Re: Randyssssss, Imuran, Prednisone

[Guest guest]

I'm glad that all this is having positive effects for you! I'm just starting down the road and it's people like you who help me have the courage to give it the best I can although it would really help if I had a loving caring woman in my life to be by my side....Not for sympathy mind you but for love and kindness and understanding! You are both extremely fortunate to have each other! Today I go for my MRI to find out if the nodule they found is malignant or not. The Dr says the usually are but I'm still keeping a little hope in my ocket...I have to!!! Well, thanks again and take care!

Randy (Sparky)cheryl722@... wrote:

Hello all you fellow Randys,

Yes my husband's name is Randy....not a variation of it just Randy. He is such a character... always into mischief now that he feels better. He is an electronics engineer and designs things for the huge telescope here at the Observatory.

Randy took Imuran pre-tx and it upset his stomach but not to the point of having to discontinue it. We found that when he drank orange juice or anything with alot of Vitamin C in it, his stomach would feel much worse. Just an observation we made.

Regarding prednisone-- Randy was on it until the last six months prior to the tx and has been on it since the tx. He takes 5mg/day now. We make sure he takes his calcium each day and has a bone scan each year. We believe the prednisone is what has kept his AIH in check since the surgery. We have found in the past 5 years (and this is only our opinion), that when pred. is stopped and the person has AIH, within the year their liver enzyme numbers creep back up-- this has happened in both pre and post tx people. Although pred. is a nasty drug, we have found ways to live with it. For the newbies here, Randy broke his leg in a freak accident at work ( he slipped on a chair caster at work which tossed him into a bank of shelving with equipment on it. His knee shattered one of the shelves and all the equipment fell on his leg). He recovered in a shorter period of time than most people with the injury he had (he fractured his knee

plateau in 5 places). He was able to keep the external fixator on for 12 weeks with out infection. (most people dont make it 4 weeks) and he later had 2 plates and 12 screws removed from his ankle from a previous fall years ago. The ortho doctor could not believe how nicely and quickly he recovers and the bone regrows considering he has been on pred. since 1997. But the only time his lab numbers have been elevated was when he was taking pain meds from the surgery. Within 7 days of stopping the medication, his numbers have been perfect. So for us, stopping pred. is not an option we will explore.

If anyone wants to see a pic of Randy, email me personally and I will post the picture for you. It will be 5 years in Dec. since the transplant and he hasnt looked back since. We learned alot from the disease-- one of which was to live life not just be a spectator.

The surgery gave the boyish, impish personality back to Randy. He has learned to balance work and pleasure and enjoy them both. We married after the surgery and he gained a family. He has learned to take time to smell the flowers. I knew I was in trouble when my daughter came dashing out of school on the first day and told Randy that the science teacher said it was okay if her science project went pop but not ka-boom. They often go into the basement and concoct experiments and do research together. These little things in life bring me great pleasure. But seeing him standing in the woods up in the mountains just surveying the scenery is the best. We have been given a chance to live a life together and we will make the most of it.

Cheryl & Randy

Randy tx 12-14-99 AIH

Cheryl is his Living Liver Donor

Living Liver Donor Surgery #2 at the Clinic

Cleveland Clinic Foundation

[Guest guest]

Cheryl.... I truly love you guys' story..keep on keeping on.

love jerry

[Guest guest]

Cheryl,

I have known you (or been seeing you in the group) lol...I would loveeeee to see a pic of Randy and of you. My email is grandma417_2000@...gefox@... wrote:

Cheryl.... I truly love you guys' story..keep on keeping on.love jerry

[Guest guest]

Cheryl,

I am sorry. lol I sent last email before I signed it!!

Beckiegefox@... wrote:

Cheryl.... I truly love you guys' story..keep on keeping on.love jerry

[Guest guest]

C and R, what a lovely story, thanks for the post and all the info! I enjoy reading this digest more and more daily, again thanks..........Would love to have you send me a picture of Randy, have a great day, ...............cheryl722@... wrote:

Hello all you fellow Randys,

Yes my husband's name is Randy....not a variation of it just Randy. He is such a character... always into mischief now that he feels better. He is an electronics engineer and designs things for the huge telescope here at the Observatory.

Randy took Imuran pre-tx and it upset his stomach but not to the point of having to discontinue it. We found that when he drank orange juice or anything with alot of Vitamin C in it, his stomach would feel much worse. Just an observation we made.

Regarding prednisone-- Randy was on it until the last six months prior to the tx and has been on it since the tx. He takes 5mg/day now. We make sure he takes his calcium each day and has a bone scan each year. We believe the prednisone is what has kept his AIH in check since the surgery. We have found in the past 5 years (and this is only our opinion), that when pred. is stopped and the person has AIH, within the year their liver enzyme numbers creep back up-- this has happened in both pre and post tx people. Although pred. is a nasty drug, we have found ways to live with it. For the newbies here, Randy broke his leg in a freak accident at work ( he slipped on a chair caster at work which tossed him into a bank of shelving with equipment on it. His knee shattered one of the shelves and all the equipment fell on his leg). He recovered in a shorter period of time than most people with the injury he had (he fractured his knee

plateau in 5 places). He was able to keep the external fixator on for 12 weeks with out infection. (most people dont make it 4 weeks) and he later had 2 plates and 12 screws removed from his ankle from a previous fall years ago. The ortho doctor could not believe how nicely and quickly he recovers and the bone regrows considering he has been on pred. since 1997. But the only time his lab numbers have been elevated was when he was taking pain meds from the surgery. Within 7 days of stopping the medication, his numbers have been perfect. So for us, stopping pred. is not an option we will explore.

If anyone wants to see a pic of Randy, email me personally and I will post the picture for you. It will be 5 years in Dec. since the transplant and he hasnt looked back since. We learned alot from the disease-- one of which was to live life not just be a spectator.

The surgery gave the boyish, impish personality back to Randy. He has learned to balance work and pleasure and enjoy them both. We married after the surgery and he gained a family. He has learned to take time to smell the flowers. I knew I was in trouble when my daughter came dashing out of school on the first day and told Randy that the science teacher said it was okay if her science project went pop but not ka-boom. They often go into the basement and concoct experiments and do research together. These little things in life bring me great pleasure. But seeing him standing in the woods up in the mountains just surveying the scenery is the best. We have been given a chance to live a life together and we will make the most of it.

Cheryl & Randy

Randy tx 12-14-99 AIH

Cheryl is his Living Liver Donor

Living Liver Donor Surgery #2 at the Clinic

Cleveland Clinic Foundation