Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Are you still working? Do you have any idea of how many are ahead of you on the list? Are your eyes still bothering you? I checked yesterday and Baylor added another person (with a MELD of 11-18) to their AB list. So, by the time they get around to adding Ken, who knows how many will be listed ahead of him. That strangely leaves me with both comfort and fear. Ken is so uncomfortable, this heat doesn’t help, so he stays in most of the time. Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Are you still working? Do you have any idea of how many are ahead of you on the list? Are your eyes still bothering you? I checked yesterday and Baylor added another person (with a MELD of 11-18) to their AB list. So, by the time they get around to adding Ken, who knows how many will be listed ahead of him. That strangely leaves me with both comfort and fear. Ken is so uncomfortable, this heat doesn’t help, so he stays in most of the time. Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Hi Barb, There are currently 9 people in the 19-24 MELD range for type A blood in the OPO I'm waiting in (Michigan). Since my MELD is 19 I'm near the bottom of that list. In the 17 months that I've been waiting, roughly 100 different individuals have been in that MELD range or higher in the type A waiting list. So there is a lot of turnover - everyone else in the 19-24 range has been there less than 2 months. My eyesight problem cleared up when I started taking vitamin E & D supplements. I had been taking vitamin K and when I first noticed the vision problem added vitamin A. That fixed things for a while, then my night vision got gradually worse, a retinal specialist could find any physical cause so I theorized with my PCP that vitamin deficiency might be the cause. The result was adding the supplements and the pleasure of having the blind spot disappear. I am still working, although fatigue is an ever increasing problem. I hope that Ken hears back soon about his listing and that events click along quickly to get him a transplant without too long a waiting time. Tim R > > Are you still working? Do you have any idea of how many are ahead of > you on the list? Are your eyes still bothering you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Hi Barb, There are currently 9 people in the 19-24 MELD range for type A blood in the OPO I'm waiting in (Michigan). Since my MELD is 19 I'm near the bottom of that list. In the 17 months that I've been waiting, roughly 100 different individuals have been in that MELD range or higher in the type A waiting list. So there is a lot of turnover - everyone else in the 19-24 range has been there less than 2 months. My eyesight problem cleared up when I started taking vitamin E & D supplements. I had been taking vitamin K and when I first noticed the vision problem added vitamin A. That fixed things for a while, then my night vision got gradually worse, a retinal specialist could find any physical cause so I theorized with my PCP that vitamin deficiency might be the cause. The result was adding the supplements and the pleasure of having the blind spot disappear. I am still working, although fatigue is an ever increasing problem. I hope that Ken hears back soon about his listing and that events click along quickly to get him a transplant without too long a waiting time. Tim R > > Are you still working? Do you have any idea of how many are ahead of > you on the list? Are your eyes still bothering you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Hi Barb, There are currently 9 people in the 19-24 MELD range for type A blood in the OPO I'm waiting in (Michigan). Since my MELD is 19 I'm near the bottom of that list. In the 17 months that I've been waiting, roughly 100 different individuals have been in that MELD range or higher in the type A waiting list. So there is a lot of turnover - everyone else in the 19-24 range has been there less than 2 months. My eyesight problem cleared up when I started taking vitamin E & D supplements. I had been taking vitamin K and when I first noticed the vision problem added vitamin A. That fixed things for a while, then my night vision got gradually worse, a retinal specialist could find any physical cause so I theorized with my PCP that vitamin deficiency might be the cause. The result was adding the supplements and the pleasure of having the blind spot disappear. I am still working, although fatigue is an ever increasing problem. I hope that Ken hears back soon about his listing and that events click along quickly to get him a transplant without too long a waiting time. Tim R > > Are you still working? Do you have any idea of how many are ahead of > you on the list? Are your eyes still bothering you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 -----Original Message----- In the 17 months that I've been waiting, Is the waiting and wondering driving you crazy? 17 months seems like forever to me, it must to you too. How do you manage to remain so calm? Is the second time around more scary or less? If I get too nosey, just tell me. Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 -----Original Message----- In the 17 months that I've been waiting, Is the waiting and wondering driving you crazy? 17 months seems like forever to me, it must to you too. How do you manage to remain so calm? Is the second time around more scary or less? If I get too nosey, just tell me. Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 -----Original Message----- In the 17 months that I've been waiting, Is the waiting and wondering driving you crazy? 17 months seems like forever to me, it must to you too. How do you manage to remain so calm? Is the second time around more scary or less? If I get too nosey, just tell me. Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 > -----Original Message----- > In the 17 months that I've been waiting, > > Is the waiting and wondering driving you crazy? 17 months seems like > forever to me, it must to you too. How do you manage to remain so calm? > Is the second time around more scary or less? No, its not driving me crazy. Although at times I wish it would happen so I could get back to better health. When I was relisted in Feb of last year I had a MELD of 22 and the estimated waiting time was a few months. I actually didn't feel too bad at the time, but knew how swift a turn for the worse can be, so I was ready to have the transplant any time. I am glad that my helth has remained stable (thank to urso, fish oil and vitamins). I'd like to get as much time out of this liver as possible. The second time around is less scary for me. I know what to expect, having been through it all once. Of course this next time may not be as easy - complications can always happen. In any event the waiting is part of what I have to do right now, and life is how you live with what you have, so I try to do the best with the situation I'm given. Tim R, ltx 1998, recurrent PSC 2002, relisted 2005, MELD 19 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 > -----Original Message----- > In the 17 months that I've been waiting, > > Is the waiting and wondering driving you crazy? 17 months seems like > forever to me, it must to you too. How do you manage to remain so calm? > Is the second time around more scary or less? No, its not driving me crazy. Although at times I wish it would happen so I could get back to better health. When I was relisted in Feb of last year I had a MELD of 22 and the estimated waiting time was a few months. I actually didn't feel too bad at the time, but knew how swift a turn for the worse can be, so I was ready to have the transplant any time. I am glad that my helth has remained stable (thank to urso, fish oil and vitamins). I'd like to get as much time out of this liver as possible. The second time around is less scary for me. I know what to expect, having been through it all once. Of course this next time may not be as easy - complications can always happen. In any event the waiting is part of what I have to do right now, and life is how you live with what you have, so I try to do the best with the situation I'm given. Tim R, ltx 1998, recurrent PSC 2002, relisted 2005, MELD 19 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 > -----Original Message----- > In the 17 months that I've been waiting, > > Is the waiting and wondering driving you crazy? 17 months seems like > forever to me, it must to you too. How do you manage to remain so calm? > Is the second time around more scary or less? No, its not driving me crazy. Although at times I wish it would happen so I could get back to better health. When I was relisted in Feb of last year I had a MELD of 22 and the estimated waiting time was a few months. I actually didn't feel too bad at the time, but knew how swift a turn for the worse can be, so I was ready to have the transplant any time. I am glad that my helth has remained stable (thank to urso, fish oil and vitamins). I'd like to get as much time out of this liver as possible. The second time around is less scary for me. I know what to expect, having been through it all once. Of course this next time may not be as easy - complications can always happen. In any event the waiting is part of what I have to do right now, and life is how you live with what you have, so I try to do the best with the situation I'm given. Tim R, ltx 1998, recurrent PSC 2002, relisted 2005, MELD 19 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 Thank you Tim, you really are an inspiration to so many of us. I love your outlook on things. I’d like for Ken to wait longer too, but can’t get the HE symptoms out of my mind. I think he could manage with all the other stuff, at least for a while longer, but that confusion/seeing things was/is so scary. I just don’t want to have to deal with that ever again. Hope you have a good 4th Of July, Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Has your tx surgeon talked to you about using an O donor instead? I am O and my son is A and I gave to him? MartiTim Romlein wrote: Hi Barb,There are currently 9 people in the 19-24 MELD range for type A blood in the OPO I'm waiting in (Michigan). Since my MELD is 19 I'm near the bottom of that list. In the 17 months that I've been waiting, roughly 100 different individuals have been in that MELD range or higher in the type A waiting list. So there is a lot of turnover - everyone else in the 19-24 range has been there less than 2 months.My eyesight problem cleared up when I started taking vitamin E & D supplements. I had been taking vitamin K and when I first noticed the vision problem added vitamin A. That fixed things for a while, then my night vision got gradually worse, a retinal specialist could find any physical cause so I theorized with my PCP that vitamin deficiency might be the cause. The result was adding the supplements and the pleasure of having the blind spot disappear.I am still working, although fatigue is an ever increasing problem.I hope that Ken hears back soon about his listing and that events click along quickly to get him a transplant without too long a waiting time.Tim R>> Are you still working? Do you have any idea of how many are ahead of> you on the list? Are your eyes still bothering you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Has your tx surgeon talked to you about using an O donor instead? I am O and my son is A and I gave to him? MartiTim Romlein wrote: Hi Barb,There are currently 9 people in the 19-24 MELD range for type A blood in the OPO I'm waiting in (Michigan). Since my MELD is 19 I'm near the bottom of that list. In the 17 months that I've been waiting, roughly 100 different individuals have been in that MELD range or higher in the type A waiting list. So there is a lot of turnover - everyone else in the 19-24 range has been there less than 2 months.My eyesight problem cleared up when I started taking vitamin E & D supplements. I had been taking vitamin K and when I first noticed the vision problem added vitamin A. That fixed things for a while, then my night vision got gradually worse, a retinal specialist could find any physical cause so I theorized with my PCP that vitamin deficiency might be the cause. The result was adding the supplements and the pleasure of having the blind spot disappear.I am still working, although fatigue is an ever increasing problem.I hope that Ken hears back soon about his listing and that events click along quickly to get him a transplant without too long a waiting time.Tim R>> Are you still working? Do you have any idea of how many are ahead of> you on the list? Are your eyes still bothering you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Has your tx surgeon talked to you about using an O donor instead? I am O and my son is A and I gave to him? MartiTim Romlein wrote: Hi Barb,There are currently 9 people in the 19-24 MELD range for type A blood in the OPO I'm waiting in (Michigan). Since my MELD is 19 I'm near the bottom of that list. In the 17 months that I've been waiting, roughly 100 different individuals have been in that MELD range or higher in the type A waiting list. So there is a lot of turnover - everyone else in the 19-24 range has been there less than 2 months.My eyesight problem cleared up when I started taking vitamin E & D supplements. I had been taking vitamin K and when I first noticed the vision problem added vitamin A. That fixed things for a while, then my night vision got gradually worse, a retinal specialist could find any physical cause so I theorized with my PCP that vitamin deficiency might be the cause. The result was adding the supplements and the pleasure of having the blind spot disappear.I am still working, although fatigue is an ever increasing problem.I hope that Ken hears back soon about his listing and that events click along quickly to get him a transplant without too long a waiting time.Tim R>> Are you still working? Do you have any idea of how many are ahead of> you on the list? Are your eyes still bothering you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Good point! That is something that the UPMC transplant surgeon confirmed was possible to transplant across blood types. AB can get from anyone essentially. I think it is like blood types from how she described it. Mom of Zoe (13) My very normal (teenager normal) soccer player; Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar vertebrae); Aidan (4 1/2) Moderately-severe SNHL bilaterally Recycle Yourself Become an Organ Donor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 I'm an O and is an A, also, and I will be donating to him. Although, I imagine the doctors when you're going with cadaveric donors and adults, they probably stick moreso to blood types because there are so many ppl in each catagory. Ami Marti wrote: Has your tx surgeon talked to you about using an O donor instead? I am O and my son is A and I gave to him? MartiTim Romlein wrote: Hi Barb,There are currently 9 people in the 19-24 MELD range for type A blood in the OPO I'm waiting in (Michigan). Since my MELD is 19 I'm near the bottom of that list. In the 17 months that I've been waiting, roughly 100 different individuals have been in that MELD range or higher in the type A waiting list. So there is a lot of turnover - everyone else in the 19-24 range has been there less than 2 months.My eyesight problem cleared up when I started taking vitamin E & D supplements. I had been taking vitamin K and when I first noticed the vision problem added vitamin A. That fixed things for a while, then my night vision got gradually worse, a retinal specialist could find any physical cause so I theorized with my PCP that vitamin deficiency might be the cause. The result was adding the supplements and the pleasure of having the blind spot disappear.I am still working, although fatigue is an ever increasing problem.I hope that Ken hears back soon about his listing and that events click along quickly to get him a transplant without too long a waiting time.Tim R>> Are you still working? Do you have any idea of how many are ahead of> you on the list? Are your eyes still bothering you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 I'm an O and is an A, also, and I will be donating to him. Although, I imagine the doctors when you're going with cadaveric donors and adults, they probably stick moreso to blood types because there are so many ppl in each catagory. Ami Marti wrote: Has your tx surgeon talked to you about using an O donor instead? I am O and my son is A and I gave to him? MartiTim Romlein wrote: Hi Barb,There are currently 9 people in the 19-24 MELD range for type A blood in the OPO I'm waiting in (Michigan). Since my MELD is 19 I'm near the bottom of that list. In the 17 months that I've been waiting, roughly 100 different individuals have been in that MELD range or higher in the type A waiting list. So there is a lot of turnover - everyone else in the 19-24 range has been there less than 2 months.My eyesight problem cleared up when I started taking vitamin E & D supplements. I had been taking vitamin K and when I first noticed the vision problem added vitamin A. That fixed things for a while, then my night vision got gradually worse, a retinal specialist could find any physical cause so I theorized with my PCP that vitamin deficiency might be the cause. The result was adding the supplements and the pleasure of having the blind spot disappear.I am still working, although fatigue is an ever increasing problem.I hope that Ken hears back soon about his listing and that events click along quickly to get him a transplant without too long a waiting time.Tim R>> Are you still working? Do you have any idea of how many are ahead of> you on the list? Are your eyes still bothering you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 I'm an O and is an A, also, and I will be donating to him. Although, I imagine the doctors when you're going with cadaveric donors and adults, they probably stick moreso to blood types because there are so many ppl in each catagory. Ami Marti wrote: Has your tx surgeon talked to you about using an O donor instead? I am O and my son is A and I gave to him? MartiTim Romlein wrote: Hi Barb,There are currently 9 people in the 19-24 MELD range for type A blood in the OPO I'm waiting in (Michigan). Since my MELD is 19 I'm near the bottom of that list. In the 17 months that I've been waiting, roughly 100 different individuals have been in that MELD range or higher in the type A waiting list. So there is a lot of turnover - everyone else in the 19-24 range has been there less than 2 months.My eyesight problem cleared up when I started taking vitamin E & D supplements. I had been taking vitamin K and when I first noticed the vision problem added vitamin A. That fixed things for a while, then my night vision got gradually worse, a retinal specialist could find any physical cause so I theorized with my PCP that vitamin deficiency might be the cause. The result was adding the supplements and the pleasure of having the blind spot disappear.I am still working, although fatigue is an ever increasing problem.I hope that Ken hears back soon about his listing and that events click along quickly to get him a transplant without too long a waiting time.Tim R>> Are you still working? Do you have any idea of how many are ahead of> you on the list? Are your eyes still bothering you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 > Has your tx surgeon talked to you about using an O donor instead? I am O and my son is A and I gave to him? > Marti > I realize that I could have a living donor with either A or O blood type. I haven't persued the living donor option because 1) I don't want to put someone else at risk of the potential complications of donor surgery, 2) I think that waiting for a transplant from the standard UNOS liver allocation list will not significantly decrease my chance of survival and 3) second transplants using partial livers from living donors are typically avoided because of the additional difficulties in the surgery involved. (This last bit I picked up at the Pittsburgh conference where the question of having a living donor for a second transplant was brought up. The answer was that while not impossible it was preferable to have an entire liver to work with the second time.) I have had a neice offer to be evaluated as a donor, but while thanking her profusely, I explained why I didn't want to take up her offer. In other circumstances - much higher MELD required for transplant, precancerous cells, debilitating pre-tx complications - I might change my mind and either look for a living donor or a tx center with a shorter waiting list. Many of our members have made the decision to be multi-listed, with the result a much shorter wait than they would have had at their original centers. Tim R, ltx 1998, recurrent PSC 2002, relisted 2005, MELD 19 Quote Link to comment Share on other sites More sharing options...
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