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 :)
hey carla, i was puffy for a good six months!
ReplyDeletesometimes on days when i did more, or i was on my feet all day, my feet would swell up!
my feet were so sensative i didn't even like sheets going on them. having a shower was AWFUL. it would feel one part of my back with the water, and then once it hit my feet, it would be a totally different temperature, but that eventually went away too, not completely for me (one year later) but for the most part i never complain about it anymore after about 6 months. after 3 months i notcied a difference but after 6 was great for me. mind you i had ICU neuropahty sooo my legs and body were kind of out of it and not walking very well at all.
i had chest pain too for a long long time, like as if something was pushing on my chest, a ton of bricks was sitting on it, and i couldn't expand my chest far enough out. that went away by three months too i would say. glad your out of the hospital so quick! i was in for 5 weeks with one chest tube that just kept leaking!
Drink more lady. Water purifies the body and helps you heal, and the more you pee the less swollen you will be. And stay away from salt, especially this early on. Glad you are getting better and better and stronger and stronger. What a summer of progress it will be for you!
ReplyDeleteYes drink more, they tried to cut down my intake to take down my water retention but it never helped. After tallking to a few other post txers I asked the doctor to let me drink more and they agreed to give it a shot. And there ya go with in a week or two I lost allmost all my excess water. So happy for ya and being able to start your new wonderful life with new pink lungs!
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