Guest guest Report post Posted April 13, 2002 Hi Patty... Sorry it has taken so long to get back to you...and I do appreciate your email... I thought that almost everyone here took imuran...and pred...I guess I missed that there are a few..that take urso..or actigal...I am on another support group for PSC and of course everyone there takes Urso or actigal...sorry that I missed the few here... I hate saying something that would be wrong...or confuse people... So being that you do have the bile duct problem are they saying that you also have PSC...Ty has both PSC and AIH....along with his other autoimmune diseases.... Well again I hope I didn't confuse people... I wish I knew of others here who take it ...so far I know of you and Randy Summitt...but he says he takes it for PSC... oh well ....that is why I am not a doctor...way too confusing.... Talk soon Luanne Ty's mom Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 13, 2002 Luanne, No I do not have PSC. only AIH. I developed technical difficulties post transplant, the heaptic artery closed up during the surgery and my bile ducts disintegrated (actually the bile ducts in my new liver, but they are the only ones I have now). The bile pooled in my liver because it had no place to go. Talk about high bilirubin, mine was ap to 10 and I was literally ready to crawl out of my skin. I would have if I had a zipper. They were actually lookinbg to retransplant me (this was 5 months post transplant). Instead they placed drainage tubes in where my bile ducts were and supported the old ones and created new ones. Similar to the process of a stud in the ear to create a new hole for peirced earings. The only problem is that liver tissue does not want to create new ducts so it took three years of monthly balloon dilitations (similar to heart angioplasty) to get the ducts repaired. I have been tube free now since last July. The actigall is to make sure my bile stays healthy and unclogged. My understanding is Actigall is used with bile problems in general. Expensive stuff but very bio-friendly. So I took it for my duct problems, I honestly cannot remember the first time I took it, whether it was pre-transplant or post- Hope this helps. Patty -----Original Message-----From: BBNLU@... [mailto:BBNLU@...]Sent: Saturday, April 13, 2002 9:49 AM Subject: Re: [ ] PattyHi Patty... Sorry it has taken so long to get back to you...and I do appreciate your email... I thought that almost everyone here took imuran...and pred...I guess I missed that there are a few..that take urso..or actigal...I am on another support group for PSC and of course everyone there takes Urso or actigal...sorry that I missed the few here... I hate saying something that would be wrong...or confuse people... So being that you do have the bile duct problem are they saying that you also have PSC...Ty has both PSC and AIH....along with his other autoimmune diseases.... Well again I hope I didn't confuse people... I wish I knew of others here who take it ...so far I know of you and Randy Summitt...but he says he takes it for PSC... oh well ....that is why I am not a doctor...way too confusing.... Talk soon Luanne Ty's mom Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 13, 2002 Hi there, I am newly diagnosed with AIH and I think I may possibly have PSC as well, the doctor analyizing the biopsy thought I might possibly have PSC and recommended having imaging studies done on my intraheptic biliary tree, so I think the doctor is giving me Ursodiol as a precaution and also so it clears the bile out. I have terrible itching. Ruth, dx, AIH, 3/03 > Hi Patty... > > Sorry it has taken so long to get back to you...and I do appreciate your > email... > > I thought that almost everyone here took imuran...and pred...I guess I missed > that there are a few..that take urso..or actigal...I am on another support > group for PSC and of course everyone there takes Urso or actigal...sorry > that I missed the few here... > I hate saying something that would be wrong...or confuse people... > > So being that you do have the bile duct problem are they saying that you also > have PSC...Ty has both PSC and AIH....along with his other autoimmune > diseases.... > > Well again I hope I didn't confuse people... > I wish I knew of others here who take it ...so far I know of you and Randy > Summitt...but he says he takes it for PSC... > oh well ....that is why I am not a doctor...way too confusing.... > > Talk soon > Luanne Ty's mom Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 13, 2002 Reminds me of my husband and obstetrician talking about the Super Bowl as I gave birth! I do remember who won the Super Bowl that year and that was a long time ago! Carol J. wrote: > He's nice too. Of course I've only seen him when I'm face down on the table > or afterwards when I'm still happy on versed & morphine but even then I can > tell a good one. > Even my husband thinks he is nice, they talked about skiing between my > questions about my bone tissue... men!!! (sorry to those of you of the male > persuasion) > > Patty > > Re: [ ] RE: & Tony > > > > > > Thanks for thinking about me. I am still here. I have been too > > depressed > > > to > > > write anything positive so have been lurking the days I have opened > posts. > > > I was > > > out of town for a few days due to a death in my family. That only > > > complicated > > > matters. Unfortunately, I had to deal with some members of my family > with > > > whom I > > > have been estranged since my Mother's death. Just that stress made me > > > physically > > > ill. I had been having a difficult time getting over the complications > I > > > had > > > started having in February. Then 2 weeks ago, I finally had a day that > I > > > had > > > planned to make myself get out and visit some elderly homebound members > of > > > our > > > church (thinking it would help my state of mind to help someone else) > and > > I > > > had > > > been gone for 2 hours when I had a call on my cell phone. It was the > > > monitoring > > > station for our security system telling me that they had received a > fire > > > alarm > > > signal for our home and had notified the fire department! All the way > > home > > > I > > > kept thinking it must be a false alarm. I drove up right behind the > fire > > > trucks. My husband was right behind me. When they opened the door and > > > black > > > smoke came out I realized that this was REAL. Then came the true > > > depression. I > > > had caused the fire. I had tried to be efficient and start dinner > before > > > leaving > > > that morning. I had gone off and left everything cooking. I now > > realize > > > I am > > > no longer capable of multi-tasking. Thank goodness we had an alarm > system > > > with a > > > smoke detector or we would have come home to ashes. It has been bad > > enough > > > dealing with smoke damage. So, that is where I have been, trying to > climb > > > out of > > > my own mess. > > > > > > Then, when I read the posts from Lydia, Patty, and Tony and so many > others > > > battling serious problems, I try to keep things in the proper > perspective. > > > > > > Take care and God bless. > > > > > > Carol > > > > > > MKANTZLE@... wrote: > > > > > > > Hey guys, > > > > > > > > Has anyone heard from Carol lately. Just wondering if she's OK. I > > don't > > > > remember if she was going on vacation or not? Carol if you're out > there > > > talk > > > > to us. > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 13, 2002 Yes, I do. However, my husband thinks he has cooked if he scrambles eggs or opens a can. LOL. You are blessed with a good man, also. Carol J. wrote: Carol, consider yourself fortunate. I have a friend who routinely buys her own presents from her husband, wraps them and leaves them out for him to give to her... How romantic. LOL. Of course I can't complain, tonight my husband cooked me a lobster dinner because I've had such a rough week. He is really sweet.PattyPatty -----Original Message----- From: Philip Cobb [mailto:pcmcobb@...] Sent: Friday, April 12, 2002 10:56 PM Subject: Re: [ ] Harper True, true. And I have purchased many of the aforementioned items for myself. The truth of the matter is that I hate to shop. If I can't order it out of a catalog (which I probably could) then I usually resort to calling and making an appointment with a personal shopper. But, you are right. I could surely go purchase those items for myself. However, my husband is always asking for ideas for a gift for me, so I was disappointed when he used that excuse for not getting me what I asked for. So, he gets one more chance before I go spend the money myself! He really ought to know better. Several years ago, he waited until the last minute and had not bought me a gift for Mother's Day. He had to leave for a trip that included his being gone over Mother's Day. He apologized for not having a gift and told me to just go and get what I wanted. Without going into details, he said he would not make that mistake again! Truth be known, he gets great pleasure out of spoiling me. I hate to deny him that! Carol flatcat9@... wrote: In a message dated 4/12/02 4:53:45 PM Pacific Daylight Time, writes: I had wanted a Palm Pilot for Christmas. Didn't get one. Maybe I'll push for one for Mother's Day! Along with a new computer! Supposedly that is why I did not get one for Christmas. My laptop is nearly 3 years old and my husband said it would not be compatible with any of the Pilots. So I guess I'll just solve both problems! Glad to know that Randy is doing so well now. Take care. Carol Hmmm. Now, best as I can remember, you are a grown woman who has had a successful career. Nowadays women can buy their own diamonds -- or perfume -- or chocolates -- or flowers -- or even, should they be some perversely inclined, their own fur coats -- if they want them and can afford them, rather than waiting to be given them. Can you buy your own computer and PalmPilot? Harper Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 14, 2002 Luanne, I've been on urso since I was dx. I'm not sure why. I haven't been told I have PSC. I know there was mention of my bile ducts in my biopsy. Maybe it's a preventitive. Guess I should ask. How's Ty? I think of him every time I see a Jeep. :?) Debbie/FL > Hi Patty... > > Sorry it has taken so long to get back to you...and I do appreciate your > email... > > I thought that almost everyone here took imuran...and pred...I guess I missed > that there are a few..that take urso..or actigal...I am on another support > group for PSC and of course everyone there takes Urso or actigal...sorry > that I missed the few here... > I hate saying something that would be wrong...or confuse people... > > So being that you do have the bile duct problem are they saying that you also > have PSC...Ty has both PSC and AIH....along with his other autoimmune > diseases.... > > Well again I hope I didn't confuse people... > I wish I knew of others here who take it ...so far I know of you and Randy > Summitt...but he says he takes it for PSC... > oh well ....that is why I am not a doctor...way too confusing.... > > Talk soon > Luanne Ty's mom Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 15, 2002 Hey Patty.... Now I understand....I was really confused there for a minute or two... So do they feel that you will always have to take actigal...and what dose do you take.... Thanks for explaining why you take it... Luanne Ty's mom Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 15, 2002 In a message dated 4/15/02 2:35:04 PM Pacific Daylight Time, writes: .. I miss your randy comments. And I don't mean comments to Randy LOL. We haven't had any wild conversations in a while around here. Patty Patty, surely you can supply us with some lower-case randy comments. Without getting kicked off the line. However, I do miss Bert! Harper Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 15, 2002 Ahh Harper ...do they have to be lower case.... If I have come close to getting kicked off I was not aware.. I think Joanne has a sense of humor to.. Bert was the biggest culprit with her whiz popper jokes. Miss you Bert, Patty -----Original Message-----From: flatcat9@... [mailto:flatcat9@...]Sent: Monday, April 15, 2002 6:05 PM Subject: Re: [ ] PattyIn a message dated 4/15/02 2:35:04 PM Pacific Daylight Time, writes: .. I miss your randy comments. And I don't mean comments to Randy LOL. We haven't had any wild conversations in a while around here. Patty Patty, surely you can supply us with some lower-case randy comments. Without getting kicked off the line. However, I do miss Bert! Harper Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 15, 2002 Luanne, I take 300mg Actigall, 3X per day, I don't know for how long. Patty -----Original Message-----From: BBNLU@... [mailto:BBNLU@...]Sent: Monday, April 15, 2002 1:22 PM Subject: Re: [ ] PattyHey Patty.... Now I understand....I was really confused there for a minute or two... So do they feel that you will always have to take actigal...and what dose do you take.... Thanks for explaining why you take it... Luanne Ty's mom Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 29, 2002 Hi Patty: I wrote you an email when I found out you were having problems, did you get it? I didn't receive a reply so I didn't know if you got it or didn't feel like writting. I had to ask for your new address since I haven't been able to get back in the group for a while. I hope they found out for sure what the problem was and have fixed it. If you feel up to it please write. Take care, Genny Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 3, 2002 Best Wishes to you Patty. I know you will be glad when this is all over. Take care and God Bless. Genny Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 27, 2002 Karl: I was just thinking about Patty the other day as I have to go back to UofM to be "queued up for transplant" as my gastro puts it after the last biopsy. My former doctor there was Dr. Rajender Reddy (who has moved on to Pittsburgh), so now I will see Dr. Enrique Molina. Probably won't be ready for Dr. s Tzakis for another 24-36 months. I hope never!! But, at least I know that I will be in excellent hands. I was specifically remembering Patty's inspiring e-mail re the "new hardware" they came up with to fix something (was it the portal vein?), and how she also would lie on the floor between classes when she was teaching at FAU. What a strong lady. I'm so sorry to hear that she had to be rehospitalized. Please give her my best, and, of course, she will be remembered in my prayers. Love - gina Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 27, 2002 Dear Karl, Well, I'm getting this one written before I send it ! Thanks for letting us know about Patty, I've been concerned about her. Is she in for her back? Let us know how's she's doing and give her my best. Amy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 27, 2002 Karl, Give Patty our love. Hope she has a speedy recovery. I've been thinking about her. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 27, 2002 Dear , I was particularly interested in your reference to Dr. Reddy. I currently am having a relapse after 7 years of remission. I didn't have a hepatologist, but Luanne (Ty's mom) had mentioned Dr. Reddy and he was also recommended by people in Boston. He is now in Philadelphia, not Pittsburgh. I couldn't get an appointment until September 23, so I am just here waiting nervously. Please tell me what he's like and if he's easy to talk to? I've had some doctors previously that intimidated me. Thanks for any information you can supply. Sharon >From: gina413@... >Reply- > >Subject: Re: [ ] Patty >Date: Tue, 27 Aug 2002 13:33:57 EDT > >Karl: I was just thinking about Patty the other day as I have to go back >to >UofM to be " queued up for transplant " as my gastro puts it after the last >biopsy. My former doctor there was Dr. Rajender Reddy (who has moved on to >Pittsburgh), so now I will see Dr. Enrique Molina. Probably won't be ready >for Dr. s Tzakis for another 24-36 months. I hope never!! But, at >least I know that I will be in excellent hands. > >I was specifically remembering Patty's inspiring e-mail re the " new >hardware " >they came up with to fix something (was it the portal vein?), and how she >also would lie on the floor between classes when she was teaching at FAU. >What a strong lady. I'm so sorry to hear that she had to be >rehospitalized. > >Please give her my best, and, of course, she will be remembered in my >prayers. > >Love - >gina _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 27, 2002 karl, let patty know i am thinking of her and sending my prayers.... i hope all is well with her in the near future.... thank you for letting us all know..... courtney ===== Mother diagnosed with AIH August 2, 2002 __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 27, 2002 Karl, Thank you for letting us know. Please give Patty my best and let her know am keeping her in my thoughts and prayers. marianne > > Hi there - this is Patty 's husband Karl. I just wanted to let you > know, that Patty has been absent from this List for a while due to > hospitalization. She sends her love to you all and hopes to be back here > very soon > > Karl Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 28, 2002 Hello Karl ! Just a few words to let you know that You and Patty are on my prayers and may she have a speedy recovery from her treatment. Please send her all my love. God Bless ! Tony Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 28, 2002 Karl, So sorry to hear about the lymphoma. Tell her to go sed Ya Ya Sisterhood they have great hats in this film, maybe she can get some inspiration. I know that you are worried and I want you to know that she is in my prayers. She is such a strong woman. I'm sure she will beat this. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 28, 2002 I have a friend with that and is now in remission. When she lost her hair, she just wore a scarf. The hair loss wasnt long. Shireen >From: " J. " <scott_p@...> >Reply- >< > >Subject: [ ] Patty >Date: Wed, 28 Aug 2002 16:40:25 -0400 > > >Thank you all for you kind responses and kind wishes - it sure helps! > >Just to let you know, Patty was diagnosed with non-Hopkins Lymphoma and >began Chemo Therapy and Radiation Therapy about 2 weeks ago. It's the Chemo >that knocked her down and put her in the hospital. However, she is doing >fine and I hope to bring her home any day now. She is mostly worried about >her hair and I am mostly worried about her health. > >Karl > > _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 28, 2002 Karl, can you tell me about the lymphoma? The last time I saw my GI, she said that my last CT Scan showed an enlarged node. When I asked her what it could be, she said Lymphoma. She said it was not "outstanding" but that it was just noted. In October, I will have a followup CT Scan to see what it looks like. Best of luck to Patty with the Chemo. Luckily, if her hair DOES fall out, it is winter, and there are LOTS of cute head coverings and no one would even know her hair is gone. My Mom was fortunate that her hair came out in the winter and all of the cute head coverings were darling! Debby [ ] Patty Thank you all for you kind responses and kind wishes - it sure helps!Just to let you know, Patty was diagnosed with non-Hopkins Lymphoma andbegan Chemo Therapy and Radiation Therapy about 2 weeks ago. It's the Chemothat knocked her down and put her in the hospital. However, she is doingfine and I hope to bring her home any day now. She is mostly worried abouther hair and I am mostly worried about her health.Karl Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 28, 2002 Karl, Please give Patty my love. I would love to hear from her as soon as she's able. In the mean time, I'm just up the road in West Palm if there's anything I can do. Hugs and prayers, Debbie/FL > > Hi there - this is Patty 's husband Karl. I just wanted to let you > know, that Patty has been absent from this List for a while due to > hospitalization. She sends her love to you all and hopes to be back here > very soon > > Karl Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 29, 2002 Karl, Thanks for keeping us posted about Patty. I am keeping her in my prayers. Let her know about the hair...when mom lost hers from her chemo treatment (also for lymphoma) she wore scarves and turbans and we did get her a wig...she looked fab! and she liked not having to spend more than a minute on her hair. Best of all, when her hair came back in, she had naturally curly hair, for the first time in her life. Some of the curl is gone, but her hair still looks beautiful. nne > > Thank you all for you kind responses and kind wishes - it sure helps! > > Just to let you know, Patty was diagnosed with non-Hopkins Lymphoma and > began Chemo Therapy and Radiation Therapy about 2 weeks ago. It's the Chemo > that knocked her down and put her in the hospital. However, she is doing > fine and I hope to bring her home any day now. She is mostly worried about > her hair and I am mostly worried about her health. > > Karl Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 29, 2002 nne, my mom's hair did exactly the same thing! She looked stunning with her turbans and hats! Actually, I even thought of ordering some just for me! They are truly magnificant. Debby [ ] Re: Patty Karl,Thanks for keeping us posted about Patty. I am keeping her in myprayers. Let her know about the hair...when mom lost hers from herchemo treatment (also for lymphoma) she wore scarves and turbans andwe did get her a wig...she looked fab! and she liked not having tospend more than a minute on her hair. Best of all, when her hair cameback in, she had naturally curly hair, for the first time in her life.Some of the curl is gone, but her hair still looks beautiful.nne> > Thank you all for you kind responses and kind wishes - it sure helps!> > Just to let you know, Patty was diagnosed with non-Hopkins Lymphoma and> began Chemo Therapy and Radiation Therapy about 2 weeks ago. It'sthe Chemo> that knocked her down and put her in the hospital. However, she is doing> fine and I hope to bring her home any day now. She is mostly worriedabout> her hair and I am mostly worried about her health.> > Karl Quote Share this post Link to post Share on other sites
