Re: Re: NEW member - Hi Jeff/Hi Sue

[Guest guest]

Hi Sue. Thanks for your reply. Jeff and parallel pretty close in the fact that I too, had no idea there was something wrong with me... When I was diagnosed during a hospital stay for an unrelated problem, they did blood work, and found I had Hep C. After a bx they told me I was really sick, with ESLD as well. That was almost two years ago. I had heard of HEPATITIS & S before, and really wasn't concerned when the nurse told me I had it. I said...that's it? Hepatitis? Give me one of those shots I heard that hurt like Hell and I'll be on my way..HA!! Ignorance was bliss!!!! It's been a fairly smooth road for me, but I can't do the tx because my immune system is not willing to fight off the bad guys.... Staph Infection. I tried twice, but it just doesn't work for me. Jeff sounds like he's been through a hell of a lot more than I. How did he notice the varicies? Was it

discovered or thru tests, or bleeding from everywhere, or what? please.... How was the ascites found? I don't itch so much now, but while on tx I put thick socks (taped) over my hands to lessen the damage to my skin when I would involuntarily scratch. Long cool showers gave me relief, and some stuff from CVS Pharmacy called..(it's kind of a highly technical nature) Daily Moisture Lotion, (heh...heh..) I didn't feel a 'RUSH' of relief, but instead noticed my scratch marks were healing and not returning.. Cramps?? OMG... sometimes, (remember, I don't take tx), I'd wake up screaming because of the cramps in my calves. Probably the tx elevates this symptom too. I wouldn't even try to stand up, like Jeff, I'm more of a screamer...hahaha.... (most times) but find a comfortable(?) position and chant to unknown Cramp Gods to please make it stop. My

doc gave me Magnesium, I believe, and this was the miracle drug for me. Alot of us cramp. Non heppers, just trying to be helpful, advise that I should eat Banana's, for the potassium..... which I do..split in the middle and put on each side of 3 scoops of ice cream with chocolate syrup, and a couple of Maraschino Cherries,( more for presentation purposes than taste). A little whipped cream and I'm good to go ! No nuts though. My teeth either fell out or were pulled out a while ago.. No nuts.................... Drink lots of water, ofcourse, and that helps too. God Bless ya'll and Good Luck! Oh... you mentioned Cleveland, are you from around there? I used to live in Ohio. Del Ruse <jeffreyruse@...> wrote: Hi Del, Jeff is napping. This is Sue. Jeff's Hep C became active again after tha transplant. They never gave him any treatment for the hep C before transplant cause he was in really bad shape. He was diagnosed w/ end stage liver disease right away. So he had it very long time. We were in/out of hospital every other week. He had ascites, got drained every 2 weeks. They were taking out 8 liters. Then he got bleeding varicies. In intensive care. His MELD was 18 when they called for the transplant. But, 2 people ahead of him on list, they couldn,t make it because of snow. We made it up to Cleveland. It saved his

life. The Hep c was still in his system & it reactivated shortly after transplant. That is why he is on interferon now. His bloodwork is looking better. He knows how to read the levels now. Do u have itching real bad? Also Jeff had SEVERE CRAMPS all over.His muscles would tighten so bad he would try to get up and just fall to the floor. If u have any questions, please ask away. It is a very bad disease but we have gotten thru it. Take one day at a time. SueDel Compton <go_deliman > wrote: Hi Sue, and Jeff. Jeff, it sounds as if you have wonderful support people (and more,ofcourse), in your life. You are a fortunate man. If you have a chance, can you explain again, that, if I read it right... your one year post TP, and taking combo tx? Did you get an infected liver,

or was the HEP C not fully eradicated from you? Or is this 'normal' procedure after TP? What was your MELD when a donor liver became available , for you? I'm on the list, and have a MELD of 12, but will not become a "could be any day" candidate until MELD 20+. I do get confused pretty easy, and that's why I'm trying to clear this up, just in my mind. For some reason, I guess I thought TX would be a thing of the past after TP. It appears your still on tx. Welcome aboard and best6 wishes to all, Del Ruse <jeffreyruse > wrote: Hi.I am Jeff's wife

Sue.He liked talking to all last nite. I think it is great that he can talk & relate things about the disease & the transplant with others who have the same things. I support him but some things I don't know how he feels etc. Every Fri. nite he gets his shot. He just took it. He will be sick real bad tonite, but tomorrow he will be okay. Except for the headaches. Since it has been a year tomorrow for his transplant, He looks great. My Mom thinks he looks like a movie star now. She's 84, but she loves him dearly. It is a new life for him & me. Since he had to quit his old drinking ways , alot of his friends have quit coming around. We don't go to the bars that much anymore. So, a new way of life. But that is okay with us. He has new hobbies. Like fish. We have set up 4 fishtanks that keeps him busy. He also has started fixing up some of the house, little by little. Last year he couldn't do much at all. It was scary. Thanx again for letting him chat with you

guys. SueDeb <posttransplant > wrote: Jeff you are doing great for being new to computers. We all had to start somewhere. Thank You for choosing our group taking part in it so quickly and so good to have you in chat and part of our chat gang too. Chat is very rough to start out in and get your feet wet because of the fast pace of it but you did great. For any new

member knowing their way around computers or not it's tough to be the new kid on the block all new people and names to learn and we ended up with group nicknames too. You want to go by Jeff or Rooster ????? Our chat gang last night got to meet you and know you better. How about telling us in group and members about you ???? I don't usually post in group about members until

they mention it themselves but I thought you wouldn't mind and I would start you out. Jan 6 tomorrow will be Jeff's 1 year post transplant anniversary. I couldn't let your 1 year anniversary go by without mentioning it in group. Jeff Congratulations and Happy Birthday. It is a tradition we have among liver transplant recipients to also wish them a Happy Birthday on their

transplant anniversary date because we were so fortunate and very Blessed being given a 2nd chance at life. We Wish You All The Best. Deb __________________________________________________

[Guest guest]

Del. Sue here. U were diagnosed 2 yrs. ago. & u r still here? what r u doing to help yourself? Jeff was really bad shape. His varices r bleeding internally & he couldn't stop that. U don't have ascites yet? U have to be taking something to stop that. I know everyone is not the same but u r a miracle in a way. After the bleeding it is downhill from ther. The next thing for Jeff was not thinking correctly. He couldn't drive anymore because he would not know where he was going or doing. I would come home after work & he would not know who I was & he wouldn't know what he did all day. I am just glad he didn't burn the house down.Please respond. I am glad u r doing so well.Del Compton <go_deliman@...> wrote: Hi Sue. Thanks for your reply. Jeff and parallel pretty close in the fact that I too, had no idea there was something wrong with me... When I was diagnosed during a hospital stay for an unrelated problem, they did blood work, and found I had Hep C. After a bx they told me I was really sick, with ESLD as well. That was almost two years ago. I had heard of HEPATITIS & S before, and really wasn't concerned when the nurse told me I had it. I said...that's it? Hepatitis? Give me one of those shots I heard that hurt like Hell and I'll be on my way..HA!! Ignorance was bliss!!!! It's been a fairly smooth road for me, but I can't do the tx because my immune system is not willing

to fight off the bad guys.... Staph Infection. I tried twice, but it just doesn't work for me. Jeff sounds like he's been through a hell of a lot more than I. How did he notice the varicies? Was it discovered or thru tests, or bleeding from everywhere, or what? please.... How was the ascites found? I don't itch so much now, but while on tx I put thick socks (taped) over my hands to lessen the damage to my skin when I would involuntarily scratch. Long cool showers gave me relief, and some stuff from CVS Pharmacy called..(it's kind of a highly technical nature) Daily Moisture Lotion, (heh...heh..) I didn't feel a 'RUSH' of relief, but instead noticed my scratch marks were healing and not returning.. Cramps?? OMG... sometimes, (remember, I don't take tx), I'd wake up screaming because of the cramps in my calves. Probably the tx elevates

this symptom too. I wouldn't even try to stand up, like Jeff, I'm more of a screamer...hahaha.... (most times) but find a comfortable(?) position and chant to unknown Cramp Gods to please make it stop. My doc gave me Magnesium, I believe, and this was the miracle drug for me. Alot of us cramp. Non heppers, just trying to be helpful, advise that I should eat Banana's, for the potassium..... which I do..split in the middle and put on each side of 3 scoops of ice cream with chocolate syrup, and a couple of Maraschino Cherries,( more for presentation purposes than taste). A little whipped cream and I'm good to go ! No nuts though. My teeth either fell out or were pulled out a while ago.. No nuts.................... Drink lots of water, ofcourse, and that helps too. God Bless ya'll and Good Luck! Oh... you mentioned

Cleveland, are you from around there? I used to live in Ohio. Del Ruse <jeffreyruse > wrote: Hi Del, Jeff is napping. This is Sue. Jeff's Hep C became active again after tha transplant. They never gave him any treatment for the hep C before transplant cause he was in really bad shape. He was diagnosed w/ end stage liver disease right away. So he had it very long time. We were in/out of hospital every other week. He had ascites, got drained every 2 weeks. They were taking out 8 liters. Then he got bleeding varicies. In intensive care. His MELD was 18 when they called for the transplant. But, 2 people ahead of him on list, they couldn,t make it because of snow. We made it up to Cleveland. It saved his life. The Hep c was still in his system & it

reactivated shortly after transplant. That is why he is on interferon now. His bloodwork is looking better. He knows how to read the levels now. Do u have itching real bad? Also Jeff had SEVERE CRAMPS all over.His muscles would tighten so bad he would try to get up and just fall to the floor. If u have any questions, please ask away. It is a very bad disease but we have gotten thru it. Take one day at a time. SueDel Compton <go_deliman > wrote: Hi Sue, and Jeff. Jeff, it sounds as if you have wonderful support people (and more,ofcourse), in your life. You are a fortunate man. If you have a chance, can you explain again, that, if I read it right... your one year post TP, and taking combo tx? Did you get an infected liver, or was the HEP C not fully eradicated from

you? Or is this 'normal' procedure after TP? What was your MELD when a donor liver became available , for you? I'm on the list, and have a MELD of 12, but will not become a "could be any day" candidate until MELD 20+. I do get confused pretty easy, and that's why I'm trying to clear this up, just in my mind. For some reason, I guess I thought TX would be a thing of the past after TP. It appears your still on tx. Welcome aboard and best6 wishes to all, Del Ruse <jeffreyruse > wrote: Hi.I am Jeff's wife Sue.He liked talking to all last nite. I think

it is great that he can talk & relate things about the disease & the transplant with others who have the same things. I support him but some things I don't know how he feels etc. Every Fri. nite he gets his shot. He just took it. He will be sick real bad tonite, but tomorrow he will be okay. Except for the headaches. Since it has been a year tomorrow for his transplant, He looks great. My Mom thinks he looks like a movie star now. She's 84, but she loves him dearly. It is a new life for him & me. Since he had to quit his old drinking ways , alot of his friends have quit coming around. We don't go to the bars that much anymore. So, a new way of life. But that is okay with us. He has new hobbies. Like fish. We have set up 4 fishtanks that keeps him busy. He also has started fixing up some of the house, little by little. Last year he couldn't do much at all. It was scary. Thanx again for letting him chat with you guys. SueDeb

<posttransplant > wrote: Jeff you are doing great for being new to computers. We all had to start somewhere. Thank You for choosing our group taking part in it so quickly and so good to have you in chat and part of our chat gang too. Chat is very rough to start out in and get your feet wet because of the fast pace of it but you did great. For any new member knowing their way

around computers or not it's tough to be the new kid on the block all new people and names to learn and we ended up with group nicknames too. You want to go by Jeff or Rooster ????? Our chat gang last night got to meet you and know you better. How about telling us in group and members about you ???? I don't usually post in group about members until they mention it

themselves but I thought you wouldn't mind and I would start you out. Jan 6 tomorrow will be Jeff's 1 year post transplant anniversary. I couldn't let your 1 year anniversary go by without mentioning it in group. Jeff Congratulations and Happy Birthday. It is a tradition we have among liver transplant recipients to also wish them a Happy Birthday on their transplant

anniversary date because we were so fortunate and very Blessed being given a 2nd chance at life. We Wish You All The Best. Deb __________________________________________________

[Guest guest]

Hi Sue/Jeff, You made me think I mis-quoted the time since I've been dx'd, but it is correct. I just bought this townhouse, leaving the current (at that time) situation I was in, because I had an idea where it was going. February that will be two years that I've lived here. My G/F and I had been together for the three previous years, and she has three children. They lost their father when the oldest was 5, the next one was 3, and the new one was only 2 weeks old. Cancer. They are now 19, 15, and 12, I think.. It was hard on the oldest, and it was far from easy for my G/F to work, take care of three kids, and keep house. She is a very remarkable woman in my eyes in that respect. She's a biker, too! Then, years later hook up with me and comes home to see yet another man with a chronic illness laying in the bed, not working, feeling sick and just going thru the initial

acceptance of what was going on.. I didn't want her or the kids to watch me disintegrate if in fact that was what was going to happen.. SOOOOoooo.... exit stage left seemed in order, and here I am. We are still great friends and she is part of my Home Care Team... and can access my checking account if needed. Uh-OH... I forgot about THAT!!! just goofin'. I don't know why I'm still here. I have asked that same question many times in my life.... but there IS a reason, I know it! I was told to stop driving immediately, and it was a little tuff, one day ridin' my motorcycle and having a blast, to you will need to call Metro Lift for transportation. They don't charge disabled people... and will come right to your door Actually, I'm just REALLY now getting over that and have been somewhat immature about it. I actually cried one time on my motorcycle at a red light, coming home from my

regular pharmacy, (when I shouldn't have been driving or riding at all, but I sold my cars and justified riding for pills...)...because I didn't know where I was. At first, I thought...WOW!! This will be a cool adventure..... but then the reality set in that I wasn't just lost...... I didn't know where the HELL I was! Not one thing looked familiar!! I believe I am fortunate. The diseases I have been dx'd with have caused a FAST TRACK maturing process, which I DID/DO need, and I appreciate life and the time there is and realize I'm not bullet proof. A friend recently visited, and he really had issues about his job, the policies, the people, etc... He fell asleep with this on his lips, and awoke the next morning complaining about the same thing. I told him I didn't realize his new job was consuming his life so much, that he always seemed like a work to live, kinda' guy, as opposed to live to work. I

was just surprised at myself realizing that selling widgets, or whatever, is not what is truly important. Maybe writing about it so much isn't, too............. I'll stop. Del PS. OHIO?? where?? , Ruse <jeffreyruse@...> wrote: Del. Sue here. U were diagnosed 2 yrs. ago. & u r still here? what r u doing to help yourself? Jeff was really bad shape. His varices r bleeding

internally & he couldn't stop that. U don't have ascites yet? U have to be taking something to stop that. I know everyone __________________________________________________

[Guest guest]

Hi Sue

I'm SuZie & I live in the GWN(Great White North) which is not very white this year. You asked Del but I'm going to put my two cents in. You know that each person with HCV experiences it differently. I was dx'd sometime in the early '90s - my doctor & I figure that I was infected in 1969 or '70 so I've had a good run at this bug.

When I was dx'd I was immediately seen by a G I who did a biopsy & discovered I had chirrhosis so he started me on tx with interferon alone (standard tx then) I did not respond to it so they took me off after 12 weeks. My LFTs (Liver Function Tests) were very high so I had blood tests & saw the doc every couple of months. Then he got me into a study & I tried Interferon & ribavirin but did not respond to that either. Then my doctor died - he was a healthy 46 year old man but I'm still here, he isn't.

I got a new doc who wanted me to try tx again & when I agreed he started a bunch more tests plus a new biopsy - this one came back the same, cirrhosis but my LFTs were worse. He then refused to put me on tx, I'm now in ESLD but the TP docs say not bad enough for yet to consider a transplant.

I have the itchies really bad sometimes - they say it's caused by high bilirubin levels, I also have brain fog pretty bad at times. I'm on Lactulose to wash out the high ammonia but it sometimes doesn't seem to work all that well. I'm on Lasix & another diuretic for the edema.

I've had HCV for almost 40 years & I'm still here fighting the dragon! I'd like to think that I'm beating it just by being here.

SuZie & SpYke - the great G O T ( Galactic Overlord in Training)

Next time I'm coming back as a cat

Re: Re: NEW member - Hi Jeff/Hi Sue

Del. Sue here. U were diagnosed 2 yrs. ago. & u r still here? what r u doing to help yourself? Jeff was really bad shape. His varices r bleeding internally & he couldn't stop that. U don't have ascites yet? U have to be taking something to stop that. I know everyone is not the same but u r a miracle in a way. After the bleeding it is downhill from ther. The next thing for Jeff was not thinking correctly. He couldn't drive anymore because he would not know where he was going or doing. I would come home after work & he would not know who I was & he wouldn't know what he did all day. I am just glad he didn't burn the house down.Please respond. I am glad u r doing so well.Del Compton <go_deliman (DOT) com> wrote:

Hi Sue. Thanks for your reply.

Jeff and parallel pretty close in the fact that I too, had no idea there was something wrong with me... When I was diagnosed during a hospital stay for an unrelated problem, they did blood work, and found I had Hep C.

After a bx they told me I was really sick, with ESLD as well.

That was almost two years ago. I had heard of HEPATITIS & S before, and really wasn't concerned when the nurse told me I had it. I said...that' s it? Hepatitis? Give me one of those shots I heard that hurt like Hell and I'll be on my way..HA!! Ignorance was bliss!!!!

It's been a fairly smooth road for me, but I can't do the tx because my immune system is not willing to fight off the bad guys.... Staph Infection. I tried twice, but it just doesn't work for me.

Jeff sounds like he's been through a hell of a lot more than I.

How did he notice the varicies? Was it discovered or thru tests, or bleeding from everywhere, or what? please....

How was the ascites found?

I don't itch so much now, but while on tx I put thick socks (taped) over my hands to lessen the damage to my skin when I would involuntarily scratch. Long cool showers gave me relief, and some stuff from CVS Pharmacy called..(it' s kind of a highly technical nature) Daily Moisture Lotion, (heh...heh.. ) I didn't feel a 'RUSH' of relief, but instead noticed my scratch marks were healing and not returning..

Cramps?? OMG... sometimes, (remember, I don't take tx), I'd wake up screaming because of the cramps in my calves. Probably the tx elevates this symptom too. I wouldn't even try to stand up, like Jeff, I'm more of a screamer...hahaha. ... (most times) but find a comfortable( ?) position and chant to unknown Cramp Gods to please make it stop.

My doc gave me Magnesium, I believe, and this was the miracle drug for me.

Alot of us cramp. Non heppers, just trying to be helpful, advise that I should eat Banana's, for the potassium... .. which I do..split in the middle and put on each side of 3 scoops of ice cream with chocolate syrup, and a couple of Maraschino Cherries,( more for presentation purposes than taste). A little whipped cream and I'm good to go ! No nuts though. My teeth either fell out or were pulled out a while ago.. No nuts........ ......... ...

Drink lots of water, ofcourse, and that helps too.

God Bless ya'll and Good Luck!

Oh... you mentioned Cleveland, are you from around there?

I used to live in Ohio.

Del

Ruse <jeffreyruse> wrote:

Hi Del, Jeff is napping. This is Sue. Jeff's Hep C became active again after tha transplant. They never gave him any treatment for the hep C before transplant cause he was in really bad shape. He was diagnosed w/ end stage liver disease right away. So he had it very long time. We were in/out of hospital every other week. He had ascites, got drained every 2 weeks. They were taking out 8 liters. Then he got bleeding varicies. In intensive care. His MELD was 18 when they called for the transplant. But, 2 people ahead of him on list, they couldn,t make it because of snow. We made it up to Cleveland. It saved his life. The Hep c was still in his system & it reactivated shortly after transplant. That is why he is on interferon now. His bloodwork is looking better. He knows how to read the levels now. Do u have itching real bad? Also Jeff had SEVERE CRAMPS all over.His muscles would tighten so bad he would try to get up and just fall to the floor. If u have

any questions, please ask away. It is a very bad disease but we have gotten thru it. Take one day at a time. SueDel Compton <go_deliman (DOT) com> wrote:

Hi Sue, and Jeff.

Jeff, it sounds as if you have wonderful support people (and more,ofcourse) , in your life. You are a fortunate man.

If you have a chance, can you explain again, that, if I read it right... your one year post TP, and taking combo tx? Did you get an infected liver, or was the HEP C not fully eradicated from you? Or is this 'normal' procedure after TP? What was your MELD when a donor liver became available , for you?

I'm on the list, and have a MELD of 12, but will not become a "could be any day" candidate until MELD 20+.

I do get confused pretty easy, and that's why I'm trying to clear this up, just in my mind.

For some reason, I guess I thought TX would be a thing of the past after TP.

It appears your still on tx.

Welcome aboard and best6 wishes to all,

Del

Ruse <jeffreyruse> wrote:

Hi.I am Jeff's wife Sue.He liked talking to all last nite. I think it is great that he can talk & relate things about the disease & the transplant with others who have the same things. I support him but some things I don't know how he feels etc. Every Fri. nite he gets his shot. He just took it. He will be sick real bad tonite, but tomorrow he will be okay. Except for the headaches. Since it has been a year tomorrow for his transplant, He looks great. My Mom thinks he looks like a movie star now. She's 84, but she loves him dearly. It is a new life for him & me. Since he had to quit his old drinking ways , alot of his friends have quit coming around. We don't go to the bars that much anymore. So, a new way of life. But that is okay with us. He has new hobbies. Like fish. We have set up 4 fishtanks that keeps him busy. He also has started fixing up some of the house, little by little. Last year he couldn't do much at all. It was scary. Thanx again for

letting him chat with you guys. SueDeb <posttransplant> wrote:

Jeff you are doing great for being new to computers.

We all had to start somewhere.

Thank You for choosing our group taking part in it so quickly and so good to have you in chat and part of our chat gang too. Chat is very rough to start out in and get your feet wet because of the fast pace of it but you did great.

For any new member knowing their way around computers or not it's tough to be the new kid on the block all new people and names to learn and we ended up with group nicknames too.

You want to go by Jeff or Rooster ?????

Our chat gang last night got to meet you and know you better.

How about telling us in group and members about you ????

I don't usually post in group about members until they mention it themselves but I thought you wouldn't mind and I would start you out.

Jan 6 tomorrow will be Jeff's 1 year post transplant anniversary.

I couldn't let your 1 year anniversary go by without mentioning it in group.

Jeff Congratulations and Happy Birthday.

It is a tradition we have among liver transplant recipients to also wish them a Happy Birthday on their transplant anniversary date because we were so fortunate and very Blessed being given a 2nd chance at life.

We Wish You All The Best.

Deb

____________ _________ _________ _________ _________ __

[Guest guest]

hi suzie, My husband had the same things as u describe. I would come home from work & he wouldn't know who i was sometimes. He was on lactulose & lasix also. He tried URSO for the itching. It seemed to help.His cramps were really bad. He would get up at nite & fall on the floor his legs hurt so bad.He couldn't get anything for that.It was a scary time.I know everyone is different.He is on interferon & ribavirin now. 8th week. His blood work for liver enzymes, like ALT AST etc. r down from when he started. That seems to be a good thing. He takes 1 day at a time. But he does seem to get very agitated when things don't happen as quickly as he thinks they should.Suesuzie <suzieandsandy@...> wrote: Hi Sue I'm SuZie & I live in the GWN(Great White North) which is not very white this year. You asked Del but I'm going to put my two cents in. You know that each person with HCV experiences it differently. I was dx'd sometime in the early '90s - my doctor & I figure that I was infected in 1969 or '70 so I've had a good run at this bug. When I was dx'd I was immediately seen by a G I who did a biopsy & discovered I had chirrhosis so he started me on tx with interferon alone (standard tx then) I did not respond to it so they

took me off after 12 weeks. My LFTs (Liver Function Tests) were very high so I had blood tests & saw the doc every couple of months. Then he got me into a study & I tried Interferon & ribavirin but did not respond to that either. Then my doctor died - he was a healthy 46 year old man but I'm still here, he isn't. I got a new doc who wanted me to try tx again & when I agreed he started a bunch more tests plus a new biopsy - this one came back the same, cirrhosis but my LFTs were worse. He then refused to put me on tx, I'm now in ESLD but the TP docs say not bad enough for yet to consider a transplant. I have the itchies really bad sometimes - they say it's caused by high bilirubin levels, I also have brain fog pretty bad at times. I'm on Lactulose to wash out the high ammonia but it sometimes doesn't seem to work all

that well. I'm on Lasix & another diuretic for the edema. I've had HCV for almost 40 years & I'm still here fighting the dragon! I'd like to think that I'm beating it just by being here. SuZie & SpYke - the great G O T ( Galactic Overlord in Training) Next time I'm coming back as a cat Re: Re: NEW member - Hi Jeff/Hi Sue Del. Sue here. U were diagnosed 2 yrs. ago. & u r still here? what r u doing to help yourself? Jeff was really bad shape. His varices r bleeding internally & he couldn't stop that. U don't have ascites yet? U have to be taking something to stop that. I know everyone is not the same but u r a miracle in a way. After the bleeding it is downhill from ther. The next thing for Jeff was not thinking correctly. He couldn't drive anymore because he would not know where he was going or doing. I would come home after work & he would not know who I was & he wouldn't know what he did all day. I am just glad he didn't burn the house down.Please respond. I am glad u r doing so

well.Del Compton <go_deliman (DOT) com> wrote: Hi Sue. Thanks for your reply. Jeff and parallel pretty close in the fact that I too, had no idea there was something wrong with me... When I was diagnosed during a hospital stay for an unrelated problem, they did blood work, and found I had Hep C. After a bx they told me I was really sick, with ESLD as well. That was almost two years ago. I had heard of HEPATITIS & S before, and really wasn't concerned when the nurse told me I had it. I said...that' s it? Hepatitis? Give me one of those shots I heard that hurt like Hell and I'll be on my way..HA!! Ignorance was bliss!!!! It's been a fairly smooth road for me, but I can't do the tx because my immune system is not willing to fight off the bad guys.... Staph Infection. I

tried twice, but it just doesn't work for me. Jeff sounds like he's been through a hell of a lot more than I. How did he notice the varicies? Was it discovered or thru tests, or bleeding from everywhere, or what? please.... How was the ascites found? I don't itch so much now, but while on tx I put thick socks (taped) over my hands to lessen the damage to my skin when I would involuntarily scratch. Long cool showers gave me relief, and some stuff from CVS Pharmacy called..(it' s kind of a highly technical nature) Daily Moisture Lotion, (heh...heh.. ) I didn't feel a 'RUSH' of relief, but instead noticed my scratch marks were healing and not returning.. Cramps?? OMG... sometimes, (remember, I don't take tx), I'd wake up screaming because of the cramps in my calves. Probably the tx elevates this symptom too. I wouldn't even try to stand up, like

Jeff, I'm more of a screamer...hahaha. ... (most times) but find a comfortable( ?) position and chant to unknown Cramp Gods to please make it stop. My doc gave me Magnesium, I believe, and this was the miracle drug for me. Alot of us cramp. Non heppers, just trying to be helpful, advise that I should eat Banana's, for the potassium... .. which I do..split in the middle and put on each side of 3 scoops of ice cream with chocolate syrup, and a couple of Maraschino Cherries,( more for presentation purposes than taste). A little whipped cream and I'm good to go ! No nuts though. My teeth either fell out or were pulled out a while ago.. No nuts........ ......... ... Drink lots of water, ofcourse, and that helps too. God Bless ya'll and Good Luck! Oh... you mentioned Cleveland, are you from around there? I used to live in Ohio.

Del Ruse <jeffreyruse> wrote: Hi Del, Jeff is napping. This is Sue. Jeff's Hep C became active again after tha transplant. They never gave him any treatment for the hep C before transplant cause he was in really bad shape. He was diagnosed w/ end stage liver disease right away. So he had it very long time. We were in/out of hospital every other week. He had ascites, got drained every 2 weeks. They were taking out 8 liters. Then he got bleeding varicies. In intensive care. His MELD was 18 when they called for the transplant. But, 2 people ahead of him on list, they couldn,t make it because of snow. We made it up to Cleveland. It saved his life. The Hep c was still in his system & it reactivated shortly after transplant. That is why he is on interferon now. His bloodwork is looking

better. He knows how to read the levels now. Do u have itching real bad? Also Jeff had SEVERE CRAMPS all over.His muscles would tighten so bad he would try to get up and just fall to the floor. If u have any questions, please ask away. It is a very bad disease but we have gotten thru it. Take one day at a time. SueDel Compton <go_deliman (DOT) com> wrote: Hi Sue, and Jeff. Jeff, it sounds as if you have wonderful support people (and more,ofcourse) , in your life. You are a fortunate man. If you have a chance, can you explain again, that, if I read it right... your one year post TP, and taking combo tx? Did you get an infected liver, or was the HEP C not fully eradicated from you? Or is this 'normal' procedure after TP? What was your MELD when a donor liver became available , for you? I'm on the list, and have a MELD of 12, but will not become a "could be any day" candidate until MELD 20+. I do get confused pretty easy, and that's why I'm trying to clear this up, just in my mind. For some reason, I guess I thought TX would be a thing of the past after TP. It appears your still on tx. Welcome aboard and best6 wishes to all, Del Ruse <jeffreyruse> wrote: Hi.I am Jeff's wife Sue.He liked talking to all last nite. I think it is great that he can talk & relate things about the disease & the transplant with others who have the same things. I support him but some things I don't

know how he feels etc. Every Fri. nite he gets his shot. He just took it. He will be sick real bad tonite, but tomorrow he will be okay. Except for the headaches. Since it has been a year tomorrow for his transplant, He looks great. My Mom thinks he looks like a movie star now. She's 84, but she loves him dearly. It is a new life for him & me. Since he had to quit his old drinking ways , alot of his friends have quit coming around. We don't go to the bars that much anymore. So, a new way of life. But that is okay with us. He has new hobbies. Like fish. We have set up 4 fishtanks that keeps him busy. He also has started fixing up some of the house, little by little. Last year he couldn't do much at all. It was scary. Thanx again for letting him chat with you guys. SueDeb <posttransplant> wrote: Jeff you are doing great for being new to computers. We all had to start somewhere. Thank You for choosing our group taking part in it so quickly and so good to have you in chat and part of our chat gang too. Chat is very rough to start out in and get your feet wet because of the fast pace of it but you did great. For any new member knowing their way around computers or not it's tough to be the new kid on the block all new people and names to learn and we ended up with group nicknames too. You want to go by Jeff or Rooster ????? Our chat gang last night got to meet you and know you better. How about telling us in group and members about you ???? I don't usually post in group about members until they mention it themselves but I thought you wouldn't mind and I would start you out. Jan 6 tomorrow will be Jeff's 1 year post transplant anniversary. I couldn't let your 1 year anniversary go by without mentioning it in group. Jeff Congratulations and Happy Birthday. It is a tradition we have among liver transplant recipients to also wish them a Happy Birthday on their transplant anniversary date because we were so fortunate and very Blessed being given a 2nd chance at life. We Wish You All

The Best. Deb ____________ _________ _________ _________ _________ __

[Guest guest]

Hi Sue,

Has your husband ever been tested for diabetes? Before I was diagnosed, I used to get some of the worst leg cramps I've ever experience but since then, no problem. Is he thirsty all of the time? Pee a lot? Unexplained weight loss? High blood pressure? Ask your doc to test him, if he is diabetic it could explain a lot. I was on tx twice & never had cramps like that but when I developed diabetes, the cramps came with. I also had high blood pressure that my doc had me on at least two meds for.They didn't help but since I got started on Insulin for the diabetes my blood pressure is normal on no meds at all.

Hugs,

SuZie & Sir SpyKe the fuzzy - aka he who calms me

Next time I'm coming back as a cat

[Guest guest]

Your an interesting person Del.

Gail

Re: Re: NEW member - Hi Jeff/Hi Sue

Hi Sue/Jeff,

You made me think I mis-quoted the time since I've been dx'd, but it is correct. I just bought this townhouse, leaving the current (at that time) situation I was in, because I had an idea where it was going. February that will be two years that I've lived here.

My G/F and I had been together for the three previous years, and she has three children. They lost their father when the oldest was 5, the next one was 3, and the new one was only 2 weeks old. Cancer. They are now 19, 15, and 12, I think..

It was hard on the oldest, and it was far from easy for my G/F to work, take care of three kids, and keep house. She is a very remarkable woman in my eyes in that respect. She's a biker, too! Then, years later hook up with me and comes home to see yet another man with a chronic illness laying in the bed, not working, feeling sick and just going thru the initial acceptance of what was going on.. I didn't want her or the kids to watch me disintegrate if in fact that was what was going to happen.. SOOOOoooo.... exit stage left seemed in order, and here I am. We are still great friends and she is part of my Home Care Team... and can access my checking account if needed. Uh-OH... I forgot about THAT!!! just goofin'.

I don't know why I'm still here.

I have asked that same question many times in my life.... but there IS a reason, I know it!

I was told to stop driving immediately, and it was a little tuff, one day ridin' my motorcycle and having a blast, to you will need to call Metro Lift for transportation. They don't charge disabled people... and will come right to your door Actually, I'm just REALLY now getting over that and have been somewhat immature about it. I actually cried one time on my motorcycle at a red light, coming home from my regular pharmacy, (when I shouldn't have been driving or riding at all, but I sold my cars and justified riding for pills...)...because I didn't know where I was. At first, I thought...WOW!! This will be a cool adventure..... but then the reality set in that I wasn't just lost...... I didn't know where the HELL I was! Not one thing looked familiar!!

I believe I am fortunate. The diseases I have been dx'd with have caused a FAST TRACK maturing process, which I DID/DO need, and I appreciate life and the time there is and realize I'm not bullet proof.

A friend recently visited, and he really had issues about his job, the policies, the people, etc... He fell asleep with this on his lips, and awoke the next morning complaining about the same thing. I told him I didn't realize his new job was consuming his life so much, that he always seemed like a work to live, kinda' guy, as opposed to live to work. I was just surprised at myself realizing that selling widgets, or whatever, is not what is truly important. Maybe writing about it so much isn't, too.............

I'll stop.

Del

PS. OHIO?? where??

,

Ruse <jeffreyruse@...> wrote:

Del. Sue here. U were diagnosed 2 yrs. ago. & u r still here? what r u doing to help yourself? Jeff was really bad shape. His varices r bleeding internally & he couldn't stop that. U don't have ascites yet? U have to be taking something to stop that. I know everyone

__________________________________________________

[Guest guest]

Hi Suzie, I saw your message pop up as I was browsing on the info. highway. We just got this gadget. Fascinating. Jeff has been tested for sugar. His leg cramps went away after the transplant. The only other problem is high tryglicerides which is do to the medicine for rejection. They have told him the shots he is doing could cause sugar problems. We will be up at Cleveland Clinic at the end of the month for check-up with his liver dr. I write all questions down when I think of them before hand. Sometimes he gets upset that we have so many, but hey, we're paying for it. I want to get my $ worth. We have learned ask, ask, ask or else u never get the right answers. The Clinic has been very good. A nurse from the transplant side calls every week to ask how he is doing, and to tell him about his bloodwork if it is good etc. He gets blood drawn every week, but since it is pretty stable, they may cut back to twice a month.He has also signed up with the Pegassis hot line. It is

free if u r on their meds. A nurse from the program calls once a month, asks certain questions etc. She says depression is a big risk. That,s why I have list for Jeff when I go to work, he can do the list that day. Keeps him busy. He is laid off from work right now. Be called back in the spring. Suesuzie <suzieandsandy@...> wrote: Hi Sue, Has your husband ever

been tested for diabetes? Before I was diagnosed, I used to get some of the worst leg cramps I've ever experience but since then, no problem. Is he thirsty all of the time? Pee a lot? Unexplained weight loss? High blood pressure? Ask your doc to test him, if he is diabetic it could explain a lot. I was on tx twice & never had cramps like that but when I developed diabetes, the cramps came with. I also had high blood pressure that my doc had me on at least two meds for.They didn't help but since I got started on Insulin for the diabetes my blood pressure is normal on no meds at all. Hugs, SuZie & Sir SpyKe the fuzzy - aka he who calms me Next time I'm coming back as a

cat __________________________________________________

[Guest guest]

Sue,

Never be afraid to ask questions. As our very own Big Red(aka Deb, DSD ...) says "There's no such thing as a stupid question." How are we supposed to understand what is happening to our bodies if we don't. I asked so many questions I've started educating some of my doctors.

You'll find that a lot of the people here know more about HCV than 90% of all doctors but then again we're only concentrating on one disease. I'm Canadian so I don't have to pay to see any doctor but my meds were very expensive until I qaualified for assistance, after that though I only pay $2 per script. I'm on disability now but it's really a stretch some months.

Depression can be a facter in tx, most docs will make sure their patients are on anti-d's before starting tx. I was already on them so my doc didn't bother. You have to find the right one though. They can be hard on the liver & people don't all react the same to them. Check with the doctors.

SuZie & SpYke - who taught her how to stick her nose in all kinds of places

Next time I'm coming back as a cat

[Guest guest]

Has the doctor put your husband on anti depressents.The riboveron can cause a person to get very anxious and it is standard to put them on anti depressents during treatment.It helps a great deal.The longer he is on treatment the more agitated he will get.

Gail

Re: Re: NEW member - Hi Jeff/Hi Sue

Del. Sue here. U were diagnosed 2 yrs. ago. & u r still here? what r u doing to help yourself? Jeff was really bad shape. His varices r bleeding internally & he couldn't stop that. U don't have ascites yet? U have to be taking something to stop that. I know everyone is not the same but u r a miracle in a way. After the bleeding it is downhill from ther. The next thing for Jeff was not thinking correctly. He couldn't drive anymore because he would not know where he was going or doing. I would come home after work & he would not know who I was & he wouldn't know what he did all day. I am just glad he didn't burn the house down.Please respond. I am glad u r doing so well.Del Compton <go_deliman (DOT) com> wrote:

Hi Sue. Thanks for your reply.

Jeff and parallel pretty close in the fact that I too, had no idea there was something wrong with me... When I was diagnosed during a hospital stay for an unrelated problem, they did blood work, and found I had Hep C.

After a bx they told me I was really sick, with ESLD as well.

That was almost two years ago. I had heard of HEPATITIS & S before, and really wasn't concerned when the nurse told me I had it. I said...that' s it? Hepatitis? Give me one of those shots I heard that hurt like Hell and I'll be on my way..HA!! Ignorance was bliss!!!!

It's been a fairly smooth road for me, but I can't do the tx because my immune system is not willing to fight off the bad guys.... Staph Infection. I tried twice, but it just doesn't work for me.

Jeff sounds like he's been through a hell of a lot more than I.

How did he notice the varicies? Was it discovered or thru tests, or bleeding from everywhere, or what? please....

How was the ascites found?

I don't itch so much now, but while on tx I put thick socks (taped) over my hands to lessen the damage to my skin when I would involuntarily scratch. Long cool showers gave me relief, and some stuff from CVS Pharmacy called..(it' s kind of a highly technical nature) Daily Moisture Lotion, (heh...heh.. ) I didn't feel a 'RUSH' of relief, but instead noticed my scratch marks were healing and not returning..

Cramps?? OMG... sometimes, (remember, I don't take tx), I'd wake up screaming because of the cramps in my calves. Probably the tx elevates this symptom too. I wouldn't even try to stand up, like Jeff, I'm more of a screamer...hahaha. ... (most times) but find a comfortable( ?) position and chant to unknown Cramp Gods to please make it stop.

My doc gave me Magnesium, I believe, and this was the miracle drug for me.

Alot of us cramp. Non heppers, just trying to be helpful, advise that I should eat Banana's, for the potassium... .. which I do..split in the middle and put on each side of 3 scoops of ice cream with chocolate syrup, and a couple of Maraschino Cherries,( more for presentation purposes than taste). A little whipped cream and I'm good to go ! No nuts though. My teeth either fell out or were pulled out a while ago.. No nuts........ ......... ...

Drink lots of water, ofcourse, and that helps too.

God Bless ya'll and Good Luck!

Oh... you mentioned Cleveland, are you from around there?

I used to live in Ohio.

Del

Ruse <jeffreyruse> wrote:

Hi Del, Jeff is napping. This is Sue. Jeff's Hep C became active again after tha transplant. They never gave him any treatment for the hep C before transplant cause he was in really bad shape. He was diagnosed w/ end stage liver disease right away. So he had it very long time. We were in/out of hospital every other week. He had ascites, got drained every 2 weeks. They were taking out 8 liters. Then he got bleeding varicies. In intensive care. His MELD was 18 when they called for the transplant. But, 2 people ahead of him on list, they couldn,t make it because of snow. We made it up to Cleveland. It saved his life. The Hep c was still in his system & it reactivated shortly after transplant. That is why he is on interferon now. His bloodwork is looking better. He knows how to read the levels now. Do u have itching real bad? Also Jeff had SEVERE CRAMPS all over.His muscles would tighten so bad he would try to get up and just fall to the floor. If u have any questions, please ask away. It is a very bad disease but we have gotten thru it. Take one day at a time. SueDel Compton <go_deliman (DOT) com> wrote:

Hi Sue, and Jeff.

Jeff, it sounds as if you have wonderful support people (and more,ofcourse) , in your life. You are a fortunate man.

If you have a chance, can you explain again, that, if I read it right... your one year post TP, and taking combo tx? Did you get an infected liver, or was the HEP C not fully eradicated from you? Or is this 'normal' procedure after TP? What was your MELD when a donor liver became available , for you?

I'm on the list, and have a MELD of 12, but will not become a "could be any day" candidate until MELD 20+.

I do get confused pretty easy, and that's why I'm trying to clear this up, just in my mind.

For some reason, I guess I thought TX would be a thing of the past after TP.

It appears your still on tx.

Welcome aboard and best6 wishes to all,

Del

Ruse <jeffreyruse> wrote:

Hi.I am Jeff's wife Sue.He liked talking to all last nite. I think it is great that he can talk & relate things about the disease & the transplant with others who have the same things. I support him but some things I don't know how he feels etc. Every Fri. nite he gets his shot. He just took it. He will be sick real bad tonite, but tomorrow he will be okay. Except for the headaches. Since it has been a year tomorrow for his transplant, He looks great. My Mom thinks he looks like a movie star now. She's 84, but she loves him dearly. It is a new life for him & me. Since he had to quit his old drinking ways , alot of his friends have quit coming around. We don't go to the bars that much anymore. So, a new way of life. But that is okay with us. He has new hobbies. Like fish. We have set up 4 fishtanks that keeps him busy. He also has started fixing up some of the house, little by little. Last year he couldn't do much at all. It was scary. Thanx again for letting him chat with you guys. SueDeb <posttransplant> wrote:

Jeff you are doing great for being new to computers.

We all had to start somewhere.

Thank You for choosing our group taking part in it so quickly and so good to have you in chat and part of our chat gang too. Chat is very rough to start out in and get your feet wet because of the fast pace of it but you did great.

For any new member knowing their way around computers or not it's tough to be the new kid on the block all new people and names to learn and we ended up with group nicknames too.

You want to go by Jeff or Rooster ?????

Our chat gang last night got to meet you and know you better.

How about telling us in group and members about you ????

I don't usually post in group about members until they mention it themselves but I thought you wouldn't mind and I would start you out.

Jan 6 tomorrow will be Jeff's 1 year post transplant anniversary.

I couldn't let your 1 year anniversary go by without mentioning it in group.

Jeff Congratulations and Happy Birthday.

It is a tradition we have among liver transplant recipients to also wish them a Happy Birthday on their transplant anniversary date because we were so fortunate and very Blessed being given a 2nd chance at life.

We Wish You All The Best.

Deb

____________ _________ _________ _________ _________ __