Questions about hospitalization for transplant surgery

[Shoshanna]

For those of you who have been through it, I'm just wondering the following:

1. Can people bring us an i-pod/magazines/books/our computer while in the hospital or are "outside items" off limits due to germs? What's acceptable and what's not?

2. What do we do to communicate if we have a tube down our throat?

3. Are all relatives/friends allowed in the ICU or only immediate family? I know this may be up to the individual hospital, but just wondering what the norm tends to be.

4. I have a 15 month-old son who is NOT in daycare (germs)...would I be able to see him?

5. Can my husband sleep over in the ICU room w/me?

Would love to know the hardest part of getting through that first week post-surgery and any practical advice you can offer to make things easier.

Thanks!

 

[Shoshanna]

For those of you who have been through it, I'm just wondering the following:

1. Can people bring us an i-pod/magazines/books/our computer while in the hospital or are "outside items" off limits due to germs? What's acceptable and what's not?

2. What do we do to communicate if we have a tube down our throat?

3. Are all relatives/friends allowed in the ICU or only immediate family? I know this may be up to the individual hospital, but just wondering what the norm tends to be.

4. I have a 15 month-old son who is NOT in daycare (germs)...would I be able to see him?

5. Can my husband sleep over in the ICU room w/me?

Would love to know the hardest part of getting through that first week post-surgery and any practical advice you can offer to make things easier.

Thanks!

 

[Shoshanna]

For those of you who have been through it, I'm just wondering the following:

1. Can people bring us an i-pod/magazines/books/our computer while in the hospital or are "outside items" off limits due to germs? What's acceptable and what's not?

2. What do we do to communicate if we have a tube down our throat?

3. Are all relatives/friends allowed in the ICU or only immediate family? I know this may be up to the individual hospital, but just wondering what the norm tends to be.

4. I have a 15 month-old son who is NOT in daycare (germs)...would I be able to see him?

5. Can my husband sleep over in the ICU room w/me?

Would love to know the hardest part of getting through that first week post-surgery and any practical advice you can offer to make things easier.

Thanks!

 

[EnergyGal]

For those of you who have been through it, I'm just wondering the following: 1. Can people bring us an i-pod/magazines/books/our computer while in the hospital or are "outside items" off limits due to germs? Of course you can. At least my center would allow this. They want to keep you busy and just holding a book or writing helps in your recovery. My surgeon asked me If I wanted my computer lol

2. What do we do to communicate if we have a tube down our throat? You are very sedated but some patients talk with their hands (like me, believe it or not, I learned very quickly and it was quite funny what I did to communicate. Hopefully you will not be aware of the tube down your throat and will be off the respirator within a few hours.

3. Are all relatives/friends allowed in the ICU or only immediate family? I believe immediate family at first and then later on, you can invite friend. Your visitors wear masks and gowns.

4. I have a 15 month-old son who is NOT in daycare (germs)...would I be able to see him? I cannot answer this for you.

5. Can my husband sleep over in the ICU room w/me? Some hospitals allow this and others do not.

Would love to know the hardest part of getting through that first week post-surgery and any practical advice you can offer to make things easier.


I had two different experiences since I had two transplants<img src="i/expressions/face-icon-small-smile.gif" border="0">

The hardest part is letting go of the fear. Fear that you may not be able to move around and walking. Be careful when you walk but do not be afraid. Get yourself in the best shape physcially as possible prior to tx, One day at a time. If they want you to walk and you do not have any energy, just try and take a few steps. If you need to rest, ask them to come back again later on if they can and walk again. Walking will get you well very quickly. Also exercising in bed really helps. Check the transplant forum and the exercise section for some tips I gave to others on exercise. Feel free to PM me.

Also check out transplantbuddies.org. There are tons of people there who can answer your questions and we have some subjects on specific transplant topics. We had a discussion about the ICU that would be important for you to read.

 

[EnergyGal]

For those of you who have been through it, I'm just wondering the following: 1. Can people bring us an i-pod/magazines/books/our computer while in the hospital or are "outside items" off limits due to germs? Of course you can. At least my center would allow this. They want to keep you busy and just holding a book or writing helps in your recovery. My surgeon asked me If I wanted my computer lol

2. What do we do to communicate if we have a tube down our throat? You are very sedated but some patients talk with their hands (like me, believe it or not, I learned very quickly and it was quite funny what I did to communicate. Hopefully you will not be aware of the tube down your throat and will be off the respirator within a few hours.

3. Are all relatives/friends allowed in the ICU or only immediate family? I believe immediate family at first and then later on, you can invite friend. Your visitors wear masks and gowns.

4. I have a 15 month-old son who is NOT in daycare (germs)...would I be able to see him? I cannot answer this for you.

5. Can my husband sleep over in the ICU room w/me? Some hospitals allow this and others do not.

Would love to know the hardest part of getting through that first week post-surgery and any practical advice you can offer to make things easier.


I had two different experiences since I had two transplants<img src="i/expressions/face-icon-small-smile.gif" border="0">

The hardest part is letting go of the fear. Fear that you may not be able to move around and walking. Be careful when you walk but do not be afraid. Get yourself in the best shape physcially as possible prior to tx, One day at a time. If they want you to walk and you do not have any energy, just try and take a few steps. If you need to rest, ask them to come back again later on if they can and walk again. Walking will get you well very quickly. Also exercising in bed really helps. Check the transplant forum and the exercise section for some tips I gave to others on exercise. Feel free to PM me.

Also check out transplantbuddies.org. There are tons of people there who can answer your questions and we have some subjects on specific transplant topics. We had a discussion about the ICU that would be important for you to read.

 

[EnergyGal]

For those of you who have been through it, I'm just wondering the following: 1. Can people bring us an i-pod/magazines/books/our computer while in the hospital or are "outside items" off limits due to germs? Of course you can. At least my center would allow this. They want to keep you busy and just holding a book or writing helps in your recovery. My surgeon asked me If I wanted my computer lol

2. What do we do to communicate if we have a tube down our throat? You are very sedated but some patients talk with their hands (like me, believe it or not, I learned very quickly and it was quite funny what I did to communicate. Hopefully you will not be aware of the tube down your throat and will be off the respirator within a few hours.

3. Are all relatives/friends allowed in the ICU or only immediate family? I believe immediate family at first and then later on, you can invite friend. Your visitors wear masks and gowns.

4. I have a 15 month-old son who is NOT in daycare (germs)...would I be able to see him? I cannot answer this for you.

5. Can my husband sleep over in the ICU room w/me? Some hospitals allow this and others do not.

Would love to know the hardest part of getting through that first week post-surgery and any practical advice you can offer to make things easier.


I had two different experiences since I had two transplants<img src="i/expressions/face-icon-small-smile.gif" border="0">

The hardest part is letting go of the fear. Fear that you may not be able to move around and walking. Be careful when you walk but do not be afraid. Get yourself in the best shape physcially as possible prior to tx, One day at a time. If they want you to walk and you do not have any energy, just try and take a few steps. If you need to rest, ask them to come back again later on if they can and walk again. Walking will get you well very quickly. Also exercising in bed really helps. Check the transplant forum and the exercise section for some tips I gave to others on exercise. Feel free to PM me.

Also check out transplantbuddies.org. There are tons of people there who can answer your questions and we have some subjects on specific transplant topics. We had a discussion about the ICU that would be important for you to read.

 

[Marjolein]

I was very awake the last 16 hours or so on the vent... Didn't like it one bit. But i could communicate. Did this with my hands and with a letter card. It had the alphabet on it and i could 'write' words that way. Very useful, they had that in the icu. Everyone could come and see me there, i only had a few people visit me at the same time ones a day (apart from my mom and dad and sis) they were with me a lot. I could have averything in icu, only no flowers and such ofcourse. I don't think anyone could sleep in my room... But i think that's up to the different centers, also with your son.

 

[Marjolein]

I was very awake the last 16 hours or so on the vent... Didn't like it one bit. But i could communicate. Did this with my hands and with a letter card. It had the alphabet on it and i could 'write' words that way. Very useful, they had that in the icu. Everyone could come and see me there, i only had a few people visit me at the same time ones a day (apart from my mom and dad and sis) they were with me a lot. I could have averything in icu, only no flowers and such ofcourse. I don't think anyone could sleep in my room... But i think that's up to the different centers, also with your son.

 

[Marjolein]

I was very awake the last 16 hours or so on the vent... Didn't like it one bit. But i could communicate. Did this with my hands and with a letter card. It had the alphabet on it and i could 'write' words that way. Very useful, they had that in the icu. Everyone could come and see me there, i only had a few people visit me at the same time ones a day (apart from my mom and dad and sis) they were with me a lot. I could have averything in icu, only no flowers and such ofcourse. I don't think anyone could sleep in my room... But i think that's up to the different centers, also with your son.

 

[LouLou]

Shoshanna, Are you actively listed? What an exciting and nerve wracking time it must be. Best wishes - keep us posted on your progress through the process.

 

[LouLou]

Shoshanna, Are you actively listed? What an exciting and nerve wracking time it must be. Best wishes - keep us posted on your progress through the process.

 

[LouLou]

Shoshanna, Are you actively listed? What an exciting and nerve wracking time it must be. Best wishes - keep us posted on your progress through the process.

 

[Shoshanna]

Thanks for all of your responses.
Yes, I've active and waiting. Trying to prepare as best I can while still going about my everyday life.
We just finished redoing some bedrooms/bathrooms in our house and the decorating has been a fun distraction. I truly believe that distractions are a must, no matter where you're at in life!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Risa, I'll look into that tx website. Thanks!

 

[Shoshanna]

Thanks for all of your responses.
Yes, I've active and waiting. Trying to prepare as best I can while still going about my everyday life.
We just finished redoing some bedrooms/bathrooms in our house and the decorating has been a fun distraction. I truly believe that distractions are a must, no matter where you're at in life!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Risa, I'll look into that tx website. Thanks!

 

[Shoshanna]

Thanks for all of your responses.
Yes, I've active and waiting. Trying to prepare as best I can while still going about my everyday life.
We just finished redoing some bedrooms/bathrooms in our house and the decorating has been a fun distraction. I truly believe that distractions are a must, no matter where you're at in life!!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Risa, I'll look into that tx website. Thanks!

 

[EnergyGal]

Keeping busy is very important. I started back into my drawing at the time of my wait and anytime I had anxiety, I would take out my markers and start writing words and made a collage around the words. I made a number of pictures and turned it into a display on my wall. When the media contacted me after my transplant they took a picture of me looking into the mirror with my surrounding art work.

IT is a good thing that you are getting all the construction work done now because when you get your new lungs, we are not suppose to be around any kinds of construction dust. When you tear down wallpaper, there are many gross things hanging around like mold under the paper.

 

[EnergyGal]

Keeping busy is very important. I started back into my drawing at the time of my wait and anytime I had anxiety, I would take out my markers and start writing words and made a collage around the words. I made a number of pictures and turned it into a display on my wall. When the media contacted me after my transplant they took a picture of me looking into the mirror with my surrounding art work.

IT is a good thing that you are getting all the construction work done now because when you get your new lungs, we are not suppose to be around any kinds of construction dust. When you tear down wallpaper, there are many gross things hanging around like mold under the paper.

 

[EnergyGal]

Keeping busy is very important. I started back into my drawing at the time of my wait and anytime I had anxiety, I would take out my markers and start writing words and made a collage around the words. I made a number of pictures and turned it into a display on my wall. When the media contacted me after my transplant they took a picture of me looking into the mirror with my surrounding art work.

IT is a good thing that you are getting all the construction work done now because when you get your new lungs, we are not suppose to be around any kinds of construction dust. When you tear down wallpaper, there are many gross things hanging around like mold under the paper.

 

[beyerdug]

I work in a Tx ICU and can tell you a few things from that perspective and according to our rules and usual outcomes.
1. You can have the types of items you listed.
2. I would suggest pen and paper to communicate with, a lot of our lung tx pts actually do well initially and are off the ventilator shortly after the sedation wears off. Of course there are others that stay on a while so pen and paper are useful tools.
3. Energygal said what I would say here.
4. No children allowed in the icu period. However, I have seen exceptions. It puts all tx pts at risk though.
5. Once again, I have seen exceptions to this rule but no one is supposed to sleep in the icu. There really isn't enough room and pts need rest and nurses need time to work. The exceptions are usually made when the family discontinues care for their loved one and are waiting for them to pass.

Energygal hit it again when she said to get in the best shape you can before the tx and try to get out of bed when they ask you to after the tx. This is the best advise for recovery along with a strong will. Good luck and I hope all goes well for you.

 

[beyerdug]

I work in a Tx ICU and can tell you a few things from that perspective and according to our rules and usual outcomes.
1. You can have the types of items you listed.
2. I would suggest pen and paper to communicate with, a lot of our lung tx pts actually do well initially and are off the ventilator shortly after the sedation wears off. Of course there are others that stay on a while so pen and paper are useful tools.
3. Energygal said what I would say here.
4. No children allowed in the icu period. However, I have seen exceptions. It puts all tx pts at risk though.
5. Once again, I have seen exceptions to this rule but no one is supposed to sleep in the icu. There really isn't enough room and pts need rest and nurses need time to work. The exceptions are usually made when the family discontinues care for their loved one and are waiting for them to pass.

Energygal hit it again when she said to get in the best shape you can before the tx and try to get out of bed when they ask you to after the tx. This is the best advise for recovery along with a strong will. Good luck and I hope all goes well for you.