Today I thought about going over the fun side effects of the transplant and the meds I'm on. It's something I haven't really spoken about since transplant and I thought it would be good to get people to understand the interesting effects the pills can take on a persons body.
After Transplant I was on a drug called Cyclosporine, this is the first Anti rejection drug everyone goes on. It's the staple because I believe it's the strongest and works the best. It's not always the best though for people.
When I was switched to Oral Cyclo, things got interesting. Now, before I go on, let me explain what the doctors want a normal persons drug levels to be at. A normal person should be around 300-450 if I remember correctly for Cyclo. That's normal.
Me on the other hand, I'm not normal and so that never worked for my body. My drug levels would be 66 one day and 600 the next. Not one day was even close to the same as another while I was on the drug and because of that, the side effects from it hit me like a ton of bricks. Not as bad as some people I know but still pretty bad. I got extremely emotional and would freak out over every little thing and say the most hurtful things I possibly could. I don't know why I would say shit that would hurt people because I'm not like that. I don't get emotional unless I'm pushed to an extreme edge.
But because my drug levels finally became what the doctors found "Acceptable" they sent me home on it.
So, if you remember right, I was also on T3s at this time and after a month of T3s, I got so constipated that I ended up in the hospital and wasn't allowed to eat any food but I still had to take my meds including Cyclo, which is a fucking strong ass drug that MUST be taken with food. So because of that, my levels ended up going sky high. They never told me my exact levels but I know my body well enough to know that they were extremely high up there.
That's when I got the seizures, broke my back, ect. You've read the story. After those seizures they switched me to something called Prograf. It's the number 2 Anti rejection med they try when people have complications with Cyclo.
Proper levels on Prograf are between 5 and 10, I'm told. I'm usually around those numbers but some days, those I like to call "Bad days", I am like 15+. That's high for Prograf and I start to feel the effects hardcore.
I'm very moody, I'm very irritable, I get these dumbass thoughts in my head, and I start to shake like you wouldn't believe. On most of the bad days I just get extreme shakes. Nothing to bad. Does tend to be a bit of a pain in the ass but I try to deal.
On those special days where I do become the other things though. It gets bad. Not one person in my life seems to notice the change from logical smartass, to unlogical asshole. It bothers me actually, and instead of people being understanding, they just push me further. My family is really bad for it and they never just leave me alone. They push and push and push and make me say things I'd never say when I was clear of thought. It pisses me off so much.
And then I tend to make up those stupid scenarios in my mind. Like recently. Normally, my Birthdays are always about just having my friends over and having a blast, I never cared about presents but because my levels have been really high the last two weeks, I started having these thoughts I never had. I started getting pissed off that only a small handful of people got me anything. I've been doing the same birthday for 8 years. I never expected gifts from friends but this year I ended up freaking out on my friends and doing shit I never do.
And again, instead of people noticing this unexpected change and just ignoring it or trying to talk to me about it, they pushed me further and I then got worse and worse.
I feel more level headed now because I feel my levels are evening out but the damage has already been done.
Those are just the side effects I've had to deal with though. And there are much worse side effects too that can happen. I can get skin cancer, something that has always bothered me in my mind since the first day I read the book and it said what a high chance there was of getting it.
The other side effects that thankfully I've had few and far between are, Back pain(Kind of hard to tell this one though); constipation; diarrhea; dizziness; headache; joint pain; loss of appetite(Hard to notice this one); nausea(I get this quiet often and it's such a pain in the ass); stomach pain or upset; trouble sleeping(Another hard to notice one with my back pain); vomiting(And again, another one I get often); weakness.
So ya, there is some fun side effect history for you. I apologize for rambling, I tend to do it a lot but thanks for reading.
Tuesday, November 29, 2011
Tuesday, November 22, 2011
Happy Birthday To Me
So, yesterday was my Birthday and I'mma do something different. Instead of writing just about my past, I think I'll explain some things.
This birthday was a special birthday to me and it wasn't because of anything normally special. I didn't meet my true love on this day, I didn't turn 1/4th a Century old, nothing like that really. It's special for a special reason.
You see, when I turned 23 last year, I thought it to be my last birthday. Yesterday proved me wrong and I'm so thankful it did.
But what made me think that was a few things.
First being my Coma of Feb 2010. When I awoke from that Coma, everyone, and I mean everyone told me that I should have died and that kind of talk hit me hard. It was then that I had giving up on truly enjoy life. I gave up on expecting anything but I didn't give up on life. I may have given up on truly being happy but I would never give up on life. I may have been so sick that I couldn't see anything good but I was determined to live each and every day till I died.
And then my 23rd Birthday came last year and I was so sick I had trouble keeping up the strong face infront of my friends and family. In my mind, at the time, I knew that I wouldn't live to see 24. I couldn't laugh without coughing up black phlegm at the dinner and at the end of the dinner I was coughing up lots of blood. I couldn't even make it to the after dinner nerdy events that I usually do on my Birthday.
It was like a tradition on my Birthdays for the last 8 years. We'd go to Dinner, which was paid for by my Mother, and it was always the same place too. It's a Japanese Steak House where they cook the food infront of you. It's called Itchiban here and it's my favorite place to eat in the city. After dinner we'd go over to either my house or my friends place and do various things. Watch Anime, play video games, play Dungeons and Dragons, Magic The Gathering, ect. It's fun.
But last year I could barely make it back to my Car after the dinner. And that's why I thought I'd never live to have another Birthday.
This year though, it was amazing. Same thing as always. Only a few friends got my presents, like every year, I didn't cough once, which on it's own is enough to bring me to tears of happiness, we laughed, and again, no coughs from laughing, we told amazing stories, and the chef tried to drown my in Sake. I did a couple Sake shots where I'd tilt my head back and he'd pour the bottle of Sake into my mouth. The first shot was about 1 and a half shots of Sake. The second one though....good lord. I think that was like 5-6 shots in one go. Then the next time I drank Sake I did a Double Sake shot bomb which was awesome. He stacked a Sake Shot on a Sake Shot on a Japanese beer. I drank the whole thing in one go.
And sadly that's where the sad part of the night came in.
Before I go on there is something you need to know. I can't get drunk. I've never been drunk. I have no idea what it's like. Because of my disease I don't absorb alcohol properly. My first time ever drinking was when I turned 18. I drank 23 bottles of Alex Keiths beer and an entire bottle of Vodka. I didn't feel a thing. At first I though I was just a good heavy drinker but it turned out a little different. The next time I drank was 3 years ago in Jamaica. I went on New Years and I had a whole resort of people giving me Jamaican Rum for a solid 8 hours. I can't even begin to count how many shots I had that night but I didn't even feel a buzz. The only thing that happened to me was I started to fart a bit.
So that was the only crappy thing about that night. While all my friends have hilarious stories of the times they been drunk. I got nothing.
Other than that, the was my best Birthday ever. Not because of all that, it added to the enjoyment but it wasn't because of it.
It's because I got a Birthday that I didn't see having. If you've read enough of these, then hopefully you can understand just how sick I was so my thinking back then was understandable.
So ya, hope you enjoyed this post and I'll keep posting them.
This birthday was a special birthday to me and it wasn't because of anything normally special. I didn't meet my true love on this day, I didn't turn 1/4th a Century old, nothing like that really. It's special for a special reason.
You see, when I turned 23 last year, I thought it to be my last birthday. Yesterday proved me wrong and I'm so thankful it did.
But what made me think that was a few things.
First being my Coma of Feb 2010. When I awoke from that Coma, everyone, and I mean everyone told me that I should have died and that kind of talk hit me hard. It was then that I had giving up on truly enjoy life. I gave up on expecting anything but I didn't give up on life. I may have given up on truly being happy but I would never give up on life. I may have been so sick that I couldn't see anything good but I was determined to live each and every day till I died.
And then my 23rd Birthday came last year and I was so sick I had trouble keeping up the strong face infront of my friends and family. In my mind, at the time, I knew that I wouldn't live to see 24. I couldn't laugh without coughing up black phlegm at the dinner and at the end of the dinner I was coughing up lots of blood. I couldn't even make it to the after dinner nerdy events that I usually do on my Birthday.
It was like a tradition on my Birthdays for the last 8 years. We'd go to Dinner, which was paid for by my Mother, and it was always the same place too. It's a Japanese Steak House where they cook the food infront of you. It's called Itchiban here and it's my favorite place to eat in the city. After dinner we'd go over to either my house or my friends place and do various things. Watch Anime, play video games, play Dungeons and Dragons, Magic The Gathering, ect. It's fun.
But last year I could barely make it back to my Car after the dinner. And that's why I thought I'd never live to have another Birthday.
This year though, it was amazing. Same thing as always. Only a few friends got my presents, like every year, I didn't cough once, which on it's own is enough to bring me to tears of happiness, we laughed, and again, no coughs from laughing, we told amazing stories, and the chef tried to drown my in Sake. I did a couple Sake shots where I'd tilt my head back and he'd pour the bottle of Sake into my mouth. The first shot was about 1 and a half shots of Sake. The second one though....good lord. I think that was like 5-6 shots in one go. Then the next time I drank Sake I did a Double Sake shot bomb which was awesome. He stacked a Sake Shot on a Sake Shot on a Japanese beer. I drank the whole thing in one go.
And sadly that's where the sad part of the night came in.
Before I go on there is something you need to know. I can't get drunk. I've never been drunk. I have no idea what it's like. Because of my disease I don't absorb alcohol properly. My first time ever drinking was when I turned 18. I drank 23 bottles of Alex Keiths beer and an entire bottle of Vodka. I didn't feel a thing. At first I though I was just a good heavy drinker but it turned out a little different. The next time I drank was 3 years ago in Jamaica. I went on New Years and I had a whole resort of people giving me Jamaican Rum for a solid 8 hours. I can't even begin to count how many shots I had that night but I didn't even feel a buzz. The only thing that happened to me was I started to fart a bit.
So that was the only crappy thing about that night. While all my friends have hilarious stories of the times they been drunk. I got nothing.
Other than that, the was my best Birthday ever. Not because of all that, it added to the enjoyment but it wasn't because of it.
It's because I got a Birthday that I didn't see having. If you've read enough of these, then hopefully you can understand just how sick I was so my thinking back then was understandable.
So ya, hope you enjoyed this post and I'll keep posting them.
Tuesday, November 15, 2011
Back to Back
I think today I shall tell everyone the amazing tale about my fractured and permanently fucked spine...
When I was discharged on Dec 23rd cause my drug levels finally stabilized, I was on Tylenol 3s for pain. For those who don't know. T3s are just regular Tylenol with Codine in it or so I was told. Drug users/dealers use them a lot to get stoned but I never noticed any kind of high while on them.
That was my issue. I never noticed anything while on them. I wasn't high, I wasn't getting pain relief, nothing. I tell my Doctor this and instead of switching me to something else. Like say, the pain killer I was on while in hospital, or anything else, he just told me to up the dose. I believe I was taking 2 T3s every 4 hours to try and help with my chest pain.(Trust me, when you have your chest ripped open, and your lungs replaced, that wound hurts for a while.)
So, I was taking that dose of "Pain Killers" for a solid Month before things started to go wrong. My best friend was getting ready to move to the states and I was feeling a little Constipated. I didn't think much of it at the time. We've all been backed up. But well, we went for a fair well Lunch and I was unable to eat anything my stomach was hurting so bad.
See, I was so backed up that I couldn't eat a damn thing. Just moving was hurting and of course, to deal with the pain, I took some T3s. Bad idea. I leave the Lunch and head home, figure I'll sleep if off.
I awoke 2 hours later in even more pain. Finally, I said fuck up and drove to the Emerg. I tell them the pain has been growing at a consistent rate for about 2 days. They X-Ray, feel my stomach, ect, ect. They inform me that I'm so backed up that if I were to eat another meal I'd vomit shit, actually shit, poop, crap, doodoo, from my mouth. They quickly admit me to the Hospital.
The first 5 days sucked. It was a lot of no eating, lots of fingers up my ass to try and wiggle anything out, I drank lots of what I call "Liquid Draino"(I forgot the actual term of it. It was some gallon of something that I had to drink that SHOULD have flushed me out....it didn't), and a bunch of other stuff I care to not recall.
Day 5 rolls around and I finally have a shit. It wasn't much of a shit, it was greasy and barely anything in the bowl but it was my first shit in a week. I was happy cause 1 shit meant many more and that meant less doctors fingers up my ass.
I wanna stop real quick and just make something clear. Having so many god damn fingers up my ass at all hours was fucking painful and annoying. My ass was meant for nothing to go up it. That is a fucking exit and exit only. I was woken up MANY times at 5am just so doctors and student doctors could feel around up my ass. Fucking never again.
So, I poo'd. Things are going good and my stomach gets clearer and clearer. I'm doing one last hour walk around the Hospital(Remember, I still have to keep my new lungs in shape) and I was climbing some stairs back to my ward, I started to feel Dizzy. I tell my Doctors this and I express to them that I would like to stay an extra day to be safe. That was only have the reason to be honest. The other half was that if I went home, that would mean that my life would finally be in my hours full throttle and I was scared. I had spent so long living in the Doctors hands that in my mind, I wasn't ready. It also would have killed me with what happened next. I'd have been home alone.
I awake the next morning feeling great. I wake up to my breakfast of 30 pieces of Bacon at my side(I miss the Breakfast). I eat about 15 pieces before I started to feel Dizzy again. I figure I'm just a bit tired and I lied down. Figured I'd get another hour rest before I head home.
Jokes on me, that didn't happen.
You see, for me, I re-awoke 36 hours in ICU with tubes in my throat. Confused and pissed off. I don't remember anything that follows.
What had actually happened was I was out walking and talking to the Nurses by their desk. I had fallen to the ground and had my first seizure. Wasn't a big on I'm told. I had my second one in my Bed. I don't know how much time had gone between the first and second. They wheel me down to the MRI or CT(Again, I don't remember. So much of that is extreme hazy for me). About 10 minutes into the test I started having my third and final seizure. This was the biggest of the 3. A Grand Mal or something.
During the Grand Mal, I had aspirated into my lungs and caused my spine to fracture into two spots.
When I awoke in the ICU, I was fucking pissed off. I was supposed to be going home. This was complete bullshit for me. It was unfair.
They moved me back to my normal ward when I was release from ICU. I get wheeled up there and I try to go to the Nurse's desk to chat them up and find out what happened with the seizures but my back hurts like I couldn't believe so I spent a lot of my recovery time in my bed. I tried to tell my Nurses that my back was killing me but no one believed me. Not a single nurse or doctor believed me at the time and they would only give me hot pads for my back. It got to the point where that despite the pain, I was talking my ass to the kitchen to heat up my own pads because I needed that little bit of relief.
After a week of non-stop pain, non-stop telling the doctors of pain, no sleep, loss of appetite, and my mood changing from happy to extremely bitchy they finally ordered a test of my back. Well, few days later the results come in and guess what they see?
THAT MY FUCKING BACK IS FUCKED UP. I had and have two compound fractures in my T6 and T7. That's roughly between the bottom of my shoulder blades. They basically say to me "Our bad, here's some shitty pain meds" and kicked me out the door.
And that's the story of my back. It hasn't healed. I'm told it won't heal, and they still refuse to give me anything decent for pain. I don't sleep at night. I have days where I vomit from pain. I can't do as much exercise as I want to and I am extremely bitchy because even my own family forgets I'm in pain and makes me do shit I shouldn't be doing.
Wanna know the icing to the cake though? I meant with Pain Clinic about my back and pain meds and they have flat out accused me of being a drug addict DESPITE there being proof that my back is messed up and AND they refuse to give me any proper pain meds to help with the pain.
So ya, that's that and if I ever come off as a bitchy asshole. Assume it's a horrible pain day.
Thanks for reading. till next time~
When I was discharged on Dec 23rd cause my drug levels finally stabilized, I was on Tylenol 3s for pain. For those who don't know. T3s are just regular Tylenol with Codine in it or so I was told. Drug users/dealers use them a lot to get stoned but I never noticed any kind of high while on them.
That was my issue. I never noticed anything while on them. I wasn't high, I wasn't getting pain relief, nothing. I tell my Doctor this and instead of switching me to something else. Like say, the pain killer I was on while in hospital, or anything else, he just told me to up the dose. I believe I was taking 2 T3s every 4 hours to try and help with my chest pain.(Trust me, when you have your chest ripped open, and your lungs replaced, that wound hurts for a while.)
So, I was taking that dose of "Pain Killers" for a solid Month before things started to go wrong. My best friend was getting ready to move to the states and I was feeling a little Constipated. I didn't think much of it at the time. We've all been backed up. But well, we went for a fair well Lunch and I was unable to eat anything my stomach was hurting so bad.
See, I was so backed up that I couldn't eat a damn thing. Just moving was hurting and of course, to deal with the pain, I took some T3s. Bad idea. I leave the Lunch and head home, figure I'll sleep if off.
I awoke 2 hours later in even more pain. Finally, I said fuck up and drove to the Emerg. I tell them the pain has been growing at a consistent rate for about 2 days. They X-Ray, feel my stomach, ect, ect. They inform me that I'm so backed up that if I were to eat another meal I'd vomit shit, actually shit, poop, crap, doodoo, from my mouth. They quickly admit me to the Hospital.
The first 5 days sucked. It was a lot of no eating, lots of fingers up my ass to try and wiggle anything out, I drank lots of what I call "Liquid Draino"(I forgot the actual term of it. It was some gallon of something that I had to drink that SHOULD have flushed me out....it didn't), and a bunch of other stuff I care to not recall.
Day 5 rolls around and I finally have a shit. It wasn't much of a shit, it was greasy and barely anything in the bowl but it was my first shit in a week. I was happy cause 1 shit meant many more and that meant less doctors fingers up my ass.
I wanna stop real quick and just make something clear. Having so many god damn fingers up my ass at all hours was fucking painful and annoying. My ass was meant for nothing to go up it. That is a fucking exit and exit only. I was woken up MANY times at 5am just so doctors and student doctors could feel around up my ass. Fucking never again.
So, I poo'd. Things are going good and my stomach gets clearer and clearer. I'm doing one last hour walk around the Hospital(Remember, I still have to keep my new lungs in shape) and I was climbing some stairs back to my ward, I started to feel Dizzy. I tell my Doctors this and I express to them that I would like to stay an extra day to be safe. That was only have the reason to be honest. The other half was that if I went home, that would mean that my life would finally be in my hours full throttle and I was scared. I had spent so long living in the Doctors hands that in my mind, I wasn't ready. It also would have killed me with what happened next. I'd have been home alone.
I awake the next morning feeling great. I wake up to my breakfast of 30 pieces of Bacon at my side(I miss the Breakfast). I eat about 15 pieces before I started to feel Dizzy again. I figure I'm just a bit tired and I lied down. Figured I'd get another hour rest before I head home.
Jokes on me, that didn't happen.
You see, for me, I re-awoke 36 hours in ICU with tubes in my throat. Confused and pissed off. I don't remember anything that follows.
What had actually happened was I was out walking and talking to the Nurses by their desk. I had fallen to the ground and had my first seizure. Wasn't a big on I'm told. I had my second one in my Bed. I don't know how much time had gone between the first and second. They wheel me down to the MRI or CT(Again, I don't remember. So much of that is extreme hazy for me). About 10 minutes into the test I started having my third and final seizure. This was the biggest of the 3. A Grand Mal or something.
During the Grand Mal, I had aspirated into my lungs and caused my spine to fracture into two spots.
When I awoke in the ICU, I was fucking pissed off. I was supposed to be going home. This was complete bullshit for me. It was unfair.
They moved me back to my normal ward when I was release from ICU. I get wheeled up there and I try to go to the Nurse's desk to chat them up and find out what happened with the seizures but my back hurts like I couldn't believe so I spent a lot of my recovery time in my bed. I tried to tell my Nurses that my back was killing me but no one believed me. Not a single nurse or doctor believed me at the time and they would only give me hot pads for my back. It got to the point where that despite the pain, I was talking my ass to the kitchen to heat up my own pads because I needed that little bit of relief.
After a week of non-stop pain, non-stop telling the doctors of pain, no sleep, loss of appetite, and my mood changing from happy to extremely bitchy they finally ordered a test of my back. Well, few days later the results come in and guess what they see?
THAT MY FUCKING BACK IS FUCKED UP. I had and have two compound fractures in my T6 and T7. That's roughly between the bottom of my shoulder blades. They basically say to me "Our bad, here's some shitty pain meds" and kicked me out the door.
And that's the story of my back. It hasn't healed. I'm told it won't heal, and they still refuse to give me anything decent for pain. I don't sleep at night. I have days where I vomit from pain. I can't do as much exercise as I want to and I am extremely bitchy because even my own family forgets I'm in pain and makes me do shit I shouldn't be doing.
Wanna know the icing to the cake though? I meant with Pain Clinic about my back and pain meds and they have flat out accused me of being a drug addict DESPITE there being proof that my back is messed up and AND they refuse to give me any proper pain meds to help with the pain.
So ya, that's that and if I ever come off as a bitchy asshole. Assume it's a horrible pain day.
Thanks for reading. till next time~
Wednesday, November 9, 2011
Back To Healing
Righto, back to my recovery. I apologize for being a little late. Having been doing too well lately due to my back. Sleep has been very little.
Where was I?....right, the recovery unit.
After that whole piss smell mishap things.....stabled out.
I'd push myself hard in my recovery. I'd do laps on the ward every few hours. I started out doing 2 laps, than 4, than 8, than I stopped counting and went for time. I ended up doing 2 hours of hard walking every couple of hours. I was in extreme pain while doing this but every step I took I reminded myself that I had to earn this gift. My body wouldn't just accept it.
I'll be honest here, I kept telling myself that only to deal with the pain, the fact is, I loved being able to walk again. After every session I'd go into my room and cry my ass off because I wasn't coughing anymore. I wasn't spitting up blood, black phlegm or coughing to the point where I vomit and then pass out. Not at all. It was the best thing I had felt in a lot time.
Between rests, some of the Nurses proved that they deserve their shitty pay checks. A few of the incidents that I can remember were as follows.
The first one, while I was still on IV was when the heat in my room broke and got hotter and hotter in my room. The nurses who were working at the time were like 80 year old Portuguese women who couldn't see 2 feet in front of them. I should also mention it's like 11am so it's bright as hell out on the ward.
Now, the nurses come in my room to see what's wrong, they look at the thermostat and mess with it a bit. They aren't sure if you had to twist it right or left to lower the heat, they tried both. Then one of the Nurses had a brilliant idea of getting a flash light. A FUCKING FLASH LIGHT AT 11AM. She thought that would help them see and the whole while I'm saying "Call Maintenance, call maintenance". They didn't listen to me for atleast an hour and the whole time the heat in my room is climbing, getting hotter and hotter.
I couldn't exactly just leave my room till they fixed it because I was fresh out of the ICU and germs were still an issue for me.
So, after an hour of them being the dumbest people I've ever seen, they finally call Maintenance. He walks in, looks at the thing, goes "Oh", walks off, does something, fixes it. The heat shoots back down to normal in minutes.
The next incident I came remember was when I was being switched from IV Anti-rejection to Oral. My first time taking my Oral pills is at night, I'm panicking myself because I'm scared as shit. My life is literally in my own hands. If I miss one pill session this early I could probably cause my body to go into rejection. That's not easy on the mind.
I'm getting more and more nervous as the night goes on and gets closer to my pill time.
When the time comes, I ask the Nurse for a drink and tell her that Water isn't enough to help swallow these massive pills.
She leaves, comes back, and I shit you not. She hands me SOMEONE ELSES FUCKING HALF DRANK drink. I ask her if she was serious and she nods like it's okay. This is like 4 days out of surgery too, mind you. This wasn't 2 weeks or something where my body had a chance to get some immune system back. This is 4 days of having high dose immune suppressants. You ever see the look on someones face that screamed "I'm a giant idiot"? This lady had that look.
After that, the only issues I had was with this bitch of a floor manager lady who hated me and said the dumbest shit. See, I hated sitting in my room and doing nothing. The TVs are from the 80s, you have to pay like 17 dollars a day for cable, and when you have fresh lungs, and the ability to do shit without all the bad stuff, you generally don't want to sit down.
So I'd always walk around the Nurses desk and chat with the nurses. I'm a very social person. I love learning more about their job and I know it helps to have a patient not be a giant pain in the ass but this floor lady told me that, and again, I shit you not.
"You can't stand around the desk all day, you'll over hear confidential information about patients, but you can sit in a chair"
Ya....those were her actual words. I remember this because when that bitch of a lady forced me back to my room I'd write everything down on my laptop. I wanted to keep track of everything that happened so I could always tell the tales correctly.
But ya, I wasn't allowed to stand as that would overhear confidential stuff where as sitting would render my ears useless and thus not overhear a damn thing.
There were some other minor incidents with that lady but they weren't anything too bad, the biggest one I can remember aside from the one I just said was when I was still barely able to walk long distances, I had asked a Nurse to come with me to the Cafe incase anything happened and to help me wheel my IV pole around. She said they were too busy to accompany me and that I would have to wait 2 hours. I said fuck that and went on my own. The walk wasn't so bad, what was bad was wheeling my heavy ass IV pole down a ramp(This was like day two on the Recovery Ward).
Having a ripped open sternum being held together by a wire and staples wasn't not the best for having upper body strength.. That was probably the second most painful thing I did after transplant. The first of course was being forced to cough when I was back in the ICU.
After about 7 days on the Recovery Ward I was ready to go home but just as they take my blood for that day they find my body isn't taking the main Oral Anti-rejection med too well and my drug levels were extremely low. If I remember right, they want the level to be, I think, 300-500, my level that day was 66. It scared the shit out of me. I thought I was going to go into rejection. So they decided to keep me a little longer to make sure my body evened out.
Instead of keeping me on the recovery ward, they sent me to the Respiratory ward cause they needed the Beds. Nothing wrong with that.
But I'll leave it here for now. Don't want to make these too long so people get bored.
Till next time my thousands of readers!
Where was I?....right, the recovery unit.
After that whole piss smell mishap things.....stabled out.
I'd push myself hard in my recovery. I'd do laps on the ward every few hours. I started out doing 2 laps, than 4, than 8, than I stopped counting and went for time. I ended up doing 2 hours of hard walking every couple of hours. I was in extreme pain while doing this but every step I took I reminded myself that I had to earn this gift. My body wouldn't just accept it.
I'll be honest here, I kept telling myself that only to deal with the pain, the fact is, I loved being able to walk again. After every session I'd go into my room and cry my ass off because I wasn't coughing anymore. I wasn't spitting up blood, black phlegm or coughing to the point where I vomit and then pass out. Not at all. It was the best thing I had felt in a lot time.
Between rests, some of the Nurses proved that they deserve their shitty pay checks. A few of the incidents that I can remember were as follows.
The first one, while I was still on IV was when the heat in my room broke and got hotter and hotter in my room. The nurses who were working at the time were like 80 year old Portuguese women who couldn't see 2 feet in front of them. I should also mention it's like 11am so it's bright as hell out on the ward.
Now, the nurses come in my room to see what's wrong, they look at the thermostat and mess with it a bit. They aren't sure if you had to twist it right or left to lower the heat, they tried both. Then one of the Nurses had a brilliant idea of getting a flash light. A FUCKING FLASH LIGHT AT 11AM. She thought that would help them see and the whole while I'm saying "Call Maintenance, call maintenance". They didn't listen to me for atleast an hour and the whole time the heat in my room is climbing, getting hotter and hotter.
I couldn't exactly just leave my room till they fixed it because I was fresh out of the ICU and germs were still an issue for me.
So, after an hour of them being the dumbest people I've ever seen, they finally call Maintenance. He walks in, looks at the thing, goes "Oh", walks off, does something, fixes it. The heat shoots back down to normal in minutes.
The next incident I came remember was when I was being switched from IV Anti-rejection to Oral. My first time taking my Oral pills is at night, I'm panicking myself because I'm scared as shit. My life is literally in my own hands. If I miss one pill session this early I could probably cause my body to go into rejection. That's not easy on the mind.
I'm getting more and more nervous as the night goes on and gets closer to my pill time.
When the time comes, I ask the Nurse for a drink and tell her that Water isn't enough to help swallow these massive pills.
She leaves, comes back, and I shit you not. She hands me SOMEONE ELSES FUCKING HALF DRANK drink. I ask her if she was serious and she nods like it's okay. This is like 4 days out of surgery too, mind you. This wasn't 2 weeks or something where my body had a chance to get some immune system back. This is 4 days of having high dose immune suppressants. You ever see the look on someones face that screamed "I'm a giant idiot"? This lady had that look.
After that, the only issues I had was with this bitch of a floor manager lady who hated me and said the dumbest shit. See, I hated sitting in my room and doing nothing. The TVs are from the 80s, you have to pay like 17 dollars a day for cable, and when you have fresh lungs, and the ability to do shit without all the bad stuff, you generally don't want to sit down.
So I'd always walk around the Nurses desk and chat with the nurses. I'm a very social person. I love learning more about their job and I know it helps to have a patient not be a giant pain in the ass but this floor lady told me that, and again, I shit you not.
"You can't stand around the desk all day, you'll over hear confidential information about patients, but you can sit in a chair"
Ya....those were her actual words. I remember this because when that bitch of a lady forced me back to my room I'd write everything down on my laptop. I wanted to keep track of everything that happened so I could always tell the tales correctly.
But ya, I wasn't allowed to stand as that would overhear confidential stuff where as sitting would render my ears useless and thus not overhear a damn thing.
There were some other minor incidents with that lady but they weren't anything too bad, the biggest one I can remember aside from the one I just said was when I was still barely able to walk long distances, I had asked a Nurse to come with me to the Cafe incase anything happened and to help me wheel my IV pole around. She said they were too busy to accompany me and that I would have to wait 2 hours. I said fuck that and went on my own. The walk wasn't so bad, what was bad was wheeling my heavy ass IV pole down a ramp(This was like day two on the Recovery Ward).
Having a ripped open sternum being held together by a wire and staples wasn't not the best for having upper body strength.. That was probably the second most painful thing I did after transplant. The first of course was being forced to cough when I was back in the ICU.
After about 7 days on the Recovery Ward I was ready to go home but just as they take my blood for that day they find my body isn't taking the main Oral Anti-rejection med too well and my drug levels were extremely low. If I remember right, they want the level to be, I think, 300-500, my level that day was 66. It scared the shit out of me. I thought I was going to go into rejection. So they decided to keep me a little longer to make sure my body evened out.
Instead of keeping me on the recovery ward, they sent me to the Respiratory ward cause they needed the Beds. Nothing wrong with that.
But I'll leave it here for now. Don't want to make these too long so people get bored.
Till next time my thousands of readers!
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