Hi! Please do what you can to take care of yourself, too. You will be of no use to them if you get sick 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.
Hi Connie & everyone,
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. 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, 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.
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. 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, 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.
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.
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.