Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 Dear Ginger and All, We are doing just fine. I have a new job really close to home and love it. We have been looking at property and houses -- want to get out of the city and just relax. Randy is having an endoscopy today -- he has had some indigestion that is persistant and prilosec isnt really helping so they want to see what is going on. He had this prior to the transplant so they want to make sure he doesnt have an ulcer or a surgical induced hernia. Minor thing but more aggravating than serious. Also, he goes back this Friday for a follow up for the cataract surgery and they should give him the new precription for his glasses. All things are maintenance type things for him. He looks wonderful, feels great and is enjoying life. We cannot believe it has been over 9 months already. We knew we made the right decision to have the surgery as our lives are almost back to normal and the transplant is merely a bump in the road for us. We are in touch with alot of people all the time (doing alot of behind the scene type stuff) -- ie: insurance carriers, doctors, donors, potential donors, recipients, etc. His insurance carrier has told us other ins. companies are following our recovery as well. Seems the cost of our surgery is less than half the normal liver transplant case and that included my surgery as well. Some companies are reconsidering their stance on not covering the donor evaluations and donor surgery. They are seeing the difference it makes -- unfortunately they see the monetary side and not that the earlier surgery benefits the patient and family. But, heck, we will take their consent to pay anyway we can get it! I read my email but am far, far behind. Last time I checked, I had almost the limit my email box would hold LOL. We hope to post some new pictures soon and you can see for yourselves how well Randy is doing. All labs for both of us continue to stay in the normal ranges and his drop to 5mg of prednisone in June was the toughest on him. It took about 5 weeks until all smoothed out and he felt his old self again. He was lucky in that mostly the fatigue was the worse symptom. He had some aches and muscle cramps but tylenol helped during the first couple of weeks. For now, I think, they will keep him on the 5mg and not try to go to 2.5mg. We have read articles that have us convinced that that low of a dosage may not be good for him because of the AIH. He will always take some dose of that dreaded medicine so we do all the things to help counteract the side effects -- he makes sure he gets lots of calcium and a bone scan if forth coming. Well, gotta get ready for work. Take care!!!!!! Cheryl & Randy Randy tx 12-14-99 AIH Cheryl is his donor Cleveland Clinic in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 In a message dated 9/27/00 7:11:48 AM Eastern Daylight Time, cheryl722@... writes: << as his living liver donor and have never regretted my decision to donate. However, if you had been my recipient, I would be wondering about now, was it worth it. >> Way to go, Cheryl! Nice to hear that all is well with you two. You sure do keep busy. You are an inspiration to all of us. Love and hugs, Ginger--AIH-IN FLA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 Hi Cheryl, don't know if you saw my post but Jodi is going on the transplant list. Dr. Reddy said the living donor could be an option. I am two years over the age limit but still might be under consideration if we are a match. Will know more after we talk to the transplant team, of course Jodi has to have a number of tests done before hand. Glad to hear Randy is doing so well. Jodi is having a hard time with me wanting to be a donor. She is scared something might happen to me. We have to do a lot more talking about it but I think she is looking at it from the point of view that if something happens to her she wants to know I will be here to help raise Colton. Will do a lot of praying and talking to the doctors before we know which is the best way. Thanks and hope you are having a good holiday. God bless, Genny/Jodi's Mom/Fl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 I cannot get the E-mail to go through at the address shown in the group. Cheryl1722@... what is the problem? It says they show no member with this address. Please send me correct E-mail address and I will send you my home address. You are so very kind and I thank you. Genny/Jodi's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2000 Report Share Posted November 28, 2000 Dear Genny, Here is my email address: CHERYL722@... there is not a 1 in the address Hoping Jodi is feeling better Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 Good luck on Dec. 13 Cheryl and Randy. We will be praying for you guys. Be sure and give us the news as soon as possible. Take care and God bless, Genny/Jodi's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 Goodmorning Cheryl Wow you are new to this....I have not been able to be on here since sometime in Nov when Ty went into the hosp...with shingles..We got home right before Thanksgiving so things were rather hectic here trying to get everything together at the last minute.Dinner is at our house and so had all the shopping to do etc...When Ty is in the hosp he is 2 hours away so I always stay....its is not worth all the driving back and forth and alot of the times Ty has to go thru so much that I would not want him there alone...He is in a great hosp...Childrens Hosp in Philadelphia...In fact while we were there the last time there was a press conference and big celebration and a live broadcast because the hosp had been named the #1 Childrens Hosp in the US...The article is in Child mag...I still haven't had the time to go and get it...When I am out I have a million other things on my mind...picking up meds..food Ty wants ...he is having trouble gaining the weight back..and my mom is in a Rehab full time now...so there is visiting to do there.... So you will have to tell me alittle about your self...Married...children...pets...where you live...etc...and how you are feeling.... I have been married 28 yrs to Bob..we were HS sweethearts....We both turned 50 this last year...OUCH...We have a 26 yr old daughter who lives in Chicago and a 22 yr old son who lives in Conn.(he has UC since he was 3)bu t he is doing well...and Then my Tyler...who is just 18....He is so happy to be back at school although yesterday hecame home early with a migraine...today he feels pretty good so hopefully he will make it thru the day... Oh pets....We have one dog..a boxer...5 cats...and a rabbitt..and about 6 birdfeeders...So feeding time alone in the morning can take some time...I love to watch the birds....One of the cats is my moms because she used to live with us until she started having her health problems.... Well it has been nice meeting you and hope to hear from you soon... Its so nice to meet so many people and know that when you need them you can get on here and pour heart out and there are so many that completely understand... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 Hi Cheryl You have sent me about 4 e-mails that have to be downloaded and when I do they come unreadable....I would love to know what you have been saying....I hope at least your new ones will not have to be downloaded....Sorry Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 > Oh pets....We have one dog..a boxer...5 cats...and a rabbitt..and about 6 > birdfeeders...So feeding time alone in the morning can take some time...I > love to watch the birds....One of the cats is my moms because she used to > live with us until she started having her health problems.... Hi Luanne, Your house sounds like mine. I have a dog, cocker spaniel, 3 cats, 3 horses with one on the way, a gecko (Tommy's), and fish aquariums. I love them. THey keep my sanity. Debbie (Tommy's Mom) > --- Have a fun day! --- debbiehenry@... --- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 wow,.... someone else who is in the 5 cat club:)) I have 5 too Re: [ ] Cheryl > >> Oh pets....We have one dog..a boxer...5 cats...and a rabbitt..and about 6 >> birdfeeders...So feeding time alone in the morning can take some time...I >> love to watch the birds....One of the cats is my moms because she used to >> live with us until she started having her health problems.... > >Hi Luanne, > >Your house sounds like mine. I have a dog, cocker spaniel, 3 cats, 3 horses >with one on the way, a gecko (Tommy's), and fish aquariums. I love them. >THey keep my sanity. > >Debbie (Tommy's Mom) >> > > > >--- Have a fun day! >--- debbiehenry@... >--- > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 you guys are rookies..... there was a time when we had 23 cats.... thankGod those days are gone... jerry wow,.... someone else who is in the 5 cat club:)) I have 5 too Re: [ ] Cheryl > >> Oh pets....We have one dog..a boxer...5 cats...and a rabbitt..and about 6 >> birdfeeders...So feeding time alone in the morning can take some time...I >> love to watch the birds....One of the cats is my moms because she used to >> live with us until she started having her health problems.... > >Hi Luanne, > >Your house sounds like mine. I have a dog, cocker spaniel, 3 cats, 3 horses >with one on the way, a gecko (Tommy's), and fish aquariums. I love them. >THey keep my sanity. > >Debbie (Tommy's Mom) >> > > > >--- Have a fun day! >--- debbiehenry@... >--- > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 ouch thats a lot. The most I had was when I lived in reno. My cat had kittens, 5 of them, and i found a stray cat out in the snow with 4 kittens. that brought the total to 11, pluse I had three other cats, That was my record. It was a madhouse!! lol Found homes for all the kittens but one, whom I still have. Ama Re: [ ] Cheryl >you guys are rookies..... there was a time when we had 23 cats.... >thankGod those days are gone... >jerry > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 BBNLU@... wrote: Goodmorning Cheryl Wow you are new to this....I have not been able to be on here since sometime in Nov when Ty went into the hosp...with shingles..We got home right before Thanksgiving so things were rather hectic here trying to get everything together at the last minute.Dinner is at our house and so had all the shopping to do etc...When Ty is in the hosp he is 2 hours away so I always stay....its is not worth all the driving back and forth and alot of the times Ty has to go thru so much that I would not want him there alone...He is in a great hosp...Childrens Hosp in Philadelphia...In fact while we were there the last time there was a press conference and big celebration and a live broadcast because the hosp had been named the #1 Childrens Hosp in the US...The article is in Child mag...I still haven't had the time to go and get it...When I am out I have a million other things on my mind...picking up meds..food Ty wants ...he is having trouble gaining the weight back..and my mom is in a Rehab full time now...so there is visiting to do there.... So you will have to tell me alittle about your self...Married...children...pets...where you live...etc...and how you are feeling.... I have been married 28 yrs to Bob..we were HS sweethearts....We both turned 50 this last year...OUCH...We have a 26 yr old daughter who lives in Chicago and a 22 yr old son who lives in Conn.(he has UC since he was 3)bu t he is doing well...and Then my Tyler...who is just 18....He is so happy to be back at school although yesterday hecame home early with a migraine...today he feels pretty good so hopefully he will make it thru the day... Oh pets....We have one dog..a boxer...5 cats...and a rabbitt..and about 6 birdfeeders...So feeding time alone in the morning can take some time...I love to watch the birds....One of the cats is my moms because she used to live with us until she started having her health problems.... Well it has been nice meeting you and hope to hear from you soon... Its so nice to meet so many people and know that when you need them you can get on here and pour heart out and there are so many that completely understand... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 Hi Cheryl, Just read your e-mail about Shakespeare etc...I also love to read..although I find very little time to do so...While I was in the hosp with Ty I was able to read "Beloved" my daughter gave it to me for Christmas ,in 99...now I am reading "Green Mile" by King...That is Tylers favorite author....I gave him that book for Christmas of 99...We gave him this yr....He just started a new class in school that is all Gothic reading....The are reading Edgar Poe ....Ty just started the class..missed the first 4 days...and when he got the book they are doing now he was like...piece of cake....It is the same book we gave him when he was a freshman for Christmas....He is planning on re-reading but this will not be a tough job for him...Finally a little break for him... My daughter and I like to read alot..and we tend to like the same books...a very sweet book is called the "Notebook" ....I can not think of the author...but he also wrote "message in a bottle"...I can believe I can't think of his name...so brain dead.... Well still need to get work done in the house before (Bob) the hubby comes home and we can eat and relax...Ty is sound asleep...for about 2 hours now...he is so wiped after a full day of school...He is having some RA problems...his ankles are killing him and the bottom of his feet really hurt...standing and walking is very painful...he is dealing with it now but this is how it started when he was a freshman and had to be home bound for 7 months....hope we can just get thru the rest of the yr...day at a time... Talk to you soon... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 Also hope you are feeling much much better... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 BBNLU@... wrote: Hi Cheryl You have sent me about 4 e-mails that have to be downloaded and when I do they come unreadable....I would love to know what you have been saying....I hope at least your new ones will not have to be downloaded....Sorry Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 Luanne... try going back to the archives... you should be able to read the ones you missed..... prayers for you and Ty.. Jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 Hi Cheryl: I remember you saying your sister has cancer. I pray she isn't in pain. Thank you for the prayers and I will send some up for you also. Take care and God bless. Genny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2001 Report Share Posted February 26, 2001 Babycolt98102690@... wrote: > Hi Cheryl: I remember you saying your sister has cancer. I pray she isn't > in pain. Thank you for the prayers and I will send some up for you also. > Take care and God bless. Genny > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 Thanks Cheryl. Us women go through alot, I guess thats why were the stronger sex. LOLOLOL just kidding. I wish the best for you. {{{hugs}}}. Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2001 Report Share Posted March 3, 2001 --- Cheryl <lrb@...> wrote: > Grady wrote: > > > Hi, My name is . I'm crying as I write this > > because of all the pain this disease is causing. I > am > > 33and the mother of 4 beautiful girls, 12, 10, 7 & > 2. > > I have just found out about this thing 2 weeks > ago. Well, > > I'm home and on acti-gall, and that's it! > > , > Hi, I'm Cheryl--42, mother of three beautiful > girls, 21, 19, 13, one great > son, 17, and a adorable granddaughter, 20months. I > have a subtype of AIH and > they are still testing. It took awhile for them to > even get this far (over two > years). What tests did they run? Did they do a > biopsy? Obviously, you have a > positive ANA--what about your Liver Function Tests > (LFTs)? How high? When are > they checking your LFTs again? How far away is your > big-city doctor? Is he/she > working with your local doctor? When are you > scheduled to do some follow up work > or consulting with your doctor? What type of > specialist are you seeing, > hepatologist or gastrointerologist? Where are you? > Now I asked you a bunch of > questions. Don't get overwhelmed with my questions. > No one here wants to scare > you. We would all love to help you. The more we > know, they more we can make > suggestions and offer you information. > I was diagnosed sometime between Thanksgiving > and Christmas. They briefly > put me on Actigal while they were diagnosing, but I > got sicker, so they haven't > put it back into the regiment yet. The doctor > started me on 40 mg of Prednisone > for about 6 weeks. He checked my LFTs every two > weeks. He added Imuran 100mg > after that and cut the Pred to 30 mg. My bilirubin > went down immediately, but > the others are more stubborn. They went down quite a > bit at first, but they have > stayed basically the same for the last four times. > I had a liver biopsy, endoscopy, and > colonoscopy. I will have an ERCP(a > scope down the esophogus which shoots dye into the > ducts) done in a few weeks. > But that is because I have many overlap symptoms > with Primary Sclerosing > Cholangitis (PSC). They already checked me for > Primary Biliary Cirrhosis (PBC). > They check for a positive anitmitochondria antibody > (AMA). I didn't have that. I > also had a big problem with diarrhea, hence the > colonoscopy. I do have colitis > as well. Anyway, I'm fine. Yeah, I have nasty side > effects from the drugs--but > it's better than having my liver deteriorate. Are > you tired? How's your itching? > Are you back at work? Don't get discouraged. You > found a great place for > support, information, and compassion. LOL, Hugs, > Prayers, Cheryl ID > > as far as tests go, my GP. did my last blood work because he & the nurse had to litterally suck the blood from my vein with a syringe, my bili-rubin was 7, & I only had 1 high test & I forget what it was. My liver function test was 58. my GP. said a hepatitis patient he knows was told by his doc that his were norm at 120, so my GP said mine were better & not to worry. My GP is a friend of mine and he is doing more w/me than my Hepatologist. That's all I see now & I see him about 1 a month for observation. My GP. sees me more often because he was so scared when I had the acute attack. I live in Columbia, Ky. I see a Hepatologist in Louisville, Ky. I am 110 miles from Lou. My General Practitioner is running more blood work in a week. While I was in the hosp. in Lou, I had the ENCP scope & the doc said he couldn't get past the common bile duct. I have a horrible rash that is clearing up, I itch like a cow on a tree, I have AWEFULL spider veins coming up daily. I don't swell as much now, but my face gets puffy at times when I wake up. Sometimes it goes away, sometimes not. I am out of work right now, but thinking about going back to school, The Hep. Doc. told me to file disability because I didn't have insurance where I worked. I don't think I can get any now, hehehe. I'm going to a dermatologist for my dry skin & the rash. They think the rash is from the steroids in the hospital. I do not go to a dietitian as of yet, I found some Christian based nutritionists & am changing my own diet. I don't eat meat, I eat 75% raw foods. For the past 2 days I haven't been able to eat for the nausea is returning. I drink 2-4quarts of water a day. So, does this all sound about right to you? If the nausea doesn't go away soo, I will go to my gen. prac. & get my labs done sooner. Thanks for all your help, __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 Thanks for the welcome back....again...It seems that I can't get back to being an active member but only post updates on Ty.... This last hospital stay was because of infarctions of the spleen...a very painful process...he had this back in the beginning of January...some small spots...ths time it is a very large spot....making it very difficult to breathe...and move...He is still in pain...taking pain pills...it will take awhile for the pain to go away...the orgingal pain from January is still there but bearable the new pain is still pretty bad...He is not back at school yet...not sure when he will be able to go back...He spends most of his time on the couch...even moving on there is painful....So we are hoping each day will get alittle better...and finally that he will be able to deal with it... We go back to his doctors on Tues...so we will see what they have to say... Thanks for caring ... Luanne Ty''s mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 Hi Cheryl, I do substitute and believe me we do appreciate all the stuff you do to prepare for us. Today I taught in a room where there were NO lesson plans. That was a hard day. Thank heavens they were good kids. I only sub in the 2nd and 3rd grades so it is a lot different from what you have every day, but believe me the ones of you that do prepare for us are much appreciated. Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2001 Report Share Posted March 19, 2001 mamacdoo@... wrote: Hi Cheryl, I do substitute and believe me we do appreciate all the stuff you do to prepare for us. Today I taught in a room where there were NO lesson plans. That was a hard day. Thank heavens they were good kids. I only sub in the 2nd and 3rd grades so it is a lot different from what you have every day, but believe me the ones of you that do prepare for us are much appreciated. Rosemary Rosemary, I can't believe a teacher could get away with that. My principal would have a fit. We have to have an emergency sub packet in case we keel over or something. Which reminds me that mine is in disarray and I have to bring it in with me at my final evaluation conference. I used to sub too, so I know what it's like. I wouldn't do that to anyone or to my kids. I get irritated when I leave plans and the sub doesn't follow them. I now tell my kids what they are expected to do. I hold the students responsible for getting their work done. It works pretty well. Hope all is well with you. LOL Cheryl ID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 Goodmorning there... So glad that you didn't have any problems with your ERCP....Ty only had alittle shoulder pain after....that was 2 years ago....Sorry that it is PSC...but I guess I will be seeing you on the PSC board now....We are there too....Ty has both AIH and PSC...it is a great group.... It seems that you have a very open doctor....that is great.... I agree with you about Ty and all the attention with this situation with school...I am trying my very best to get this straightened out with out making it worse for him..... Thanks for your concern....Hope to be seeing you on the PSC group... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
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