Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 hi Tammy. my name is sandra my husband has hep c with stage 4 cirrhosis...proud to meet you..we have been where you are and i am so happy you have a doctor who spent quality time with you ...feel blessed and he is a keeper...yes there are a lack of livers available for transplant and also it is best to keep yours for as long as you possible can. i am not too sure about Living donors may be some can elaborate, but from my deduction a living donor is a partial transplant meaning half or a portion of some else's liver will be attached to your portion of liver or maybe the portion of some elses liver serves as you entire liver for growth...not to too sure. i was recently on a web site called the transplant experience...they show a surgery and if i recall correctly they talk about living donors...google it as i will too today then we can know together. Love in Christ sandra ________________________________ To: group <livercirrhosissupport > Sent: Saturday, November 22, 2008 9:33:35 AM Subject: doc appt. Hi All, I went to the hemotologist yesterday morning. Wow lots and lots of info to digest. I can say he was very nice and very personable. He was in the room with me for over an hour just explaining things. He did clairify what i had thought and what alot of you had told me--the platelets were low because they are trapped in the spleen. I go back to him on Dec 5th. He sent me to get yet more bloodwork yesterday and I have to get an MRI of my liver to check for cancer,tumors on Dec.1st. I thought i had already had one but he said that was a Hida Scan i had done-all I know is i am poked every other day and have a machine run across me once a week looking for something-lol. The hemo doc is calling my liver doc to discuss going ahead and making the appt with the transplant team at Hopkins. I guess it is a very long process and he wants to get started now. My family will also get tested. Ok here is something I am not understanding, why do they wait until you are so darn sick before they do a transplant? Is it because of the lack of organ donors? My little box on my license has been checked since i was around 20. The doc did say that if it is a living donor then you dont have to meet all the guidelines as you do with the national list. Does that mean you dont have to be as sick? Ok enough questions from me for now--lol. My boys are waiting not so patiently for me to get in the shower so we can go to wal mart. My 7 year old is into those little lego things--they drive me nuts, they are so small so i just dont know how the heck they can hurt so bad when you step on them--lol. Have a great day!! Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 http://www.mayoclinic.org/liver-transplant/livingdonorlivertransplant.html ________________________________ To: group <livercirrhosissupport > Sent: Saturday, November 22, 2008 9:33:35 AM Subject: doc appt. Hi All, I went to the hemotologist yesterday morning. Wow lots and lots of info to digest. I can say he was very nice and very personable. He was in the room with me for over an hour just explaining things. He did clairify what i had thought and what alot of you had told me--the platelets were low because they are trapped in the spleen. I go back to him on Dec 5th. He sent me to get yet more bloodwork yesterday and I have to get an MRI of my liver to check for cancer,tumors on Dec.1st. I thought i had already had one but he said that was a Hida Scan i had done-all I know is i am poked every other day and have a machine run across me once a week looking for something-lol. The hemo doc is calling my liver doc to discuss going ahead and making the appt with the transplant team at Hopkins. I guess it is a very long process and he wants to get started now. My family will also get tested. Ok here is something I am not understanding, why do they wait until you are so darn sick before they do a transplant? Is it because of the lack of organ donors? My little box on my license has been checked since i was around 20. The doc did say that if it is a living donor then you dont have to meet all the guidelines as you do with the national list. Does that mean you dont have to be as sick? Ok enough questions from me for now--lol. My boys are waiting not so patiently for me to get in the shower so we can go to wal mart. My 7 year old is into those little lego things--they drive me nuts, they are so small so i just dont know how the heck they can hurt so bad when you step on them--lol. Have a great day!! Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 http://www.medicinenet.com/liver_transplant/page3.htm ________________________________ To: group <livercirrhosissupport > Sent: Saturday, November 22, 2008 9:33:35 AM Subject: doc appt. Hi All, I went to the hemotologist yesterday morning. Wow lots and lots of info to digest. I can say he was very nice and very personable. He was in the room with me for over an hour just explaining things. He did clairify what i had thought and what alot of you had told me--the platelets were low because they are trapped in the spleen. I go back to him on Dec 5th. He sent me to get yet more bloodwork yesterday and I have to get an MRI of my liver to check for cancer,tumors on Dec.1st. I thought i had already had one but he said that was a Hida Scan i had done-all I know is i am poked every other day and have a machine run across me once a week looking for something-lol. The hemo doc is calling my liver doc to discuss going ahead and making the appt with the transplant team at Hopkins. I guess it is a very long process and he wants to get started now. My family will also get tested. Ok here is something I am not understanding, why do they wait until you are so darn sick before they do a transplant? Is it because of the lack of organ donors? My little box on my license has been checked since i was around 20. The doc did say that if it is a living donor then you dont have to meet all the guidelines as you do with the national list. Does that mean you dont have to be as sick? Ok enough questions from me for now--lol. My boys are waiting not so patiently for me to get in the shower so we can go to wal mart.. My 7 year old is into those little lego things--they drive me nuts, they are so small so i just dont know how the heck they can hurt so bad when you step on them--lol. Have a great day!! Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 http://www.surgery.usc.edu/divisions/hep/livedonorlivertransplant.html ________________________________ To: group <livercirrhosissupport > Sent: Saturday, November 22, 2008 9:33:35 AM Subject: doc appt. Hi All, I went to the hemotologist yesterday morning. Wow lots and lots of info to digest. I can say he was very nice and very personable. He was in the room with me for over an hour just explaining things. He did clairify what i had thought and what alot of you had told me--the platelets were low because they are trapped in the spleen. I go back to him on Dec 5th. He sent me to get yet more bloodwork yesterday and I have to get an MRI of my liver to check for cancer,tumors on Dec.1st. I thought i had already had one but he said that was a Hida Scan i had done-all I know is i am poked every other day and have a machine run across me once a week looking for something-lol. The hemo doc is calling my liver doc to discuss going ahead and making the appt with the transplant team at Hopkins. I guess it is a very long process and he wants to get started now. My family will also get tested. Ok here is something I am not understanding, why do they wait until you are so darn sick before they do a transplant? Is it because of the lack of organ donors? My little box on my license has been checked since i was around 20. The doc did say that if it is a living donor then you dont have to meet all the guidelines as you do with the national list. Does that mean you dont have to be as sick? Ok enough questions from me for now--lol. My boys are waiting not so patiently for me to get in the shower so we can go to wal mart. My 7 year old is into those little lego things--they drive me nuts, they are so small so i just dont know how the heck they can hurt so bad when you step on them--lol. Have a great day!! Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 you know Tammy i thought you had to attach to a portion but that seems to not be the case...i always thought that this would not be an option for my husband but may be it can be... ________________________________ To: group <livercirrhosissupport > Sent: Saturday, November 22, 2008 9:33:35 AM Subject: doc appt. Hi All, I went to the hemotologist yesterday morning. Wow lots and lots of info to digest. I can say he was very nice and very personable. He was in the room with me for over an hour just explaining things. He did clairify what i had thought and what alot of you had told me--the platelets were low because they are trapped in the spleen. I go back to him on Dec 5th. He sent me to get yet more bloodwork yesterday and I have to get an MRI of my liver to check for cancer,tumors on Dec.1st. I thought i had already had one but he said that was a Hida Scan i had done-all I know is i am poked every other day and have a machine run across me once a week looking for something-lol. The hemo doc is calling my liver doc to discuss going ahead and making the appt with the transplant team at Hopkins. I guess it is a very long process and he wants to get started now. My family will also get tested. Ok here is something I am not understanding, why do they wait until you are so darn sick before they do a transplant? Is it because of the lack of organ donors? My little box on my license has been checked since i was around 20. The doc did say that if it is a living donor then you dont have to meet all the guidelines as you do with the national list. Does that mean you dont have to be as sick? Ok enough questions from me for now--lol. My boys are waiting not so patiently for me to get in the shower so we can go to wal mart. My 7 year old is into those little lego things--they drive me nuts, they are so small so i just dont know how the heck they can hurt so bad when you step on them--lol. Have a great day!! Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 Hi , I can tell you from my experience that since your husband has Hep C, a living donor would be a temporary solution to keep him alive long enough to find a match for a cadever, whole liver. When I was in the hospital before a match was found for me to get a transplant, the surgeons told me I would need a living donor in order to survive long enough to find a match for a whole liver. That would have meant two surgeries. The reason being is that I have Hepatitis C, and a partial liver would not be able to rejenerate completely in a Hep C patient since the liver would be reinfected with the Hep C virus right after transplant. A person with Hepatitis C needs a whole liver. I was lucky enough to have had a match from a whole liver so I didn't have to have a living donor, and then another surgery for a whole liver later on. Penny > > you know Tammy i thought you had to attach to a portion but that seems to not be the case...i always thought that this would not be an option for my husband but may be it can be... > > > > > ________________________________ > > To: group <livercirrhosissupport > > Sent: Saturday, November 22, 2008 9:33:35 AM > Subject: doc appt. > > > Hi All, > > I went to the hemotologist yesterday morning. Wow lots and lots of info to digest. I can say he was very nice and very personable. He was in the room with me for over an hour just explaining things. He did clairify what i had thought and what alot of you had told me--the platelets were low because they are trapped in the spleen. I go back to him on Dec 5th. He sent me to get yet more bloodwork yesterday and I have to get an MRI of my liver to check for cancer,tumors on Dec.1st. I thought i had already had one but he said that was a Hida Scan i had done-all I know is i am poked every other day and have a machine run across me once a week looking for something-lol. The hemo doc is calling my liver doc to discuss going ahead and making the appt with the transplant team at Hopkins. I guess it is a very long process and he wants to get started now. My family will also get tested. > > Ok here is something I am not understanding, why do they wait until you are so darn sick before they do a transplant? Is it because of the lack of organ donors? My little box on my license has been checked since i was around 20. The doc did say that if it is a living donor then you dont have to meet all the guidelines as you do with the national list. Does that mean you dont have to be as sick? Ok enough questions from me for now--lol. My boys are waiting not so patiently for me to get in the shower so we can go to wal mart. My 7 year old is into those little lego things--they drive me nuts, they are so small so i just dont know how the heck they can hurt so bad when you step on them--lol. > Have a great day!! > Tammy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 Hi, Tammy. You hit the nail on the head when you said " is it a shortage of organs. " It is. With around 90,000 on the waiting list at any given time, and around 5000 to 6000 organs donated each year, (please do not hold me to these numbers, it was months ago the last time I did any research on this, ) there are simply not enough to go around. There is a push in England to enact laws that require you to " unregister " as an organ donor if you don't want to be one, instead of the other way around. There are several European countries that have these laws, Luxemburg, Spain and France come to mind, where you are automatically a presumed donor unless you sign up to not donate. It is said that it would be so much easier to track the 2,000 who would opt out than it is to track the 90,000 who say they are in favor of donation, and try to get them to actually sign up to be a donor. It's called " presumed consent " . I am on the crackberry and can't do a link to the site, but I will put a link in the link list and post a link as well. Good luck to you. I get really uptight after a lot of doctor visits, and all the expense, pokes, needles, IV's, XRAYS, ect . My blog has radiological symbols falling all around symbolizing all the tests. Love, Bobby Sent via BlackBerry from T-Mobile doc appt. Hi All, I went to the hemotologist yesterday morning. Wow lots and lots of info to digest. I can say he was very nice and very personable. He was in the room with me for over an hour just explaining things. He did clairify what i had thought and what alot of you had told me--the platelets were low because they are trapped in the spleen. I go back to him on Dec 5th. He sent me to get yet more bloodwork yesterday and I have to get an MRI of my liver to check for cancer,tumors on Dec.1st. I thought i had already had one but he said that was a Hida Scan i had done-all I know is i am poked every other day and have a machine run across me once a week looking for something-lol. The hemo doc is calling my liver doc to discuss going ahead and making the appt with the transplant team at Hopkins. I guess it is a very long process and he wants to get started now. My family will also get tested. Ok here is something I am not understanding, why do they wait until you are so darn sick before they do a transplant? Is it because of the lack of organ donors? My little box on my license has been checked since i was around 20. The doc did say that if it is a living donor then you dont have to meet all the guidelines as you do with the national list. Does that mean you dont have to be as sick? Ok enough questions from me for now--lol. My boys are waiting not so patiently for me to get in the shower so we can go to wal mart. My 7 year old is into those little lego things--they drive me nuts, they are so small so i just dont know how the heck they can hurt so bad when you step on them--lol. Have a great day!! Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 Tammy, I am so happy you had such a positive experience with your hemo doc. Having good relationships with doctors is so important to how well this whole thing goes for an individual. It sounds like he was thorough and gave you some really good information. I'm also happy that he's going to get with your hep doc and try to go ahead with the refereal to the transplant doc. This is all very positive for your well-being. I would say, yes, the reason one has to be so sick is because so many people are waiting and there are so few organ available. With this shortage, so many people die before they can ever get the liver they need. I am so thankful I am not the person(s) that has the responsibility of making those decisions. With a living donor, you don't have to meet the criteria because you're supplying your own donor liver. Well, technically, you're not, someone you know is and it's not a whole liver, only a partial. I'll be praying for you as you move forward with your appointments and tests. And, be careful of those Legos, they can make you a lame-o!!! Hugs.......... Diane ________________________________ To: group <livercirrhosissupport > Sent: Saturday, November 22, 2008 8:33:35 AM Subject: doc appt. Hi All, I went to the hemotologist yesterday morning. Wow lots and lots of info to digest. I can say he was very nice and very personable. He was in the room with me for over an hour just explaining things. He did clairify what i had thought and what alot of you had told me--the platelets were low because they are trapped in the spleen. I go back to him on Dec 5th. He sent me to get yet more bloodwork yesterday and I have to get an MRI of my liver to check for cancer,tumors on Dec.1st. I thought i had already had one but he said that was a Hida Scan i had done-all I know is i am poked every other day and have a machine run across me once a week looking for something-lol. The hemo doc is calling my liver doc to discuss going ahead and making the appt with the transplant team at Hopkins. I guess it is a very long process and he wants to get started now. My family will also get tested. Ok here is something I am not understanding, why do they wait until you are so darn sick before they do a transplant? Is it because of the lack of organ donors? My little box on my license has been checked since i was around 20. The doc did say that if it is a living donor then you dont have to meet all the guidelines as you do with the national list. Does that mean you dont have to be as sick? Ok enough questions from me for now--lol. My boys are waiting not so patiently for me to get in the shower so we can go to wal mart. My 7 year old is into those little lego things--they drive me nuts, they are so small so i just dont know how the heck they can hurt so bad when you step on them--lol. Have a great day!! Tammy Quote Link to comment Share on other sites More sharing options...
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