Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 Well, it's official. My husband, Ken, has PSC. They did the endo yesterday The doc showed me the x-rays. You try and prepare yourself for it, but you just can't. They cut him during the endo, so they kept him overnight in the hospital for observation. They were supposed to start him on Urso while there. Hopefully, I'll be able to pick him up first thing this morning. I want us (we have a 12 yr old daughter) to keep a positive attitude about it, but it's hard. For those of you with PSC, what kind of things would you like to hear from your spouse or significant other? What are you hoping to hear? I know how hard this is for me and I can only imagine what goes through the heads of those living with PSC. Even though we are very close and what happens to him happens to me, I feel my role as supporter is a lot easier than supportee.... Jackie (land) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 In a message dated 10/2/99 7:18:15 AM Eastern Daylight Time, JKosiorek@... writes: << Jackie >> Dear Jackie: My name is Liz and my husband, Jim, was diagnosed recently with PSC, so I know what you are going through right now. It took about a year for the doctors to come up with this diagnosis. I'm a nurse, and doing my own research helped me prepare for what I more or less knew that they were going to tell us, nevertheless, it is devastating to finally hear it. At the beginning, I had a hard time accepting that he could have anything at all, since he is (thank God) symptom free, strong, fit and healthy. It is difficult to stay positive when you hear all the problems that may be associated with this disease, and we had quite a few dark days when we felt so uncertain of what the future held for us. We have two boys, 11 and 18, and both of them are somewhat aware of the fact that thier dad has a problem with his liver that may cause alot of trouble down the road. After the initial shock wore off a little, we decided to try to stay as positive as we can. We felt if we made every effort to be informed about the disease, do what he can to stay in the best condition possible (eat a low fat, balanced diet, exercise, avoid alcohol and other liver toxins), get the best medical care, take the prescribed meds and in general stay positive, we would be doing all we can to keep him in the shape he is now. So far, so good. I know however, it must be so hard to stay positive when you are feeling ill, so I don't know how we will handle it when and if that time comes. As the spouse, I try my best to give him all the support he needs, when he needs it. We know that this disease is lurking in the background of our lives, but beyond taking his meds, there are no other daily reminders since he feels so well right now. In the moments when we speak of the future and admit our fears about what it holds, we support each other just by knowing that whatever comes, we will try to get through it as a couple, as we have any other crisis we have weathered in the last twenty years. Since we have been together since we were teens, had a baby early and have worked hard all through our twenties and thirties, and probably will through our forties (we are both 42), we always figured we would do all the things we never got a chance to when we retire. While I still hope this is true, we try now to enjoy ourselves a little more, (for example this summer we took an extra week down the Jersey shore,) as we really don't know what will be with his health in the years to come. But, when you think of it, does anybody really know what is ahead? As I tell him all the time, you can get hit with a bus before you get really sick from this disease, and then all that worrying about the future will be for nothing. I think he steers very clear of buses these days. I hope you and your husband will be able to come to terms with the uncertainty that this disease imposes on all of our lives. This group will be invaluable for you, as you will learn alot from the people who post here, who both have the disease or love someone who has it. Please feel free to e-mail me (Rnurse@...) personally or via the group for any support you may need. Hope you and your husband will have a good weekend. Is he having symptoms now? Take care. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 Hi! In my case my hubby is very concerned about me and asks me every morning when we wake up how I feel. He calls me at least 4 x a day checking on my health. But because I am getting so much worse, he is driving me mad!! I was a very independent woman BPSC (before PSC) and now I cannot drive, do anything without him and my mom constantly saying " don't do that " , " you cannot do this, " etc. I love them dearly, but I am still alive and I guess I am too stubborn. I do like both of them asking about me and asking what I want to eat -- not eat, etc. Anyway, I have said since the disease has progressed that it (the disease) is much, much harder on our family and friends than it is on us. I mean this sincerely. My family and friends keep saying " I feel so helpless " , " can't I help with your pain at all? " , etc. Just treat him like a " normal " person for as long as you can and love him. Hugs, Biddy Re: PSC Confirmed >Well, it's official. My husband, Ken, has PSC. They did the endo yesterday > The doc showed me the x-rays. You try and prepare yourself for it, but you >just can't. They cut him during the endo, so they kept him overnight in the >hospital for observation. They were supposed to start him on Urso while >there. Hopefully, I'll be able to pick him up first thing this morning. > >I want us (we have a 12 yr old daughter) to keep a positive attitude about >it, but it's hard. For those of you with PSC, what kind of things would you >like to hear from your spouse or significant other? What are you hoping to >hear? I know how hard this is for me and I can only imagine what goes >through the heads of those living with PSC. Even though we are very close >and what happens to him happens to me, I feel my role as supporter is a lot >easier than supportee.... > >Jackie >(land) > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/805 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 Hi Liz! You answered Jackie's question perfect! I used to be able to do that without a dissertation, but the " brain fog " is getting so much worse. Well, if I have to have this disease I can blame ANYTHING I want on this " devil " disease! LOL Thank you for your post to Liz! Now she will know what to expect. Hugs, Biddy Re: PSC Confirmed >In a message dated 10/2/99 7:18:15 AM Eastern Daylight Time, >JKosiorek@... writes: > ><< Jackie >> >Dear Jackie: My name is Liz and my husband, Jim, was diagnosed recently with >PSC, so I know what you are going through right now. It took about a year >for the doctors to come up with this diagnosis. I'm a nurse, and doing my >own research helped me prepare for what I more or less knew that they were >going to tell us, nevertheless, it is devastating to finally hear it. At the >beginning, I had a hard time accepting that he could have anything at all, >since he is (thank God) symptom free, strong, fit and healthy. It is >difficult to stay positive when you hear all the problems that may be >associated with this disease, and we had quite a few dark days when we felt >so uncertain of what the future held for us. We have two boys, 11 and 18, >and both of them are somewhat aware of the fact that thier dad has a problem >with his liver that may cause alot of trouble down the road. After the >initial shock wore off a little, we decided to try to stay as positive as we >can. We felt if we made every effort to be informed about the disease, do >what he can to stay in the best condition possible (eat a low fat, balanced >diet, exercise, avoid alcohol and other liver toxins), get the best medical >care, take the prescribed meds and in general stay positive, we would be >doing all we can to keep him in the shape he is now. So far, so good. I >know however, it must be so hard to stay positive when you are feeling ill, >so I don't know how we will handle it when and if that time comes. As the >spouse, I try my best to give him all the support he needs, when he needs it. > We know that this disease is lurking in the background of our lives, but >beyond taking his meds, there are no other daily reminders since he feels so >well right now. In the moments when we speak of the future and admit our >fears about what it holds, we support each other just by knowing that >whatever comes, we will try to get through it as a couple, as we have any >other crisis we have weathered in the last twenty years. Since we have been >together since we were teens, had a baby early and have worked hard all >through our twenties and thirties, and probably will through our forties (we >are both 42), we always figured we would do all the things we never got a >chance to when we retire. While I still hope this is true, we try now to >enjoy ourselves a little more, (for example this summer we took an extra week >down the Jersey shore,) as we really don't know what will be with his health >in the years to come. But, when you think of it, does anybody really know >what is ahead? As I tell him all the time, you can get hit with a bus >before you get really sick from this disease, and then all that worrying >about the future will be for nothing. I think he steers very clear of buses >these days. I hope you and your husband will be able to come to terms with >the uncertainty that this disease imposes on all of our lives. This group >will be invaluable for you, as you will learn alot from the people who post >here, who both have the disease or love someone who has it. Please feel free >to e-mail me (Rnurse@...) personally or via the group for any support you >may need. Hope you and your husband will have a good weekend. Is he having >symptoms now? Take care. Liz > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/805 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 Jackie, I have not kept up with all the postings so I'm not sure how sick your husband is. It's obviously not good to find you have a disease that has no " cure " other than transplant. What I can tell you is that for some people this is a very slow-progressing disease. My wife has had it for 10 + years. Individual situations vary of course. Good luck, Roy T. Re: PSC Confirmed > Well, it's official. My husband, Ken, has PSC. They did the endo yesterday > The doc showed me the x-rays. You try and prepare yourself for it, but you > just can't. They cut him during the endo, so they kept him overnight in the > hospital for observation. They were supposed to start him on Urso while > there. Hopefully, I'll be able to pick him up first thing this morning. > > I want us (we have a 12 yr old daughter) to keep a positive attitude about > it, but it's hard. For those of you with PSC, what kind of things would you > like to hear from your spouse or significant other? What are you hoping to > hear? I know how hard this is for me and I can only imagine what goes > through the heads of those living with PSC. Even though we are very close > and what happens to him happens to me, I feel my role as supporter is a lot > easier than supportee.... > > Jackie > (land) > > ------------------------------------------------------------------------ > MyPoints-Free Rewards When You're Online. > Start with up to 150 Points for joining! > http://clickhere./click/805 > > > eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 Jackie, I am also a wife of a PSCer, my husband Phil was diagnosed with PSC last December. He had 4 reoocurring bouts of cholangitis withing the 1st 4 monts and had his gallbladder out during that time. He has been infection free since March 23rd but the liver doctor is working toward putting him on the transplant list. He has had UC for 30 years and they figure PSC for at least 10. I can certainly know what you are going through as a spouse and you do feel much of what they are feeling (I in particular and dealing with brain fog). Nice to have you in the group. Peg - wife of Phil (56) UC 30 yrs, dx PSC 12/98, working toward tx listing, Santa Clarita, CA JKosiorek@... wrote: > Well, it's official. My husband, Ken, has PSC. They did the endo yesterday > The doc showed me the x-rays. You try and prepare yourself for it, but you > just can't. They cut him during the endo, so they kept him overnight in the > hospital for observation. They were supposed to start him on Urso while > there. Hopefully, I'll be able to pick him up first thing this morning. > > I want us (we have a 12 yr old daughter) to keep a positive attitude about > it, but it's hard. For those of you with PSC, what kind of things would you > like to hear from your spouse or significant other? What are you hoping to > hear? I know how hard this is for me and I can only imagine what goes > through the heads of those living with PSC. Even though we are very close > and what happens to him happens to me, I feel my role as supporter is a lot > easier than supportee.... > > Jackie > (land) > > ------------------------------------------------------------------------ > MyPoints-Free Rewards When You're Online. > Start with up to 150 Points for joining! > http://clickhere./click/805 > > eGroups.com home: /group/ > - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 > Just treat him like a " normal " person for as long as you can and love > him. Thanks Biddy! I'll do my best. We are high school sweethearts and even though I just turned 30 and he turned 31, we have been together for a long time. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 In a message dated 10/2/99 8:00:32 AM Eastern Daylight Time, Rnurse987@... writes: > Is he having > symptoms now? Take care. Liz Hi Liz: Well, before diagnosis he had one episode that took us to the ER. He had upper right quad discomfort. While in the ER, they took blood and his ALT and AST were elevated. They kept him in the hospital for a few days for observation and his levels returned to w/in normal range. He also had an endo while there which didn't convince the docs he had PSC. They checked his blood again in a few weeks and his ANA was the only thing that came back as positive. They wanted to do a liver biopsy to check for Autoimmune Hep. The biopsy showed no inflammation, so they wanted to do another endo. This one showed signs of PSC. So, I guess basically he has not really been symptomatic. He was still playing soccer once a week and was helping out with our daughter's travel team. He has been feeling fine. Unfortunately, he had to stay in the hospital again tonight. After eating a liquid breakfast, he was suffering from abdominal pain. It turned out he had an obstruction. There was air in the bowel that wasn't allowing anything to pass. They put a ng tube in to pull out what was there and give his intestine a break. Hopefully, his bowels will come off " strike " and cooperate tomorrow so I can bring him home. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 Jackie - hope things clear up soon so your husband can go home. Having an NG tube is no fun! Take care of yourself too! Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 Jackie, I was diagnosed in June of this year. I need most from my husband and family to understand that I take out my feelings most on them because I love them the most, and to please be patient with me. My husband and I also started out very young, I was 16 , and are very close and have had a great marriage. But this has really been hard on both of us. I have gone through many stages from shock to anger. The hardest part for me is feeling so awful all the time and not being able to do everything I used to. Just be there for him even when you don't feel you can't. I know that men and women handle things differently, but these are the things that are important to me. Vicki dx PSC 6/99 38 Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 1999 Report Share Posted October 2, 1999 Hi! You would think by now I would know all the " jargon " about PSC. What is a NG tube? Hugs, Biddy Re: PSC Confirmed >Jackie - hope things clear up soon so your husband can go home. Having an NG >tube is no fun! Take care of yourself too! Liz > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/805 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Biddy, an NG tube is inserted through the nose and goes down to the stomach. Attached to low suction, it suctions out the stomach contents (bile, etc), and is used for a variety of reasons. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Biddy, sorry the NG stands for Nasogastric. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Biddy, another NG tube fact, (sorry, I am a little scattered today) it can also be used to administer meds or tube feedings. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 What is an NG tube?? Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Hi. An NG tube is a NasoGastric tube (or something like that). It is inserted down the nose into the stomach and is used to get fluids / nutrition into someone who can't eat. My son was fed by this manner for the 1st two weeks of his life (he was a preemie). Hope this info helps. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Hi Liz! I just don't know where I am 99% of the time. I had the NG tube when I went to the ER for hemorrhaging. I had it for 8-1/2 hours and blood kept coming out of it. They finally took it out and 20 minutes later, I hemorrhaged even more. It wasn't pleasant trying to swallow the tube especially since I have extreme dry mouth and throat all of the time -- I always keep ice with me. Someone told me the next time to have them give me ice water to swallow while I am trying to get the thing down. They were very kind to me, they kept me sedated (lightly) most of the time! I just didn't know what it was called and of course, no one told me. Guess I should have had enough sense to ask, but I didn't. Thanks for your reply!! I depend on all of you all of the time because either I don't know or I don't think what to ask. You all post this and that and I am out in the cold. Thank God you all keep me up-to-date. Am going to the doc (here) Tuesday and hope I can think of enough to ask him. Hugs, Biddy Re: PSC Confirmed >Biddy, an NG tube is inserted through the nose and goes down to the stomach. >Attached to low suction, it suctions out the stomach contents (bile, etc), >and is used for a variety of reasons. Liz > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/805 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 1999 Report Share Posted October 3, 1999 Hi Liz! Now that is a pleasant thought. Please do not tell me that this is the norm with this " devil " disease. Hugs, Biddy THANKS!!! Re: PSC Confirmed >Biddy, another NG tube fact, (sorry, I am a little scattered today) it can >also be used to administer meds or tube feedings. Liz > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/805 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Biddy, it's unfortunate but true that many times the patient is not given a thorough explanation of what is being done to them when hospitalized. And it is sometimes intimitdating for the patient, because they don't want to be seen as difficult if they demand a full explanation. I always tried to give the patient as much information as they needed before doing anything to them, however, because of the way hospitals are staffed (where I was working at least), nurse wise, it is very hard to spend as much time talking with and educating the patients because of time restraints, thereby reducing bedside nursing (in my experience) to a very task oriented job. I wasn't happy with this set up, and went into home care after that, where I had more time to spend answering patient's questions, etc. Anyway, any time I can be of help, just let me know! Have a good day. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Biddy, it's unfortunate but true that many times the patient is not given a thorough explanation of what is being done to them when hospitalized. And it is sometimes intimitdating for the patient, because they don't want to be seen as difficult if they demand a full explanation. I always tried to give the patient as much information as they needed before doing anything to them, however, because of the way hospitals are staffed (where I was working at least), nurse wise, it is very hard to spend as much time talking with and educating the patients because of time restraints, thereby reducing bedside nursing (in my experience) to a very task oriented job. I wasn't happy with this set up, and went into home care after that, where I had more time to spend answering patient's questions, etc. Anyway, any time I can be of help, just let me know! Have a good day. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Biddy, it's unfortunate but true that many times the patient is not given a thorough explanation of what is being done to them when hospitalized. And it is sometimes intimitdating for the patient, because they don't want to be seen as difficult if they demand a full explanation. I always tried to give the patient as much information as they needed before doing anything to them, however, because of the way hospitals are staffed (where I was working at least), nurse wise, it is very hard to spend as much time talking with and educating the patients because of time restraints, thereby reducing bedside nursing (in my experience) to a very task oriented job. I wasn't happy with this set up, and went into home care after that, where I had more time to spend answering patient's questions, etc. Anyway, any time I can be of help, just let me know! Have a good day. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 JKosiorek@... wrote: > I want us (we have a 12 yr old daughter) to keep a positive attitude about > it, but it's hard. For those of you with PSC, what kind of things would you > like to hear from your spouse or significant other? Well, for me, I want other people to be willing to make allowances for my disease, and to understand when I can't keep up as well due to fatigue etc., but I don't want the main thing that they think of about me to be " he's sick " . I want them to treat me, and think about me as they did before, except in cases where I specifically need allowances. Of course so far I have only had low-level symptoms,so things may change if I get worse... athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 JKosiorek@... wrote: > I want us (we have a 12 yr old daughter) to keep a positive attitude about > it, but it's hard. For those of you with PSC, what kind of things would you > like to hear from your spouse or significant other? Well, for me, I want other people to be willing to make allowances for my disease, and to understand when I can't keep up as well due to fatigue etc., but I don't want the main thing that they think of about me to be " he's sick " . I want them to treat me, and think about me as they did before, except in cases where I specifically need allowances. Of course so far I have only had low-level symptoms,so things may change if I get worse... athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 JKosiorek@... wrote: > I want us (we have a 12 yr old daughter) to keep a positive attitude about > it, but it's hard. For those of you with PSC, what kind of things would you > like to hear from your spouse or significant other? Well, for me, I want other people to be willing to make allowances for my disease, and to understand when I can't keep up as well due to fatigue etc., but I don't want the main thing that they think of about me to be " he's sick " . I want them to treat me, and think about me as they did before, except in cases where I specifically need allowances. Of course so far I have only had low-level symptoms,so things may change if I get worse... athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 1999 Report Share Posted October 4, 1999 Hi Liz! You are a God-send to me and many others on this site. Financial. With my third visit to Duke, my hubby and I talked to a lady on the phone and she said that we could pay $XXX. Now they are bugging us telling us that this is not enough. I told them when I first went there that we had no insurance. It is amazing what can and will happen to you when you tell someone this. I have written to the ALF to see if there are any foundations, etc., that maybe could help me when I get my transplant -- especially the medicines afterwards. I cannot afford the medicines that they give you for PSC although we did get one prescription filled of Actigall. The doc said that it probably wouldn't do any good, but it wouldn't hurt. If I don't find a way to have my transplant and more importantly my meds paid for (or at least part of everything) I will just have to die. That just shouldn't happen this day and time. I worked very, very hard all of my entire life and loved every minute of it!! I am not one of those people who think that the world owes them a living or anything else, I am just in great trouble and cannot see my way out. Please, please try and help me. Hugs, Biddy Re: PSC Confirmed >Hi Biddy, it's unfortunate but true that many times the patient is not given >a thorough explanation of what is being done to them when hospitalized. And >it is sometimes intimitdating for the patient, because they don't want to be >seen as difficult if they demand a full explanation. I always tried to give >the patient as much information as they needed before doing anything to them, >however, because of the way hospitals are staffed (where I was working at >least), nurse wise, it is very hard to spend as much time talking with and >educating the patients because of time restraints, thereby reducing bedside >nursing (in my experience) to a very task oriented job. I wasn't happy with >this set up, and went into home care after that, where I had more time to >spend answering patient's questions, etc. Anyway, any time I can be of help, >just let me know! Have a good day. Liz > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
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