospital. As soon as I got off the phone the scrambling started and of course, the tears. I hugged Jeff and mom and Dan proceeded to make phone calls and get stuff together while Jeff and I attempted to put, what I call my pointless, bag together. The only thing I needed was my body and my angels/spirit guides/whatever positive energy I could use and I trully believe I had a lot of those. Everything else can be brought later but I did bring my meds. I said goodbye to my fur babies and we all packed into the Rav (including Leslie, my sister) as the full moon above casted an eerily calm glow on all our faces. It could have been the fact that the last call I received was a false alarm and was therefore not allowing the concept of what could happen to really sink in but I just felt like it was going to be okay. I was still nervous but not as bad. We went to the ER when we got there at 1130 p.m. Traffic again was perfect and we zoomed there. They admitted me there and then sent us to get xrays and then on to the 7th floor to get an I.V. and some anti-rejection pills. The surgeon also came to talk to us as well. We were fully settled in and the nurses were done poking and proding me around 1:30 a.m. We knew the surgery wouldn't be until the morning which was the hardest part. I was waiting seven months up until then but those last six-seven hours were the worst. I tried to sleep while my entourage of family and friends found whatever refuge they could find in the waiting room. Finally after around 7:30 -8:00 a.m. the doctor came in to say it was a go. Reality then came flowing in in the form of an tsunami of tears from all our eyes. It was really going to happen. Wholly shit! And from that point on it went really fast. I didn't really have too much time to panic about it. They sent me down to the OR within 20 minutes of telling me it was a go. I waited with 2 family members at a time in surgical pre-op and was waving my last goodbye to them with a big smile on my face within 45 minutes. Everyone in the OR was super nice and comforting. They made me feel as comfortable as one could feel before knowing you will literally be leaving your life in their hands. I met with the two anesthiologists and one proceeded to give me my arterial line in the left while the other gave me my peripheral in my right hand. They both went off without a hitch. I could therefore relax because the pain and stressful stuff was over, for my part anyways, and the needles weren't even bad, mostly pressure. I told myself to just be at peace with the decision I made and know that my grandparents and even Jeff's Pop and grandpa were all there with me, looking over me. I sent a big bout of positive energy and love into the universe, to my family and friends who would now have to bare the burden of waiting. During this whole process, we all couldn't help but think of the poor family who had just lost their loved one and were having to say goodbye. We definitely sent our gratitude and love. Such a gracious act of kindness. It makes me believe in the good in this universe all over again.
The next time 'I' remember waking up it was sunny and around 9:30 (so I was told) and while I knew where I was, I was confused by the time. I was wondering how it could be 9:30 at night when it was still sunny?! I was then informed that I had missed a whole day. It was in fact 9:30 a.m. Wednesday and although I was awake on Tuesday afternoon, I don't remember any of it. I was motioning to my family with gestures and attempting to write stuff on paper but it was jumbled to say the least. Apparently it was pretty funny. I'm just glad I didn't say anything too bad (or incriminating...you never know what little trinkets of truth might slip from your semi-conscious mind. I guess I don't have any so that's good!)
So Wednesday I awoke with the breathing tube and NG tube, (I think that's what it's called) all four chest tubes plus all the lines for I.V.s and blood gases. I was still pretty dopey though so it wasn't bothering me too much. I was able to write better too. I was not in any pain. I had my trusty little PAC pump (again, I think that's what it was called) that pumped morphene into me whenever I needed it. I used it pretty liberally as I was told not to let the pain get too much ahead of m4 but I also didn't want to go hog wild. That's the balance I'm trying to find now that I'm on oral Oxycodones. If I let the pain get too bad I won't breath as deeply but if I take too much it bungs me up. I can get the meds every two hours right now if I need them but I've actually been able to wait up to four with no problems thus far. It was only a couple of hours before when 'I' remember waking on Wednesday to when they actually took the breathing tube out. The RMT came in to try removing a balloon type piece of the tube but she couldn't take that out without me gasping too much so she just said that she would take it out all together once my levels reached the number they needed to be at. (My levels were at around a 12 and they needed to be around a 5, I think.) When it was getting close to those numbers I did start to get antsy but it happened fast. They were waiting for some of my family to be by my side. Once they got there, I was supposed to breath in and then breath out and cough while she pulled it out. It was relieving to have it out.
The NG tube was left in though so it was still difficult to swallow but I could talk a little at least. I was then taken to step down mid-day. I got up and walked around. My legs were a bit shaky and I was pretty nauseous but I made it with some help, all the way around the block. At this point I still couldn't take too big a breath in because of the chest tubes and the fact that the little lower aolveoli still aren't completely inflated yet. But I knew it was still better and it felt damn good :) My family was so overjoyed. I loved seeing them all so amazed and happy. I couldn't keep too much down accept liquids on the Wednesday and Thursday but by Friday afternoon, I was on a normal diet. I was hungry by then. The NG tube came out on Thursday mid-day. The catheter also came out and I had to get a blood transfusion because of a lower hemoglobin count. Just a single small bag though. I've also been low on Magnesium which they've been supplementing. The NG tube was not that bad it was just annoying so it was a relief to have it out. They also took out a couple more lines. On Friday afternoon I was moved to the 7th floor which is where I've been recuperating ever since. I had two chest tubes removed at that time and my arterial line.
For side affects so far I am pretty swollen but that's common and it's actually gone down a little. I'm also really itchy. I've been given Benadrehyl which helps but because my skin is also thinner, I've been getting random cuts and scrapes from scratching. Plus lots of bruising due to the Heparin injections. I'm really trying hard not to scratch but eeekk it's hard. I was throwing up Wednesday and Thursday but they gave me something for that too and I've been good ever since (again, knock, knock!!) It's now Sunday and breathing is even better and I'm getting more old junk up which is good. The other chest tubes will still be awhile longer but I'm okay with that. I'm just elated to be where I'm at right now. So thankful and happy and always smiling.
On the Friday night, there was a pretty devastating event that happened here and it shook me up emotionally. A guest in the hospital had just recently given her husband the gift of life by donating part of her liver to him. They both seemed to be doing fine and we had met them both when he came by to visit her (not too sure why they weren't in the same room?) Super nice people. At around 3:45 a.m. she was woken (and subsequently myself as well) to the news that her husband had gotten a blood clot that traveled to his brain and had rendered him on life-support. The doctor and nurses were informing her that she would have to go say good-bye and that there didn't appear to be anything they could do. It was sooooo hard to hear her pain. I was balling over on my side, trying to be inconspicuous but it was difficult. I just felt so bad for her and her family. I also felt somewhat guilty for my own positive experience which I know I can't, every case is different and every case has it's risk but it was hard. She was really strong though and I had gone down to give my condolences and some of her family was there. They were all pillars of strength as well as kind. They reminded me to stay strong and not let their tragedy get in the way of my healing. They understood that it was a freak accident and that she had done all that she could have done to try and save his life. She gave him the best gift she could have and she, at the very leas,t had the peace of mind to know that. This was just one of those things that happens, it may not have even been transplant related. There was nothing anyone could do. I send my love and positive energy to her and her family at this time. I wish them all the strength to get through this tough time. I want to walk away from that with knowledge that I may not know what fate will bring in the next while but I know that if anything bad does happen, I know I tried and that I"m at total peace with the decision I've made. I know it was the right one to make. I plan to just rejoice day by day and take the blips when they come. That's all anyone can do.
So now it's night time and the day flew by with visits and such. I'm tired and will be hitting the sack soon but I plan to update more often. Thanks to you all for your love and support.
It's now 9p.m at night and I'm sitting here from my hospital bed at TGH (Toronto General Hospital). I'm sitting here in complete amazement that I am past 'The Call'. It's so beyond words that I'm literally scrambbling to write them and describe how I feel in the most perfect way possible. Obviously I'm elated and excited and also completely thankful to my donor and his/her family. I'm also in shock and afraid that I will jinx it by getting too excited. My family and myself have been knocking on every wood surface and then some since the day of the call. I'll try to go back to the beginning and give everyone a recap of my experience of this amazing gift. This is all my perspective on all of this so it may differ from others, obviously.
It was Monday night at 9:54 p.m. and a phone number crosses the T.V. screen with an unknown name and 416 number. Rogers displays our call display in this fashion so one of us will usually be shouting out who it is calling to calm those of us who know it's a long distance ring but can't see the T.V. I was in the living room with Mom, Jeff and Dan and we all looked at each other with the look of "This could be it".
And I will continue...
My mom answered the phone and I could tell it was the call. She handed me the phone with a small nod. The lady on the other end told me she was from the transplant team and that they had a new set of lungs for me if I wanted them. Hell ya I want them. I didn't say that but I could have. It was pretty standard, she asked me when I had eaten last and told me not to eat or drink anything and where to go when we got to the hospital. As soon as I got off the phone the scrambling started and of course, the tears. I hugged Jeff and mom and Dan proceeded to make phone calls and get stuff together while Jeff and I attempted to put, what I call my pointless, bag together. The only thing I needed was my body and my angels/spirit guides/whatever positive energy I could use and I trully believe I had a lot of those. Everything else can be brought later but I did bring my meds. I said goodbye to my fur babies and we all packed into the Rav (including Leslie, my sister) as the full moon above casted an eerily calm glow on all our faces. It could have been the fact that the last call I received was a false alarm and was therefore not allowing the concept of what could happen to really sink in but I just felt like it was going to be okay. I was still nervous but not as bad. We went to the ER when we got there at 1130 p.m. Traffic again was perfect and we zoomed there. They admitted me there and then sent us to get xrays and then on to the 7th floor to get an I.V. and some anti-rejection pills. The surgeon also came to talk to us as well. We were fully settled in and the nurses were done poking and proding me around 1:30 a.m. We knew the surgery wouldn't be until the morning which was the hardest part. I was waiting seven months up until then but those last six-seven hours were the worst. I tried to sleep while my entourage of family and friends found whatever refuge they could find in the waiting room. Finally after around 7:30 -8:00 a.m. the doctor came in to say it was a go. Reality then came flowing in in the form of an tsunami of tears from all our eyes. It was really going to happen. Wholly shit! And from that point on it went really fast. I didn't really have too much time to panic about it. They sent me down to the OR within 20 minutes of telling me it was a go. I waited with 2 family members at a time in surgical pre-op and was waving my last goodbye to them with a big smile on my face within 45 minutes. Everyone in the OR was super nice and comforting. They made me feel as comfortable as one could feel before knowing you will literally be leaving your life in their hands. I met with the two anesthiologists and one proceeded to give me my arterial line in the left while the other gave me my peripheral in my right hand. They both went off without a hitch. I could therefore relax because the pain and stressful stuff was over, for my part anyways, and the needles weren't even bad, mostly pressure. I told myself to just be at peace with the decision I made and know that my grandparents and even Jeff's Pop and grandpa were all there with me, looking over me. I sent a big bout of positive energy and love into the universe, to my family and friends who would now have to bare the burden of waiting. During this whole process, we all couldn't help but think of the poor family who had just lost their loved one and were having to say goodbye. We definitely sent our gratitude and love. Such a gracious act of kindness. It makes me believe in the good in this universe all over again.
The next time 'I' remember waking up it was sunny and around 9:30 (so I was told) and while I knew where I was, I was confused by the time. I was wondering how it could be 9:30 at night when it was still sunny?! I was then informed that I had missed a whole day. It was in fact 9:30 a.m. Wednesday and although I was awake on Tuesday afternoon, I don't remember any of it. I was motioning to my family with gestures and attempting to write stuff on paper but it was jumbled to say the least. Apparently it was pretty funny. I'm just glad I didn't say anything too bad (or incriminating...you never know what little trinkets of truth might slip from your semi-conscious mind. I guess I don't have any so that's good!)
So Wednesday I awoke with the breathing tube and NG tube, (I think that's what it's called) all four chest tubes plus all the lines for I.V.s and blood gases. I was still pretty dopey though so it wasn't bothering me too much. I was able to write better too. I was not in any pain. I had my trusty little PAC pump (again, I think that's what it was called) that pumped morphene into me whenever I needed it. I used it pretty liberally as I was told not to let the pain get too much ahead of m4 but I also didn't want to go hog wild. That's the balance I'm trying to find now that I'm on oral Oxycodones. If I let the pain get too bad I won't breath as deeply but if I take too much it bungs me up. I can get the meds every two hours right now if I need them but I've actually been able to wait up to four with no problems thus far. It was only a couple of hours before when 'I' remember waking on Wednesday to when they actually took the breathing tube out. The RMT came in to try removing a balloon type piece of the tube but she couldn't take that out without me gasping too much so she just said that she would take it out all together once my levels reached the number they needed to be at. (My levels were at around a 12 and they needed to be around a 5, I think.) When it was getting close to those numbers I did start to get antsy but it happened fast. They were waiting for some of my family to be by my side. Once they got there, I was supposed to breath in and then breath out and cough while she pulled it out. It was relieving to have it out.
The NG tube was left in though so it was still difficult to swallow but I could talk a little at least. I was then taken to step down mid-day. I got up and walked around. My legs were a bit shaky and I was pretty nauseous but I made it with some help, all the way around the block. At this point I still couldn't take too big a breath in because of the chest tubes and the fact that the little lower aolveoli still aren't completely inflated yet. But I knew it was still better and it felt damn good :) My family was so overjoyed. I loved seeing them all so amazed and happy. I couldn't keep too much down accept liquids on the Wednesday and Thursday but by Friday afternoon, I was on a normal diet. I was hungry by then. The NG tube came out on Thursday mid-day. The catheter also came out and I had to get a blood transfusion because of a lower hemoglobin count. Just a single small bag though. I've also been low on Magnesium which they've been supplementing. The NG tube was not that bad it was just annoying so it was a relief to have it out. They also took out a couple more lines. On Friday afternoon I was moved to the 7th floor which is where I've been recuperating ever since. I had two chest tubes removed at that time and my arterial line.
For side affects so far I am pretty swollen but that's common and it's actually gone down a little. I'm also really itchy. I've been given Benadrehyl which helps but because my skin is also thinner, I've been getting random cuts and scrapes from scratching. Plus lots of bruising due to the Heparin injections. I'm really trying hard not to scratch but eeekk it's hard. I was throwing up Wednesday and Thursday but they gave me something for that too and I've been good ever since (again, knock, knock!!) It's now Sunday and breathing is even better and I'm getting more old junk up which is good. The other chest tubes will still be awhile longer but I'm okay with that. I'm just elated to be where I'm at right now. So thankful and happy and always smiling.
On the Friday night, there was a pretty devastating event that happened here and it shook me up emotionally. A guest in the hospital had just recently given her husband the gift of life by donating part of her liver to him. They both seemed to be doing fine and we had met them both when he came by to visit her (not too sure why they weren't in the same room?) Super nice people. At around 3:45 a.m. she was woken (and subsequently myself as well) to the news that her husband had gotten a blood clot that traveled to his brain and had rendered him on life-support. The doctor and nurses were informing her that she would have to go say good-bye and that there didn't appear to be anything they could do. It was sooooo hard to hear her pain. I was balling over on my side, trying to be inconspicuous but it was difficult. I just felt so bad for her and her family. I also felt somewhat guilty for my own positive experience which I know I can't, every case is different and every case has it's risk but it was hard. She was really strong though and I had gone down to give my condolences and some of her family was there. They were all pillars of strength as well as kind. They reminded me to stay strong and not let their tragedy get in the way of my healing. They understood that it was a freak accident and that she had done all that she could have done to try and save his life. She gave him the best gift she could have and she, at the very leas,t had the peace of mind to know that. This was just one of those things that happens, it may not have even been transplant related. There was nothing anyone could do. I send my love and positive energy to her and her family at this time. I wish them all the strength to get through this tough time. I want to walk away from that with knowledge that I may not know what fate will bring in the next while but I know that if anything bad does happen, I know I tried and that I"m at total peace with the decision I've made. I know it was the right one to make. I plan to just rejoice day by day and take the blips when they come. That's all anyone can do.
So now it's night time and the day flew by with visits and such. I'm tired and will be hitting the sack soon but I plan to update more often. Thanks to you all for your love and support.
Saturday, June 11, 2011
PMS = Posting Mean Stuff, Reader Discretion is Advised
I should start by explaining my last post. I just re-read it and realized how nasty I might have sounded. I have been feeling 'funny' these last few days. Very moody and emotional and I didn't know why. I should also mention that I stopped taking my birth control, I can't even remember how long ago, and my period had not come back to date. Well yesterday mother nature finally let my body catch up to itself. Oh fun! I was kind of excited none the less because it meant that maybe, just maybe, when I get my new lungs having a baby wouldn't be an impossibility. I don't think I could carry it but I would be open to having a surrogate carry it for us. It's still a long way from my thoughts at this time but at least the door isn't completely closed just yet.
So I may have been a little dramatic the other day. I can't apologize though because that would mean I should be censoring my blogs and I don't think that's the point of these things.
Anywhooo, my cf clinic was pretty straight forward. It was super humid and hot that day and it felt as if weights were in my chest. My pft numbers were .8 something L, around 28%. So it really hasn't changed that much. That's good. They sprung a blood gas on me though. I HATE those things. Particularly because almost everyone that does it has to try a minimum of three times. I hated it even more this time because I didn't have any mental preparation. I truly believe it helps. The way clinic works in Kitchener is that we never usually have any tests other than a spirometry. I was looking forward to an easy, no pain, no exercise physio day. Well the girl missed it the first try, no surprise there, but thankfully the Dr. didn't make her try again. She must have seen the annoyance/pain in my face and felt bad for me. I was so relieved.
On a different note, I'm really trying to find five things everyday that make me happy. I've come to the conclusion that we are truly happy when we realize that what makes us happy isn't the big things but it's a sum of many little things that can sometimes appear big. So here are some for today:
1. I'm going to eat ribs at a favorite spot we found that makes awesome southern food
2. My mom's smile as she headed out to see GLEE at the ACC.
3. My comfy bed
4. My cats. They always put a smile on my face. (Well, accept when Corky gets caught by the cat police and I have to pay 90$ to bail him out. Urgh!) But, I'm happy to have him back.
5. Penny candy!! Jeff bought me some and it's hard to come by. No one sells it anywhere anymore.
Take care all of you,
Carla :)
So I may have been a little dramatic the other day. I can't apologize though because that would mean I should be censoring my blogs and I don't think that's the point of these things.
Anywhooo, my cf clinic was pretty straight forward. It was super humid and hot that day and it felt as if weights were in my chest. My pft numbers were .8 something L, around 28%. So it really hasn't changed that much. That's good. They sprung a blood gas on me though. I HATE those things. Particularly because almost everyone that does it has to try a minimum of three times. I hated it even more this time because I didn't have any mental preparation. I truly believe it helps. The way clinic works in Kitchener is that we never usually have any tests other than a spirometry. I was looking forward to an easy, no pain, no exercise physio day. Well the girl missed it the first try, no surprise there, but thankfully the Dr. didn't make her try again. She must have seen the annoyance/pain in my face and felt bad for me. I was so relieved.
On a different note, I'm really trying to find five things everyday that make me happy. I've come to the conclusion that we are truly happy when we realize that what makes us happy isn't the big things but it's a sum of many little things that can sometimes appear big. So here are some for today:
1. I'm going to eat ribs at a favorite spot we found that makes awesome southern food
2. My mom's smile as she headed out to see GLEE at the ACC.
3. My comfy bed
4. My cats. They always put a smile on my face. (Well, accept when Corky gets caught by the cat police and I have to pay 90$ to bail him out. Urgh!) But, I'm happy to have him back.
5. Penny candy!! Jeff bought me some and it's hard to come by. No one sells it anywhere anymore.
Take care all of you,
Carla :)
Tuesday, June 7, 2011
Oh so much time...to waste
Wow it's been awhile. So I've been on and off I.V.s since January with only a month, at the most, in between. Last time I was in there for a full week which is the longest stay I've ever had because they generally let me go home on home care after a few days. My base line is not all that great so when someone asks me how I'm feeling I want to say good but in truth I feel pretty shitty most of the time, I just feel better in comparison to how I felt before. I'm afraid that when people see me and I look ok and I say I'm good that they'll be asking themselves why the hell I won't get my ass off the couch. That is where my ass has burrowed for quite some time now and frankly, it's staying there. Thank god for all my little servants (and I mean that in the most endearing way guys), I'd be crying in a ditch right now if it weren't for them. I have tons of trivia games on my phone and computer that keep my mind going. Day in and day out, more of the same. I'm luckily one of those whose deterioration is happening slowly and the docs know that so I have a feeling my wait will be a long one. They know I have time to waste...away....slowly. Time to perfect my little ass nest. I go to my CF clinic tomorrow. I get to find out how my G.I. test went. The last time I was in the hospital I had to eat a high fat diet for six days and then collect my shit in a paint can for the last three. Oh how dignifying. This was all to check my pancreatic sufficiency. Back when I was really young they didn't put me on enzymes right away like my sister. I was able to gain weight normally and I didn't notice any g.i. effects as do most CFers. I was finally put on ECS 8s at the age of 12 apprx. I never thought I needed them. It didn't matter if I missed taking my enzymes, I never seemed to have problems in the stomach or bowel area. So one day I just stopped taking them to see what would happen and nothing happened. I could gain weight normally and still, no stomach problems. I told my doctors this and we just assumed that I was one of those lucky ones that didn't need enzymes. Well now that I'm on the transplant list the doctors want to confirm my pancreatic sufficiency because it will affect the dosing of the medications I will have to go on. Obviously someone whose pancreas doesn't work well at all will need a higher dose than others based on the fact that most of the medication isn't being absorbed. So I'm curious so see what the results are. I don't really expect too much from this visit. It's basically a follow up to stopping my I.V.s last week. I don't think I'll need more right away. Monday I had transplant clinic and that went ok. I don't really see the point of those things. They know where I stand. They talk to my doctors. I'm already on status 2, what more can they do anyways? It basically goes like this:
THEM - "How are you feeling?"
ME - "Same as before."
THEM - "So I see you needed IV meds again."
ME - "Yep. It has been a month."
THEM - "Okay well keep us posted."
Am I ever glad I waste my day for that. And let me comment on the bitch that greets us at the counter of this place. Why is that there are so many bitchy receptionists in this world. I know there are good ones too but there are A LOT of crappy ones and this one falls into the crappy pile. In a place where everyone she meets is dealing with so much shit you would think she would be able to look at her own life and think, "This isn't so bad." Maybe her life does suck though. Who knows but she's one snarly biatch. Our nick name for her is smiley.
Today was a rough day for humidity. It felt like the air weighed a ton. Physio went okay but I had to push myself extra hard to get through it.
Anyways, I'll try to update tomorrow on how clinic went.
Later,
luv ya,
Carla :)
THEM - "How are you feeling?"
ME - "Same as before."
THEM - "So I see you needed IV meds again."
ME - "Yep. It has been a month."
THEM - "Okay well keep us posted."
Am I ever glad I waste my day for that. And let me comment on the bitch that greets us at the counter of this place. Why is that there are so many bitchy receptionists in this world. I know there are good ones too but there are A LOT of crappy ones and this one falls into the crappy pile. In a place where everyone she meets is dealing with so much shit you would think she would be able to look at her own life and think, "This isn't so bad." Maybe her life does suck though. Who knows but she's one snarly biatch. Our nick name for her is smiley.
Today was a rough day for humidity. It felt like the air weighed a ton. Physio went okay but I had to push myself extra hard to get through it.
Anyways, I'll try to update tomorrow on how clinic went.
Later,
luv ya,
Carla :)
Sunday, May 8, 2011
Ok, That Was Scary!! (graphic)
So here's the deal. I've been on I.V. meds for about two and a half weeks and I've noticed that they're not really working that great anymore. They seemed to be doing something at the start but two nights ago I had a fever of 101.3 and my chest has been more sore. My coughs have also been more rough and phlegmy. Yum! Today, when we were visiting Jeff's cousin and his wife, I started coughing while holding their brand new baby girl. I knew from the watery consistency that it was blood but I didn't say anything because I didn't want to freak everyone out but I handed the baby over to daddy right away. It seemed to clot pretty quickly so I didn't worry too much as this has happened on many occasions before. Later, when Jeff and I were just starting to enjoy the movie the Blind Side, I started coughing up blood again but this time it was A LOT! The sink looked like a scene from Dexter. Not pretty!1 Of course my mom was panicking, as any concerned mom would do, and called 911 because of the amount of dark blood that just continued to come up. Like I said, I'm used to the occasional episode of blood puking but this was even starting to worry me. The first two to come downstairs was an ambiguous female and nerdy male whom I later found out were fire fighters which would explain the following: they asked me to check my blood sugar and switch from my oxygen to their oxygen (both at the same time by the way, not by design but it was happening so fast that things were being thrown at me: questions, meters, masks, you name it). The paramedics came down soon after. By this time I was sitting on the stairs and the blood has stopped spewing but I was extremely emotional and very intimidated. They switched me back to my air and were puzzled as to why I was checking my sugars. I felt super silly for having all this attention on me and the thought crossed my mind that I might be tying these nice guys up when they could be saving someone's life for real. We were worried though and they didn't seem to mind. I decided not to take the ride to the hospital with them because they would have been forced to take me to the Cambridge hospital which is not where all my doctors are. We made the decision that since it had stopped we would wait until the morning to call my nurse to see MY doctor ASAP. We were planning on doing this anyways. We only called 911 because we were concerned the bleeding was not going to stop. What good would it have done for me to sit in emerge with doctors that have no clue what to do anyways right? Jeff, my mom, Dan and I were all pretty shook up. Needless to say, I need those lungs sooner than later. Sorry for the crappy Mother's Day mom :(
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