Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 Welcome , I'm glad you decided to join our group! Congratulations on the 8 months sobriety also! That is no easy feat. As you are about to find out, there are many wonderful people here to help support you, offer you guidance from their learned experiences etc. I don't have any " hands on " experience with the liver transplant process, but many here do. I'm sure they will be along to share their advice and well wishes. I've read many articles from the Cleveland Clinic and heard great things. So I hope you have good doctors and a good support team there. Once you meet with the transplant team they should be able to give you an idea of how long it will take to complete the tests and list you. From the sound (tone?) of your post, you seem to have a great positive attitude for what your going through and that is perfect! You will need to keep that attitude. Stay positive! Again, I'm glad your here and your welcome with open arms to post anytime. You are among friends. MaC italybell69 wrote: Hi everyone,I have been in the group for a few months now and have gotten great insight on priorities lately,I am wondering about the time frame and what exactly I am going to be dealing with in the near future as far as even getting on a transplant list. I have been sober for 8 months now and my G.I. Dr. has refered me to a specialist that is with the transplant team.I live an hour & 1/2 from the hospital (Cleveland Clinic) how long does it take to get on a list? will I have to go give blood weekly or how often? I do know I am in stage 4 (esld) I nearly died last year from varices and didn't know that an alcoholic could get on a list,I have had Hep C since the 80's and just took the " feel sorry for me " route.I now have a goal but it could very well be too late,and have noone to blame exept for myself.If anyone can give me the facts on the process of all this I am greatful.I know this is gonna take alot of patience and I have read about how some of you literally have to hand deliver paperwork,insurance forms,fax's,ect.ect. to get things done,for instance thay told me fri. that it would take 2 weeks for my records to be transfered to my new specialist for them to even schedule an appointment for me,ARGH! Patience isn't my best virtue.......(oh,I am past the Infuron stage) I will have to go through that or do I? God willing I do get a transplant.That is all very confusing to me .Thank you for reading and god bless everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 Hi , In my case, I started the transplant evaluation process in late August, 2007, and I was placed on the list on December 5, 2007. I had my transplant on January 6, 2008. I don't remember how often I had blood tests done before the transplant, but it wasn't as often as after transplant. After transplant, blood tests are done three times a week for a while, and they gradually scale it back to two a week, and then once a week. I do blood tests now every two weeks. You said you did the interferon treatment. Did you clear the Hepatitis C virus? I was told that treatment has to be done before transplant, and again after transplant. I will be starting treatment on December 2nd. I didn't do treatment before the transplant. When they wanted me to start, I was too sick to do it. If it was me, I would go to the records dept. and get the records myself and hand deliver them to the specialist. It wouldn't take two weeks. Take care. Penny > > Hi everyone,I have been in the group for a few months now and have > gotten great insight on priorities lately,I am wondering about the > time frame and what exactly I am going to be dealing with in the near > future as far as even getting on a transplant list. I have been sober > for 8 months now and my G.I. Dr. has refered me to a specialist that > is with the transplant team.I live an hour & 1/2 from the hospital > (Cleveland Clinic) how long does it take to get on a list? will I > have to go give blood weekly or how often? I do know I am in stage 4 > (esld) I nearly died last year from varices and didn't know that an > alcoholic could get on a list,I have had Hep C since the 80's and > just took the " feel sorry for me " route.I now have a goal but it > could very well be too late,and have noone to blame exept for > myself.If anyone can give me the facts on the process of all this I > am greatful.I know this is gonna take alot of patience and I have > read about how some of you literally have to hand deliver > paperwork,insurance forms,fax's,ect.ect. to get things done,for > instance thay told me fri. that it would take 2 weeks for my records > to be transfered to my new specialist for them to even schedule an > appointment for me,ARGH! Patience isn't my best virtue.......(oh,I am > past the Infuron stage) I will have to go through that or do I? God > willing I do get a transplant.That is all very confusing to > me .Thank you for reading and god bless everyone! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 , You have a lot of questions to answer. Maybe I can help with some. I don't post here much and you can read a lot of my story on my blog along with helping you with your questions... www.reallife-withus.blogspot.com I am a pre-transplant patient diagnosed with alcoholic cirrhosis last fall. I am currently on 2 transplant lists in different regions. At the very top of my blood type at one. I live an hour away from one center and 2.5 from another so after going through the testing twice I can tell you it can be done. #1 is YOU need to be YOUR best advocate! YOU keep all your records. You make all the phone calls. You double check to make sure they got them. You do everything they ask you and do it as quickly as possible. #2 after your first initial appointment find out who the coordinator on your case is. Get her and her asst. phone #'s. fax #'s and e-mail addresses. Ask her to help make your appointments in lumps...(on the same day) so you can fit several things in when you go. #3 The tests....everyone goes through most of the same tests. Some patients have others to clarify their ability to get through surgery, etc. You will have a lot of blood work. A 24 hr urine test. Random urine testing for alcohol, an endoscopy to check for varices and band if necessary, , a stress test for your heart, pulmonary functions,CT scan, They will check your heart, your lungs, maybe a colonoscopy. You will see a social worker and maybe a psychiatrist, the dietitian, the financial people, the surgeon, the anesthesiologist......hmmmm, am I missing anyone? Then after all of that those people meet in a committee. They decide if you get on the list or if there are conditions that you still have to meet. Maybe another test or something...You may need to loose weight if you are heavy, etc. Once on the list they will tell you what your MELD score is at that time. That is how your are ranked on the UNOS list. If you need clarifying about what that is let us know....We can explain that. The higher the #, the more you need your liver, the higher on the list you are...but there is a lot more that goes into it than just a #. I started the listing process in mid November and was listed by January with the 1st center. We moved very fast and I had A LOT MORE testing than above because I did have heart and lung problems. I would also suggest that you pick up your medical records personally and hand carry them in to the transplant center. Ask them to copy what they need and you keep the originals. You may have to pay for them but it is worth it. Then ask for copies at every visit, for every test and blood work. I talk a lot in my blog about the testing process and what they are like. I hope that helps.....if it didn't confuse you more! > > Hi everyone,I have been in the group for a few months now and have > gotten great insight on priorities lately,I am wondering about the > time frame and what exactly I am going to be dealing with in the near > future as far as even getting on a transplant list. I have been sober > for 8 months now and my G.I. Dr. has refered me to a specialist that > is with the transplant team.I live an hour & 1/2 from the hospital > (Cleveland Clinic) how long does it take to get on a list? will I > have to go give blood weekly or how often? I do know I am in stage 4 > (esld) I nearly died last year from varices and didn't know that an > alcoholic could get on a list,I have had Hep C since the 80's and > just took the " feel sorry for me " route.I now have a goal but it > could very well be too late,and have noone to blame exept for > myself.If anyone can give me the facts on the process of all this I > am greatful.I know this is gonna take alot of patience and I have > read about how some of you literally have to hand deliver > paperwork,insurance forms,fax's,ect.ect. to get things done,for > instance thay told me fri. that it would take 2 weeks for my records > to be transfered to my new specialist for them to even schedule an > appointment for me,ARGH! Patience isn't my best virtue.......(oh,I am > past the Infuron stage) I will have to go through that or do I? God > willing I do get a transplant.That is all very confusing to > me .Thank you for reading and god bless everyone! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 One more answer. After you are on the list how often you have blood drawn depends on your meld.....Penny was lucky enough not to have waited :-) meld of 25 and above...every 7 days meld of 19-24 every 30 days below that I don't know....I think it goes down to 90 days. You will also need a panel before any Dr visits... > > Hi everyone,I have been in the group for a few months now and have > gotten great insight on priorities lately,I am wondering about the > time frame and what exactly I am going to be dealing with in the near > future as far as even getting on a transplant list. I have been sober > for 8 months now and my G.I. Dr. has refered me to a specialist that > is with the transplant team.I live an hour & 1/2 from the hospital > (Cleveland Clinic) how long does it take to get on a list? will I > have to go give blood weekly or how often? I do know I am in stage 4 > (esld) I nearly died last year from varices and didn't know that an > alcoholic could get on a list,I have had Hep C since the 80's and > just took the " feel sorry for me " route.I now have a goal but it > could very well be too late,and have noone to blame exept for > myself.If anyone can give me the facts on the process of all this I > am greatful.I know this is gonna take alot of patience and I have > read about how some of you literally have to hand deliver > paperwork,insurance forms,fax's,ect.ect. to get things done,for > instance thay told me fri. that it would take 2 weeks for my records > to be transfered to my new specialist for them to even schedule an > appointment for me,ARGH! Patience isn't my best virtue.......(oh,I am > past the Infuron stage) I will have to go through that or do I? God > willing I do get a transplant.That is all very confusing to > me .Thank you for reading and god bless everyone! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2008 Report Share Posted November 13, 2008 I do also know that the patients at Loma who have hep C and are on the list or getting on the list do NOT undergo treatment. (hep C) They do post transplant like Penny if needed. Some respond well, some don't. But the hep C doesn't *always* attack the new liver. Different Transplant Centers have different protocols on this. Some treat soon after transplant to try and kill the virus entirely *before* it can.......Others can probably speak to this with more knowledge. > > Hi everyone,I have been in the group for a few months now and have > gotten great insight on priorities lately,I am wondering about the > time frame and what exactly I am going to be dealing with in the near > future as far as even getting on a transplant list. I have been sober > for 8 months now and my G.I. Dr. has refered me to a specialist that > is with the transplant team.I live an hour & 1/2 from the hospital > (Cleveland Clinic) how long does it take to get on a list? will I > have to go give blood weekly or how often? I do know I am in stage 4 > (esld) I nearly died last year from varices and didn't know that an > alcoholic could get on a list,I have had Hep C since the 80's and > just took the " feel sorry for me " route.I now have a goal but it > could very well be too late,and have noone to blame exept for > myself.If anyone can give me the facts on the process of all this I > am greatful.I know this is gonna take alot of patience and I have > read about how some of you literally have to hand deliver > paperwork,insurance forms,fax's,ect.ect. to get things done,for > instance thay told me fri. that it would take 2 weeks for my records > to be transfered to my new specialist for them to even schedule an > appointment for me,ARGH! Patience isn't my best virtue.......(oh,I am > past the Infuron stage) I will have to go through that or do I? God > willing I do get a transplant.That is all very confusing to > me .Thank you for reading and god bless everyone! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 Baw! Hawr! It is soooo funny, but when posted that, I started to look around, going " now where's that right about. Now? " I was wondering today if you'd gotten that call. Thank you for posting, I knew you could help us out. and we are all really hoping that liver comes fast. Luv ya, rwe Sent via BlackBerry from T-Mobile Re: time frames , You have a lot of questions to answer. Maybe I can help with some. I don't post here much and you can read a lot of my story on my blog along with helping you with your questions... www.reallife-withus.blogspot.com I am a pre-transplant patient diagnosed with alcoholic cirrhosis last fall. I am currently on 2 transplant lists in different regions. At the very top of my blood type at one. I live an hour away from one center and 2.5 from another so after going through the testing twice I can tell you it can be done. #1 is YOU need to be YOUR best advocate! YOU keep all your records. You make all the phone calls. You double check to make sure they got them. You do everything they ask you and do it as quickly as possible. #2 after your first initial appointment find out who the coordinator on your case is. Get her and her asst. phone #'s. fax #'s and e-mail addresses. Ask her to help make your appointments in lumps...(on the same day) so you can fit several things in when you go. #3 The tests....everyone goes through most of the same tests. Some patients have others to clarify their ability to get through surgery, etc. You will have a lot of blood work. A 24 hr urine test. Random urine testing for alcohol, an endoscopy to check for varices and band if necessary, , a stress test for your heart, pulmonary functions,CT scan, They will check your heart, your lungs, maybe a colonoscopy. You will see a social worker and maybe a psychiatrist, the dietitian, the financial people, the surgeon, the anesthesiologist......hmmmm, am I missing anyone? Then after all of that those people meet in a committee. They decide if you get on the list or if there are conditions that you still have to meet. Maybe another test or something...You may need to loose weight if you are heavy, etc. Once on the list they will tell you what your MELD score is at that time. That is how your are ranked on the UNOS list. If you need clarifying about what that is let us know....We can explain that. The higher the #, the more you need your liver, the higher on the list you are...but there is a lot more that goes into it than just a #. I started the listing process in mid November and was listed by January with the 1st center. We moved very fast and I had A LOT MORE testing than above because I did have heart and lung problems. I would also suggest that you pick up your medical records personally and hand carry them in to the transplant center. Ask them to copy what they need and you keep the originals. You may have to pay for them but it is worth it. Then ask for copies at every visit, for every test and blood work. I talk a lot in my blog about the testing process and what they are like. I hope that helps.....if it didn't confuse you more! > > Hi everyone,I have been in the group for a few months now and have > gotten great insight on priorities lately,I am wondering about the > time frame and what exactly I am going to be dealing with in the near > future as far as even getting on a transplant list. I have been sober > for 8 months now and my G.I. Dr. has refered me to a specialist that > is with the transplant team.I live an hour & 1/2 from the hospital > (Cleveland Clinic) how long does it take to get on a list? will I > have to go give blood weekly or how often? I do know I am in stage 4 > (esld) I nearly died last year from varices and didn't know that an > alcoholic could get on a list,I have had Hep C since the 80's and > just took the " feel sorry for me " route.I now have a goal but it > could very well be too late,and have noone to blame exept for > myself.If anyone can give me the facts on the process of all this I > am greatful.I know this is gonna take alot of patience and I have > read about how some of you literally have to hand deliver > paperwork,insurance forms,fax's,ect.ect. to get things done,for > instance thay told me fri. that it would take 2 weeks for my records > to be transfered to my new specialist for them to even schedule an > appointment for me,ARGH! Patience isn't my best virtue.......(oh,I am > past the Infuron stage) I will have to go through that or do I? God > willing I do get a transplant.That is all very confusing to > me .Thank you for reading and god bless everyone! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 ... are you seeing Dr. at the Clinic? He is the assistant head of the hepatic disease dept and part of the transplant team. That's who my husband sees there. He was diagnosed 2 years ago withcirrhosis due to  non-alcoholic steato hepatitis and is now in stage 4 liver failure with sustained function. Dr. has not evaluated him for the transplant list yet due to his sustained liver function.   We make the 2/12-3 hour drive to the Cleve Clinic for his appoinments. His gastro doc got him into see Dr. within 2 weeks. I've been thinking about maybe getting him into OSU hospitals, which is only 1 hour away. Sometimes the drive is so long...especially after he does bandings of varices and then wants us back there the next day for an appointment!  I'm wishing you lots of good luck..                                                                           Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. Subject: time frames To: livercirrhosissupport Date: Friday, November 14, 2008, 12:13 AM Hi everyone,I have been in the group for a few months now and have gotten great insight on priorities lately,I am wondering about the time frame and what exactly I am going to be dealing with in the near future as far as even getting on a transplant list. I have been sober for 8 months now and my G.I. Dr. has refered me to a specialist that is with the transplant team.I live an hour & 1/2 from the hospital (Cleveland Clinic) how long does it take to get on a list? will I have to go give blood weekly or how often? I do know I am in stage 4 (esld) I nearly died last year from varices and didn't know that an alcoholic could get on a list,I have had Hep C since the 80's and just took the " feel sorry for me " route.I now have a goal but it could very well be too late,and have noone to blame exept for myself.If anyone can give me the facts on the process of all this I am greatful.I know this is gonna take alot of patience and I have read about how some of you literally have to hand deliver paperwork,insurance forms,fax's, ect.ect. to get things done,for instance thay told me fri. that it would take 2 weeks for my records to be transfered to my new specialist for them to even schedule an appointment for me,ARGH! Patience isn't my best virtue...... .(oh,I am past the Infuron stage) I will have to go through that or do I? God willing I do get a transplant.That is all very confusing to me .Thank you for reading and god bless everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 congats on your 8 month mark wendy i am very proud of you!!!!i wish you the very best in your journey ,much love barby > > Hi everyone,I have been in the group for a few months now and have > gotten great insight on priorities lately,I am wondering about the > time frame and what exactly I am going to be dealing with in the near > future as far as even getting on a transplant list. I have been sober > for 8 months now and my G.I. Dr. has refered me to a specialist that > is with the transplant team.I live an hour & 1/2 from the hospital > (Cleveland Clinic) how long does it take to get on a list? will I > have to go give blood weekly or how often? I do know I am in stage 4 > (esld) I nearly died last year from varices and didn't know that an > alcoholic could get on a list,I have had Hep C since the 80's and > just took the " feel sorry for me " route.I now have a goal but it > could very well be too late,and have noone to blame exept for > myself.If anyone can give me the facts on the process of all this I > am greatful.I know this is gonna take alot of patience and I have > read about how some of you literally have to hand deliver > paperwork,insurance forms,fax's,ect.ect. to get things done,for > instance thay told me fri. that it would take 2 weeks for my records > to be transfered to my new specialist for them to even schedule an > appointment for me,ARGH! Patience isn't my best virtue.......(oh,I am > past the Infuron stage) I will have to go through that or do I? God > willing I do get a transplant.That is all very confusing to > me .Thank you for reading and god bless everyone! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 Hi , My husband Jeff had his transplant at Cleveland Clinic. We live in Pittsburgh. His Dr. here had to refer him to Cleveland, then we called to set up an evaluation. It took about a month to get in. He had his evaluation in Aug. 2006. It took about 3 days up there, they schedule all the appts. together. Last appt. was with the psycologist. Even tho he had quit drinking in March of that year, they needed proof. He was denied the first time, he had to get in a program here for 3 months, alcohol rehab, then pass that, plus documented AA meetings 3 times a week. He was getting very ill at this time, but he had to do this. Anyway, once he did all this and they sent the report that he had completed the program, he was accepted and put on the list. In middle of Dec. He got call Jan, 5th. And he got the transplant on the 6th. I would advise now to get in a alcohol rehab program now, and do the AA meetings, and have them sign a sheet for you when you go. This will be done before you meet with the tp. team. I really liked Cleveland, everybody very helpful. Jeff had the ESLD due to alcohol and the Hep. C. He is doing very well now. Good luck to you, Sue Subject: time frames To: livercirrhosissupport Date: Friday, November 14, 2008, 12:13 AM Hi everyone,I have been in the group for a few months now and have gotten great insight on priorities lately,I am wondering about the time frame and what exactly I am going to be dealing with in the near future as far as even getting on a transplant list. I have been sober for 8 months now and my G.I. Dr. has refered me to a specialist that is with the transplant team.I live an hour & 1/2 from the hospital (Cleveland Clinic) how long does it take to get on a list? will I have to go give blood weekly or how often? I do know I am in stage 4 (esld) I nearly died last year from varices and didn't know that an alcoholic could get on a list,I have had Hep C since the 80's and just took the " feel sorry for me " route.I now have a goal but it could very well be too late,and have noone to blame exept for myself.If anyone can give me the facts on the process of all this I am greatful.I know this is gonna take alot of patience and I have read about how some of you literally have to hand deliver paperwork,insurance forms,fax's, ect.ect. to get things done,for instance thay told me fri. that it would take 2 weeks for my records to be transfered to my new specialist for them to even schedule an appointment for me,ARGH! Patience isn't my best virtue...... .(oh,I am past the Infuron stage) I will have to go through that or do I? God willing I do get a transplant.That is all very confusing to me .Thank you for reading and god bless everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 Hi Sue, Your husband had his transplant on January 6th too, but 2007, right? Mine was January 6, 2008. Did he do treatment for the Hep C after transplant? Penny > > > Subject: time frames > To: livercirrhosissupport > Date: Friday, November 14, 2008, 12:13 AM > > > > > > > Hi everyone,I have been in the group for a few months now and have > gotten great insight on priorities lately,I am wondering about the > time frame and what exactly I am going to be dealing with in the near > future as far as even getting on a transplant list. I have been sober > for 8 months now and my G.I. Dr. has refered me to a specialist that > is with the transplant team.I live an hour & 1/2 from the hospital > (Cleveland Clinic) how long does it take to get on a list? will I > have to go give blood weekly or how often? I do know I am in stage 4 > (esld) I nearly died last year from varices and didn't know that an > alcoholic could get on a list,I have had Hep C since the 80's and > just took the " feel sorry for me " route.I now have a goal but it > could very well be too late,and have noone to blame exept for > myself.If anyone can give me the facts on the process of all this I > am greatful.I know this is gonna take alot of patience and I have > read about how some of you literally have to hand deliver > paperwork,insurance forms,fax's, ect.ect. to get things done,for > instance thay told me fri. that it would take 2 weeks for my records > to be transfered to my new specialist for them to even schedule an > appointment for me,ARGH! Patience isn't my best virtue...... .(oh,I am > past the Infuron stage) I will have to go through that or do I? God > willing I do get a transplant.That is all very confusing to > me .Thank you for reading and god bless everyone! > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 Hi ,  For me to get through all the testing before (I am in Texas.) I could even get on the " List " took from July til the end of October. I don't know how it is for the other states. They checked everything out, and I do mean everything. Wish I knew more to help you with. Lyncia  In life family and friends take us on all kinds of adventures, God helps us choose our path....Enjoy your journey! Hi everyone,I have been in the group for a few months now and have gotten great insight on priorities lately,I am wondering about the time frame and what exactly I am going to be dealing with in the near future as far as even getting on a transplant list. I have been sober for 8 months now and my G.I. Dr. has refered me to a specialist that is with the transplant team.I live an hour & 1/2 from the hospital (Cleveland Clinic) how long does it take to get on a list? will I have to go give blood weekly or how often? I do know I am in stage 4 (esld) I nearly died last year from varices and didn't know that an alcoholic could get on a list,I have had Hep C since the 80's and just took the " feel sorry for me " route.I now have a goal but it could very well be too late,and have noone to blame exept for myself.If anyone can give me the facts on the process of all this I am greatful.I know this is gonna take alot of patience and I have read about how some of you literally have to hand deliver paperwork,insurance forms,fax's, ect.ect. to get things done,for instance thay told me fri. that it would take 2 weeks for my records to be transfered to my new specialist for them to even schedule an appointment for me,ARGH! Patience isn't my best virtue...... .(oh,I am past the Infuron stage) I will have to go through that or do I? God willing I do get a transplant.That is all very confusing to me .Thank you for reading and god bless everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2008 Report Share Posted November 14, 2008 Sue....who was your husband's doctor? I really like the staff at The Cleveland Clinic also. Everyone ...from the janitors to the receptionists to the doctors are so nice. I'm always amazed and we've been going there 2 years now. We feel Ed's doctor there is one of the best...we have vevery confidence in him.....even though we wish it were a closer drive for us!                                                                           Love,Jill  We don't remember days, we remember moments. Life is not measured by the breaths we take,but by the moments that take our breath away. From: italybell69 <italybell69@ yahoo.com> Subject: time frames To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Friday, November 14, 2008, 12:13 AM Hi everyone,I have been in the group for a few months now and have gotten great insight on priorities lately,I am wondering about the time frame and what exactly I am going to be dealing with in the near future as far as even getting on a transplant list. I have been sober for 8 months now and my G.I. Dr. has refered me to a specialist that is with the transplant team.I live an hour & 1/2 from the hospital (Cleveland Clinic) how long does it take to get on a list? will I have to go give blood weekly or how often? I do know I am in stage 4 (esld) I nearly died last year from varices and didn't know that an alcoholic could get on a list,I have had Hep C since the 80's and just took the " feel sorry for me " route.I now have a goal but it could very well be too late,and have noone to blame exept for myself.If anyone can give me the facts on the process of all this I am greatful.I know this is gonna take alot of patience and I have read about how some of you literally have to hand deliver paperwork,insurance forms,fax's, ect.ect. to get things done,for instance thay told me fri. that it would take 2 weeks for my records to be transfered to my new specialist for them to even schedule an appointment for me,ARGH! Patience isn't my best virtue...... .(oh,I am past the Infuron stage) I will have to go through that or do I? God willing I do get a transplant.That is all very confusing to me .Thank you for reading and god bless everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 Hi Jill, Jeff gastro. Dr. is O'Shea. I like him cause he takes time to go thru everything and answer any questions you may have. His surgeon was Dr. . We were up there last in May. His blood results are faxed to them. He just had his done Monday, on Thurs. a nurse from the transplant wing called him and talked about them to Jeff, so very good follow up. Also, if Jeff had a question right after tp. and even now, he can call up there and get an answer. His bloodwork was very good, so they call either way, not just if there is a problem. Sue From: italybell69 <italybell69@ yahoo.com> Subject: time frames To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Friday, November 14, 2008, 12:13 AM Hi everyone,I have been in the group for a few months now and have gotten great insight on priorities lately,I am wondering about the time frame and what exactly I am going to be dealing with in the near future as far as even getting on a transplant list. I have been sober for 8 months now and my G.I. Dr. has refered me to a specialist that is with the transplant team.I live an hour & 1/2 from the hospital (Cleveland Clinic) how long does it take to get on a list? will I have to go give blood weekly or how often? I do know I am in stage 4 (esld) I nearly died last year from varices and didn't know that an alcoholic could get on a list,I have had Hep C since the 80's and just took the " feel sorry for me " route.I now have a goal but it could very well be too late,and have noone to blame exept for myself.If anyone can give me the facts on the process of all this I am greatful.I know this is gonna take alot of patience and I have read about how some of you literally have to hand deliver paperwork,insurance forms,fax's, ect.ect. to get things done,for instance thay told me fri. that it would take 2 weeks for my records to be transfered to my new specialist for them to even schedule an appointment for me,ARGH! Patience isn't my best virtue...... .(oh,I am past the Infuron stage) I will have to go through that or do I? God willing I do get a transplant.That is all very confusing to me .Thank you for reading and god bless everyone! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 Hi Penny, typo in the year, Jeff got sick in 2005, he had the transplant on Jan 6, 2006. He started the tx for Hep. C, roughly Oct. of that year, he did 60 weeks, so he finished up at the end of Dec. 2007. He is clear of the virus at the 6 months bloodwork. His Dr. wants him to get another blood test next month for a re check, hope he is still clear. He managed the tx pretty well. At first he got sick right after the shot, but gradually it went away. He was tired alot toward the end but he still managed to work. He did get really bad migraines once in awhile. Everyone is different, He is back to normal now, which is really good. He was 48 when he had the transplant. Sue Subject: Re: time frames To: livercirrhosissupport Date: Friday, November 14, 2008, 5:14 PM Hi Sue, Your husband had his transplant on January 6th too, but 2007, right? Mine was January 6, 2008. Did he do treatment for the Hep C after transplant? Penny > > From: italybell69 <italybell69@ ...> > Subject: time frames > To: livercirrhosissuppo rtyahoogroups (DOT) com > Date: Friday, November 14, 2008, 12:13 AM > > > > > > > Hi everyone,I have been in the group for a few months now and have > gotten great insight on priorities lately,I am wondering about the > time frame and what exactly I am going to be dealing with in the near > future as far as even getting on a transplant list. I have been sober > for 8 months now and my G.I. Dr. has refered me to a specialist that > is with the transplant team.I live an hour & 1/2 from the hospital > (Cleveland Clinic) how long does it take to get on a list? will I > have to go give blood weekly or how often? I do know I am in stage 4 > (esld) I nearly died last year from varices and didn't know that an > alcoholic could get on a list,I have had Hep C since the 80's and > just took the " feel sorry for me " route.I now have a goal but it > could very well be too late,and have noone to blame exept for > myself.If anyone can give me the facts on the process of all this I > am greatful.I know this is gonna take alot of patience and I have > read about how some of you literally have to hand deliver > paperwork,insurance forms,fax's, ect.ect. to get things done,for > instance thay told me fri. that it would take 2 weeks for my records > to be transfered to my new specialist for them to even schedule an > appointment for me,ARGH! Patience isn't my best virtue...... .(oh,I am > past the Infuron stage) I will have to go through that or do I? God > willing I do get a transplant.That is all very confusing to > me .Thank you for reading and god bless everyone! > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2008 Report Share Posted November 15, 2008 Hi Sue, I hope he is still clear of the virus too. I hope my treatment goes as well. I've heard that the anticipation of the treatment is worse than the treatment itself. I hope so. I get migraines once in a while already...have for years. I hope they don't get worse. Thanks for sharing. Penny > > > > From: italybell69 <italybell69@ ...> > > Subject: time frames > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Date: Friday, November 14, 2008, 12:13 AM > > > > > > > > > > > > > > Hi everyone,I have been in the group for a few months now and have > > gotten great insight on priorities lately,I am wondering about the > > time frame and what exactly I am going to be dealing with in the > near > > future as far as even getting on a transplant list. I have been > sober > > for 8 months now and my G.I. Dr. has refered me to a specialist > that > > is with the transplant team.I live an hour & 1/2 from the hospital > > (Cleveland Clinic) how long does it take to get on a list? will I > > have to go give blood weekly or how often? I do know I am in stage > 4 > > (esld) I nearly died last year from varices and didn't know that an > > alcoholic could get on a list,I have had Hep C since the 80's and > > just took the " feel sorry for me " route.I now have a goal but it > > could very well be too late,and have noone to blame exept for > > myself.If anyone can give me the facts on the process of all this I > > am greatful.I know this is gonna take alot of patience and I have > > read about how some of you literally have to hand deliver > > paperwork,insurance forms,fax's, ect.ect. to get things done,for > > instance thay told me fri. that it would take 2 weeks for my > records > > to be transfered to my new specialist for them to even schedule an > > appointment for me,ARGH! Patience isn't my best virtue...... . (oh,I > am > > past the Infuron stage) I will have to go through that or do I? God > > willing I do get a transplant.That is all very confusing to > > me .Thank you for reading and god bless everyone! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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