amy229
06-30-2005, 09:55 PM
I am a 33 year old woman, I had my first liver resection at 21, they removed 2 tumors, my appendix ,my gallblasdder and it cuased me to miscarry what would have been my 3rd child. In 2001 at the age of 29 I had to have another resection and they removed 2 more tumors. Now at 33 they have found another tumor, this time they are going to do the RAF procedure to remove it,after that my Dr. said I will need a liver transplant. I am to say the least very overwhelmed and worried .I have 3 kids at home and my youngest is only 4.The dr said I have a rare disease called Adenomatosis(spelling?). If anyone has any advise or anything helpfull please let me know. I'm very worried about the procedure and the transplant I'm going to have to have.Do you have to wait a long time for a transplant? Are you in the hospital a long time? are you sore for a long time?Does it change your life forever???
Sponsor
happyelf
07-01-2005, 01:49 AM
Hi Amy229...Welcome to the boards. You have come to the right place for support and advice...you're not alone. I know you're really scared--you have 3 kids and you are a young mom...(you did say 3 right?)and are faced with an overwhelming situation. I am a 40yr old mom of 3--my youngest are 5yr old twins. While I don't have your disease, I do know abt it and am familiar w/liver transplants.
The only thing I know abt RAF is what I read from your other post... Did your dr say you will definitely have to have a transplant after that procedure-(if you qualify)- or is it only if it doesn't work the way they want it to? It's good you're going to see someone who knows abt this disease...sounds like you're in great hands.
Cadaver livers sometimes take awhile to get--months or yrs-depending where you are on the list, which depends on your area of the country, overall health, bloodtype and size of liver you need/available...etc
There is a "Living Liver Donor" program--(my hosp does them-it's relatively new-they did their first in 1999-there are only 50 centers Worldwide doing them) but it's a great alternative to a long wait. The donor must be 18-55, a blood relative-a sibling, child, parent, or other "emotionally related" donor-a spouse or in law...etc. They must be your similar size/weight and bloodtype match. They take the right lobe--(it works out to be one person has 60% of the liver and the other gets 40%--I'm not sure who gets which amt)but w/in three months both livers are back to 100% size. Even tho I was at the top of the list, this was the option I was checking in to--b/c of the wait involved.
You will make it through this--You can do it. You have 3 wonderful kids who need you, and you need them. This is so scary I know--but you are in good hands. Yes, you'll be sore, but you gave birth to 4 kids--this should be nothing... ;) You'll have follow up care every step of the way--and everything will be monitored to make your life as easy as possible. Pain free, probably not--but they'll keep you comfortable. Yep--you'll need to take meds daily for anti-rejection, but you'll be alive. So yes, your life will change, just from that standpoint-but you'll lead a normal productive, full life like most transplant patients do. The odds are in your favor. :) It will be worth it. You''ll see those beautiful children grow up. Hopefully this helped you...I'm so sorry you have to go thru this. Any other questions I can answer, let me know. Take care and hang in there....
HappyElf/Gina
The only thing I know abt RAF is what I read from your other post... Did your dr say you will definitely have to have a transplant after that procedure-(if you qualify)- or is it only if it doesn't work the way they want it to? It's good you're going to see someone who knows abt this disease...sounds like you're in great hands.
Cadaver livers sometimes take awhile to get--months or yrs-depending where you are on the list, which depends on your area of the country, overall health, bloodtype and size of liver you need/available...etc
There is a "Living Liver Donor" program--(my hosp does them-it's relatively new-they did their first in 1999-there are only 50 centers Worldwide doing them) but it's a great alternative to a long wait. The donor must be 18-55, a blood relative-a sibling, child, parent, or other "emotionally related" donor-a spouse or in law...etc. They must be your similar size/weight and bloodtype match. They take the right lobe--(it works out to be one person has 60% of the liver and the other gets 40%--I'm not sure who gets which amt)but w/in three months both livers are back to 100% size. Even tho I was at the top of the list, this was the option I was checking in to--b/c of the wait involved.
You will make it through this--You can do it. You have 3 wonderful kids who need you, and you need them. This is so scary I know--but you are in good hands. Yes, you'll be sore, but you gave birth to 4 kids--this should be nothing... ;) You'll have follow up care every step of the way--and everything will be monitored to make your life as easy as possible. Pain free, probably not--but they'll keep you comfortable. Yep--you'll need to take meds daily for anti-rejection, but you'll be alive. So yes, your life will change, just from that standpoint-but you'll lead a normal productive, full life like most transplant patients do. The odds are in your favor. :) It will be worth it. You''ll see those beautiful children grow up. Hopefully this helped you...I'm so sorry you have to go thru this. Any other questions I can answer, let me know. Take care and hang in there....
HappyElf/Gina
amy229
07-01-2005, 02:51 PM
Thank you Happyelf/Gina My Dr. is in St louis and they are supposed to be some of the best in the country, I have to drive 4 hours to see them.They said I will need a transplant even after the RAF because with Adenomatosis my body just keeps growing more tumors everytime they remove some.This is my 5th tumor I have had 2 resection surgeries and now the RAF.So have you had a liver transplant? Or do you need to have one?Thank you so much for your answers and thoughts.
AMY
AMY