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Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 12/9/2008 5:30 PM (GMT -7)   
Hi everyone,
 
I finally have my computer up and running. It got hit by lightening and putting money into it at the time just wasn't at the top of my list. I sure have missed having it though.
I have been reading some posts that I have missed. There are so many new people here. Hello to everyone!
I still don't have much time to write though. Between Terry and Mom, I have very little time to myself.
Both of their diseases are progressing and they both need more and more care. Terry has had several bouts of encephelopathy, but he has come through them all. I wasn't so sure about the last one. I thought I had lost him for good. We had been trying Xifaxin, and I don't think it works as well as Enulose, so we are back on that again. He is being much more cooperative with his treatment now. Although he doesn't remember anything he went through or what he did, he doesn't want to go there again, from what I told him. 
One question.Terry has a small scrape on his knee. It looks like it might be getting infected. It is red and very sore. Do hepatic patients get infections like this easily? 
Good to be back!
CAROL

pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 12/9/2008 6:50 PM (GMT -7)   

Hi!  Please do what you can to take care of yourself, too.  You will be of no use to them if you get sick yeah    Yes, liver patients are more suseptible to infections, so check it out, especially if there is pus, pain or if the skin is warm to your touch. 

 

Pix


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 12/11/2008 1:06 PM (GMT -7)   
Thank you Pix and "Hello"

I think his scrape is going to be OK. He says it doesn't hurt anymore, but I am still keeping an eye on it.
I do take care of myself and when I feel the stress coming on, I manage to get out for a couple of hours by myself. Mom has a hospice volunteer who comes on Wednesdays and Terry and I can go for a drive together sometimes.
I ordered a hospital bed for Mom today so I am having to take down the brass bed and move it to another room for when my daughter comes for Christmas. I also have to haul a lot of "STUFF" out to our shop for storage and it is pouring down rain here in Myrtle Beach. It's warm though.
Well, my break is over for a bit. Back to work while it is not raining.
Carol
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/11/2008 3:37 PM (GMT -7)   
Hi, Carol!  Good to see you posting again!  I can tell you that liver patients bruise easily.  I am constantly finding bruises and have no idea how I got them.  Try some Neosporin Ointment on the scrape.  Put it on a number of times per day.  Not only does it do a great job of healing, but also the injury won't leave a scar.  It also comes on some Band-Aids.  I always keep Neosporin in the house as it really works wonders.  I also used it on my surgical scars.  wink
Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 12/19/2008 9:25 PM (GMT -7)   

Hi Connie & everyone,

I finally have a little quiet time. I spent most of the day in the ER with Mom whilr Terry stayed home with a small bit of encephalopathy. He was able to care for himself though. Mom was having sharp chest pains. It was pleurisy but she did not have to be admitted. I was so afraid it was going to be a pulmonary embolism like Dad had. Thank God it wasn't. 
Terry was asleep when we finally got home but he has been a little out of all evening. Hopefully he'll feel better tomorrow.
I finally managed to get my hands on some NutraHep supplement drink. The American Cancer Society was a big help to me in getting that at no cost, otherwise we could not have afforded it, at $20.00 per can.  It tastes really bad, but with some flavoring and Enulose it's OK. He drinks it right down. I don't know why it has to cost so much though. I guess because it is made especially for hepatic patients.
 
With all that's going on here, I don't think I'm going to get my home in much order for when my daughter visits. I think that as long as I have "all of the medications" locked away I'll be doing alright. Mom's air lines will be a problem though. I've already tripped over them many times and even busted a finger joint one time. I don't think it will ever stop hurting. Having a 2 year old around for a week is going to be uhmmm a whole lot of fun. I'll be so happy to see her though.
Maybe I'll even manage to get a Christmas decorated before they all arrive! shocked  
 
I sure do pray for the best for everyone and that we all, somehow, have a Merry Christmas!
 
Carol  

 


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 12/20/2008 3:44 AM (GMT -7)   
Caregiver:
Can you give me a little info on the Xifain. It was prescribed to me 3 months ago. I didn't get it because of the price. And I read it was an antibiotic antidiareal , which seems to me would defeat the purpose of the lactulose. But I was told to go on it for the memmory. So it is now on order. I hate to have yet another med. added to my growing list. I have three weekly dispensers for days and nights. They are already so full I can't seem to put any thing else in them. june

Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 12/20/2008 7:17 AM (GMT -7)   

Goodmorning  June,

I sure hope you mean xifaxan. What you read is correct. It is given to patients with e-coli to rid the body of bacteria through waste, but without so much diahrrea like the lactulose causes.  Terry's GI wanted to give him a break from that. We had to experiment with the doses a bit when we noticed it wasn't working all the time for Terry. You have to be a friggin scientist to balance everything. We finally have just gone back to the enulose for right now and even that has to be adjusted now and then. When Terry is having a good day, he can't take it if we are going out and then he eventually gets all out of whack again. We've tried to do a Xifaxan in the am and enulose in the evening and various other combinations. It's hard to get it just right right. It's the same way with the pain meds and the valium he takes for sleep & the heebee jeebees or "jitters" which he has today.  

Don't get me wrong. It does work and it may work better for you. I thought it was going to be too expensive for us also and I found out that pharmacies would only give out 3-9 pills. The Dr. had to call our insurance co. and verify that we needed 90 pills per month and it costs us $30.00, otherwise it was like $10.00 per pill. The nurse at the GI office has given us all the samples she gets and when she gets more she calls me to come and get them. There are some angels in the world and I have met several lately. Maybe they will do the same for you, if you cry nicely.  Try anything you can think of. Ask every Dr. you see if they will get you samples from a distributor. Without insurance it will costs a lot though.

I understand the pill boxes, too. I am constantly having to change ours around. Terry's aren't so bad, but Mom has several different kinds and colors. She has been doing hers that way for awhile and will not let me change them to 1 big box, so the single week boxes just keep getting bigger and growing in numbers. She likes to keep each pill in a separate box and is constantly going through them and checking them. Drives me crazy because she will drop them and I have to look for them before the dogs find them. Of course, it is always my fault when a box is filled wrong.  smilewinkgrin  Believe me, I am always very careful when I fill the pill boxes and double, double check them all. 

I hope the Xifaxan works for you. Let me know.

Carol


 


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 12/20/2008 7:52 AM (GMT -7)   
Hi Carol and June, just had to jump in here and post as you guys brought back so many memories. The Xifaxan worked great for my husband, along with the Lactulose. He was having frequent episodes of encephalopathy but once they started him on the Xifaxan he didn't have anymore for his last few months until his final decline. For my husband it greatly improved the quality of of his remaining life.

I was just able to throw out all the pills in his pill box a couple of months ago. It was a big one with 4 different compartments for each day. Boy did we go round and round about his pills and how to set up that box. I had already thrown out all his remaining pill bottles a couple of months before. I don't know why, but getting rid of his pills was even harder than giving away his clothes which I starting doing a year ago.

Anyways thanks for the memories........they were bitter sweet.

June, please do take Carol advice........Ask for samples. If anyone knows how expensive medications can get.......it is the doctors. You might want to email the pharmaceutical company and see if they will give you any because of hardship. I know that some of them do that.

Have a great day both of you..........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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/20/2008 1:26 PM (GMT -7)   

Carol, you absolutely amaze me, in caring for 2 people with chronic, debilitating diseases.  I don't know how you do it.  If your daughter has a gate for corralling the 2-year-old, you might want to tell her to bring it along.  If necessary, you can confine the little one to a hallway or another room, with some toys or video.  Anyway, I just wanted to tell you how much I admire you.

Everyone is right about getting samples from the doctor's office (or doctors.)  They get lots.  However, PG, they often have no idea what those meds cost patients, as they don't order them...they just prescribe.  Those that do order things to have on hand get the meds wholesale.  I know from experience that most MDs usually don't have a clue what anything costs patients.



Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 12/20/2008 8:31 PM (GMT -7)   

  tongue   Hi PG & Connie,

It's so good to be conversing with you again. You 'all' help to keep my spirit up!   

You know PG, I still haven't gotten rid of Dad's meds. I don't really know why and it is probably the easiest thing to do.   I have to agree with Connie about the Docs not knowing the cost of meds. Mom's Dr. put her on Detrol LA and it was over $250.00 and she is in her gap and it is not covered by hospice. After the first month, I searched until I got a generic for $6.00. Why not give that to her in the first place???

Do you want to hear what I did this evening?   I wanted a real tree for Christmas, but couldn't afford the prices they're asking this year. There is a man selling them right close to our home. There were 5 trees left today and I waited until there were 2 left before I went over there. One was way to big, but the other one looked OK. Well he said, "I hope your looking for a big tree." I said, "Only if I can get it for $5.00." Of course he laughed and said no way. When I asked about the other tree he said that it was a $65.00 tree. shocked     I told him that I couldn't pay that much and hopefully someone will stop and buy it.  Since I had a few free minutes, I offered to help him clean up the lot for some of the scrap branches. We got to talking while the trash burned and it turns out that he has HepC and chirrosis also. You wouldn't have guessed it. He was very healthy looking (and cute too). He said he takes good care of himself with his wifes help, but is worried about his children watching his illness progress. He did treatment for the HCV, but it didn't take.  His wife helps to takes care of people or just sit with them, so I left them my number and said I sure could use her help sometimes.  I told him about Terry and Mom and we exchanged a lot of information and then I said I had to get back to the house. You know what? He sold me that tree for $10.00!!!  There are truely angels everywhere! 

Thank you Connie, but if Hospice wasn't here to help out and visit with Mom, I'm not sure what I would do. The Chaplan has sure let me cry on her shoulders many times.   I will surely take your advice about the gate. It is so easy for me to get distracted when so much is going on around here.

Terry is having a very bad day. He is in bed now, but I had to feed him today. He just couldn't do it. I hope that Enulose works better tomorrow than it did yesterday and today. He kept saying he was going crazy and that it was over, "It's over."

Well, I'm going to go spoon with him before he is up again. Nights like this really wear us all out.

Blessings to all,

Carol


 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/20/2008 10:02 PM (GMT -7)   

Carol, you had what we in AA call a GMC--a God Motivated Coincidence.  That was God (or a Higher Power or whatever you perceive as one) at work in that meeting.  I mean what are the chances of meeting someone like that selling Christmas trees, and then his wife helps people, and you got the tree for $10?!  I love when stuff like that happens.  It really affirms my faith in people and in God.  And I believe that God works through people.  He does give us what we need. 

I'm so glad I decided to check the board once more before shutting down for the night.  You put a smile on my face and a warm feeling in my heart.  I will pray that you have a decent night and that tomorrow will be better.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 12/21/2008 7:46 AM (GMT -7)   
Carol, Sounds like a made for TV Christmas story. I too believe that God works through people. You both got something from each other, and it may be a beginning of a supportive friendship. You were both doing God's work and probably didn't even know it.

I hope Terry has a better day today. I continue to pray for you both.
Butterflythree
 
There is always hope!


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 12/26/2008 2:27 AM (GMT -7)   
Yes it is Xifaxan, I called and asked for generic brand, but was told there is no generic brand and I have to take it three times a day. The nurse spoke to the pharmacy and they told her if it is a must have pill my insurance will cover it so I guess it will be around 30.00. Which is not to bad. This was not prescribed by my local Dr. it was ordered by Mayo. So I doubt that my Dr. would give me samples. He sometimes gives me a break and makes out the presc. for some of my meds. for twice a day, when I really only need it once daily. That is a big help. DR.s don't realize just how many prescriptions we take. I depend on the pharmacist to check for interactions. I check them too.
As for my poor pup if she ever eats one of my pills that's it for her. I scour the floor whenever I drop even a vitamin. She loves to eat tissue and actually ingests it along with crayons and plastic number and letters, my grandkids leave on the floor.
Thanks for the info everyone.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 12/26/2008 12:43 PM (GMT -7)   

June, that is true that your insurance co. can make an exception for a medically necessary drug.  I believe that the prescribing doctor has to write a letter to the insurance co.  You should have a caseworker at your insurance co.  I would ask to speak with her and find out exactly what has to be done for you to get the med. that you need and have them cover it.

Yeah, the Mayo docs don't seem to keep samples in their offices...maybe because they share the offices with other docs, or they have some policy that prevents them from using samples.  Doctors who have their own practices are the ones who get a ton of samples.  It's a form of advertising for the pharmaceutical companies.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 1/13/2009 3:03 AM (GMT -7)   
Thanks for the post Connie. You were right it was approved although it cost me 60.00 . I have been taking it for a week. Doesn't seem to have made a differense. I have to take 2 tablets three times a day. I really don't like the idea of taking antibiotcs on a regular bases. Whats going to happen when I really need them they not work. I'm confused. Should I continue taking them ? Or should I just continue to repeat things over and over again? june

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/13/2009 5:37 PM (GMT -7)   

June, I'm glad you were able to get the med.  Go ahead and take it on a regular basis as prescribed.  Perhaps it hasn't been taken long enough to feel a difference yet...or maybe it's nothing you "feel."  I've never been on that particular med, so don't know.  That is not an antibiotic normally used for other diseases or illnesses, so you are not compromising your immune system against other antibiotics by taking it.

Hope this helps.


hep93
Forum moderator - Hepatitis


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 1/13/2009 7:40 PM (GMT -7)   
June, Xifaxan is different than the other antibiotics. Xifaxan doesn't go into the blood stream it breaks down in the stomach & intestines, it's main use is for "travelers diarrhea", but works great for encephalopathy.  My husband could never tell the difference, but I could tell it by his behavior. It does work best when it is used with lactulose.
Teresa

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/14/2009 7:48 AM (GMT -7)   
Hello June, My husband was having encephalopathy issues consistantly until they put him on the Xifaxan. After it got a chance to work in his system he had no problem with encephalopathy again. And yes he still had to take his lactulose also. It became one of his regular meds that he took everyday along with the 10 or so others. At least he was at himself and was aware of his surroundings during his last few months.........I feel good about that.

So I agree with the others .........take them as your doctor prescribed. Give them more of a chance to work...........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.

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