So many things changed after tx. First Garran has gained over 10 pounds since his transplant in Feb. And will soon be able to get rid of his G tube as he no longer uses it.
He takes a number of medications post Tx but as with CF these meds are different for everyone that has a tx. this is the list of his meds:
Prograf (anti rejection med)
Cell Cept
Acyclovir
prednesone
Actigall
prilosec
AquADEK
pancreacarb
magnesium oxcide (prograf depletes magnesium)
Dapsone
Calcium +D
the prednisone and the prograf levels vary depending on his tacrolimus levels in his blood and also if there is a rejection. He no longer takes any kinds of breathing treatments or CPT. post tx he is not allowed to take any NSAIDS and has to wear a med alert bracelet stating he has a tx and cant take these as they react very badly with the antirejection meds.
He is still healing, most people are able to go back to regular activities after 6 weeks. He is able to do more than we actually let him. He still has the wires in his sternum, and they protrude a bit, so I am very causious about his play activities. IE no throwing balls at his chest etc...
Otherwise he runs and plays and most of the time has more stamina than I do. He rarely gets out of breath. <img src="i/expressions/face-icon-small-smile.gif" border="0">
His incision is completely healed and the spots where the chest tubes were are completely healed.
Post tx you usually have a broncoscopy every 3 months til the year mark. then it is every year. And most people encounter some sort of acute rejection following tx, this is normal. He has had some rejection both bronchs post tx. But with no symptoms of rejection.
He has to have his vitals taken daily to watch for any changes in temperature, or blood pressure. I also check his O2 sats every night, more out of habit and for my own benefit. He sats between 97 and 100 on room air all the time.
Prior to tx he was satting at 91% with 2-4 litres of O2.
He feels good. He is able to be a normal kid. And that is so great to see. The maintenence is not even a quarter of what he was doing pre tx. And he loves not doing the vest or nebs.
I hope this answered some of your questions if you want you can PM me if you have any others.
He takes a number of medications post Tx but as with CF these meds are different for everyone that has a tx. this is the list of his meds:
Prograf (anti rejection med)
Cell Cept
Acyclovir
prednesone
Actigall
prilosec
AquADEK
pancreacarb
magnesium oxcide (prograf depletes magnesium)
Dapsone
Calcium +D
the prednisone and the prograf levels vary depending on his tacrolimus levels in his blood and also if there is a rejection. He no longer takes any kinds of breathing treatments or CPT. post tx he is not allowed to take any NSAIDS and has to wear a med alert bracelet stating he has a tx and cant take these as they react very badly with the antirejection meds.
He is still healing, most people are able to go back to regular activities after 6 weeks. He is able to do more than we actually let him. He still has the wires in his sternum, and they protrude a bit, so I am very causious about his play activities. IE no throwing balls at his chest etc...
Otherwise he runs and plays and most of the time has more stamina than I do. He rarely gets out of breath. <img src="i/expressions/face-icon-small-smile.gif" border="0">
His incision is completely healed and the spots where the chest tubes were are completely healed.
Post tx you usually have a broncoscopy every 3 months til the year mark. then it is every year. And most people encounter some sort of acute rejection following tx, this is normal. He has had some rejection both bronchs post tx. But with no symptoms of rejection.
He has to have his vitals taken daily to watch for any changes in temperature, or blood pressure. I also check his O2 sats every night, more out of habit and for my own benefit. He sats between 97 and 100 on room air all the time.
Prior to tx he was satting at 91% with 2-4 litres of O2.
He feels good. He is able to be a normal kid. And that is so great to see. The maintenence is not even a quarter of what he was doing pre tx. And he loves not doing the vest or nebs.
I hope this answered some of your questions if you want you can PM me if you have any others.