<b>I will copy and post what i wrote on Risa's txbuddies.. It was a tough clinic visit..
Lots to think about in the coming weeks.. My tx doctor is going to talk with the lungdocs from the hospital, to see if they can find maybe anything more that is going on, or maybe what they can do for me and i will have more tests.. And otherwise.. well that will be in the text really...</b>
I had my appt with my tx doc yesterday...
It was not really what i hoped for, they can't do anything for me really.
Except for retransplant me... The lungs the i got are bad, my doc said.. They didn't know that when they examined them. But when my first lung was out during my tx and they got the new lungs out there was oedema(?) in the back of them.. So they knew that the lungs were worse then they could see at first.. But there was no way back... That had never happened before.
My doc said they greatly improved the quantity of my life. Tx saved my life, without it i wouldn't have lived for too long anymore. Most likely not until another pair was found for me...
The quality of my life is better but not by far as what it shoud be. The lungs are worse enough that i can't build up stamina, that with every little thing that comes along i fall back again.
I could live on for years like this. But if i want this?.. I wish i could live life like everyone my age. Or maybe not even like going out at night but somewhat of a life. Live on my own, have my own things, things i can do too. Go to university..
But now i still live with my parents, and to really build up my life i would have to move out, move away from here. And i won't be able to do that..
My doc said that they sometimes tx patients with emphysema (what i have in my new lungs) for their quality of life.. And that that is what they could do now... Nothing much else...
He said i'm too young for this really..
He said that the team has talked about it ones, that what they should do if it is possible is retx me..
So now he's going to sit around the table with the other tx doc and with the surgeon, the surgeon who did my tx. They have to sit down and really talk about it. If it's the best option, if it is an option in the first place. They have to go over my first tx, talk about the complications (not that there were that much i think).. The biggest is that with tx the have to sort of cut around the heart, around the sack around the heart. Well with lung tx they try to cut around it a bit but with CF lungs that is most of the time not possible. They have to cut really close to the heartsack(?).. And that is what they had to do with me too.
With a second tx they would cut a little closer to the heart but now they would have to use that same spot as there won't be any space left. And this would mean a bigger risk. Along with other things ofcourse..
But this is what i have to think over now.. If i want it.. i think i do... But when i would want it? That is the biggest question i think.. I don't like how it is, and in my opinion it can really only get better. Or really worse ofcourse, that i won't make it.. But i'm thinking i should take that chance..
My fev1 is not that low, 1.5 liter... But it is holding me back somehow..
The nurse practitioner just called me while i am writing this.. They want to do some more tests, an exercise test is one of them. On the bike where they can measure everything.. So we'll have see how that goes.. And maybe more tests.. As it's all just strange..I will hear more with my next visit..
Just wanted to let you all know
Where i'm at.. what is going on overhere
The good news, i have been feeling better the past few days. No 'episodes' since sunday. So hopefully i am getting over whatever it was.
Love, Marjolein
Lots to think about in the coming weeks.. My tx doctor is going to talk with the lungdocs from the hospital, to see if they can find maybe anything more that is going on, or maybe what they can do for me and i will have more tests.. And otherwise.. well that will be in the text really...</b>
I had my appt with my tx doc yesterday...
It was not really what i hoped for, they can't do anything for me really.
Except for retransplant me... The lungs the i got are bad, my doc said.. They didn't know that when they examined them. But when my first lung was out during my tx and they got the new lungs out there was oedema(?) in the back of them.. So they knew that the lungs were worse then they could see at first.. But there was no way back... That had never happened before.
My doc said they greatly improved the quantity of my life. Tx saved my life, without it i wouldn't have lived for too long anymore. Most likely not until another pair was found for me...
The quality of my life is better but not by far as what it shoud be. The lungs are worse enough that i can't build up stamina, that with every little thing that comes along i fall back again.
I could live on for years like this. But if i want this?.. I wish i could live life like everyone my age. Or maybe not even like going out at night but somewhat of a life. Live on my own, have my own things, things i can do too. Go to university..
But now i still live with my parents, and to really build up my life i would have to move out, move away from here. And i won't be able to do that..
My doc said that they sometimes tx patients with emphysema (what i have in my new lungs) for their quality of life.. And that that is what they could do now... Nothing much else...
He said i'm too young for this really..
He said that the team has talked about it ones, that what they should do if it is possible is retx me..
So now he's going to sit around the table with the other tx doc and with the surgeon, the surgeon who did my tx. They have to sit down and really talk about it. If it's the best option, if it is an option in the first place. They have to go over my first tx, talk about the complications (not that there were that much i think).. The biggest is that with tx the have to sort of cut around the heart, around the sack around the heart. Well with lung tx they try to cut around it a bit but with CF lungs that is most of the time not possible. They have to cut really close to the heartsack(?).. And that is what they had to do with me too.
With a second tx they would cut a little closer to the heart but now they would have to use that same spot as there won't be any space left. And this would mean a bigger risk. Along with other things ofcourse..
But this is what i have to think over now.. If i want it.. i think i do... But when i would want it? That is the biggest question i think.. I don't like how it is, and in my opinion it can really only get better. Or really worse ofcourse, that i won't make it.. But i'm thinking i should take that chance..
My fev1 is not that low, 1.5 liter... But it is holding me back somehow..
The nurse practitioner just called me while i am writing this.. They want to do some more tests, an exercise test is one of them. On the bike where they can measure everything.. So we'll have see how that goes.. And maybe more tests.. As it's all just strange..I will hear more with my next visit..
Just wanted to let you all know
Where i'm at.. what is going on overhere
The good news, i have been feeling better the past few days. No 'episodes' since sunday. So hopefully i am getting over whatever it was.
Love, Marjolein