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Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/20/2008 7:40 PM (GMT -7)   
Butterfly I just want you to know that I am thinking about you. I know that things must be getting kind of hairy for you not to post for a while. How are you? Please remember to take care of you too. I know with teens and a sick husband it is tough... but in order for you to get through these trying times in one piece you have to give yourself some sort of mini break. If you need to talk email me it's in my profile. I'm a good listener...........Take care....thoughts and prayers..........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 3/22/2008 10:02 AM (GMT -7)   
Pink Grandma and Everyone, I am sorry I haven't been here for awhile. I have had computer problems and also some personal problems. I am doing pretty good except for a little depression that I am trying to work on. My husband is stable but he has been pretty moody and irrational lately. Downright mean to be honest. Which has caused a lot of hurt to my kids. It has probably damaged his relationship with our son and his family. The problem is that he has been this way in the past from the alcoholism and the treatment he was on several times for the hep C (sometimes I wonder if I am just making excuses for him). We have not had it easy standing by him. I don't look for this to blow over very soon. He seems to be better the last couple of days. I hope it lasts.

I wanted you all to know that I am always thinking of you, and you are all in my prayers. I am going to try my best to get caught up.

I hope everyone has a wonderful Easter.
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/9/2008 5:57 PM (GMT -7)   
Hello Butterfly, Just checking on you it's been a while. You don't have to post much just let us know that you are okay . Please........

Lot's of thoughts and prayers coming your way.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


mailman
Regular Member


Date Joined Dec 2007
Total Posts : 38
   Posted 4/10/2008 4:14 PM (GMT -7)   

Butterfly,

          I too have been wondering what happened to you. Sorry your husband is not responding well, but Grandma is right, you need to take care of you also. You continue to be in Nancy and my prayers as do all who suffer from this hideous disease. Thoghts and Prayers. Delivered by the mailman.


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 4/13/2008 8:43 PM (GMT -7)   

Butterfly  I too have been thinking of you.  Please just hang in there.  They don't mean what they say when their amonia get high.  Please try and explain that to your children.  Hopefully they will understand.  Its hard for young people to understand sometimes but I truely believe they forgive much faster then adults.  My husband never would utter a swear word in front of a women if his life depended on it.  A true southern Gentleman.  But when his amonia got high he cursed like a saylor.  So try and explain the disease to your children. My husband and I decided not to tell the kids at first and it was horrible.  My daughters would get so frustrated because they couldn't understand why we were not asking more questions.  We were but just were not telling them.  Believe me it does help if they understand.  I hope you are taking care of youself.  Remember your children need you also.  And you can't do for them if you are burnt out.  I will pray for your husband. 

JoAnn


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/15/2008 4:00 PM (GMT -7)   
Thoughts and prayer for Butterfly
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/24/2008 8:46 AM (GMT -7)   
Still thinking about you and lots and lots of prayers.....
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


mailman
Regular Member


Date Joined Dec 2007
Total Posts : 38
   Posted 4/24/2008 10:19 AM (GMT -7)   
Hi to all. Haven't been here lately, and I hope and pray all is well with everyone. I went to the clinic yesterday and was told everything was progressing nicely. My liver enzymes are continuing to improve and there is no sign of the cancers return or of rejection. Next visit is in 4 weeks and I will start seeing the hepatologists instead of the clinic. I continue to live one day at a time by the grace of GOD. I have received clearance to begin cardio workouts to improve my stamina but I still am not allowed to begin weight training. I continue to pray for the family of my donor but have founf it extremely difficult to write a letter to his family. I guess the time is just not right yet. My thoughts and prayers go out top all. Delivered by the mailman.

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 4/29/2008 7:26 PM (GMT -7)   
Thank you to everyone for keeping me in your thoughts and prayers. You all have also been in mine. I think of you all every day, but just haven't been able to bring myself back here for awhile. For that I am sorry. My husbands swelling has been harder to control and his mental ability (confusion) seems to be getting worse. I have increased the lactulose. That has seemed to help a little. He had a hearing for Social Security April 10. They said it can take up to 90 days for the decision. He was also turned down for Medicaid due to an IRA that I have set up from my employers, which I think is wrong for them to use to base their decision. Our only hope now is that Social Security comes through soon and then he will be eligible for Medicare. As it stands now he is unable to see his doctor because of the insurance problem. Please continue to keep us in your prayers.

You all will be in mine.
Butterflythree
 
There is always hope!


callapitter
Regular Member


Date Joined Jan 2008
Total Posts : 25
   Posted 4/29/2008 8:03 PM (GMT -7)   
Butterfly,

My prayers are with you and I just want you to know how strong I think you are for everything that you are going through. You are truly an inspiration to us all. Hang in there. :)

Calla

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/29/2008 8:20 PM (GMT -7)   
Hello Butterfly,

Let me try this again. My power went out in the middle of my response.

I am sorry that your husband's health isn't doing better. I know how rough it is on you. We understand why you are not posting so much so don't even be concerned about that. I wish that I could be there for you and hold your hand or just hold you. Know that I am with you in thoughts and spirit. You may feel over-whelmed ,over-tired and alone. But you have a whole big family in cyberspace sending good thoughts and prayers your way. Hang in there Butterfly! We know it's hard but you can do it. You are tougher than you are feeling right now.

Is he on any antibiotics? If he has a infection the lactulose won't work. Remember they get infections easily. My husband had to remain on an antibiotic for months.

Tons of thoughts and prayers ............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


mailman
Regular Member


Date Joined Dec 2007
Total Posts : 38
   Posted 4/30/2008 1:30 PM (GMT -7)   

Butterfly,      Please know that you are in my thoughts and prayers. i know it is very tough, but your husband will be needing your strength also. Stay in prayer and contact with others who are going thru the same thing. You WILL find comfort and strength. Delivered by the mailman.

 

 


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 4/30/2008 7:48 PM (GMT -7)   
Pink Grandma, Thank you so much for reminding me that I am not alone. That is exactly how I feel most of the time. I am so glad that you are all here. I only hope that I can be of help to others here. I don't think my husband has infection, but I am not sure. He hasn't had fever or anything. He has a doctor's appointment on May 15. She will be able to tell us then if his labs look worse.

Mailman, I am so glad that you are doing well. Thanks for your words of encouragement. I am trying to stay strong for my husband. He has no idea of how scared I really am. I try to keep a smile on my face and pretend everything is fine. I would never let him know how I really feel for fear of making him lose hope.

You both are in my thoughts and prayers also.
Butterflythree
 
There is always hope!


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 4/30/2008 8:03 PM (GMT -7)   

Butterfly. I just wanted to tell you my husband has never had a fever but has had some type of infections.  The medicine he takes now is on for 14 days off for 14 days.  He is like a totally different person.  He's back to work and driving also.  He hasn't been able to drive for months.  He was just to goofy or just couldn't keep his eyes open.  So it is possible he doesn't have some kind of infection.  Also last months he had to have a blood transfusion.  The way it was explained to me is he wasn't loosing blood his body just wasn't making enough.  I know that whatever the reason the transfusion really helped him.  The Dr. said the low blood will cause high amonia also.  There are a few posibilities for you.  Hang in there.  Let us know if we can help.  Just keep some hope and know you will have more good days.

 

JoAnn


mailman
Regular Member


Date Joined Dec 2007
Total Posts : 38
   Posted 4/30/2008 8:26 PM (GMT -7)   
Exhaused,   So glad to hear your husband is doing better. Keeping both of you in thought and prayer.  I don't know whether I mentioned it but I have a new grandaughter named Ava Marie. Born on 4/14/08 If not for the transplant I might not have been here to see her. I am truly blessed. Delivered by the mailman. yeah

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 5/1/2008 3:27 AM (GMT -7)   
To all

Butterfly- It is so easy to feel trapped and isolated, whether you are a caregiver or the patient, but please try to remember that here you are not alone. My thoughts and prayers go with you both as you travel on this journey.

Joann-I am thrilled to hear that your hubby is doing so well. I know that has to feel that for the moment the weight that has been on your shoulders has shifted.

Mailman- You are so right , you are truly blessed. Congrats on the new grandaughter! It gives us all renewed hope when someone is able to conquer this horrid disease. Thank you for sharing your progress.

Lucy

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/1/2008 8:45 PM (GMT -7)   

Mailman  That is so great about your grand daughter.  WE have one named Ava Jay.  She just turned 3.  We have 11 total and to me there is nothing like it.  They are so fun.  OUr oldest is 9 and youngest is 5 months!  I think that will be it Christmas is crazy but so fun.  Could you tell me what it was like when you got your transplant.  By that I mean how sick were you when you got the liver and what was your meld.  Jerry's meld is 16.  He's takng Neomysin now and is doing so much better.  The only problem is is having at this time his his hernia won't stay in so we are constantly pushing it back.  That does scare me.  I'm so glad you are doing well and please keep us informed.  Its so nice to hear the success stories.

JoAnn


mailman
Regular Member


Date Joined Dec 2007
Total Posts : 38
   Posted 5/2/2008 6:44 AM (GMT -7)   
JoAnn My meld score was 25 when I was transplanted. I had 3 cancerous tumors largest being 2.5cm. I had become very lethargic. My abdomen was very distended due to ascites and I was in pain constantly. Not a sharp pain but a consistant ache. I would come home from work and wrap a heat pad across my abdomen and curl up on couch until bedtime. I was losing my appetite except for nibbling on junk. The two weeks prior to surgery were the worst. Although I was working full time, I was not able to do my job to my standards. Feeling as good as I feel now, I realize how bad I was feeling before. When you are going thru it, it is almost as though the abnormal becomes normal. I was not feeling really sick, just tired all the time and losing muscle mass and strength. I think however that everybody's symptoms are as different as they are alike. I will continue to pray for you and Jerry. Keep the faith and stay in touch. Delivered by the mailman

marketa
Regular Member


Date Joined Apr 2008
Total Posts : 26
   Posted 5/3/2008 8:13 AM (GMT -7)   

 Good Morning Butterfly,

Let me start out by saying that butterflies are my favorite,the have so much change that occur but the end result is Wordless. In our struggles is the strength to keep us strong. I know it has not been easy for you and your family, but rememer that your husband is suffering and unable to express hisself. Man can be stubborn sometimes, but I do not think doubt of your love for him has every cross his mind. I know that love conquer all and You have stood forth in all thats happen. Rememberr down time for you is important, because without YOU where would your family stand.Sometimes our jobs is overwhelming,but noone knows the rewards we store in heaven from our deeds on earth. Just be good to yourself Butterfly3 and know that we are here for you. Keep us posted and I send my prayers, in hope that all continue to be better and better for you.

Each and every day in every way, everything I do and say gets BETTER AND BETTER AND BETTER.

                                                                      ONE DAY @ A TIME

                                                                             MARKETA

                                                                                    

 

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 5/3/2008 3:37 PM (GMT -7)   
Thank you all for your kind words and encouragement.

Joann, I am so glad that Jerry is doing better. Thanks for the info. I didn't realize that infection could be present without fever.

Mailman, Your new grandaughter is exciting and happy news. I have one grandson that will turn 1 on June 3 and another on the way in August. Children and grandchildren are such a blessing. Mine have brought so much joy into my life. It is really good to hear that you are doing well. I am glad that you have many more days to enjoy your grandchildren. They too are blessed to have you.
Butterflythree
 
There is always hope!


mailman
Regular Member


Date Joined Dec 2007
Total Posts : 38
   Posted 5/4/2008 11:07 AM (GMT -7)   
Butterfly: Thank you for your kind words. Delivered by the mailman.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/4/2008 3:06 PM (GMT -7)   
JoAnn, did you read my post about the abdominal binder? I also e-mailed you.

Hugs,
Connie

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/4/2008 3:35 PM (GMT -7)   
Connie I did read your e-mail. He was wearing something around his middle but its to the point now he has to hold it in or it pops out. He has done away with the binder (or what ever your call it) because if he has it on he can't tell that it has popped out until it starts hurting. That really scares me because they say they can not do surgery. We left on Friday to go to the coast. This is the third time we have come to our retirement home. He's trying so hard to convince me he's OK but he is moving really slow. Also has to hold in the hernia all the time. I'm also concerned because his 14 day supply of Neomycin ended on Friday. He is already acting very weak and shaking some. That tells me high ammonia already. I try not to second guess but its hard. No vomiting yet and he is eating good. But very weak. We are 10 hrs from Vanderbilt. There is an ambulance and Fire Dept. on the island and we are 30 minutes from the hospital in Beaufort. Its just scary. His son was here for two days. I always feel better when there is someone with me. We did get him to the beach for about 10 minutes to take some pictures and him to spend time with his grandson. We are going to rest for a few days and see what happens. That you so much for the info. No I did not get your e-mail but I will check again.

Thanks Again
JoAnn

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/4/2008 3:38 PM (GMT -7)   
Mailman

Thank you so much. You are the first time I have got info from someone who has had a transplant. It just makes things seem so much more hopeful. Jerry has been very sick from the beginning. He has had severe Acites from the beginning. They got 33 liters from him at one point about 9 mths ago in one week. Now that he is taking Neomysin that has helped alot. His muscles are gone. He is very weak but still trucking. He is just like that. Thanks again for the info and I am so glad you are doing good.

JoAnn

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 5/4/2008 4:29 PM (GMT -7)   
JoAnn, I will pray that Jerry stays well enough to enjoy your vacation together. My husband's swelling has finally gone down and the encephalopathy has cleared. I am praying that it lasts. He has lost about 15 pounds in fluid build up in the last three days.
Butterflythree
 
There is always hope!

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