Tough clinic visit..

[catboogie]

marjolein,

i am so sad to hear this. i can't imagine how you must be feeling right now. i know you have had a lot of troubles since your transplant. i am glad that you have faith in your doctors and that they are now putting so much time and concern into deciding what's best for your situation.

i know you mentioned before about how the docs didn't know how bad your lungs were. now you are saying they knew there were problems but used their best judgment and went ahead anyway. this seems like it was the right thing to do. afterall, had they not, you may not be here to write this now!

i know it must be frustrating for you -- you wanted a chance after tx to do so many of the things you hadn't been able to and now you aren't really able to do them. i think it is awesome that you have the ambition to go to university, and to move away from home and to do things on your own! i hope that one day you can do all of these things. <img src="i/expressions/face-icon-small-smile.gif" border="0"> but at the same time, it will drive you mad if you think too much about what you want to get out of the future and not enough about what you are doing now or could be doing now.

i don't know what to tell you...sorry if i am going on and on. i can see you making either decision--to keep these lungs for a while or to try to get new ones. to keep these lungs means knowing you may have limits as to what you can achieve (physically). while you may feel like you are compromising your dreams, certainly there is stuff you CAN do--take courses over the internet, take some sort of part time job, do some type of work from home, live with another relative??? there are things you can do to change your life without getting new lungs. to me it seems so risky to go through another transplant when you don't really have to. (what do i know, i'm not a dr though!)

on the other hand, i can see how you might feel like you are owed a second chance that you never really got. and to keep on living like this is (you may think) not much better than how you lived before with CF lungs. but another tx could bring another set of issues... it is unpredictable; whereas now you have a good handle on what your problems are.

i just read all i wrote and it sounds like i'm really trying to convince you NOT to get a transplant. i guess that is just how i'm feeling right now about this. the decision is yours, and i will support you 100% in whatever you decide to do. please keep me posted about what the doctors say.

<img src="i/expressions/heart.gif" border="0">take care<img src="i/expressions/heart.gif" border="0">

 

[catboogie]

marjolein,

i am so sad to hear this. i can't imagine how you must be feeling right now. i know you have had a lot of troubles since your transplant. i am glad that you have faith in your doctors and that they are now putting so much time and concern into deciding what's best for your situation.

i know you mentioned before about how the docs didn't know how bad your lungs were. now you are saying they knew there were problems but used their best judgment and went ahead anyway. this seems like it was the right thing to do. afterall, had they not, you may not be here to write this now!

i know it must be frustrating for you -- you wanted a chance after tx to do so many of the things you hadn't been able to and now you aren't really able to do them. i think it is awesome that you have the ambition to go to university, and to move away from home and to do things on your own! i hope that one day you can do all of these things. <img src="i/expressions/face-icon-small-smile.gif" border="0"> but at the same time, it will drive you mad if you think too much about what you want to get out of the future and not enough about what you are doing now or could be doing now.

i don't know what to tell you...sorry if i am going on and on. i can see you making either decision--to keep these lungs for a while or to try to get new ones. to keep these lungs means knowing you may have limits as to what you can achieve (physically). while you may feel like you are compromising your dreams, certainly there is stuff you CAN do--take courses over the internet, take some sort of part time job, do some type of work from home, live with another relative??? there are things you can do to change your life without getting new lungs. to me it seems so risky to go through another transplant when you don't really have to. (what do i know, i'm not a dr though!)

on the other hand, i can see how you might feel like you are owed a second chance that you never really got. and to keep on living like this is (you may think) not much better than how you lived before with CF lungs. but another tx could bring another set of issues... it is unpredictable; whereas now you have a good handle on what your problems are.

i just read all i wrote and it sounds like i'm really trying to convince you NOT to get a transplant. i guess that is just how i'm feeling right now about this. the decision is yours, and i will support you 100% in whatever you decide to do. please keep me posted about what the doctors say.

<img src="i/expressions/heart.gif" border="0">take care<img src="i/expressions/heart.gif" border="0">

 

[catboogie]

marjolein,

i am so sad to hear this. i can't imagine how you must be feeling right now. i know you have had a lot of troubles since your transplant. i am glad that you have faith in your doctors and that they are now putting so much time and concern into deciding what's best for your situation.

i know you mentioned before about how the docs didn't know how bad your lungs were. now you are saying they knew there were problems but used their best judgment and went ahead anyway. this seems like it was the right thing to do. afterall, had they not, you may not be here to write this now!

i know it must be frustrating for you -- you wanted a chance after tx to do so many of the things you hadn't been able to and now you aren't really able to do them. i think it is awesome that you have the ambition to go to university, and to move away from home and to do things on your own! i hope that one day you can do all of these things. <img src="i/expressions/face-icon-small-smile.gif" border="0"> but at the same time, it will drive you mad if you think too much about what you want to get out of the future and not enough about what you are doing now or could be doing now.

i don't know what to tell you...sorry if i am going on and on. i can see you making either decision--to keep these lungs for a while or to try to get new ones. to keep these lungs means knowing you may have limits as to what you can achieve (physically). while you may feel like you are compromising your dreams, certainly there is stuff you CAN do--take courses over the internet, take some sort of part time job, do some type of work from home, live with another relative??? there are things you can do to change your life without getting new lungs. to me it seems so risky to go through another transplant when you don't really have to. (what do i know, i'm not a dr though!)

on the other hand, i can see how you might feel like you are owed a second chance that you never really got. and to keep on living like this is (you may think) not much better than how you lived before with CF lungs. but another tx could bring another set of issues... it is unpredictable; whereas now you have a good handle on what your problems are.

i just read all i wrote and it sounds like i'm really trying to convince you NOT to get a transplant. i guess that is just how i'm feeling right now about this. the decision is yours, and i will support you 100% in whatever you decide to do. please keep me posted about what the doctors say.

<img src="i/expressions/heart.gif" border="0">take care<img src="i/expressions/heart.gif" border="0">

 

[catboogie]

marjolein,

i am so sad to hear this. i can't imagine how you must be feeling right now. i know you have had a lot of troubles since your transplant. i am glad that you have faith in your doctors and that they are now putting so much time and concern into deciding what's best for your situation.

i know you mentioned before about how the docs didn't know how bad your lungs were. now you are saying they knew there were problems but used their best judgment and went ahead anyway. this seems like it was the right thing to do. afterall, had they not, you may not be here to write this now!

i know it must be frustrating for you -- you wanted a chance after tx to do so many of the things you hadn't been able to and now you aren't really able to do them. i think it is awesome that you have the ambition to go to university, and to move away from home and to do things on your own! i hope that one day you can do all of these things. <img src="i/expressions/face-icon-small-smile.gif" border="0"> but at the same time, it will drive you mad if you think too much about what you want to get out of the future and not enough about what you are doing now or could be doing now.

i don't know what to tell you...sorry if i am going on and on. i can see you making either decision--to keep these lungs for a while or to try to get new ones. to keep these lungs means knowing you may have limits as to what you can achieve (physically). while you may feel like you are compromising your dreams, certainly there is stuff you CAN do--take courses over the internet, take some sort of part time job, do some type of work from home, live with another relative??? there are things you can do to change your life without getting new lungs. to me it seems so risky to go through another transplant when you don't really have to. (what do i know, i'm not a dr though!)

on the other hand, i can see how you might feel like you are owed a second chance that you never really got. and to keep on living like this is (you may think) not much better than how you lived before with CF lungs. but another tx could bring another set of issues... it is unpredictable; whereas now you have a good handle on what your problems are.

i just read all i wrote and it sounds like i'm really trying to convince you NOT to get a transplant. i guess that is just how i'm feeling right now about this. the decision is yours, and i will support you 100% in whatever you decide to do. please keep me posted about what the doctors say.

<img src="i/expressions/heart.gif" border="0">take care<img src="i/expressions/heart.gif" border="0">

 

[catboogie]

marjolein,

i am so sad to hear this. i can't imagine how you must be feeling right now. i know you have had a lot of troubles since your transplant. i am glad that you have faith in your doctors and that they are now putting so much time and concern into deciding what's best for your situation.

i know you mentioned before about how the docs didn't know how bad your lungs were. now you are saying they knew there were problems but used their best judgment and went ahead anyway. this seems like it was the right thing to do. afterall, had they not, you may not be here to write this now!

i know it must be frustrating for you -- you wanted a chance after tx to do so many of the things you hadn't been able to and now you aren't really able to do them. i think it is awesome that you have the ambition to go to university, and to move away from home and to do things on your own! i hope that one day you can do all of these things. <img src="i/expressions/face-icon-small-smile.gif" border="0"> but at the same time, it will drive you mad if you think too much about what you want to get out of the future and not enough about what you are doing now or could be doing now.

i don't know what to tell you...sorry if i am going on and on. i can see you making either decision--to keep these lungs for a while or to try to get new ones. to keep these lungs means knowing you may have limits as to what you can achieve (physically). while you may feel like you are compromising your dreams, certainly there is stuff you CAN do--take courses over the internet, take some sort of part time job, do some type of work from home, live with another relative??? there are things you can do to change your life without getting new lungs. to me it seems so risky to go through another transplant when you don't really have to. (what do i know, i'm not a dr though!)

on the other hand, i can see how you might feel like you are owed a second chance that you never really got. and to keep on living like this is (you may think) not much better than how you lived before with CF lungs. but another tx could bring another set of issues... it is unpredictable; whereas now you have a good handle on what your problems are.

i just read all i wrote and it sounds like i'm really trying to convince you NOT to get a transplant. i guess that is just how i'm feeling right now about this. the decision is yours, and i will support you 100% in whatever you decide to do. please keep me posted about what the doctors say.

<img src="i/expressions/heart.gif" border="0">take care<img src="i/expressions/heart.gif" border="0">

 

[Marjolein]

Thank you Laura
I know i said that my doc didn't know about the problems at first. And that is still the truth really.. When they examined the donor, when the lungs were still there.. They couldn't find anything. x-ray was clear, blooggas was ok, the lungs looked good.. The medical history didn't show problems. The only thing was that my donor was older and had smoked a bit... With my situation, how rapidly my health was going down and how long it had been for this first pair of lungs that was available for me. Our backs were against the wall really... Doctors knew they had to take these lungs. Take the chance.
During the surgery they could see the lungs had the oedema in them. They had never seen that and that it wasn't like that when they accepted them, only just before they wanted to put the first lung in.. This showed they would probably be worse then they thought.. But still they didn't really know what it meant.
At this point there was really no way back...
Really the problems only showed in this year after my tx..

I am still happy they did it.. As you say, i'm still here, able to write this...
As i have the feeling we wouldn't have had a next chance, and that day, that was really the time. I felt it..

I know i can still do things. And i can still do more then i could in the years before.. I think a big part of this situation has to do with my age (like my doc says, you can do things that an older woman who lived and build up a life would maybe be satisfied with. Do small things, have a calm and easy life)... What i could and could not do in my teens.. What i still want to do.. Everyone of my friends moved away, are building a life somewhere. I would want that too.. But to be able to do that, i need to feel a lot better then i do. The circle around me is very small now. Ofcourse i have the internet, the phone. And my friends i see when they are on the island. But it's different. I want to broaden my horizon, but not only in my mid.. My life has been on hold for so so long now.. I really really want to live it now

Hopefully, all the docs they are going to have in the hospital now.. and maybe more tests, will show they have another option. I really hope that..

Hearing they have really been thinking of retransplant as an option was just very hard..

 

[Marjolein]

Thank you Laura
I know i said that my doc didn't know about the problems at first. And that is still the truth really.. When they examined the donor, when the lungs were still there.. They couldn't find anything. x-ray was clear, blooggas was ok, the lungs looked good.. The medical history didn't show problems. The only thing was that my donor was older and had smoked a bit... With my situation, how rapidly my health was going down and how long it had been for this first pair of lungs that was available for me. Our backs were against the wall really... Doctors knew they had to take these lungs. Take the chance.
During the surgery they could see the lungs had the oedema in them. They had never seen that and that it wasn't like that when they accepted them, only just before they wanted to put the first lung in.. This showed they would probably be worse then they thought.. But still they didn't really know what it meant.
At this point there was really no way back...
Really the problems only showed in this year after my tx..

I am still happy they did it.. As you say, i'm still here, able to write this...
As i have the feeling we wouldn't have had a next chance, and that day, that was really the time. I felt it..

I know i can still do things. And i can still do more then i could in the years before.. I think a big part of this situation has to do with my age (like my doc says, you can do things that an older woman who lived and build up a life would maybe be satisfied with. Do small things, have a calm and easy life)... What i could and could not do in my teens.. What i still want to do.. Everyone of my friends moved away, are building a life somewhere. I would want that too.. But to be able to do that, i need to feel a lot better then i do. The circle around me is very small now. Ofcourse i have the internet, the phone. And my friends i see when they are on the island. But it's different. I want to broaden my horizon, but not only in my mid.. My life has been on hold for so so long now.. I really really want to live it now

Hopefully, all the docs they are going to have in the hospital now.. and maybe more tests, will show they have another option. I really hope that..

Hearing they have really been thinking of retransplant as an option was just very hard..

 

[Marjolein]

Thank you Laura
I know i said that my doc didn't know about the problems at first. And that is still the truth really.. When they examined the donor, when the lungs were still there.. They couldn't find anything. x-ray was clear, blooggas was ok, the lungs looked good.. The medical history didn't show problems. The only thing was that my donor was older and had smoked a bit... With my situation, how rapidly my health was going down and how long it had been for this first pair of lungs that was available for me. Our backs were against the wall really... Doctors knew they had to take these lungs. Take the chance.
During the surgery they could see the lungs had the oedema in them. They had never seen that and that it wasn't like that when they accepted them, only just before they wanted to put the first lung in.. This showed they would probably be worse then they thought.. But still they didn't really know what it meant.
At this point there was really no way back...
Really the problems only showed in this year after my tx..

I am still happy they did it.. As you say, i'm still here, able to write this...
As i have the feeling we wouldn't have had a next chance, and that day, that was really the time. I felt it..

I know i can still do things. And i can still do more then i could in the years before.. I think a big part of this situation has to do with my age (like my doc says, you can do things that an older woman who lived and build up a life would maybe be satisfied with. Do small things, have a calm and easy life)... What i could and could not do in my teens.. What i still want to do.. Everyone of my friends moved away, are building a life somewhere. I would want that too.. But to be able to do that, i need to feel a lot better then i do. The circle around me is very small now. Ofcourse i have the internet, the phone. And my friends i see when they are on the island. But it's different. I want to broaden my horizon, but not only in my mid.. My life has been on hold for so so long now.. I really really want to live it now

Hopefully, all the docs they are going to have in the hospital now.. and maybe more tests, will show they have another option. I really hope that..

Hearing they have really been thinking of retransplant as an option was just very hard..

 

[Marjolein]

Thank you Laura
I know i said that my doc didn't know about the problems at first. And that is still the truth really.. When they examined the donor, when the lungs were still there.. They couldn't find anything. x-ray was clear, blooggas was ok, the lungs looked good.. The medical history didn't show problems. The only thing was that my donor was older and had smoked a bit... With my situation, how rapidly my health was going down and how long it had been for this first pair of lungs that was available for me. Our backs were against the wall really... Doctors knew they had to take these lungs. Take the chance.
During the surgery they could see the lungs had the oedema in them. They had never seen that and that it wasn't like that when they accepted them, only just before they wanted to put the first lung in.. This showed they would probably be worse then they thought.. But still they didn't really know what it meant.
At this point there was really no way back...
Really the problems only showed in this year after my tx..

I am still happy they did it.. As you say, i'm still here, able to write this...
As i have the feeling we wouldn't have had a next chance, and that day, that was really the time. I felt it..

I know i can still do things. And i can still do more then i could in the years before.. I think a big part of this situation has to do with my age (like my doc says, you can do things that an older woman who lived and build up a life would maybe be satisfied with. Do small things, have a calm and easy life)... What i could and could not do in my teens.. What i still want to do.. Everyone of my friends moved away, are building a life somewhere. I would want that too.. But to be able to do that, i need to feel a lot better then i do. The circle around me is very small now. Ofcourse i have the internet, the phone. And my friends i see when they are on the island. But it's different. I want to broaden my horizon, but not only in my mid.. My life has been on hold for so so long now.. I really really want to live it now

Hopefully, all the docs they are going to have in the hospital now.. and maybe more tests, will show they have another option. I really hope that..

Hearing they have really been thinking of retransplant as an option was just very hard..

 

[Marjolein]

Thank you Laura
I know i said that my doc didn't know about the problems at first. And that is still the truth really.. When they examined the donor, when the lungs were still there.. They couldn't find anything. x-ray was clear, blooggas was ok, the lungs looked good.. The medical history didn't show problems. The only thing was that my donor was older and had smoked a bit... With my situation, how rapidly my health was going down and how long it had been for this first pair of lungs that was available for me. Our backs were against the wall really... Doctors knew they had to take these lungs. Take the chance.
During the surgery they could see the lungs had the oedema in them. They had never seen that and that it wasn't like that when they accepted them, only just before they wanted to put the first lung in.. This showed they would probably be worse then they thought.. But still they didn't really know what it meant.
At this point there was really no way back...
Really the problems only showed in this year after my tx..

I am still happy they did it.. As you say, i'm still here, able to write this...
As i have the feeling we wouldn't have had a next chance, and that day, that was really the time. I felt it..

I know i can still do things. And i can still do more then i could in the years before.. I think a big part of this situation has to do with my age (like my doc says, you can do things that an older woman who lived and build up a life would maybe be satisfied with. Do small things, have a calm and easy life)... What i could and could not do in my teens.. What i still want to do.. Everyone of my friends moved away, are building a life somewhere. I would want that too.. But to be able to do that, i need to feel a lot better then i do. The circle around me is very small now. Ofcourse i have the internet, the phone. And my friends i see when they are on the island. But it's different. I want to broaden my horizon, but not only in my mid.. My life has been on hold for so so long now.. I really really want to live it now

Hopefully, all the docs they are going to have in the hospital now.. and maybe more tests, will show they have another option. I really hope that..

Hearing they have really been thinking of retransplant as an option was just very hard..

 

[EnergyGal]

Hi Marjolein

<img src="i/expressions/face-icon-small-smile.gif" border="0"> By staying in great shape like you are doing, you succeed with your new set of lungs when you are ready for them. You can get listed earlier and when the perfect set of Non smoking lungs are available and you are ready for the next set, you will get them.

I always tell people to try and stay in the best shape because there are always the dry runs (where you go to the hospital and the lungs are not good) and when the call comes in you want to be as healthy and calm as possible.

Since you were recently transplanted, a second transplant is much easier.

My tx was difficult but I had a second one after Ten years.

I still did well regardless of my hospital setbacks.

I admire you in every way, your kind and loving way about you is inspiring.

God Bless You

 

[EnergyGal]

Hi Marjolein

<img src="i/expressions/face-icon-small-smile.gif" border="0"> By staying in great shape like you are doing, you succeed with your new set of lungs when you are ready for them. You can get listed earlier and when the perfect set of Non smoking lungs are available and you are ready for the next set, you will get them.

I always tell people to try and stay in the best shape because there are always the dry runs (where you go to the hospital and the lungs are not good) and when the call comes in you want to be as healthy and calm as possible.

Since you were recently transplanted, a second transplant is much easier.

My tx was difficult but I had a second one after Ten years.

I still did well regardless of my hospital setbacks.

I admire you in every way, your kind and loving way about you is inspiring.

God Bless You

 

[EnergyGal]

Hi Marjolein

<img src="i/expressions/face-icon-small-smile.gif" border="0"> By staying in great shape like you are doing, you succeed with your new set of lungs when you are ready for them. You can get listed earlier and when the perfect set of Non smoking lungs are available and you are ready for the next set, you will get them.

I always tell people to try and stay in the best shape because there are always the dry runs (where you go to the hospital and the lungs are not good) and when the call comes in you want to be as healthy and calm as possible.

Since you were recently transplanted, a second transplant is much easier.

My tx was difficult but I had a second one after Ten years.

I still did well regardless of my hospital setbacks.

I admire you in every way, your kind and loving way about you is inspiring.

God Bless You

 

[EnergyGal]

Hi Marjolein

<img src="i/expressions/face-icon-small-smile.gif" border="0"> By staying in great shape like you are doing, you succeed with your new set of lungs when you are ready for them. You can get listed earlier and when the perfect set of Non smoking lungs are available and you are ready for the next set, you will get them.

I always tell people to try and stay in the best shape because there are always the dry runs (where you go to the hospital and the lungs are not good) and when the call comes in you want to be as healthy and calm as possible.

Since you were recently transplanted, a second transplant is much easier.

My tx was difficult but I had a second one after Ten years.

I still did well regardless of my hospital setbacks.

I admire you in every way, your kind and loving way about you is inspiring.

God Bless You

 

[EnergyGal]

Hi Marjolein

<img src="i/expressions/face-icon-small-smile.gif" border="0"> By staying in great shape like you are doing, you succeed with your new set of lungs when you are ready for them. You can get listed earlier and when the perfect set of Non smoking lungs are available and you are ready for the next set, you will get them.

I always tell people to try and stay in the best shape because there are always the dry runs (where you go to the hospital and the lungs are not good) and when the call comes in you want to be as healthy and calm as possible.

Since you were recently transplanted, a second transplant is much easier.

My tx was difficult but I had a second one after Ten years.

I still did well regardless of my hospital setbacks.

I admire you in every way, your kind and loving way about you is inspiring.

God Bless You

 

[Marjolein]

My doctor just called me this morning.

He has talked with everyone and they are all kind of puzzled as to why my lungfunction is better but i still can't do much. They want to find out what is holding me back. Don't we all...

So now they are going to schedule 3 tests.
An exercise test, on a starionary bike with the mask and iv and all. To see what happens.
An echo of my heart. They want to know if it really isn't my heart that is having more difficulties with the lungs.
And they want to do a ventilation/perfusion scan. With the ventilation scan you have to breath in gas through a mask and they make x-rays so they can see the gas exchange in different parts of the lungs. And with the perfusion scan they make the same x-rays but they inject something radioactive in your arm and they look at the perfusion of my lungs.

It still has to be scheduled so i don't know when it will be. After that it's waiting for the results i guess. Thought that shouldn't take long i guess.
And hopefully they will find something that they can make a little better.

Retransplant is on a side track for now.. Or how should i say that. First we want to find out more. It's still there, but ofcourse it's not the best option, or not one you would go for without trying every little thing there is.

So i hope they will find something with the tests.

Lots of love, Marjolein

 

[Marjolein]

My doctor just called me this morning.

He has talked with everyone and they are all kind of puzzled as to why my lungfunction is better but i still can't do much. They want to find out what is holding me back. Don't we all...

So now they are going to schedule 3 tests.
An exercise test, on a starionary bike with the mask and iv and all. To see what happens.
An echo of my heart. They want to know if it really isn't my heart that is having more difficulties with the lungs.
And they want to do a ventilation/perfusion scan. With the ventilation scan you have to breath in gas through a mask and they make x-rays so they can see the gas exchange in different parts of the lungs. And with the perfusion scan they make the same x-rays but they inject something radioactive in your arm and they look at the perfusion of my lungs.

It still has to be scheduled so i don't know when it will be. After that it's waiting for the results i guess. Thought that shouldn't take long i guess.
And hopefully they will find something that they can make a little better.

Retransplant is on a side track for now.. Or how should i say that. First we want to find out more. It's still there, but ofcourse it's not the best option, or not one you would go for without trying every little thing there is.

So i hope they will find something with the tests.

Lots of love, Marjolein

 

[Marjolein]

My doctor just called me this morning.

He has talked with everyone and they are all kind of puzzled as to why my lungfunction is better but i still can't do much. They want to find out what is holding me back. Don't we all...

So now they are going to schedule 3 tests.
An exercise test, on a starionary bike with the mask and iv and all. To see what happens.
An echo of my heart. They want to know if it really isn't my heart that is having more difficulties with the lungs.
And they want to do a ventilation/perfusion scan. With the ventilation scan you have to breath in gas through a mask and they make x-rays so they can see the gas exchange in different parts of the lungs. And with the perfusion scan they make the same x-rays but they inject something radioactive in your arm and they look at the perfusion of my lungs.

It still has to be scheduled so i don't know when it will be. After that it's waiting for the results i guess. Thought that shouldn't take long i guess.
And hopefully they will find something that they can make a little better.

Retransplant is on a side track for now.. Or how should i say that. First we want to find out more. It's still there, but ofcourse it's not the best option, or not one you would go for without trying every little thing there is.

So i hope they will find something with the tests.

Lots of love, Marjolein

 

[Marjolein]

My doctor just called me this morning.

He has talked with everyone and they are all kind of puzzled as to why my lungfunction is better but i still can't do much. They want to find out what is holding me back. Don't we all...

So now they are going to schedule 3 tests.
An exercise test, on a starionary bike with the mask and iv and all. To see what happens.
An echo of my heart. They want to know if it really isn't my heart that is having more difficulties with the lungs.
And they want to do a ventilation/perfusion scan. With the ventilation scan you have to breath in gas through a mask and they make x-rays so they can see the gas exchange in different parts of the lungs. And with the perfusion scan they make the same x-rays but they inject something radioactive in your arm and they look at the perfusion of my lungs.

It still has to be scheduled so i don't know when it will be. After that it's waiting for the results i guess. Thought that shouldn't take long i guess.
And hopefully they will find something that they can make a little better.

Retransplant is on a side track for now.. Or how should i say that. First we want to find out more. It's still there, but ofcourse it's not the best option, or not one you would go for without trying every little thing there is.

So i hope they will find something with the tests.

Lots of love, Marjolein

 

[Marjolein]

My doctor just called me this morning.

He has talked with everyone and they are all kind of puzzled as to why my lungfunction is better but i still can't do much. They want to find out what is holding me back. Don't we all...

So now they are going to schedule 3 tests.
An exercise test, on a starionary bike with the mask and iv and all. To see what happens.
An echo of my heart. They want to know if it really isn't my heart that is having more difficulties with the lungs.
And they want to do a ventilation/perfusion scan. With the ventilation scan you have to breath in gas through a mask and they make x-rays so they can see the gas exchange in different parts of the lungs. And with the perfusion scan they make the same x-rays but they inject something radioactive in your arm and they look at the perfusion of my lungs.

It still has to be scheduled so i don't know when it will be. After that it's waiting for the results i guess. Thought that shouldn't take long i guess.
And hopefully they will find something that they can make a little better.

Retransplant is on a side track for now.. Or how should i say that. First we want to find out more. It's still there, but ofcourse it's not the best option, or not one you would go for without trying every little thing there is.

So i hope they will find something with the tests.

Lots of love, Marjolein