Update from Buffalo
Home Demo › forums › Patient Message Board › Update from Buffalo
- This topic has 12 replies, 1 voice, and was last updated 18 years, 10 months ago by gemloyear.
-
AuthorPosts
-
June 23, 2005 at 3:55 am #7090CarrieMember
Hi all…
quick note from Buffalo. My family is keeping me busy busy busy!! Almost as soon as I flew in (11 pm Sat night), my father ended up with a fever. So I drove him to Roswell at about 1 am. I was up until at 4 am.
His C. diff is back and it’s taking its toll on him again. He’s suffering so badly (physically and emotionally). He has no control over his bowels. He’s really having a rough time now.
He DID finally get up and take a walk with me today (his PT asked him to do it yesterday but he’s afraid of having a bowel problem and not making it anywhere safe in time). However, he still has a fever and the Flagyl he’s on apparently isn’t making a dent in the c. diff.
It’s definitely rough on him and it’s hard for me to see.Mom, on the other hand, is doing really well. She went through her surgery on Friday very well and got home on Sunday. I’m taking care of her during the morning and afternoon, then visiting dad in late afternoon and then coming home to make dinner. She’s keeping me on my toes!
Tomorrow my mom is going to get on the message board and do some reading. I’ll introduce you to her in a message. She’s a wonderful, strong, and very brave person. I can’t wait for you to “meet” her.
P.S. OOOPS… Nevermind this P.S. … the FDA didn’t approve Revlimid. I got my info wrong .
Thanks for listening,
CarrieJune 23, 2005 at 7:57 pm #7091rileyMemberHi Carrie,
My father has had C. diff four or five times now. It’s so persistent and it’s hard to get rid of it for good. I’m new to this forum, but I have a couple of thoughts for you in case you haven’t heard them already from someone else here.
Has your father’s doctor called in infectious disease docs for a consult? C. diff does fall under ID, and we found the ID specialists to be very helpful. Sometimes, for some people, C. diff is resistant to Flagyl and another med needs to be used. One of the times my father had it, they gave both Flagyl and Vancomycin and that worked within a couple of days.
I don’t know if anyone has mentioned to you that beside feeling yucky, C. diff can cause depression. When my father had C. diff, he got really down. I mean very depressed — ready to give up his fight. We found it helped to remind him that he’d be feeling better physically, mentally and emotionally within a few days when the C. diff was under control. And that was always the case.
There are a few other things you can try to treat the C. diff besides meds. My guess is you’ve heard about yogurt and lactobacillus pills, and those may be helpful.
My father’s doctors consulted with a GI specialist, and she recommended a product called DanActive instead. It’s made by Dannon and sold in the grocery store near the yogurts. This GI doc believes in it so strongly, she went out and bought eight bottles of it for my father and brought it to him in the hospital! It’s kind of like a thin milkshake, and it comes in several flavors, all of which taste pretty good. They look like small milk bottles (only 100mL each). Each bottle contains 10 billion active cultures — that’s better than yogurt or lactobacillus. When my father had C. diff, he drank two of these per day, and it really helped. He now drinks one every morning with breakfast, just to keep the good bacteria in his digestive tract. Do I sound like I’m doing a commercial for DanActive yet?
My father’s doctors said they can’t say C. diff is gone until they have three negative tests in a row, and those tests have to be at least a week apart. Once they think it’s gone, they tend to stop the Flagyl. Each time they’ve done that, my father gets C. diff again within three days. They’ve decided just to keep him on Flagyl, and he hasn’t had C. diff since. Our doctor says that for some people, once they have C. diff, they’re lifers on Flagyl. They consulted with ID, and the risks to staying on Flagyl are few compared to the benefits of it.
It sure does sound like you have your hands full caring for both of your parents right now. I care full-time for my father, and I can’t imagine trying to care for my mother in addition. You and your parents are in my prayers.
June 23, 2005 at 9:22 pm #7092gemloyearMemberriley, Very helpful info. thank you.
EllieJune 23, 2005 at 10:56 pm #7093TerriMemberEnjoy your time in Buffalo and Hope your Dad Starts doing better
June 24, 2005 at 12:47 am #7094ButchLParticipantI just met Carrie at the hospital. She is a sweetheart.
Carrie…Anything you need, just call. It was a pleasure to meet you!
June 24, 2005 at 1:39 am #7095sarahMemberHi Carrie, enjoy your time in Buffalo. Hope your dad feels better very soon.
Take care,
SarahJune 24, 2005 at 3:31 am #7096KathrynMemberHey Carrie, just wanted to send you & yours my best wishes. I am so glad to hear that your mom is doing well & hope that your dad will be feeling better and get to go home soon. Being so ill makes the strongest of men so humble… Pulls on the heartstrings to see them that way….
Take care & enjoy your time w/ your family….
xo,
Kathryn
June 24, 2005 at 6:30 am #7097KATHY1MemberCarrie,
So glad you are able to spend time with your mom and dad. Enjoy it! Sounds like you take after your mom. Wishing everyone feels better soon.Kathy
June 24, 2005 at 6:40 am #7098CarrieMemberHi all!
I’m very tired so this won’t be long. It’s been a loooong day.
Dad’s fever was down tonight and his c. diff culture came back negative for the first time since he got there!
I’m going to print this thread and let my mom read it because of all of the useful information.
I didn’t read through it all tonight but thanks in advance.Butch, it was nice to meet you, too! You’re a very positive person. Thanks for sharing and I’m here if you need to talk! By the way, if I call you Bruce, I’m sorry. I don’t know why I keep thinking that’s your name!
Good night everyone,
CarrieJune 24, 2005 at 12:56 pm #7099TerriMemberCarrie and Butch, Its kind of nice to see members meeting each other and extending the support personally.
June 24, 2005 at 6:29 pm #7100KathrynMemberI agree Terri…. I was thinking about how long I have been a member of this forum and it really hasn’t been for very long, but I feel I have known you all for such a long time. That personal support is such a special gift to share.
Carrie, I am glad that your dad is doing better! Hopefully he will be home soon!
Kat.
June 24, 2005 at 11:40 pm #7101shirlsgirlMemberHi Carrie,
So glad to hear the good news abour your Dad! Sounds like he’s doing much better, yay! Also, glad to hear that your mom is doing well after her surgery! Enjoy your stay in Buffalo…hey, Is it super hot there right now? I’m not too far from you and it’s 42 degrees celsius with the humidex (not sure what that is in farenheit…but man it’s hot)
Take care,
Jody
June 26, 2005 at 3:43 am #7102gemloyearMemberCarrie, I’m so glad to hear your Mom is doing well, And hope your Dad will be home soon with a good recovery. Your Mom & Dad are lucky to have such a caring daughter.
Ellie -
AuthorPosts
Register for an account, or login to post to our message boards. Click here.
- You must be logged in to reply to this topic.