emotional distress after transplant?

athanasia

New member
hi, im about a year and a half out. my amazingly quick and practically flawless recovery shocked the docs. (i was a cepacia patient and was told no one in the us but pittsburg would transplant cepacia due to the risks. i am one of 6 for a while to see how we do). anyway, i was so sick they debated on transplanting me but knew i wouldnt survive to the next set. i was on the vent for a week after surgery due to all the liquid in my lungs from them scrubing and scraping out the cepacia and soaking it with antibacteria fluids. i was walking un assisted 6 days later, all tubes out and first bronch flawless in two and a half weeks. i was at family house walking all around town carrying my 14 lb nephew on my chest with 85% fev1 for the next 3 weeks. next bronch showed 'moderate' rejection but i felt nothing, not winded, no fevors, no coughing nothing. they were shocked by this since the numbers said i should have been in bad shape. went through the steriod therapy and was fine. went home. jumped back into things that i wanted to do but being cautious about things. strict on my meds. last summer i left home to run a day camp program and came back and everything is messed up. i dont feel right in my family, with my friends, my home, anything. i feel lost trying find out my purpose and my future. i then started having fears of everyday things and things i loved. i have pulled away from everyone and trust no one. im not wanting to hurt myself, i want to make the most of what i have but am lost on how to do it. i have had psudomonus several times in my bronchs post transplant but that is all. no cepacia (knock on wood) but now the rest of my body is flipping out. my kidneys are getting really bad fast, my sugars went nuts (became diabetic after surgery with insulin), my blood pressure is now jumping to 180/120 or so and im getting horrible headaches, and of course sleeping and eating is getting messed up as well. i know the physical issues can be caused by the emotional stress but i dont understand why i feel the way i do and wondered if anyone else has and what they did. i am seeing a counselor and of course on meds for the problems and closely watched by my docs. i just want to know if anyone else was 'lost' after surgery. thanks
 

athanasia

New member
hi, im about a year and a half out. my amazingly quick and practically flawless recovery shocked the docs. (i was a cepacia patient and was told no one in the us but pittsburg would transplant cepacia due to the risks. i am one of 6 for a while to see how we do). anyway, i was so sick they debated on transplanting me but knew i wouldnt survive to the next set. i was on the vent for a week after surgery due to all the liquid in my lungs from them scrubing and scraping out the cepacia and soaking it with antibacteria fluids. i was walking un assisted 6 days later, all tubes out and first bronch flawless in two and a half weeks. i was at family house walking all around town carrying my 14 lb nephew on my chest with 85% fev1 for the next 3 weeks. next bronch showed 'moderate' rejection but i felt nothing, not winded, no fevors, no coughing nothing. they were shocked by this since the numbers said i should have been in bad shape. went through the steriod therapy and was fine. went home. jumped back into things that i wanted to do but being cautious about things. strict on my meds. last summer i left home to run a day camp program and came back and everything is messed up. i dont feel right in my family, with my friends, my home, anything. i feel lost trying find out my purpose and my future. i then started having fears of everyday things and things i loved. i have pulled away from everyone and trust no one. im not wanting to hurt myself, i want to make the most of what i have but am lost on how to do it. i have had psudomonus several times in my bronchs post transplant but that is all. no cepacia (knock on wood) but now the rest of my body is flipping out. my kidneys are getting really bad fast, my sugars went nuts (became diabetic after surgery with insulin), my blood pressure is now jumping to 180/120 or so and im getting horrible headaches, and of course sleeping and eating is getting messed up as well. i know the physical issues can be caused by the emotional stress but i dont understand why i feel the way i do and wondered if anyone else has and what they did. i am seeing a counselor and of course on meds for the problems and closely watched by my docs. i just want to know if anyone else was 'lost' after surgery. thanks
 

athanasia

New member
hi, im about a year and a half out. my amazingly quick and practically flawless recovery shocked the docs. (i was a cepacia patient and was told no one in the us but pittsburg would transplant cepacia due to the risks. i am one of 6 for a while to see how we do). anyway, i was so sick they debated on transplanting me but knew i wouldnt survive to the next set. i was on the vent for a week after surgery due to all the liquid in my lungs from them scrubing and scraping out the cepacia and soaking it with antibacteria fluids. i was walking un assisted 6 days later, all tubes out and first bronch flawless in two and a half weeks. i was at family house walking all around town carrying my 14 lb nephew on my chest with 85% fev1 for the next 3 weeks. next bronch showed 'moderate' rejection but i felt nothing, not winded, no fevors, no coughing nothing. they were shocked by this since the numbers said i should have been in bad shape. went through the steriod therapy and was fine. went home. jumped back into things that i wanted to do but being cautious about things. strict on my meds. last summer i left home to run a day camp program and came back and everything is messed up. i dont feel right in my family, with my friends, my home, anything. i feel lost trying find out my purpose and my future. i then started having fears of everyday things and things i loved. i have pulled away from everyone and trust no one. im not wanting to hurt myself, i want to make the most of what i have but am lost on how to do it. i have had psudomonus several times in my bronchs post transplant but that is all. no cepacia (knock on wood) but now the rest of my body is flipping out. my kidneys are getting really bad fast, my sugars went nuts (became diabetic after surgery with insulin), my blood pressure is now jumping to 180/120 or so and im getting horrible headaches, and of course sleeping and eating is getting messed up as well. i know the physical issues can be caused by the emotional stress but i dont understand why i feel the way i do and wondered if anyone else has and what they did. i am seeing a counselor and of course on meds for the problems and closely watched by my docs. i just want to know if anyone else was 'lost' after surgery. thanks
 

athanasia

New member
hi, im about a year and a half out. my amazingly quick and practically flawless recovery shocked the docs. (i was a cepacia patient and was told no one in the us but pittsburg would transplant cepacia due to the risks. i am one of 6 for a while to see how we do). anyway, i was so sick they debated on transplanting me but knew i wouldnt survive to the next set. i was on the vent for a week after surgery due to all the liquid in my lungs from them scrubing and scraping out the cepacia and soaking it with antibacteria fluids. i was walking un assisted 6 days later, all tubes out and first bronch flawless in two and a half weeks. i was at family house walking all around town carrying my 14 lb nephew on my chest with 85% fev1 for the next 3 weeks. next bronch showed 'moderate' rejection but i felt nothing, not winded, no fevors, no coughing nothing. they were shocked by this since the numbers said i should have been in bad shape. went through the steriod therapy and was fine. went home. jumped back into things that i wanted to do but being cautious about things. strict on my meds. last summer i left home to run a day camp program and came back and everything is messed up. i dont feel right in my family, with my friends, my home, anything. i feel lost trying find out my purpose and my future. i then started having fears of everyday things and things i loved. i have pulled away from everyone and trust no one. im not wanting to hurt myself, i want to make the most of what i have but am lost on how to do it. i have had psudomonus several times in my bronchs post transplant but that is all. no cepacia (knock on wood) but now the rest of my body is flipping out. my kidneys are getting really bad fast, my sugars went nuts (became diabetic after surgery with insulin), my blood pressure is now jumping to 180/120 or so and im getting horrible headaches, and of course sleeping and eating is getting messed up as well. i know the physical issues can be caused by the emotional stress but i dont understand why i feel the way i do and wondered if anyone else has and what they did. i am seeing a counselor and of course on meds for the problems and closely watched by my docs. i just want to know if anyone else was 'lost' after surgery. thanks
 

athanasia

New member
hi, im about a year and a half out. my amazingly quick and practically flawless recovery shocked the docs. (i was a cepacia patient and was told no one in the us but pittsburg would transplant cepacia due to the risks. i am one of 6 for a while to see how we do). anyway, i was so sick they debated on transplanting me but knew i wouldnt survive to the next set. i was on the vent for a week after surgery due to all the liquid in my lungs from them scrubing and scraping out the cepacia and soaking it with antibacteria fluids. i was walking un assisted 6 days later, all tubes out and first bronch flawless in two and a half weeks. i was at family house walking all around town carrying my 14 lb nephew on my chest with 85% fev1 for the next 3 weeks. next bronch showed 'moderate' rejection but i felt nothing, not winded, no fevors, no coughing nothing. they were shocked by this since the numbers said i should have been in bad shape. went through the steriod therapy and was fine. went home. jumped back into things that i wanted to do but being cautious about things. strict on my meds. last summer i left home to run a day camp program and came back and everything is messed up. i dont feel right in my family, with my friends, my home, anything. i feel lost trying find out my purpose and my future. i then started having fears of everyday things and things i loved. i have pulled away from everyone and trust no one. im not wanting to hurt myself, i want to make the most of what i have but am lost on how to do it. i have had psudomonus several times in my bronchs post transplant but that is all. no cepacia (knock on wood) but now the rest of my body is flipping out. my kidneys are getting really bad fast, my sugars went nuts (became diabetic after surgery with insulin), my blood pressure is now jumping to 180/120 or so and im getting horrible headaches, and of course sleeping and eating is getting messed up as well. i know the physical issues can be caused by the emotional stress but i dont understand why i feel the way i do and wondered if anyone else has and what they did. i am seeing a counselor and of course on meds for the problems and closely watched by my docs. i just want to know if anyone else was 'lost' after surgery. thanks
 
F

fr3ak

Guest
Go here and read this, I wrote it about 6 months post tx

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=6860&catid=156
">http://blogs.cysticfibrosis.co...readid=6860&catid=156
</a>
So yes I have felt lost as well as been "lost"

You go to bed dying and if things go to plan you wake up very much alive and then you are left with "what now" which is confronting when I suppose you have prepared yourself for death and you havent really banked on "making it" (that's how it was for me anyway)

The fog has lifted and things are much clearer, but I still remember those days as if they were yesterday

If you need someone to talk to then I am more then happy to lend an ear!
 
F

fr3ak

Guest
Go here and read this, I wrote it about 6 months post tx

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=6860&catid=156
">http://blogs.cysticfibrosis.co...readid=6860&catid=156
</a>
So yes I have felt lost as well as been "lost"

You go to bed dying and if things go to plan you wake up very much alive and then you are left with "what now" which is confronting when I suppose you have prepared yourself for death and you havent really banked on "making it" (that's how it was for me anyway)

The fog has lifted and things are much clearer, but I still remember those days as if they were yesterday

If you need someone to talk to then I am more then happy to lend an ear!
 
F

fr3ak

Guest
Go here and read this, I wrote it about 6 months post tx

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=6860&catid=156
">http://blogs.cysticfibrosis.co...readid=6860&catid=156
</a>
So yes I have felt lost as well as been "lost"

You go to bed dying and if things go to plan you wake up very much alive and then you are left with "what now" which is confronting when I suppose you have prepared yourself for death and you havent really banked on "making it" (that's how it was for me anyway)

The fog has lifted and things are much clearer, but I still remember those days as if they were yesterday

If you need someone to talk to then I am more then happy to lend an ear!
 
F

fr3ak

Guest
Go here and read this, I wrote it about 6 months post tx

<a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=6860&catid=156
">http://blogs.cysticfibrosis.co...readid=6860&catid=156
</a>
So yes I have felt lost as well as been "lost"

You go to bed dying and if things go to plan you wake up very much alive and then you are left with "what now" which is confronting when I suppose you have prepared yourself for death and you havent really banked on "making it" (that's how it was for me anyway)

The fog has lifted and things are much clearer, but I still remember those days as if they were yesterday

If you need someone to talk to then I am more then happy to lend an ear!
 
F

fr3ak

Guest
Go here and read this, I wrote it about 6 months post tx
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=6860&catid=156
">http://blogs.cysticfibrosis.co...readid=6860&catid=156
</a><br />
<br />So yes I have felt lost as well as been "lost"
<br />
<br />You go to bed dying and if things go to plan you wake up very much alive and then you are left with "what now" which is confronting when I suppose you have prepared yourself for death and you havent really banked on "making it" (that's how it was for me anyway)
<br />
<br />The fog has lifted and things are much clearer, but I still remember those days as if they were yesterday
<br />
<br />If you need someone to talk to then I am more then happy to lend an ear!
 

Transplantmommy

New member
I don't think that I have felt lost because I have my son who keeps me going every day.

What I do hate though is that it seemed like all of my friends were always calling to see how I was doing or if I needed anything before the transplant and now, I hardly ever hear from some of them. This is the time that I actually want to go out and do things with them and either they never come around or are always too busy and I hate it. But, if this is what irritates me the most post Tx, I can handle it.

I hope that you feel better soon and can pull yourself out of feeling lost. I know that it must suck.
 

Transplantmommy

New member
I don't think that I have felt lost because I have my son who keeps me going every day.

What I do hate though is that it seemed like all of my friends were always calling to see how I was doing or if I needed anything before the transplant and now, I hardly ever hear from some of them. This is the time that I actually want to go out and do things with them and either they never come around or are always too busy and I hate it. But, if this is what irritates me the most post Tx, I can handle it.

I hope that you feel better soon and can pull yourself out of feeling lost. I know that it must suck.
 

Transplantmommy

New member
I don't think that I have felt lost because I have my son who keeps me going every day.

What I do hate though is that it seemed like all of my friends were always calling to see how I was doing or if I needed anything before the transplant and now, I hardly ever hear from some of them. This is the time that I actually want to go out and do things with them and either they never come around or are always too busy and I hate it. But, if this is what irritates me the most post Tx, I can handle it.

I hope that you feel better soon and can pull yourself out of feeling lost. I know that it must suck.
 

Transplantmommy

New member
I don't think that I have felt lost because I have my son who keeps me going every day.

What I do hate though is that it seemed like all of my friends were always calling to see how I was doing or if I needed anything before the transplant and now, I hardly ever hear from some of them. This is the time that I actually want to go out and do things with them and either they never come around or are always too busy and I hate it. But, if this is what irritates me the most post Tx, I can handle it.

I hope that you feel better soon and can pull yourself out of feeling lost. I know that it must suck.
 

Transplantmommy

New member
I don't think that I have felt lost because I have my son who keeps me going every day.
<br />
<br />What I do hate though is that it seemed like all of my friends were always calling to see how I was doing or if I needed anything before the transplant and now, I hardly ever hear from some of them. This is the time that I actually want to go out and do things with them and either they never come around or are always too busy and I hate it. But, if this is what irritates me the most post Tx, I can handle it.
<br />
<br />I hope that you feel better soon and can pull yourself out of feeling lost. I know that it must suck.
 

summer732

New member
I have to say I never felt lost either. I got my transplant and recoverd in New Orleans. So the thought of coming home kept me going. Then once I was home the thought of visiting my friends at college kept me going. Then the thought of getting back to school kept me going. Then school itself. Then career and moving out!

I find that if you set goals for yourself, keep busy, and keep your dreams alive you will find yourself back on track. Just think of all the things you wanted to do pre-transplant but couldn't! You can do all of that now. Nothing is holding you back.

Start working out, poor yourself into your job, call your friends for a night out. The possibilities are endless!

Can I ask why you feel your eating is thrown off? Is that from the stress? If you aren't sleeping you can always ask for some Ambien. I was on it regularly the first year post tx and still take it from time to time. You will be surprised at how cloudy your head gets when you are tired.

There are a bunch of post tx people on here too who are more than willing to talk. So definitely utilize that support.
 

summer732

New member
I have to say I never felt lost either. I got my transplant and recoverd in New Orleans. So the thought of coming home kept me going. Then once I was home the thought of visiting my friends at college kept me going. Then the thought of getting back to school kept me going. Then school itself. Then career and moving out!

I find that if you set goals for yourself, keep busy, and keep your dreams alive you will find yourself back on track. Just think of all the things you wanted to do pre-transplant but couldn't! You can do all of that now. Nothing is holding you back.

Start working out, poor yourself into your job, call your friends for a night out. The possibilities are endless!

Can I ask why you feel your eating is thrown off? Is that from the stress? If you aren't sleeping you can always ask for some Ambien. I was on it regularly the first year post tx and still take it from time to time. You will be surprised at how cloudy your head gets when you are tired.

There are a bunch of post tx people on here too who are more than willing to talk. So definitely utilize that support.
 

summer732

New member
I have to say I never felt lost either. I got my transplant and recoverd in New Orleans. So the thought of coming home kept me going. Then once I was home the thought of visiting my friends at college kept me going. Then the thought of getting back to school kept me going. Then school itself. Then career and moving out!

I find that if you set goals for yourself, keep busy, and keep your dreams alive you will find yourself back on track. Just think of all the things you wanted to do pre-transplant but couldn't! You can do all of that now. Nothing is holding you back.

Start working out, poor yourself into your job, call your friends for a night out. The possibilities are endless!

Can I ask why you feel your eating is thrown off? Is that from the stress? If you aren't sleeping you can always ask for some Ambien. I was on it regularly the first year post tx and still take it from time to time. You will be surprised at how cloudy your head gets when you are tired.

There are a bunch of post tx people on here too who are more than willing to talk. So definitely utilize that support.
 

summer732

New member
I have to say I never felt lost either. I got my transplant and recoverd in New Orleans. So the thought of coming home kept me going. Then once I was home the thought of visiting my friends at college kept me going. Then the thought of getting back to school kept me going. Then school itself. Then career and moving out!

I find that if you set goals for yourself, keep busy, and keep your dreams alive you will find yourself back on track. Just think of all the things you wanted to do pre-transplant but couldn't! You can do all of that now. Nothing is holding you back.

Start working out, poor yourself into your job, call your friends for a night out. The possibilities are endless!

Can I ask why you feel your eating is thrown off? Is that from the stress? If you aren't sleeping you can always ask for some Ambien. I was on it regularly the first year post tx and still take it from time to time. You will be surprised at how cloudy your head gets when you are tired.

There are a bunch of post tx people on here too who are more than willing to talk. So definitely utilize that support.
 

summer732

New member
I have to say I never felt lost either. I got my transplant and recoverd in New Orleans. So the thought of coming home kept me going. Then once I was home the thought of visiting my friends at college kept me going. Then the thought of getting back to school kept me going. Then school itself. Then career and moving out!
<br />
<br />I find that if you set goals for yourself, keep busy, and keep your dreams alive you will find yourself back on track. Just think of all the things you wanted to do pre-transplant but couldn't! You can do all of that now. Nothing is holding you back.
<br />
<br />Start working out, poor yourself into your job, call your friends for a night out. The possibilities are endless!
<br />
<br />Can I ask why you feel your eating is thrown off? Is that from the stress? If you aren't sleeping you can always ask for some Ambien. I was on it regularly the first year post tx and still take it from time to time. You will be surprised at how cloudy your head gets when you are tired.
<br />
<br />There are a bunch of post tx people on here too who are more than willing to talk. So definitely utilize that support.
 
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