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PatiLee
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 3/20/2007 6:14 AM (GMT -7)   
Hello, I'm new to this forum.  My husband was told he had hep c in 2003.  We've tried interferon/pegasys, but he couldn't continue with the treaments after 7 weeks.  Talking to him now is like talking to an extremely drunk person who just won't go to sleep.  I see him do things like smoke an unlit cig.  I can't get him to understand what he's doing, which is extremely frustrating for me.  I'm 39 and he's 40.  We've only been married since 02.  He has been told that the hep c has been in his system for a very long time, possible since a transfusion he had at birth.  He shakes so bad, repeats conversations we had just 5 min ago, falls.  I just don't know what to do, what comes next?  He is on the transplant list and on all the medications i've seen in here.  Xifian, water pills etc.  To complicate things more he fell 10 ft off a catwalk and has 3 compression fratures in his back.  He's on Oxy for that which doesn't help the liver. 
 
He says all i do is yell at him.  But I just don't want him to fall, burn down the house etc.  I work full time and never know what to expect when I go home.  The past few days he's been telling me things like..."I'm afraid to go to sleep, I might not wake up" or last night he got woke up crying that he was dying...I just don't know what to do. 
 
Thanks for listening.
 

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/20/2007 8:14 PM (GMT -7)   
Patilee, 1st of all welcome to our forum and please believe me when I say that I know how you are feeling. Been there and done that. It's probably the hardest is job that I have ever had is to be a caregiver for my husband with ESLD. He has told me the exact same thing.........it's kind of eerie you wrote word for word what my husband has told me. I too work full time and sometimes dread coming home because I never know what I am going to walk into. There's alot of nice people on this forum who have been there also. This is a great place to get ideas, get support or just get out your frustrations. You're very lucky though he is on the transplant list. Hopefully he will get a liver soon. It is usually not easy to get on the transplant list. It took my husband over a year to get on it but they had to take him off a month later. He has hep C with cirohsis and developed cancer that finally got too big to be listed. Hang in there and come back and post whenever you feel like it. Someone will always be here for you. Take care. My thoughts and prayers will be with you. Pink Grandma

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/20/2007 11:37 PM (GMT -7)   
PatiLee, I just wanted to welcome you to the forum. I have chronic, active hep C and liver cancer, but I've never experienced any of the behaviors associated with End Stage Liver Disease. Remarkably, my liver function has remained fairly good--good enough that I didn't qualify for a transplant. It generally takes decades for one to start experiencing symptoms from hep C. I was diagnosed in '93 and know that I contracted it in '68 or '69.

There are quite a few ladies here who are caretakers of their ESLD spouses or partners, and they will be able to offer support and info.

Hugs,
Connie

PatiLee
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 3/21/2007 6:58 AM (GMT -7)   
Pink Grandma, I know I should be thankful he's even on the transplant list, however, they keep telling me he's not "sick enough" to get the transplant yet. They take none of the side effects into consideration, just the liver function. How do you do it. My patience is sooooo thin, and I know he can't help how he feels or acts. That is another thing I hear from all the Dr's..."it's part of the disease". We have a very wonderful Liver Dr. who I have all my faith in and the Penn transplant center has been a blessing. But I just feel NO ONE UNDERSTANDS! His family doesn't call, no help! Mine on the other hand is there every step. How do I keep taking off of work to make his Dr. appts, tests etc...then I have some sort of appointment and won't go because I feel so guilty for leaving work early...again. Lately the dread for going home is tremendous! I did start some counciling, however won't continue because it's for me, not him. He actually told me the other day that I need to go again to learn how to deal with him...I argued back that maybe he should go...the frustration of waiting is really getting to me...waiting for a transplant, waiting for him to (as they put it) get sicker...how do you do it, how do I manage to keep doing it. What is your husbands MELD score?

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/21/2007 2:02 PM (GMT -7)   

Patilee, Welcome to the forum. My husband was just recently transplanted Friday. I know what you are going through. My husband was in the hospital 15 times in the last year. You need to get a FMLA from your employer to take with you to his liver doctor, this will keep your job safe! I had a hard time leaving home to work and a hard time coming home, I never knew if things would be okay. This disease can be so very isolating, friends and family stop coming around. It is so very hard to just wait for the transplant call, and ESLD hepC patients do tend to be sicker than the other ESLD patients before the MELD score is high enough for a transplant. Mark's MELD score would be 23 one day then down to 18. He got his transplant at a MELD of 15. I know it is hard to control encephalopathy, Mark's was very hard. They did find that he had a chronic prostate infection, which caused alot of his encephalopathy. He is not going to understand how you feel, the encephalopathy does that. It was very hard for me to get through all the stress and frustration that comes with this disease, I prayed alot, I came to this board and vented, met many wonderful friends here they are a wonderful source for support! You just need to keep talking to us it helps!!!! We do understand, alot of us are going through it or have gone through it. Just know that you are not alone!!!! How long has your husband been on the waiting list and what is his MELD score? ((((Big Hugs and Prayers))))

Teresa


PatiLee
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 3/21/2007 3:20 PM (GMT -7)   
Hi Thresa,
 
Lee's MELD Score is at a 13.  He is actually going for blood work tomorrow so we have it before we go to Philly On the 30th for a check up.  Lee's sleeps alot during the day, sometimes, and then at night he's up.  He's sleep patterns are very very irregular.  They say this is "normal". 
How is Mark doing?  Lee has been on the List since Feb, 2006.  I can't afford to be out of work.  I work at a very small company with only 6 employees.  We do not have long or short term disablity.  I have found very little financial help for ESLD.  WE have finally gotten Disablity for Lee, after almost a year.  But I still pay his Cobra health insurance from when he had to leave his job. 
Lee's cousin calls us, but really doesn't come around.  He says that he can't stand to hear lee's voice like it is on the phone and that he can't handle seeing him so weak and tired.  His parents pretty much disowned him.  My daughter, step to Lee, stopped coming over.  I think it's hard for her to handle, she's only 16.
I've been looking for some sort of online support for a very long time, and I'm greatful I found this.
 
Pati

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/21/2007 6:58 PM (GMT -7)   
Patti, My husband's meld score was at 18 with a cancer exception which brought it to 22 when they took him off. And yes it also went up and down. I too know how it feels to be isolated. His family is no help and mine are good, but they really don't like coming over too much, as some days he is so sick. This forum has been a god send to me. I don't think I could have made it much longer had I not found this forum the end of last year. See if your state has state disability for FMLA. California does for about 4-6 weeks.
Have your husband check for any kind of infection. My husband gets skin infections and that's when we could not control his encephalopathy. They put him on Xianfan last December and he hasn't had a problem with it since.
I use anytime away from him as a (get it back together time). That includes at work. When I am home and it becomes too much I will go outside and walk our property till I can calm down. But by far it's this forum that helps me the most. All the people here are so wonderful you can't help but feel a little better after reading some of the posts. When I read that Teresa's husband got his transplant I would have done a double back flip if I could. I read it the day after they had taken my husband off the list and gave him 3-6 months to live. It gave me hope about the transplant system that it did work. Maybe not for my husband but it was working for others. Hang in there and take care of yourself too. You will be no use to your husband if you get sick. :-) Pink Grandma

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/21/2007 8:51 PM (GMT -7)   

Hi Pati, My husband is doing great, looks great too!!! He had heart problems last month and had been listed inactive, the surgeon saw him and reactivated him and less than 2 weeks after the visit, we finally got the call Friday morning. He did have heart complication yesterday and was transfered to CCU to regulate the heart beat, he is now back on the transplant floor. Mark had this very throaty sound in his voice, I am assuming this is what your husbands sounds like, I personally think it is related to the encephalopathy, the shaking hands are too. Mark's sleep pattern was inverted slept most of the day then up all night, he was always cold. I would walk into the house or wake up in the middle of the night, the heat would be turned up to 80 degrees. Pinkgrandma is right have them check your husband for any type of chronic infection. He may need to be on maintenance antibiotics.

Pinkgrandma, I am so sorry to hear and about your husbands listing, ((((Hugs and Prayers)))) I wish there was something I could do. I will open my e-mail up so you and Pati can contact me.

Teresa


PatiLee
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 3/22/2007 4:50 AM (GMT -7)   
Oh Ladies, you have no idea what a relief this is...(perhpas you do).

Teresa, I'm so glad Mark is doing well. It must be such a load of both of you now that he can heal. Prayers are with you! Lee is currently on the Xiafan, also on a weekly dose of antibotic to help keep the infection down in his retaining fluids. Sometimes his legs swell so much they look like clubs. You've discribed his sleep pattern to a T. He shakes so bad, the other day he was trying to put a lite switch cover on the wall and I had to place his hand holding the scewdriver in the screw head for him. Lee is always cold and what you say about the heat...happens everyday! Did or does either of your husbands have little red marks all over them? His eating patterns have dramatically changed also, if I make him a dinner he'll eat a small portion, but put a bowl of ice cream in his hands and he'll keep going back for more. I worry about his sugar levels, he eats to many sweets.

Pink Grandma, I'm so sorry to hear about your husband. How is he doing? How are you doing? Your right about this being an isolating diease. Don't get me wrong, people hear about it and they're very understanding and kind. That is about as far as "help" goes.

I lost my daughter, who was 19, to complications of a tonsilectomy in Oct, 2005. Things just keep happening. You say prayer helps, all that we've been through that is the only sure thing! I've, and still do, gone thru so many emotions. Sometimes I just want to run away!

Thank you so much!
Pati

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/22/2007 6:55 PM (GMT -7)   
Pati, You have my deepest condolences about losing your daughter. I am amazed with you. You have to be one tough cookie to make it through everthing. And your feeling of wanting to run away is so normal for caregivers. I feel like that quite often. Sometimes it's like I have the this real heavy weight on my shoulders and I think that I am going to be pancaked by it. You are right everyone is kind but they have no idea how to help. And I have a tough time trying to ask for any help. I know everyone has their own problems and their own live's to live so I don't want to ask anything of anyone. But I am trying to get up the courage to ask my daughter to come over this weekend and help me clean the house. Between work and his appointments and needs, and I have been down with a bad cold for a week, my house has suffered. I am not a clean freak but it's getting too much for me to take this mess much longer.
My husband doesn't have little red spots on his body but he has developed the liver spots. They are rather large and brown. And his sleep pattern is turned upside down also. He stays awake most of the night and sleeps most of the day. He also sleeps with about 6 blankets and we live in California.
You're also right about being concerned about how much sweets your husband is eating. We were told that it is very common for ESLD patients to develope diabetes. But I am sure that his doctor's must be keeping an eye on it with his blood draws. How often do them have him drawing is blood? My husband has had a standing order for about the last 3 years for monthly blood draws. They have changed them a few times to weekly and by-monthly. What is hardest to do is keep track of the medication changes. I can't count the number of times that they changed the dosage of a number of his meds. My husband and I are doing okay. We are taking it one day at a time.

Teresa I did email you. Let me know if you received it. Hope Mark has had a good day and you as well.

My thoughts and prayers with be with all of you, Pink Grandma

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 3/22/2007 7:59 PM (GMT -7)   
Pati, welcome to HW, :)
I am a caregiver to my husband, who has chronic active hep b w/cirrhosis,,,,and I feel like running away on a daily basis,,,,,so dont feel bad, this is a very tough thing to deal with,,,,but good things do happen, such as for Mark and Teresa,,,,,,,so do your best to keep yourself together and get out as much as possible,,,,even if just for short times,,,,I am so sorry about your daughter,,,,,I got chills up my spine as my daughter, 16, just had a tonsillectomy(sp?) ,,,and she didnt get over it very easily at all,,,,but is better now thankfully. The Oxys are not as bad on the liver as some drugs are,my husband was told,,,,,,Oxys, morphine patches or some kind of nasal spray,,,,,were the least harsh on the liver as far as pain meds go,,,my husband also has a herniated disc and needs surgery but keeps telling me hes afraid he wont wake up...he also has a bad heart. As far as meds,,,,,,whew,,,,,,,,every friday night i sit down, fill Ricks med case, (hes on 15 different ones now),,figure out what needs refills called in,what needs called into the dr for the following week,,,a couple of times rick tried to take over doing this for himself,and created a disaster,,,,,,,he was running out of meds in middle of week,panicking and upset,,,,,,so now he cant touch em,,,,,,lol I have to say,this forum has been my lifesaver too,,,,,,,there are no support groups in our area,so i looked online and found HW,,,this is a wondeful group of people. My husbands family ,too, has almost disowned him,except for his mother,,,,,,but hubby refuses to go see her,,,,,,,,tells me he doesnt want his mom to have to be around him when hes like this,,,,,,i cant blame him, i dont really want he to have to deal with him either,but she doesnt understand at all how much hes changed,,,,,,,I try to tell her,without sounding mean towards him,,,,,,but she doesnt get it,,,,,,,even mentioned that i am keeping him from her,,,,yeah right,,,,,,,id love for someone else to deal with him for a few hours,,,,,,we will be here for you hon,,take care of yourself
trish 
Moderator for Hepatitis Forum 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


PatiLee
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 3/23/2007 6:42 AM (GMT -7)   
Trish,
Everything you said strikes home...you could be living with me...lol Lee also tried doing his meds, boy the exact same thing...ran out of them before it was time to get refilled. And the sounding mean part...he said I sound that way all the time towards him...he says I talk to him like a child. I was also told oxy's and patches are the least harmful. I just worry about the addictiveness. Lee goes for blood work every other month, unless they see something in his general health they want to test for.
You said about someone else "dealing" with him. I dropped him off one saturday with my mom...when i went back to pick him up I could tell she was shaken a bit. She looked at me and said "he needs 24 hour care". I was so happy that finally someone saw just a taste of what it was like.

PinkGrandma, Everyone...my friends, family, coworkers, strangers all say how strong i must be. But you know, sometimes I don't want to be strong, I want to cry, I want to scream, I want to say what about me. But I can't. I have a younger daughter, 16 now, who is my sunshine! She has gone to live with her father, due to all of the stress in our house. I miss her terrible! Lee doesn't understand why I need to get out and often will start a fight with me to make me feel guilty. Then I don't go.

Pati

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/23/2007 8:14 PM (GMT -7)   
I hear you Pati about the (how strong i must be).. We have to be we have no choice! Someone has to be strong. My daughter is 30 years old and she is my best friend. She is the only one that I can depend on. But she has her own family so I don't like to ask alot of her. But she comes through whenever I need her.

Right now I lucky my husband handles his own meds. He fills his pill container and takes his meds without alot of reminders from me. I have them automaticly refilled by Walgreens and when they are ready I get an email from Walgreens. Up until I did that we would run out of meds occasionally. The only problem I have is trying to remember to pick them up after work.

My husband's family can not deal with him either. He's too mean and unappreciating they say.... is why they don't come over to see him. I understand but they could at least call him occasionally just to chat with him. He'd love that. But everyone has their own way.

Take care Trish and Pati..........Pink Grandma

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 3/24/2007 6:12 PM (GMT -7)   
WElcome Pati,
You already know how supportive the new friends you have made are. This is a life saving site. Hang in there. You and Trish sound like "peas in a pod". Take her advice and I'm sure you'll get through this difficult time.

I have autoimmune hepatitis and cirrhosis but things are going well with medications. As i read the posts of those with worse liver conditions than myself I thank God and realise how lucky I am.

Remember to take care of yourself. you can't help your loved one if you are run down.

Marg
 


ColoradoDoug
Regular Member


Date Joined Mar 2007
Total Posts : 34
   Posted 3/25/2007 2:57 AM (GMT -7)   
Hi Pati & everybody
 
In reading through this thread, I saw a lot of things that I recognized. I am the patient in this case, not the spouse/caregiver. I have chronic HCV with cirrhosis with varices, ascites, etc. I haven't developed encephalopathy yet, but I do have a lot of forgetfulness & some short term memory loss. I am on the transplant list with a MELD score of 12 at my last blood draw. It went down as low as 8 but it is now back up, I guess.
 
I can identify with being cold all the time. I have to wear sweatshirts when it is less than 80 degrees & I'm also always turning up the thermostat to at least 73 or 74. My wife likes to get out to go shopping or see her friends. I don't mind. It probably gets depressing being around me all the time. She is not sick, still works, & she deserves to enjoy her free time. I think she understands that I don't have the energy to get out & about much. I often wake up at 2:00 or 3:00 am & can't get back to sleep, so I finally quit fighting it & get up. It seems better than lying there wake in the dark. I've lost most of my appetite & can't eat very large portions of anything anymore; if I do, I feel stuffed for hours afterward. I generally snack several times a day - the doctor told me this was better for me anyway. I have the daily pill organizer but thank goodness I only have to keep track of 5 different meds every day.
 
Pati, if I can help in any way from my perspective as the one with ESLD, just let me know. Same with the rest of you, too. 
 
Doug   

PatiLee
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 3/25/2007 5:14 PM (GMT -7)   
Hi Doug,

I would love to hear your perspective. My husband says I don't understand. In some ways I guess I can't. He was always very active and is having a really hard time not being able to do anything. He gets extremely jeolous lately at everything. We lost our home last year and have recently purchased my parents old house. It needed alot of things done. The people I work with and a group of friends I grew up with did alot of the work for us. Of course these friends of mine are male and he's extremely insucure about them. I try to do things like have them over to the house so he can meet them, it doesn't seem to help. Do you have any advise for me in from a mans point of view.

He also gets alot of headaches, I don't know if this is "part of it".

Lee wakes me up in the middle of the night, because he can't sleep. I get mad at him when he does this but feel such guilt afterwards I get up. I work 5 days a week and I'm feeling more depressed and tired lately.

I know i'm rambling today...I guess I'm just overly tired. I'm looking forward to Lee's appt with the transplant team this friday.

Trish...how are you?

ColoradoDoug
Regular Member


Date Joined Mar 2007
Total Posts : 34
   Posted 3/25/2007 7:25 PM (GMT -7)   
Hi again, PatiLee
 
You didn't say, but is he taking lactulose? It's a red, sweet tasting, thick liquid laxative. It makes you go poopie a lot. I understand that they prescribe it to get the excess ammonia out of your system to try & control the encephalopathy. I have taken it a few times, but I don't need it on a steady basis. At the seminar they gave to the new transplant patients, one guy joined the group who had already had a transplant. He was a part of the support group. He said to always have the stuff on hand because it will clear up some of the brain fog & help you think & act somewhat normally for awhile. If he isn't presently taking it, I would recommend you tell the doctor about his behavior & ask him/her about it.  yeah I think it would provide a lot of relief for both of you.
 
While I'm thinking about meds, did they ever do anything about the HCV? According to my hepatologist, they would like to try & clear it before performing a transplant because it would just infect a donor liver, especially with the anti-rejection drugs you have to take post-transplant. I did the combo therapy (interferon & ribavirin) for 48 weeks in '06. January to December. My whole year was shot. By the way, I have been on the liver transplant list since December, '05.
 
As for being awake at all the wrong hours, & sleepy at all the wrong hours, I read that this illness does mess up your circadian rhythms. The doctor says the weird sleep patterns are fairly "normal". My wife & I have been sleeping in different bedrooms for awhile now, & we have an air purifier that we run that sounds like a fan. If you can get used to sleeping with some white noise in the background, it would help drown out the sounds of an awake person banging around at 3:00 am. I do make an effort to be quiet when I'm up. Or maybe you could try some earplugs...
 
My wife & I have been married almost 19 years now. She has always had male friends, but I know most of them because we used to play music together. My wife grew up with 3 brothers & has never had a problem relating to men. I've never been the jealous type, either. I pray I don't start to get paranoid & jealous as my condition worsens. If I get like that, I'm going to do my best to get a lactulose prescription, even if it means a lot of time spent in the bathroom (a small annoyance given the alternative).
 
Above all, don't allow yourself to be manipulated or to feel guilty. From what I can tell, it seems to me that you're reacting just like a normal person would.  nono
 
Later, 
Doug
cool     

PatiLee
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 3/26/2007 4:52 AM (GMT -7)   
Thank You Doug,
Yes he has lactulose. He just got that perscription and hasn't tried it yet. Lee tried the interferon & pegasys, however, he only lasted 7 weeks on the therapy. He got extremely depressed, muscle breakdown, throwing up consistantly. They were concerned that his kidneys would go into failure. So they took him off of it. I am aware that when he gets his new liver the HCV has a high percentage of returning and full force. We have discussed trying the therapy again, but they are apprehensive because of the side effects before.

Your wife sounds alot like me, i also have 3 brothers and grew up with all their friends. I think alot of Lee's doubts and thoughts are due to the fact that before he was sick, we did everything together. I really didn't do anything with my friends or anyone. Now, I need to and he doesn't understand. I'm hoping when I read your responses to him, it will help him also.

Pati

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/26/2007 11:29 PM (GMT -7)   
Hi, Pati! I'm glad you've found some posters here who you can relate to. I knew you would! :)

I don't have encephalopathy, but do have my days and nights mixed up, and lately have been sleeping 14-16 hours at a time. I will get up to feed the cats or go to the bathroom, but then go right back to sleep. I generally can't get to sleep before 3 AM, and I sleep until 3 PM or later (I use ear plugs.) My docs have said it is the hep C. I've had this fatigue, and the need to sleep, for a long time....but not this many hours. I suppose the liver cancer has something to do with it. This "sleeping thing" is something that literally none of my friends or family understand. I will also need to take the hep C treatment after I've recovered from the hepatectomy...but don't know if I will. I didn't do well with it originally. I'll have to take one thing at a time.

My thermostat is always set between 78-80, winter and summer. I'm lucky to live alone. I have some forgetfulness, but attribute it to age (I turned 64 on Sun.)

I am still waiting for a surgery date.

Pati, you hang in there, but take some time for yourself....even if it's a walk around the block. It's a way to decompress.

Teresa, so glad that Mark continues to do well in his transplant recovery!

I'm going to try to get some sleep now that it's nearly 2:30 AM.

Hugs,
Connie

PatiLee
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 3/27/2007 5:34 AM (GMT -7)   
Does anyone know if pain in the joints...knees and feet are part of this? Lee retains alot of fluid in his legs, he does have back problems so i'm just not sure if the pain he has is attributed to Liver or Back. He's on Oxy, so I just think that should take care of all pain...guess not. He can barely get up from the toliet. I can't wait till Fri, to meet with this transplant team again. Has anyone tried sleeping pills for the sleep pattern mix up? The Dr. gave lee ambien, wow...makes him do weird stuff and NOT sleep.

Has anyone heard how Mark is doing with his transplant?

Thank you all!
Pati

ColoradoDoug
Regular Member


Date Joined Mar 2007
Total Posts : 34
   Posted 3/27/2007 7:20 AM (GMT -7)   
Pati
I have joint pain. It's gemeralized (all over), but I feel it particulary in my knees & feet. I think it's just another one of the symptoms of HCV/cirrhosis. My ankles swell up, too, & it makes it nearly impossible to remain standing for any length of time.
I haven't tried any rx sleeping pills. Frankly, I don't want to be taking yet another med & have to deal with more side effects. I take enough meds with undesirable side effects now. I do take Tylenol PM sometimes. It makes you sleepy & also relieves that darn joint pain for awhile. Some people like herbal tea (no caffeine) such as Celestial Seasonings' Sleepy Time. I do that sometimes, but it makes you have to get up later to pee, unfortunately.
Doug

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 3/27/2007 11:38 AM (GMT -7)   
Hi Pati,
Sorry I havent posted much lately. I am trying to catch up on my reading this afternoon. I started back to school Mon. and things have been crazy around here for the last week or so. OK,,,,,,,Rick is now diagnosed bipolar(not sure if i posted this part before) ... he is on a mood stabilizer now,since last tues.and it seems to be helping,,,,,,, I actually have seen him laugh a few times in the last couple days. The joint pain I think is normal,,,,,,,Rick usually moves more like a 90 yr old then a 48 yr old,,, Im not sure if this is too personal of a question Pati,but can your husband still "perform"? I know that Rick hasnt been able to for over a year now,,,,and this makes him more jealous of other men. I have tried to tell him that there are MANY ways to make a woman happy,but he just doesnt get that,,,,,so yells at me instead(hm,,,,dont wanna lose your woman to another man,so yell at her???) He has so many health issues, I have no clue which one is causing which problem,,,,,but I do know that losing his ability to "perform" has left him feeling like less of a man,,,,,which is understandable,,,,,,I keep trying to put myself in his shoes,and if my woman parts suddenly shut down,,,I would feel very insecure,,,,,ok enough for now... take care everyone and if you regulars could help me out for the next week or so with keeping up on new people,Id really appreciate it.... I am taking care of my best friends kids starting tonight,plus school,plus going to work,,,,,plus running her kids around AND my teenagers,,,,,,:sigh: I feel like I try to take on the world sometimes,,,ok enough whining lol I WILL GET THROUGH THIS lol take care all
trish 
Moderator for Hepatitis Forum 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/27/2007 3:25 PM (GMT -7)   

Hi Pati, Mark continues to do well, he is home now. Taking short walks in the neighborhood. He is no longer cold, in fact he has not been seen in his house coat and warm-ups since he came home. Mark did have the joint pain in his knees mostly, but also had alot of muscle cramps. The lactulose you just got the script for is a very important medication for Lee to take, it helps control the encephalopathy. Mark really dislike this medication, because he had to run to the bathroom so much and it also kept him at home more than what he would have liked. But it did help keep him from being admitted into the hospital with very high ammonia levels. Just hang in there, things will come together.

Teresa


PatiLee
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 3/27/2007 5:51 PM (GMT -7)   
Hello Everyone!
Teresa, I'm so glad Mark is doing well, isn't it just amazing the difference and how quickly we notice it. I can't believe he's up and walking in the neighborhood. That is just wonderful!

Well, I guess I'm kinda relieved that the joint pain sounds like it's a "normal" thing. Lee to moves like a 90 year old man. Trish, I'm not sure if Lee can perform or if he just doesn't have the interest. Maybe in the past 2 years or so...3 times. He worries alot about me getting the Hep C. Also with all the meds he's on, who knows. I also tell him that a hug, a kiss and ok a back rub now and again is enough...he doesn't get that. He wakes me up at 4 am to discuss a divorce. Talk about FRUSTRATION on my part. Trish, be careful not to take on to much. Although I would love to take on more just to keep me busy, but afraid that it will cause Lee more distrust and in turn me more frustration. The Dr, in private has mentioned to me that Lee might be bipolar. But really didn't pursue it further, Lee told him he's sick and feels like he's going to die....shouldn't he be depressed. They do have him on Lexapro, I guess it helps, it sure calmed his patience towards other people.
Doug, Our Dr.s are totally against any Tylenol products, even every now and again. Did you have a hard time with the Interferon therapy? That is wicked crap!!

Goodnight, and Thank you everyone sooooo much. I've shared this with a really good friend of mine who said this site helped her to understand that what i'm going thru is in no way exatrated. It's helped her to understand what Lee is going thru.

Pati

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/28/2007 12:19 AM (GMT -7)   
Pati, has Lee ever taken Prednisone or been a heavy (or alcoholic) drinker? Those are 2 causes of avascular necrosis/osteonecrosis (AVN/ON), which I have and for which I had to have hip replacements. Basically, the bone dies and collapses. This happens in the joints--hips, knees, ankles, even shoulders and wrists. Or he could just have plain ole arthritis.

Trish, I would say that the medications Rick takes are the reason he is unable to "perform." Liver problems wouldn't do that, as far as I know. Has he tried Viagra? Also, when one is ill, sex is about the last thing a person wants to do. In my case, it's been about 18 mos. since I've had sex...mainly due to my hip problems. Now it's okay to do so, but my man and I are both a little nervous about how it's going to go.

Hugs,
Connie
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