As it was said in her bio, the transplant is not a cure. Only a band-aid to help prolong her life. One that averages 10 years. Tranpslants have only been occuring successfully in the last 30 some years, and technology in the medical field is making leaps and bounds everyday. It is very likely she will face a need for another in the future...possibly a nearer future in her teen years or young adult. The medications she is on to prevent her new liver from rejecting also causes kidney failure and cancer. I had to sign a waiver before they would transplant her acknowledging this sad fact. If the liver doesn't fail first, she may need kidneys....or treatment for cancer. She is suppose to wear sunscreen year round, and in the summertime she is to not be outside during the peak hours of the day to avoid the sun and the damage and cancer it causes. Many pediatric transplant patients come back as teens with skin cancer, or cancer on their lips, the one area they forgot to use sunscreen on. Every time her skin colors from the sun, her risk increases so much more for skin cancer then a normal person. Her cells do not regenerate like a normal person. The meds prevent the cells from healing fast and recognizing foreign things so that it does not recognize the new liver as foreign and attack it causing rejection. This also puts her at a high risk of infections, a minor cold, flu, and virus can create an infection to occur because her body cannot protect itself, and cannot help heal itself as well from the infection. Her risk of death from those things and pneumonia and infection from a small cut is significantly higher then regular people from such minor, everyday illnesses. She must remain on meds for he rest of her life to help keep her body from rejecting her liver. as well as for supplements her body no longer seems to be able to produce properly on it's own. She cannot be later then an hour on her meds, otherwise she is at risk of rejection. Everytime her body deals with rejection, she must be treated in hospital on IV steroids to drop her immune system severely. Each time her liver sustains permanent damage that reduces the life span of that new organ. Each hospital visit opens her up to risk of a deadly virus, bacteria, infection etc...each IV insertion opens her up to risk of infection and blood poisoning , something not easily treated in healthy people, never-mind an immunnosuppressed child. If she chooses as a teenager to experiment with smoking, drugs, or alcohol, or even neglects to take her meds or take them on time...even a few times, and it causes or doesn't cause but she ends up with liver failure, they will refuse her to be re-listed for another transplant. She cannot be allowed to be a teenager and make mistakes and rebel and screw up like they all do...it could cost her her life, and she's already had her second chance, which she came close to not getting as well, so many others are waiting and dying everyday for that second chance at life. Because of many complications she endured before she finally received her second chance at life, her gift of life, she needs and has a chest brace to wear 23 hours a day to help push back in her rib cage that pushed out after transplant, due to her extremely soft bones and shorter leg from a recent (before transplant) break in it. That also has resulted in her needing special shoe inserts to help prop up the one side of her body to even out the leg length difference and help stop the possible curving of her spine and back pain from it. Another issue we face and deal with everyday is the brain and developmental delays she has. It was researched that pediatric transplant patients were showing brain development delays and issues with going so long with organs not functioning properly and delivering nutrients etc to the brain during it's prime developmental years. Feeny was tested at the age of 3 before transplant....and again at age 6 after transplant...at the age of 6 she was so far regressed she was less then she was at the age of 3. Because its still in research and not proven, thought the tests say alot, they cannot diagnose her with a title. Just a LONG list of whats wrong with her individually that required 6 days of extensive 3-5 hr long session per specialist in the Calgary top center for assessments. They give medications for ADHD to try to help her anxiety and her focus to help her brain process better in a chaotic school setting as well She tries hard everyday in school...but her socialization, view of the world, understanding, memory retention, processing etc hold her back hugely and cause her huge amounts of stress, self-doubt and fears and anxiety and frustration. She is always seen as a happy go lucky child though, never shy! She toughs through everything so bravely and positively!
I suppose many people reading these updates and have not known feeny all her life may not know all her restrictions since she had her transplant, besides what was in her bio on here. I'll fill in some more info here, not all of it...that would take me days though, lol :) Please feel free to ask questions as well, I haven't yet figured out how to reply on the webpage, it doesn't seem to let me when I try...I am not the most tech savvy tho, this blog is a first for me! lol So bear with me as I may just answer in future posts randomly!
As it was said in her bio, the transplant is not a cure. Only a band-aid to help prolong her life. One that averages 10 years. Tranpslants have only been occuring successfully in the last 30 some years, and technology in the medical field is making leaps and bounds everyday. It is very likely she will face a need for another in the future...possibly a nearer future in her teen years or young adult. The medications she is on to prevent her new liver from rejecting also causes kidney failure and cancer. I had to sign a waiver before they would transplant her acknowledging this sad fact. If the liver doesn't fail first, she may need kidneys....or treatment for cancer. She is suppose to wear sunscreen year round, and in the summertime she is to not be outside during the peak hours of the day to avoid the sun and the damage and cancer it causes. Many pediatric transplant patients come back as teens with skin cancer, or cancer on their lips, the one area they forgot to use sunscreen on. Every time her skin colors from the sun, her risk increases so much more for skin cancer then a normal person. Her cells do not regenerate like a normal person. The meds prevent the cells from healing fast and recognizing foreign things so that it does not recognize the new liver as foreign and attack it causing rejection. This also puts her at a high risk of infections, a minor cold, flu, and virus can create an infection to occur because her body cannot protect itself, and cannot help heal itself as well from the infection. Her risk of death from those things and pneumonia and infection from a small cut is significantly higher then regular people from such minor, everyday illnesses. She must remain on meds for he rest of her life to help keep her body from rejecting her liver. as well as for supplements her body no longer seems to be able to produce properly on it's own. She cannot be later then an hour on her meds, otherwise she is at risk of rejection. Everytime her body deals with rejection, she must be treated in hospital on IV steroids to drop her immune system severely. Each time her liver sustains permanent damage that reduces the life span of that new organ. Each hospital visit opens her up to risk of a deadly virus, bacteria, infection etc...each IV insertion opens her up to risk of infection and blood poisoning , something not easily treated in healthy people, never-mind an immunnosuppressed child. If she chooses as a teenager to experiment with smoking, drugs, or alcohol, or even neglects to take her meds or take them on time...even a few times, and it causes or doesn't cause but she ends up with liver failure, they will refuse her to be re-listed for another transplant. She cannot be allowed to be a teenager and make mistakes and rebel and screw up like they all do...it could cost her her life, and she's already had her second chance, which she came close to not getting as well, so many others are waiting and dying everyday for that second chance at life. Because of many complications she endured before she finally received her second chance at life, her gift of life, she needs and has a chest brace to wear 23 hours a day to help push back in her rib cage that pushed out after transplant, due to her extremely soft bones and shorter leg from a recent (before transplant) break in it. That also has resulted in her needing special shoe inserts to help prop up the one side of her body to even out the leg length difference and help stop the possible curving of her spine and back pain from it. Another issue we face and deal with everyday is the brain and developmental delays she has. It was researched that pediatric transplant patients were showing brain development delays and issues with going so long with organs not functioning properly and delivering nutrients etc to the brain during it's prime developmental years. Feeny was tested at the age of 3 before transplant....and again at age 6 after transplant...at the age of 6 she was so far regressed she was less then she was at the age of 3. Because its still in research and not proven, thought the tests say alot, they cannot diagnose her with a title. Just a LONG list of whats wrong with her individually that required 6 days of extensive 3-5 hr long session per specialist in the Calgary top center for assessments. They give medications for ADHD to try to help her anxiety and her focus to help her brain process better in a chaotic school setting as well She tries hard everyday in school...but her socialization, view of the world, understanding, memory retention, processing etc hold her back hugely and cause her huge amounts of stress, self-doubt and fears and anxiety and frustration. She is always seen as a happy go lucky child though, never shy! She toughs through everything so bravely and positively!
2 Comments
Brenda Frances
3/10/2013 12:02:10 am
Phoenix - what a brave and strong little girl. I don't personally know either of you -but I am reading your blog with interest and hope. As a mother Sonya -hold your head high and keep fighting the fight you have everyday to try and help your child as much as is humanly possible -I admire your strength (Hugs) for you -I am sure you could use a zillion. Phoenix -keep your spirits up - life is not easy for either of you -but you are giving it your all-keep fighting the fight-I hope to meet you both someday when you are back in Brooks. May God watch over you both.
Reply
Tina Rice
3/10/2013 01:40:35 am
Hi Phoenix & Sonya,
Reply
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