Well... This Sucks.
Looks like I'll be heading to Sydney soon for another operation, strangely not kidney related but because the doctors think I may have a stenosis (narrowing) of a vein or artery, possibly more than one or worse a blood clot hanging around somewhere.
Main reason I'm getting this done is so that I don't have another stroke (last one was when I was 5, but thank christ I didn't become a vegetable or worse brain damaged) and that the current jump in my weight from about 58kg to 65kg in about 4 days, doesn't increase.
It's so bad, I've gotten stretch marks and my breasts have gone from a D14 to DD16 to E16 in a matter of days and they aren't they're usual selves... They've gone hard and lumpy from the fluid sitting just under the skin and they're..... Well, I love my boobs (seriously, sometimes I'll just go free in my room and look and go 'yay, they're so cool!') and these aren't my boobs. They're sore, lumpy and the skin is all irritated and heavy. And don't even get my started of the poor excuses for nipples. I have to wear extra padding as they're just ... SORE!!
My back doesn't know what's hit it. I've pulled a muscle in my shoulder (the whole shoulder blade is unbearable to touch), my neck hurts and oh my god my hips!!
I'm sick of being in fucking pain all the time too. Years of steroids, no growth, overweight from steroids (it'll take me a year to get to the weight I want and a few fucking days to heave it back on!!). And then I'm told that having an OxyContin tablet every night (5mg slow release) isn't good. ..... Do my doctors actually know what horrible side effects the OTHER medications do to me?! Just google Everolimus, Tacrolimus and just immunosuppressants in general. They're known to cause cancer, infertility and general a blades edge from death. And here are my doctors telling me one tablet that helps me cope with the fucking symptoms is bad for me.
It's ONE pain tablet. ONE!! If I'm in too much pain, and shaking and in tears because of it, mum will make me take another. And then throughout the day I'll take the useless panadole and sleep it off till I can move by myself without mums help (and yes, she marked as my 'career').
And the last thing that pisses me off. People assuming that just because you had a kidney transplant... You're back to normal, healthy, fighting fit and like everybody else.
No.
First off the kidney will only probably last from 18months to 14years. The constant drugs we take stop it from rejecting, but it also ruins the nephrons and just ... Well, pretty much destroys them.
Second, you're never going to be normal, simple tasks are a bitch because no matter how good the kidney function is, you're tired and I mean TIRED like you cannot keep your eyes open. I can do the housework (vacuum, dust, washing up and laundry. But then I'll sleep for the rest of the day because I'm exhausted.
Third, it's not a 'cure' a cure is where treatment is no longer needed because the aliment has disappeared or been destroyed. Technically, I'm still in kidney failure, it just depends how long I can escape dialysis before I get The Call.
Fourth is a bit like survives guilt. Someone HAD to die for me to live. I dont know anything about my donor family, only tha she was female and lived in Melbourne and I have the feeling she was going to go places. Sadly, she passed away (I don't know how either), donated her organs and saved up to 8 people. So, now, I feel I have to earn the right for this gift. Problem is, I'm not 8 years old and able to bounce back as much as younger Me could. I tried to die twice during the transplant, had to have 3 blood transfusions, then a few internal stitches came lose and I lost over 1L of blood. I was taken back into theater, they fixed me but I decided I was too good for the thing called breathing, so I was put on a respirator, they had to put another drain in my stomach, then I woke up and panicked. I didn't know I couldn't breath, I pulled the tube out of my mouth and promptly collapsed my right lung. When I awoke again I was restrained to the bed with a CPap mask forcing air into me so I wouldn't suffocate from my own stupidity. As I was saying... I will never know how to repay this symbol of the most selfless act during unbearable grief. And yes, I thank them every time it crosses my mind.
Five is just... Well, it's hard to explain. When on dialysis you life just stops. Literally. You don't go on holidays, because theres rarely anywhere that will do haemodialysis (or haemo for short) just because you want to go on a holiday. You can't really study because your brain is a siv on a good day. Then, a transplant! You are filled with new energy, the hormones are flowing and you want to get OUT THERE!! But not by yourself, no friends and family! To celebrate life, death, rebirth and 2nd chances. Only... While you've been stuck in a bubble everybody else and left without you. Interests have changed as well as personalities. You want to go out for one night for a catch up, but no and you can see they're making excuses to just not be around you. The first few times, you forgive, but when it happens time and time again, you begin to think "Well, why the fuck did I have a kidney transplant if I'm only going to be alone for doing something wrong that makes no one even want to answer texts or calls." and the thing is... You gave NO FUCKING IDEA WHAT YOU DID WRONG!! And then you find out that, well, yes, these friends and family have been hanging out... and quite fucking regularly, but obviously didn't want you to be there. And that's when you give up and just want the kidney to hurry up and reject so you can say no to dialysis, go home and eat two Banana's with a huge chocolate mike and a family tin of peaches. That way, you overdose on potassium and drift off to sleep and just pass away into oblivion.
Don't take my rant to scare you from donating any organs when you die. Just be aware that because someone receive the gift of life doesn't automatically mean they're cured and will resume where they left off. It's just not reality or the truth.
Anyway, will let you guys know on anymore progress in my quest to have a non-puffy face.
Main reason I'm getting this done is so that I don't have another stroke (last one was when I was 5, but thank christ I didn't become a vegetable or worse brain damaged) and that the current jump in my weight from about 58kg to 65kg in about 4 days, doesn't increase.
It's so bad, I've gotten stretch marks and my breasts have gone from a D14 to DD16 to E16 in a matter of days and they aren't they're usual selves... They've gone hard and lumpy from the fluid sitting just under the skin and they're..... Well, I love my boobs (seriously, sometimes I'll just go free in my room and look and go 'yay, they're so cool!') and these aren't my boobs. They're sore, lumpy and the skin is all irritated and heavy. And don't even get my started of the poor excuses for nipples. I have to wear extra padding as they're just ... SORE!!
My back doesn't know what's hit it. I've pulled a muscle in my shoulder (the whole shoulder blade is unbearable to touch), my neck hurts and oh my god my hips!!
I'm sick of being in fucking pain all the time too. Years of steroids, no growth, overweight from steroids (it'll take me a year to get to the weight I want and a few fucking days to heave it back on!!). And then I'm told that having an OxyContin tablet every night (5mg slow release) isn't good. ..... Do my doctors actually know what horrible side effects the OTHER medications do to me?! Just google Everolimus, Tacrolimus and just immunosuppressants in general. They're known to cause cancer, infertility and general a blades edge from death. And here are my doctors telling me one tablet that helps me cope with the fucking symptoms is bad for me.
It's ONE pain tablet. ONE!! If I'm in too much pain, and shaking and in tears because of it, mum will make me take another. And then throughout the day I'll take the useless panadole and sleep it off till I can move by myself without mums help (and yes, she marked as my 'career').
And the last thing that pisses me off. People assuming that just because you had a kidney transplant... You're back to normal, healthy, fighting fit and like everybody else.
No.
First off the kidney will only probably last from 18months to 14years. The constant drugs we take stop it from rejecting, but it also ruins the nephrons and just ... Well, pretty much destroys them.
Second, you're never going to be normal, simple tasks are a bitch because no matter how good the kidney function is, you're tired and I mean TIRED like you cannot keep your eyes open. I can do the housework (vacuum, dust, washing up and laundry. But then I'll sleep for the rest of the day because I'm exhausted.
Third, it's not a 'cure' a cure is where treatment is no longer needed because the aliment has disappeared or been destroyed. Technically, I'm still in kidney failure, it just depends how long I can escape dialysis before I get The Call.
Fourth is a bit like survives guilt. Someone HAD to die for me to live. I dont know anything about my donor family, only tha she was female and lived in Melbourne and I have the feeling she was going to go places. Sadly, she passed away (I don't know how either), donated her organs and saved up to 8 people. So, now, I feel I have to earn the right for this gift. Problem is, I'm not 8 years old and able to bounce back as much as younger Me could. I tried to die twice during the transplant, had to have 3 blood transfusions, then a few internal stitches came lose and I lost over 1L of blood. I was taken back into theater, they fixed me but I decided I was too good for the thing called breathing, so I was put on a respirator, they had to put another drain in my stomach, then I woke up and panicked. I didn't know I couldn't breath, I pulled the tube out of my mouth and promptly collapsed my right lung. When I awoke again I was restrained to the bed with a CPap mask forcing air into me so I wouldn't suffocate from my own stupidity. As I was saying... I will never know how to repay this symbol of the most selfless act during unbearable grief. And yes, I thank them every time it crosses my mind.
Five is just... Well, it's hard to explain. When on dialysis you life just stops. Literally. You don't go on holidays, because theres rarely anywhere that will do haemodialysis (or haemo for short) just because you want to go on a holiday. You can't really study because your brain is a siv on a good day. Then, a transplant! You are filled with new energy, the hormones are flowing and you want to get OUT THERE!! But not by yourself, no friends and family! To celebrate life, death, rebirth and 2nd chances. Only... While you've been stuck in a bubble everybody else and left without you. Interests have changed as well as personalities. You want to go out for one night for a catch up, but no and you can see they're making excuses to just not be around you. The first few times, you forgive, but when it happens time and time again, you begin to think "Well, why the fuck did I have a kidney transplant if I'm only going to be alone for doing something wrong that makes no one even want to answer texts or calls." and the thing is... You gave NO FUCKING IDEA WHAT YOU DID WRONG!! And then you find out that, well, yes, these friends and family have been hanging out... and quite fucking regularly, but obviously didn't want you to be there. And that's when you give up and just want the kidney to hurry up and reject so you can say no to dialysis, go home and eat two Banana's with a huge chocolate mike and a family tin of peaches. That way, you overdose on potassium and drift off to sleep and just pass away into oblivion.
Don't take my rant to scare you from donating any organs when you die. Just be aware that because someone receive the gift of life doesn't automatically mean they're cured and will resume where they left off. It's just not reality or the truth.
Anyway, will let you guys know on anymore progress in my quest to have a non-puffy face.