Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 -----Original Message----- Brad's been accepted for the transplant program in MN. Oh Diane, how absolutely wonderful!! I’m so happy for you & Brad. Are you excited, nervous, thrilled, all of the above? Sounds like Dr Gores has a few new members of his fan club. I’m assuming they gave Brad extra points, what MELD score did they list him at? Any idea of when things will really start moving along? Was the CC diagnosis wrong or ???? Doesn’t matter, I’m just very happy that the two of you have a chance at a new life, new liver and new birthday! Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (32) UC 91 - PSC 99 Listed 7/21 @ Baylor Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Barbara -- ya know, I don't know what I'd have done without you!! Truly. You were my first introduction to this new world of livers. You've given me and the rest of us here so much valuable information and support. Brad was accepted into the transplant program because of the confirmed cholangiocarcinoma diagnosis. Medicare won't cover it because it's considered " experimental " for CC. Yesterday when he got the call from Dr. Gores, I was ecstatic. Then so sorrowful. It breaks my heart that someone has to die for Brad to live. I'm not sure how to balance these feelings!! I guess I just feel guilty for being so happy. I think we'll be on the way to MN next week. Brad will first undergo 3 weeks of radiation and chemo. We come home for a couple of weeks, then go back to Mayo where they'll check him out, do some exploratory surgery, and then come home again. More chemo, then the " wait. " Barbara, I pray for you, Ken and your family always, as I do everyone here looking for hope and answers. Love, Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2006 Report Share Posted September 15, 2006 Liz, thank you for writing. With your CC, what type of surgery did you have? How long since your surgery? We too think Dr. Gores is the greatest. We're okay with the insurance issue. It was just startling that Medicare considers transplant for CC as " experimental. " Apparently Mayo has been trying to convince them it should be treated like other transplants. Other insurance companies consider it so, but it is taking time persuading Medicare. Thank you again, Diane > > Diane, > I am sorry about missing your postings, seems like > alot of Cholagiocarcinoma posts lately and I think I'm > getting everybody confused. Glad to hear Brad got > accepted into the transplant program...I am also a > patient of Dr. Gores' and I had CC. I didn't have a > transplant but the surgery I had there was close to > costing the same. I was in the hospital 18 days > there. I had Aetna HMO, and they did end up paying a > good portion of it. We had to pay a substantial > amount but a small price to pay to be alive. My case > was similar to Brads, I had numerous ERCP's here in > Virginia, and they never found the tumor in my bile > duct and they did biopsy after biopsy and still > nothing. > I finally had a doctor at MCV in Richmond, VA do an > ERCP and say he thought it was Cholangiocarcinoma but > couldn't prove it and then they hooked me up with Dr. > Gores..... I live in Virginia and every year I go back > to Dr. Gores for my checkup....I see another doctor at > UVA in Charlottesville, Dr. Berg for alternating 6 > month checkups. It is a shame that you have to worry > about the insurance part along with all the other > things that you are dealing with but it will all work > out. Somehow it always does. I wish Brad the best > and I know he is in the best hands being at the Mayo. > If you haven't guessed I am one of Dr. Gores biggest > fans and I just love him, and so does my family. He > is the greatest ever...... > > Liz in Fredericksburg VA > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2006 Report Share Posted September 15, 2006 Liz, thank you for writing. With your CC, what type of surgery did you have? How long since your surgery? We too think Dr. Gores is the greatest. We're okay with the insurance issue. It was just startling that Medicare considers transplant for CC as " experimental. " Apparently Mayo has been trying to convince them it should be treated like other transplants. Other insurance companies consider it so, but it is taking time persuading Medicare. Thank you again, Diane > > Diane, > I am sorry about missing your postings, seems like > alot of Cholagiocarcinoma posts lately and I think I'm > getting everybody confused. Glad to hear Brad got > accepted into the transplant program...I am also a > patient of Dr. Gores' and I had CC. I didn't have a > transplant but the surgery I had there was close to > costing the same. I was in the hospital 18 days > there. I had Aetna HMO, and they did end up paying a > good portion of it. We had to pay a substantial > amount but a small price to pay to be alive. My case > was similar to Brads, I had numerous ERCP's here in > Virginia, and they never found the tumor in my bile > duct and they did biopsy after biopsy and still > nothing. > I finally had a doctor at MCV in Richmond, VA do an > ERCP and say he thought it was Cholangiocarcinoma but > couldn't prove it and then they hooked me up with Dr. > Gores..... I live in Virginia and every year I go back > to Dr. Gores for my checkup....I see another doctor at > UVA in Charlottesville, Dr. Berg for alternating 6 > month checkups. It is a shame that you have to worry > about the insurance part along with all the other > things that you are dealing with but it will all work > out. Somehow it always does. I wish Brad the best > and I know he is in the best hands being at the Mayo. > If you haven't guessed I am one of Dr. Gores biggest > fans and I just love him, and so does my family. He > is the greatest ever...... > > Liz in Fredericksburg VA > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2006 Report Share Posted September 16, 2006 Diane, The surgery Dr. Nagorney did was almost a whipple, meaning that he didn't have to take alot of my pancreas. My CC was in the mid bile duct, it was an invasive grade 3 (of 4) mucinous adenocarcinoma, the tumor had invaded through the muscular wall and into the pancreas. So they shaved off the pancreas until they got clear margins. The liver biopsy showed psc stage IV with no malignancy noted in the liver. If I am to need a transplant in the future, it will be done at the Mayo because of the CC and of course I wouldn't go anywhere else anyways.....I presented with itching and jaundice in 02, I went to the Mayo Aug 03 for surgery for CC, it's been 3 years...I had chemo and radiation after the surgery, 6 weeks of radiation in hopes that this crap won't rear its ugly head again...Keep up with the posts I am looking forward hearing about Brad's treatment and transplant. Do you have a living donor or are you on the list? Take care, Liz in Fredericksburg VA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2006 Report Share Posted September 16, 2006 Liz, thank you for sharing. I'm going to " search " your past posts so you don't have to re-answer everything I'd like to ask you. Brad doesn't have a living donor, although Dr. Gores did mention that as a possibility. Thank you so much ! Diane > > Diane, > The surgery Dr. Nagorney did was almost a whipple, > meaning that he didn't have to take alot of my > pancreas. My CC was in the mid bile duct, it was an > invasive grade 3 (of 4) mucinous adenocarcinoma, the > tumor had invaded through the muscular wall and into > the pancreas. So they shaved off the pancreas until > they got clear margins. The liver biopsy showed psc > stage IV with no malignancy noted in the liver. If I > am to need a transplant in the future, it will be done > at the Mayo because of the CC and of course I wouldn't > go anywhere else anyways.....I presented with itching > and jaundice in 02, I went to the Mayo Aug 03 for > surgery for CC, it's been 3 years...I had chemo and > radiation after the surgery, 6 weeks of radiation in > hopes that this crap won't rear its ugly head > again...Keep up with the posts I am looking forward > hearing about Brad's treatment and transplant. > Do you have a living donor or are you on the list? > > Take care, > > Liz in Fredericksburg VA > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2006 Report Share Posted September 16, 2006 Liz, thank you for sharing. I'm going to " search " your past posts so you don't have to re-answer everything I'd like to ask you. Brad doesn't have a living donor, although Dr. Gores did mention that as a possibility. Thank you so much ! Diane > > Diane, > The surgery Dr. Nagorney did was almost a whipple, > meaning that he didn't have to take alot of my > pancreas. My CC was in the mid bile duct, it was an > invasive grade 3 (of 4) mucinous adenocarcinoma, the > tumor had invaded through the muscular wall and into > the pancreas. So they shaved off the pancreas until > they got clear margins. The liver biopsy showed psc > stage IV with no malignancy noted in the liver. If I > am to need a transplant in the future, it will be done > at the Mayo because of the CC and of course I wouldn't > go anywhere else anyways.....I presented with itching > and jaundice in 02, I went to the Mayo Aug 03 for > surgery for CC, it's been 3 years...I had chemo and > radiation after the surgery, 6 weeks of radiation in > hopes that this crap won't rear its ugly head > again...Keep up with the posts I am looking forward > hearing about Brad's treatment and transplant. > Do you have a living donor or are you on the list? > > Take care, > > Liz in Fredericksburg VA > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2006 Report Share Posted September 16, 2006 Liz, thank you for sharing. I'm going to " search " your past posts so you don't have to re-answer everything I'd like to ask you. Brad doesn't have a living donor, although Dr. Gores did mention that as a possibility. Thank you so much ! Diane > > Diane, > The surgery Dr. Nagorney did was almost a whipple, > meaning that he didn't have to take alot of my > pancreas. My CC was in the mid bile duct, it was an > invasive grade 3 (of 4) mucinous adenocarcinoma, the > tumor had invaded through the muscular wall and into > the pancreas. So they shaved off the pancreas until > they got clear margins. The liver biopsy showed psc > stage IV with no malignancy noted in the liver. If I > am to need a transplant in the future, it will be done > at the Mayo because of the CC and of course I wouldn't > go anywhere else anyways.....I presented with itching > and jaundice in 02, I went to the Mayo Aug 03 for > surgery for CC, it's been 3 years...I had chemo and > radiation after the surgery, 6 weeks of radiation in > hopes that this crap won't rear its ugly head > again...Keep up with the posts I am looking forward > hearing about Brad's treatment and transplant. > Do you have a living donor or are you on the list? > > Take care, > > Liz in Fredericksburg VA > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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