transplant questions

cfgirl83

New member
<font color="#006600">i'm 18 and i'm going to start the transplant process and i was wondering about the listing process and the recovery process. ( i have a dog that needs me i kind of don't want to be in the hospital for ever).<br></font>  
 

cfgirl83

New member
<font color="#006600">i'm 18 and i'm going to start the transplant process and i was wondering about the listing process and the recovery process. ( i have a dog that needs me i kind of don't want to be in the hospital for ever).<br></font>
 

cfgirl83

New member
<font color="#006600">i'm 18 and i'm going to start the transplant process and i was wondering about the listing process and the recovery process. ( i have a dog that needs me i kind of don't want to be in the hospital for ever).<br></font>
 

summer732

New member
Everyone is different but I was only in the hospital for nine days after my transplant. But with that being said, I needed a lot of help when I got home to recover. My mom was there to help me get in and out of the bath, do the housework, laundry, cooking, etc. So you will need help afterwards to get back on your feet and feel normal again.
 

summer732

New member
Everyone is different but I was only in the hospital for nine days after my transplant. But with that being said, I needed a lot of help when I got home to recover. My mom was there to help me get in and out of the bath, do the housework, laundry, cooking, etc. So you will need help afterwards to get back on your feet and feel normal again.
 

summer732

New member
Everyone is different but I was only in the hospital for nine days after my transplant. But with that being said, I needed a lot of help when I got home to recover. My mom was there to help me get in and out of the bath, do the housework, laundry, cooking, etc. So you will need help afterwards to get back on your feet and feel normal again.
 

athanasia

New member
I was in for 2 1/2 weeks because my chest tubes were needed longer. As Margaret said, it is different for everyone. Also, depending how close you live to your transplant center, you may have to stay in town before transplant while you wait and after until they are ok with you going back home. My family and I stayed at a family house (similar to Ronald McDonald house where many families stay and share common rooms for cooking and eating but have their own private bedroom and bathroom) in the city of my center for 2 months after (which is common length of time post tx because they have to keep a close eye on your meds for the first several weeks to make sure they have levels correct) so you might have that to deal with as well. And, you will need a caretaker with you. Even if you are doing well, many places require you have someone with you to help you.

Just a few things to consider. Best of luck to you though!
 

athanasia

New member
I was in for 2 1/2 weeks because my chest tubes were needed longer. As Margaret said, it is different for everyone. Also, depending how close you live to your transplant center, you may have to stay in town before transplant while you wait and after until they are ok with you going back home. My family and I stayed at a family house (similar to Ronald McDonald house where many families stay and share common rooms for cooking and eating but have their own private bedroom and bathroom) in the city of my center for 2 months after (which is common length of time post tx because they have to keep a close eye on your meds for the first several weeks to make sure they have levels correct) so you might have that to deal with as well. And, you will need a caretaker with you. Even if you are doing well, many places require you have someone with you to help you.

Just a few things to consider. Best of luck to you though!
 

athanasia

New member
I was in for 2 1/2 weeks because my chest tubes were needed longer. As Margaret said, it is different for everyone. Also, depending how close you live to your transplant center, you may have to stay in town before transplant while you wait and after until they are ok with you going back home. My family and I stayed at a family house (similar to Ronald McDonald house where many families stay and share common rooms for cooking and eating but have their own private bedroom and bathroom) in the city of my center for 2 months after (which is common length of time post tx because they have to keep a close eye on your meds for the first several weeks to make sure they have levels correct) so you might have that to deal with as well. And, you will need a caretaker with you. Even if you are doing well, many places require you have someone with you to help you.
<br />
<br />Just a few things to consider. Best of luck to you though!
 

JT

New member
Curious how the process is going for you, cfgirl83...

You asked about the listing process (which is all I can share as I haven't been transplanted yet). I went through a couple day's worth of outpatient tests to be evaluated. Then went / and have gone to quarterly "check up" appointments to decide when to actually get on the list. I've done that for years and years. Thankfully we've all been on the same page (CF doc, transplant doc, and myself) in that we feel I'm almost in need. Of course it started with "not quite yet," went to "getting closer" to "probably at one of the next few appointments." Lots of unknowns but it's been good peace of mind to have the option for when needed... That's my experience.
 

JT

New member
Curious how the process is going for you, cfgirl83...

You asked about the listing process (which is all I can share as I haven't been transplanted yet). I went through a couple day's worth of outpatient tests to be evaluated. Then went / and have gone to quarterly "check up" appointments to decide when to actually get on the list. I've done that for years and years. Thankfully we've all been on the same page (CF doc, transplant doc, and myself) in that we feel I'm almost in need. Of course it started with "not quite yet," went to "getting closer" to "probably at one of the next few appointments." Lots of unknowns but it's been good peace of mind to have the option for when needed... That's my experience.
 

JT

New member
Curious how the process is going for you, cfgirl83...
<br />
<br />You asked about the listing process (which is all I can share as I haven't been transplanted yet). I went through a couple day's worth of outpatient tests to be evaluated. Then went / and have gone to quarterly "check up" appointments to decide when to actually get on the list. I've done that for years and years. Thankfully we've all been on the same page (CF doc, transplant doc, and myself) in that we feel I'm almost in need. Of course it started with "not quite yet," went to "getting closer" to "probably at one of the next few appointments." Lots of unknowns but it's been good peace of mind to have the option for when needed... That's my experience.
 

JustAndrea

New member
My work-up took a few months but that was me taking it slow. Scheduling a few appointments each visit is the best way to get things done. The only things that have a particular time to wait would be vaccinations. You have to do a series of 2 or 3 hepatitis shots which you have to wait so many weeks in between but it's not bad. Just a lot of doctor appointments for awhile.
After transplant I was in for two weeks and then I had to stay at a hotel by the hospital for two more weeks because you have to give blood everyday to regulate medicine, physical therapy and check in with the doctors. So it does depend on the person but it sounds like you have great motivation to get back to your dog which will make you fight that much harder. I think your caregiver also can play a big role in how things go. My mother was awesome and helped me for a few months to follow. She also bugged me to walk ,walk, walk which I hated at the time but glad she did it now. Good luck!
 

JustAndrea

New member
My work-up took a few months but that was me taking it slow. Scheduling a few appointments each visit is the best way to get things done. The only things that have a particular time to wait would be vaccinations. You have to do a series of 2 or 3 hepatitis shots which you have to wait so many weeks in between but it's not bad. Just a lot of doctor appointments for awhile.
After transplant I was in for two weeks and then I had to stay at a hotel by the hospital for two more weeks because you have to give blood everyday to regulate medicine, physical therapy and check in with the doctors. So it does depend on the person but it sounds like you have great motivation to get back to your dog which will make you fight that much harder. I think your caregiver also can play a big role in how things go. My mother was awesome and helped me for a few months to follow. She also bugged me to walk ,walk, walk which I hated at the time but glad she did it now. Good luck!
 

JustAndrea

New member
My work-up took a few months but that was me taking it slow. Scheduling a few appointments each visit is the best way to get things done. The only things that have a particular time to wait would be vaccinations. You have to do a series of 2 or 3 hepatitis shots which you have to wait so many weeks in between but it's not bad. Just a lot of doctor appointments for awhile.
<br />After transplant I was in for two weeks and then I had to stay at a hotel by the hospital for two more weeks because you have to give blood everyday to regulate medicine, physical therapy and check in with the doctors. So it does depend on the person but it sounds like you have great motivation to get back to your dog which will make you fight that much harder. I think your caregiver also can play a big role in how things go. My mother was awesome and helped me for a few months to follow. She also bugged me to walk ,walk, walk which I hated at the time but glad she did it now. Good luck!
<br />
 

Angel2393

New member
I was only in the hospital for 8 days, everyone was really suprised. I was eating and doing everything walking, in like 6 days when my chest tubes were takin out...the worst part of the whole surgory for me was the cathedor up my you know what hahahahah. Its crazy because now I feel like im completely normal and i do abs everything, i love it !!!!!!!!!!!!!!! i am 18 too, and got this wehn i was 14.
 

Angel2393

New member
I was only in the hospital for 8 days, everyone was really suprised. I was eating and doing everything walking, in like 6 days when my chest tubes were takin out...the worst part of the whole surgory for me was the cathedor up my you know what hahahahah. Its crazy because now I feel like im completely normal and i do abs everything, i love it !!!!!!!!!!!!!!! i am 18 too, and got this wehn i was 14.
 

Angel2393

New member
I was only in the hospital for 8 days, everyone was really suprised. I was eating and doing everything walking, in like 6 days when my chest tubes were takin out...the worst part of the whole surgory for me was the cathedor up my you know what hahahahah. Its crazy because now I feel like im completely normal and i do abs everything, i love it !!!!!!!!!!!!!!! i am 18 too, and got this wehn i was 14.
 

sk8rgrrrl4life

New member
Can you get tattoos and piercings after a double lung transplant ? One doctor told me yes after you wait a year or so and show now rejection and are good another said no but it wasn't a doctor it was a social worker at the university hospital were you told anything of the sort ? Because body modification is a big part of my life and i also plan on opening a tattoo shop and the social worker told me i can't even do my job ! Which makes no sense any input ?
 

sk8rgrrrl4life

New member
Can you get tattoos and piercings after a double lung transplant ? One doctor told me yes after you wait a year or so and show now rejection and are good another said no but it wasn't a doctor it was a social worker at the university hospital were you told anything of the sort ? Because body modification is a big part of my life and i also plan on opening a tattoo shop and the social worker told me i can't even do my job ! Which makes no sense any input ?
 
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