Transplantmommy
New member
Well, in my Transplant thread, someone asked me if I had any advice for those of you who are going to be going through all of this. Lets see if I can give some advice.....
1. Ask a lot of questions and don't be afraid to ask. The doctors normally do have answers for you. Ask questions like how they decide to list you, what will happen during the surgery, how long you will have to stay in the area afterwards (you have to find some sort of housing and have to have this planned out), how they will control your pain, things like that. I'm sure that I could answer some of them but everyone is different.
2. The moment you are listed....be prepared for the call!! I know a couple of people who were listed and then called within only hours. Then there are others who wait a while (I waited 5 months) but you still have to be ready. If you have kids, plan on who will take them. Have a phone tree set up....once you get the call, call your first person on the list (probably your parents or some sort of relative i would assume) but ask them not to call the other people on the list until someone calls them and says that you are actually in surgery (reason listed next).
3. There is something called a dry run. This is where you are called and told to get to the hospital because they have the organs and when you get there and they get all of the testing done on the organs, they could be no good and you could be sent home. You don't want to get people all hyped up and then let them down (especially if it's in the middle of the night). There are some people who get as far as the operating table and then the organs are found to be no good.
4. Have a plan on how you are going to get to the hospital when you get the call.....especially if you live far away! We had it set up to where I would go to an airport near here and I would have a med-flight pick me up and take me to the hospital since I live 6 hours away. For me, it was actually really good that I was already at the hospital because we were in the middle of a terrible snow storm and I wouldn't have made it to the hospital in time. I wouldn't have been able to fly because of the snow and it would have taken forever to drive. I would have missed that opportunity!
5. Be prepared to possibly have to go through therapy after the Tx, have tons of tests done, be in pain, wake up with a vent, have tubes all over the place, possible hallucinate from the medications, not be able to eat for a while (took me 5 days to be able to eat or them let me eat anything for that matter), and probably a few other things.
This is what I can think of off of the top of my head. If I can think of anything else I will post it or if anyone has questions, just ask!!!
1. Ask a lot of questions and don't be afraid to ask. The doctors normally do have answers for you. Ask questions like how they decide to list you, what will happen during the surgery, how long you will have to stay in the area afterwards (you have to find some sort of housing and have to have this planned out), how they will control your pain, things like that. I'm sure that I could answer some of them but everyone is different.
2. The moment you are listed....be prepared for the call!! I know a couple of people who were listed and then called within only hours. Then there are others who wait a while (I waited 5 months) but you still have to be ready. If you have kids, plan on who will take them. Have a phone tree set up....once you get the call, call your first person on the list (probably your parents or some sort of relative i would assume) but ask them not to call the other people on the list until someone calls them and says that you are actually in surgery (reason listed next).
3. There is something called a dry run. This is where you are called and told to get to the hospital because they have the organs and when you get there and they get all of the testing done on the organs, they could be no good and you could be sent home. You don't want to get people all hyped up and then let them down (especially if it's in the middle of the night). There are some people who get as far as the operating table and then the organs are found to be no good.
4. Have a plan on how you are going to get to the hospital when you get the call.....especially if you live far away! We had it set up to where I would go to an airport near here and I would have a med-flight pick me up and take me to the hospital since I live 6 hours away. For me, it was actually really good that I was already at the hospital because we were in the middle of a terrible snow storm and I wouldn't have made it to the hospital in time. I wouldn't have been able to fly because of the snow and it would have taken forever to drive. I would have missed that opportunity!
5. Be prepared to possibly have to go through therapy after the Tx, have tons of tests done, be in pain, wake up with a vent, have tubes all over the place, possible hallucinate from the medications, not be able to eat for a while (took me 5 days to be able to eat or them let me eat anything for that matter), and probably a few other things.
This is what I can think of off of the top of my head. If I can think of anything else I will post it or if anyone has questions, just ask!!!