sick w/FEV1 @ 17%

katyf13

New member
When Mike was getting listed and and then waiting for his transplant, we all went to counseling. his parents went together and Mike and I went together. This helped for several reasons:
1) Our counselor helped us to visualize the entire process so that we could face it calmly.
2) A safe place to vent every emotion.
A transplant is a big huge deal. I think they should make it a rquirement for every family facing it to have some counseling just to get prepared!
Also, just know there are tons of people on here who have been through it who will be happy to answer all of your questions!
 

katyf13

New member
When Mike was getting listed and and then waiting for his transplant, we all went to counseling. his parents went together and Mike and I went together. This helped for several reasons:
1) Our counselor helped us to visualize the entire process so that we could face it calmly.
2) A safe place to vent every emotion.
A transplant is a big huge deal. I think they should make it a rquirement for every family facing it to have some counseling just to get prepared!
Also, just know there are tons of people on here who have been through it who will be happy to answer all of your questions!
 

katyf13

New member
When Mike was getting listed and and then waiting for his transplant, we all went to counseling. his parents went together and Mike and I went together. This helped for several reasons:
1) Our counselor helped us to visualize the entire process so that we could face it calmly.
2) A safe place to vent every emotion.
A transplant is a big huge deal. I think they should make it a rquirement for every family facing it to have some counseling just to get prepared!
Also, just know there are tons of people on here who have been through it who will be happy to answer all of your questions!
 

katyf13

New member
When Mike was getting listed and and then waiting for his transplant, we all went to counseling. his parents went together and Mike and I went together. This helped for several reasons:
1) Our counselor helped us to visualize the entire process so that we could face it calmly.
2) A safe place to vent every emotion.
A transplant is a big huge deal. I think they should make it a rquirement for every family facing it to have some counseling just to get prepared!
Also, just know there are tons of people on here who have been through it who will be happy to answer all of your questions!
 

katyf13

New member
When Mike was getting listed and and then waiting for his transplant, we all went to counseling. his parents went together and Mike and I went together. This helped for several reasons:
<br />1) Our counselor helped us to visualize the entire process so that we could face it calmly.
<br />2) A safe place to vent every emotion.
<br />A transplant is a big huge deal. I think they should make it a rquirement for every family facing it to have some counseling just to get prepared!
<br />Also, just know there are tons of people on here who have been through it who will be happy to answer all of your questions!
 

coltsfan715

New member
Hi Jaime,

I am sorry you are having to go through this. It is a very tough thing to go through - mentally, emotionally ... physically.

I had a transplant last year ... May 2, 2007. I also had a fairly rapid decline when I did start to decline. I had been stable for years at around 45% lung function I was able to do most anything I needed to do but it took me a little longer than most people. In the Fall of 2005 I had a partial lung collapse and from there it was problem after problem. I lost essentially about 12% of my lung function over night with the collapse because after that I never tested with FEV1 over 33%. I struggled with being sick every month and on some type of antibiotic just as often - be it oral or IV. I approached my doc in 2006 about transplant because all the different treatments we had tried were doing nothing to help. I had started wheezing, needing O2, coughing constantly, needing more and more IV meds and needing them for longer periods of time to feel "okay". I was referred to a transplant center in Dec 2006 and started my process from there. I was listed with PFTs at around 28% and transplant a little over a month later with PFTs at 22%.

For me I had emotions all over the place. It took me weeks to decide what to do after my first appointment because the first time I went I still was not decided on what I wanted to do. What helped me the most with my family and friends was not having someone tell me things would be okay - because I didn't think they were going to be and hearing that answer made me want to punch someone in the face. It helped me the most when they would just let me be angry or upset or afraid. That I could just come out and say I am afraid to die or I don't want to die, or why is this happening to me or I hate life. They knew it wasn't my usual personality but it was how I felt at the time so they let me get it out. It helped me to not dwell on those feelings and still be enjoyable to be around because I wasn't walking around with all that pent up inside.

I also think counseling is a great idea. I went to counselling before my transplant and still go once a month. My family did not go but I think it would have helped them if they had gone. They had to go after my transplant as we all had some emotional issues about the whole thing.

I say just give him a place he can go and just be open and honest. Don't judge how he feels, don't tell him he is having a bad attitude even if he is, just be there to listen and offer and hug or a tissue. I tell my mom and fiance all the time it is almost as if I was mourning my own death pre transplant. I was preparing to die and in the same way I would mourn a lost friend I was mourning my relationships with the ones I loved. I was upset at how useless I felt because I couldn't really contribute much - I told my family that too. I wanted to do what I was able to do. They were always trying to carry things for me or do this or that for me. I just said THIS I CAN do so please let me I will ask for help if I need it.

As I am sure it is hard to watch your child experience this. It is hard to experience it - I think especially for us with CF. We are so used to keeping or health struggles somewhat personal (most of us anyway) and getting "this sick" is almost like a forced coming out because you can no longer push it out of site - it is obvious that you are sick and something is wrong. I struggled with that alot too.

I will stop talking now as there is no pat answer to say how to help him. I just wanted to offer up somethings that helped me and some things that my family did that were appreciated by me throughout my decline and my wait and recovery.

Take Care and you and your son will be in my prayers.

Love Lindsey
 

coltsfan715

New member
Hi Jaime,

I am sorry you are having to go through this. It is a very tough thing to go through - mentally, emotionally ... physically.

I had a transplant last year ... May 2, 2007. I also had a fairly rapid decline when I did start to decline. I had been stable for years at around 45% lung function I was able to do most anything I needed to do but it took me a little longer than most people. In the Fall of 2005 I had a partial lung collapse and from there it was problem after problem. I lost essentially about 12% of my lung function over night with the collapse because after that I never tested with FEV1 over 33%. I struggled with being sick every month and on some type of antibiotic just as often - be it oral or IV. I approached my doc in 2006 about transplant because all the different treatments we had tried were doing nothing to help. I had started wheezing, needing O2, coughing constantly, needing more and more IV meds and needing them for longer periods of time to feel "okay". I was referred to a transplant center in Dec 2006 and started my process from there. I was listed with PFTs at around 28% and transplant a little over a month later with PFTs at 22%.

For me I had emotions all over the place. It took me weeks to decide what to do after my first appointment because the first time I went I still was not decided on what I wanted to do. What helped me the most with my family and friends was not having someone tell me things would be okay - because I didn't think they were going to be and hearing that answer made me want to punch someone in the face. It helped me the most when they would just let me be angry or upset or afraid. That I could just come out and say I am afraid to die or I don't want to die, or why is this happening to me or I hate life. They knew it wasn't my usual personality but it was how I felt at the time so they let me get it out. It helped me to not dwell on those feelings and still be enjoyable to be around because I wasn't walking around with all that pent up inside.

I also think counseling is a great idea. I went to counselling before my transplant and still go once a month. My family did not go but I think it would have helped them if they had gone. They had to go after my transplant as we all had some emotional issues about the whole thing.

I say just give him a place he can go and just be open and honest. Don't judge how he feels, don't tell him he is having a bad attitude even if he is, just be there to listen and offer and hug or a tissue. I tell my mom and fiance all the time it is almost as if I was mourning my own death pre transplant. I was preparing to die and in the same way I would mourn a lost friend I was mourning my relationships with the ones I loved. I was upset at how useless I felt because I couldn't really contribute much - I told my family that too. I wanted to do what I was able to do. They were always trying to carry things for me or do this or that for me. I just said THIS I CAN do so please let me I will ask for help if I need it.

As I am sure it is hard to watch your child experience this. It is hard to experience it - I think especially for us with CF. We are so used to keeping or health struggles somewhat personal (most of us anyway) and getting "this sick" is almost like a forced coming out because you can no longer push it out of site - it is obvious that you are sick and something is wrong. I struggled with that alot too.

I will stop talking now as there is no pat answer to say how to help him. I just wanted to offer up somethings that helped me and some things that my family did that were appreciated by me throughout my decline and my wait and recovery.

Take Care and you and your son will be in my prayers.

Love Lindsey
 

coltsfan715

New member
Hi Jaime,

I am sorry you are having to go through this. It is a very tough thing to go through - mentally, emotionally ... physically.

I had a transplant last year ... May 2, 2007. I also had a fairly rapid decline when I did start to decline. I had been stable for years at around 45% lung function I was able to do most anything I needed to do but it took me a little longer than most people. In the Fall of 2005 I had a partial lung collapse and from there it was problem after problem. I lost essentially about 12% of my lung function over night with the collapse because after that I never tested with FEV1 over 33%. I struggled with being sick every month and on some type of antibiotic just as often - be it oral or IV. I approached my doc in 2006 about transplant because all the different treatments we had tried were doing nothing to help. I had started wheezing, needing O2, coughing constantly, needing more and more IV meds and needing them for longer periods of time to feel "okay". I was referred to a transplant center in Dec 2006 and started my process from there. I was listed with PFTs at around 28% and transplant a little over a month later with PFTs at 22%.

For me I had emotions all over the place. It took me weeks to decide what to do after my first appointment because the first time I went I still was not decided on what I wanted to do. What helped me the most with my family and friends was not having someone tell me things would be okay - because I didn't think they were going to be and hearing that answer made me want to punch someone in the face. It helped me the most when they would just let me be angry or upset or afraid. That I could just come out and say I am afraid to die or I don't want to die, or why is this happening to me or I hate life. They knew it wasn't my usual personality but it was how I felt at the time so they let me get it out. It helped me to not dwell on those feelings and still be enjoyable to be around because I wasn't walking around with all that pent up inside.

I also think counseling is a great idea. I went to counselling before my transplant and still go once a month. My family did not go but I think it would have helped them if they had gone. They had to go after my transplant as we all had some emotional issues about the whole thing.

I say just give him a place he can go and just be open and honest. Don't judge how he feels, don't tell him he is having a bad attitude even if he is, just be there to listen and offer and hug or a tissue. I tell my mom and fiance all the time it is almost as if I was mourning my own death pre transplant. I was preparing to die and in the same way I would mourn a lost friend I was mourning my relationships with the ones I loved. I was upset at how useless I felt because I couldn't really contribute much - I told my family that too. I wanted to do what I was able to do. They were always trying to carry things for me or do this or that for me. I just said THIS I CAN do so please let me I will ask for help if I need it.

As I am sure it is hard to watch your child experience this. It is hard to experience it - I think especially for us with CF. We are so used to keeping or health struggles somewhat personal (most of us anyway) and getting "this sick" is almost like a forced coming out because you can no longer push it out of site - it is obvious that you are sick and something is wrong. I struggled with that alot too.

I will stop talking now as there is no pat answer to say how to help him. I just wanted to offer up somethings that helped me and some things that my family did that were appreciated by me throughout my decline and my wait and recovery.

Take Care and you and your son will be in my prayers.

Love Lindsey
 

coltsfan715

New member
Hi Jaime,

I am sorry you are having to go through this. It is a very tough thing to go through - mentally, emotionally ... physically.

I had a transplant last year ... May 2, 2007. I also had a fairly rapid decline when I did start to decline. I had been stable for years at around 45% lung function I was able to do most anything I needed to do but it took me a little longer than most people. In the Fall of 2005 I had a partial lung collapse and from there it was problem after problem. I lost essentially about 12% of my lung function over night with the collapse because after that I never tested with FEV1 over 33%. I struggled with being sick every month and on some type of antibiotic just as often - be it oral or IV. I approached my doc in 2006 about transplant because all the different treatments we had tried were doing nothing to help. I had started wheezing, needing O2, coughing constantly, needing more and more IV meds and needing them for longer periods of time to feel "okay". I was referred to a transplant center in Dec 2006 and started my process from there. I was listed with PFTs at around 28% and transplant a little over a month later with PFTs at 22%.

For me I had emotions all over the place. It took me weeks to decide what to do after my first appointment because the first time I went I still was not decided on what I wanted to do. What helped me the most with my family and friends was not having someone tell me things would be okay - because I didn't think they were going to be and hearing that answer made me want to punch someone in the face. It helped me the most when they would just let me be angry or upset or afraid. That I could just come out and say I am afraid to die or I don't want to die, or why is this happening to me or I hate life. They knew it wasn't my usual personality but it was how I felt at the time so they let me get it out. It helped me to not dwell on those feelings and still be enjoyable to be around because I wasn't walking around with all that pent up inside.

I also think counseling is a great idea. I went to counselling before my transplant and still go once a month. My family did not go but I think it would have helped them if they had gone. They had to go after my transplant as we all had some emotional issues about the whole thing.

I say just give him a place he can go and just be open and honest. Don't judge how he feels, don't tell him he is having a bad attitude even if he is, just be there to listen and offer and hug or a tissue. I tell my mom and fiance all the time it is almost as if I was mourning my own death pre transplant. I was preparing to die and in the same way I would mourn a lost friend I was mourning my relationships with the ones I loved. I was upset at how useless I felt because I couldn't really contribute much - I told my family that too. I wanted to do what I was able to do. They were always trying to carry things for me or do this or that for me. I just said THIS I CAN do so please let me I will ask for help if I need it.

As I am sure it is hard to watch your child experience this. It is hard to experience it - I think especially for us with CF. We are so used to keeping or health struggles somewhat personal (most of us anyway) and getting "this sick" is almost like a forced coming out because you can no longer push it out of site - it is obvious that you are sick and something is wrong. I struggled with that alot too.

I will stop talking now as there is no pat answer to say how to help him. I just wanted to offer up somethings that helped me and some things that my family did that were appreciated by me throughout my decline and my wait and recovery.

Take Care and you and your son will be in my prayers.

Love Lindsey
 

coltsfan715

New member
Hi Jaime,
<br />
<br />I am sorry you are having to go through this. It is a very tough thing to go through - mentally, emotionally ... physically.
<br />
<br />I had a transplant last year ... May 2, 2007. I also had a fairly rapid decline when I did start to decline. I had been stable for years at around 45% lung function I was able to do most anything I needed to do but it took me a little longer than most people. In the Fall of 2005 I had a partial lung collapse and from there it was problem after problem. I lost essentially about 12% of my lung function over night with the collapse because after that I never tested with FEV1 over 33%. I struggled with being sick every month and on some type of antibiotic just as often - be it oral or IV. I approached my doc in 2006 about transplant because all the different treatments we had tried were doing nothing to help. I had started wheezing, needing O2, coughing constantly, needing more and more IV meds and needing them for longer periods of time to feel "okay". I was referred to a transplant center in Dec 2006 and started my process from there. I was listed with PFTs at around 28% and transplant a little over a month later with PFTs at 22%.
<br />
<br />For me I had emotions all over the place. It took me weeks to decide what to do after my first appointment because the first time I went I still was not decided on what I wanted to do. What helped me the most with my family and friends was not having someone tell me things would be okay - because I didn't think they were going to be and hearing that answer made me want to punch someone in the face. It helped me the most when they would just let me be angry or upset or afraid. That I could just come out and say I am afraid to die or I don't want to die, or why is this happening to me or I hate life. They knew it wasn't my usual personality but it was how I felt at the time so they let me get it out. It helped me to not dwell on those feelings and still be enjoyable to be around because I wasn't walking around with all that pent up inside.
<br />
<br />I also think counseling is a great idea. I went to counselling before my transplant and still go once a month. My family did not go but I think it would have helped them if they had gone. They had to go after my transplant as we all had some emotional issues about the whole thing.
<br />
<br />I say just give him a place he can go and just be open and honest. Don't judge how he feels, don't tell him he is having a bad attitude even if he is, just be there to listen and offer and hug or a tissue. I tell my mom and fiance all the time it is almost as if I was mourning my own death pre transplant. I was preparing to die and in the same way I would mourn a lost friend I was mourning my relationships with the ones I loved. I was upset at how useless I felt because I couldn't really contribute much - I told my family that too. I wanted to do what I was able to do. They were always trying to carry things for me or do this or that for me. I just said THIS I CAN do so please let me I will ask for help if I need it.
<br />
<br />As I am sure it is hard to watch your child experience this. It is hard to experience it - I think especially for us with CF. We are so used to keeping or health struggles somewhat personal (most of us anyway) and getting "this sick" is almost like a forced coming out because you can no longer push it out of site - it is obvious that you are sick and something is wrong. I struggled with that alot too.
<br />
<br />I will stop talking now as there is no pat answer to say how to help him. I just wanted to offer up somethings that helped me and some things that my family did that were appreciated by me throughout my decline and my wait and recovery.
<br />
<br />Take Care and you and your son will be in my prayers.
<br />
<br />Love Lindsey
 

j121361

New member
Marla and Amy, thank you for your hugs and prayers.

katyf13, I agree, that should be a requirement, thank you for the good idea and I'm so sorry on the loss of your fiancee.

Liza and Lindsey, thank you both for taking the time to explain what it is you went through and felt, one as a parent and the other as a Tx recipient.

I'm at the beginning of all this, so I'm trying to absorb all the information I can, and just take this one day and one step at a time.

Liza,so familiar,listening to her coughing.

thats exactly what I've been doing for the last 6 months, he would be upstairs and me down, watching TV then hear him coughing so hard, I would mute the TV and listen, just praying for his coughing to calm down.
yes I'm a Christian, and I too believe prayers help a great deal,although I'm still trying to learn to let Him take the reigns, but as I'm sure you know, it's easier said than done.
as for the flooding. I live about 20 miles from the meramec river, so no danger of flooding<img src="i/expressions/face-icon-small-happy.gif" border="0">


Lindsey, I have the UTMOST respect for the kids that go through this, I honestly don't know if I could do it.
Thank you for helping me better understand the different emotions I'm getting from my son.

He is still in the hospital and for now the only computer I have access to is my sisters,so I'll only be on about once a week.

thank you all so much,

Jamie<img src="i/expressions/rose.gif" border="0">
 

j121361

New member
Marla and Amy, thank you for your hugs and prayers.

katyf13, I agree, that should be a requirement, thank you for the good idea and I'm so sorry on the loss of your fiancee.

Liza and Lindsey, thank you both for taking the time to explain what it is you went through and felt, one as a parent and the other as a Tx recipient.

I'm at the beginning of all this, so I'm trying to absorb all the information I can, and just take this one day and one step at a time.

Liza,so familiar,listening to her coughing.

thats exactly what I've been doing for the last 6 months, he would be upstairs and me down, watching TV then hear him coughing so hard, I would mute the TV and listen, just praying for his coughing to calm down.
yes I'm a Christian, and I too believe prayers help a great deal,although I'm still trying to learn to let Him take the reigns, but as I'm sure you know, it's easier said than done.
as for the flooding. I live about 20 miles from the meramec river, so no danger of flooding<img src="i/expressions/face-icon-small-happy.gif" border="0">


Lindsey, I have the UTMOST respect for the kids that go through this, I honestly don't know if I could do it.
Thank you for helping me better understand the different emotions I'm getting from my son.

He is still in the hospital and for now the only computer I have access to is my sisters,so I'll only be on about once a week.

thank you all so much,

Jamie<img src="i/expressions/rose.gif" border="0">
 

j121361

New member
Marla and Amy, thank you for your hugs and prayers.

katyf13, I agree, that should be a requirement, thank you for the good idea and I'm so sorry on the loss of your fiancee.

Liza and Lindsey, thank you both for taking the time to explain what it is you went through and felt, one as a parent and the other as a Tx recipient.

I'm at the beginning of all this, so I'm trying to absorb all the information I can, and just take this one day and one step at a time.

Liza,so familiar,listening to her coughing.

thats exactly what I've been doing for the last 6 months, he would be upstairs and me down, watching TV then hear him coughing so hard, I would mute the TV and listen, just praying for his coughing to calm down.
yes I'm a Christian, and I too believe prayers help a great deal,although I'm still trying to learn to let Him take the reigns, but as I'm sure you know, it's easier said than done.
as for the flooding. I live about 20 miles from the meramec river, so no danger of flooding<img src="i/expressions/face-icon-small-happy.gif" border="0">


Lindsey, I have the UTMOST respect for the kids that go through this, I honestly don't know if I could do it.
Thank you for helping me better understand the different emotions I'm getting from my son.

He is still in the hospital and for now the only computer I have access to is my sisters,so I'll only be on about once a week.

thank you all so much,

Jamie<img src="i/expressions/rose.gif" border="0">
 

j121361

New member
Marla and Amy, thank you for your hugs and prayers.

katyf13, I agree, that should be a requirement, thank you for the good idea and I'm so sorry on the loss of your fiancee.

Liza and Lindsey, thank you both for taking the time to explain what it is you went through and felt, one as a parent and the other as a Tx recipient.

I'm at the beginning of all this, so I'm trying to absorb all the information I can, and just take this one day and one step at a time.

Liza,so familiar,listening to her coughing.

thats exactly what I've been doing for the last 6 months, he would be upstairs and me down, watching TV then hear him coughing so hard, I would mute the TV and listen, just praying for his coughing to calm down.
yes I'm a Christian, and I too believe prayers help a great deal,although I'm still trying to learn to let Him take the reigns, but as I'm sure you know, it's easier said than done.
as for the flooding. I live about 20 miles from the meramec river, so no danger of flooding<img src="i/expressions/face-icon-small-happy.gif" border="0">


Lindsey, I have the UTMOST respect for the kids that go through this, I honestly don't know if I could do it.
Thank you for helping me better understand the different emotions I'm getting from my son.

He is still in the hospital and for now the only computer I have access to is my sisters,so I'll only be on about once a week.

thank you all so much,

Jamie<img src="i/expressions/rose.gif" border="0">
 

j121361

New member
Marla and Amy, thank you for your hugs and prayers.
<br />
<br />katyf13, I agree, that should be a requirement, thank you for the good idea and I'm so sorry on the loss of your fiancee.
<br />
<br />Liza and Lindsey, thank you both for taking the time to explain what it is you went through and felt, one as a parent and the other as a Tx recipient.
<br />
<br />I'm at the beginning of all this, so I'm trying to absorb all the information I can, and just take this one day and one step at a time.
<br />
<br />Liza,so familiar,listening to her coughing.
<br />
<br />thats exactly what I've been doing for the last 6 months, he would be upstairs and me down, watching TV then hear him coughing so hard, I would mute the TV and listen, just praying for his coughing to calm down.
<br />yes I'm a Christian, and I too believe prayers help a great deal,although I'm still trying to learn to let Him take the reigns, but as I'm sure you know, it's easier said than done.
<br />as for the flooding. I live about 20 miles from the meramec river, so no danger of flooding<img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />
<br />
<br />Lindsey, I have the UTMOST respect for the kids that go through this, I honestly don't know if I could do it.
<br />Thank you for helping me better understand the different emotions I'm getting from my son.
<br />
<br />He is still in the hospital and for now the only computer I have access to is my sisters,so I'll only be on about once a week.
<br />
<br />thank you all so much,
<br />
<br />Jamie<img src="i/expressions/rose.gif" border="0">
<br />
<br />
<br />
<br />
<br />
<br />
<br />
 

Liza

New member
Hi Jaimie, a few others mentioned counseling and it reminded me about one other thing that really helped us while we were waiting, I have no idea how I could have overlooked it. Transplant support group. Ask at your hospital where your son is getting his eval. if they have one. If they do, and the social worker should have mentioned it, GO. It is not only for recipients but also for those waiting and contemplating whether to be listed or not. Our support group at Stanford was wonderful but only met once a month. For Anna and I it was the one time a month, other than clinic visits and hospital stays, that we got to socialize. Remember though for us, we were far from home. The people at support group are a great help with preparing you, supporting you, and giving a whole range of experiences. Plus you get a chance to see how successful transplant can be past the 3 & 5 yr marks. We met a woman that was, darn I forget how many years post tx. She was living proof that you can go longer. We met Anabel Stynzel & Isabel Stynzel Barynes. They wrote the recently released book "The Power of Two". They are half Japanese, half German, twins with CF. Both with double lung tx. Anabel had her second while we were there and she was being released the day my Anna went down to the step-down unit from ICU. So be sure to check into whether your hospital has a lung transplant support group. They may also have a transplant caregivers support group.

I so hope your son is out of the hospital soon. Please keep us posted.
 

Liza

New member
Hi Jaimie, a few others mentioned counseling and it reminded me about one other thing that really helped us while we were waiting, I have no idea how I could have overlooked it. Transplant support group. Ask at your hospital where your son is getting his eval. if they have one. If they do, and the social worker should have mentioned it, GO. It is not only for recipients but also for those waiting and contemplating whether to be listed or not. Our support group at Stanford was wonderful but only met once a month. For Anna and I it was the one time a month, other than clinic visits and hospital stays, that we got to socialize. Remember though for us, we were far from home. The people at support group are a great help with preparing you, supporting you, and giving a whole range of experiences. Plus you get a chance to see how successful transplant can be past the 3 & 5 yr marks. We met a woman that was, darn I forget how many years post tx. She was living proof that you can go longer. We met Anabel Stynzel & Isabel Stynzel Barynes. They wrote the recently released book "The Power of Two". They are half Japanese, half German, twins with CF. Both with double lung tx. Anabel had her second while we were there and she was being released the day my Anna went down to the step-down unit from ICU. So be sure to check into whether your hospital has a lung transplant support group. They may also have a transplant caregivers support group.

I so hope your son is out of the hospital soon. Please keep us posted.
 

Liza

New member
Hi Jaimie, a few others mentioned counseling and it reminded me about one other thing that really helped us while we were waiting, I have no idea how I could have overlooked it. Transplant support group. Ask at your hospital where your son is getting his eval. if they have one. If they do, and the social worker should have mentioned it, GO. It is not only for recipients but also for those waiting and contemplating whether to be listed or not. Our support group at Stanford was wonderful but only met once a month. For Anna and I it was the one time a month, other than clinic visits and hospital stays, that we got to socialize. Remember though for us, we were far from home. The people at support group are a great help with preparing you, supporting you, and giving a whole range of experiences. Plus you get a chance to see how successful transplant can be past the 3 & 5 yr marks. We met a woman that was, darn I forget how many years post tx. She was living proof that you can go longer. We met Anabel Stynzel & Isabel Stynzel Barynes. They wrote the recently released book "The Power of Two". They are half Japanese, half German, twins with CF. Both with double lung tx. Anabel had her second while we were there and she was being released the day my Anna went down to the step-down unit from ICU. So be sure to check into whether your hospital has a lung transplant support group. They may also have a transplant caregivers support group.

I so hope your son is out of the hospital soon. Please keep us posted.
 

Liza

New member
Hi Jaimie, a few others mentioned counseling and it reminded me about one other thing that really helped us while we were waiting, I have no idea how I could have overlooked it. Transplant support group. Ask at your hospital where your son is getting his eval. if they have one. If they do, and the social worker should have mentioned it, GO. It is not only for recipients but also for those waiting and contemplating whether to be listed or not. Our support group at Stanford was wonderful but only met once a month. For Anna and I it was the one time a month, other than clinic visits and hospital stays, that we got to socialize. Remember though for us, we were far from home. The people at support group are a great help with preparing you, supporting you, and giving a whole range of experiences. Plus you get a chance to see how successful transplant can be past the 3 & 5 yr marks. We met a woman that was, darn I forget how many years post tx. She was living proof that you can go longer. We met Anabel Stynzel & Isabel Stynzel Barynes. They wrote the recently released book "The Power of Two". They are half Japanese, half German, twins with CF. Both with double lung tx. Anabel had her second while we were there and she was being released the day my Anna went down to the step-down unit from ICU. So be sure to check into whether your hospital has a lung transplant support group. They may also have a transplant caregivers support group.

I so hope your son is out of the hospital soon. Please keep us posted.
 

Liza

New member
Hi Jaimie, a few others mentioned counseling and it reminded me about one other thing that really helped us while we were waiting, I have no idea how I could have overlooked it. Transplant support group. Ask at your hospital where your son is getting his eval. if they have one. If they do, and the social worker should have mentioned it, GO. It is not only for recipients but also for those waiting and contemplating whether to be listed or not. Our support group at Stanford was wonderful but only met once a month. For Anna and I it was the one time a month, other than clinic visits and hospital stays, that we got to socialize. Remember though for us, we were far from home. The people at support group are a great help with preparing you, supporting you, and giving a whole range of experiences. Plus you get a chance to see how successful transplant can be past the 3 & 5 yr marks. We met a woman that was, darn I forget how many years post tx. She was living proof that you can go longer. We met Anabel Stynzel & Isabel Stynzel Barynes. They wrote the recently released book "The Power of Two". They are half Japanese, half German, twins with CF. Both with double lung tx. Anabel had her second while we were there and she was being released the day my Anna went down to the step-down unit from ICU. So be sure to check into whether your hospital has a lung transplant support group. They may also have a transplant caregivers support group.
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<br />I so hope your son is out of the hospital soon. Please keep us posted.
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