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Please tell me it's going to be okay…

Home Demo forums Patient Message Board Please tell me it's going to be okay…

Viewing 9 posts - 1 through 9 (of 9 total)
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    I didn’t want to post this because I didn’t want to bump Sad About Dad’s post.

    Dad definitely has VRE but that’s not what’s causing the fevers. They can’t figure it out. An Infectious Disease offical interviewed him yesterday to find out a lot of personal information about where he’s vacationed, what the extent of his military experience travel was, and other details. They can’t seem to get to the bottom of the infection.

    They are probably going to do a full-body CT scan to see if they can find something.

    His onc told him yesterday, “You’re not going in the right direction.”

    I know how serious this is. They have tried several different antibiotics but don’t seem to have found the right cocktail. The longer this goes, the worse it can get. I know this. I can’t seem to find much information about how bad extended fevers can be on MDS patients.

    He’s in New York with my mom and two sisters. I’m in Virginia and, except for this board, no one understands what I’m going through. I don’t want sympathy. I want to be with people who understand where we can stand by each other.

    I don’t have a lot of vacation time so I don’t know if or when to go to him.

    On top of this, he got the news that his cousin (about his age) died of throat cancer a couple of days ago. They were treated in the same hospital and saw each other from time-to-time. Dad is very emotional over it.

    I am so sick of cancer and related diseases. We have GOT to find a cure. Sad About Dad’s father was way too young, too.

    I’m starting to get sad again. I hope they find my dad’s infection soon and I hope that they find a miracle drug very soon.

    Update 12:30 pm EST: I talked to dad and he’s coughing quite a bit. They’re now thinking it might be viral. They did the CT scan and he hasn’t heard the results yet. Everything’s still up in the air. He’s still pretty depressed, too. I guess he’s starting to say things like “If I get out of the hospital, I want to…” I’m going to call him later and cheer him up.



    Carrie, I hope your Dad gets some good news. This is such a terrible disease and to be so far away from your loved one. Keep supporting your Dad, they need that and know we are all here for you.


    I wish I had the answers you were seeking. I would just say go with your gut feelings as far as going to see your dad. My dad was hospitalized Christmas day…by late that day the doctors were sure he was coming around for the better and my mom was echoing what they said. I posted about literally feeling “pushed” to get in my car and make the drive despite what they all were saying, and I did. My dad passed away about an hour after I got there:( I am so thankful that I didn’t wait.

    Know that he is in my prayers and I pray that God will give the doctors wisdom to find out what the infection is and know how to treat it quickly! I pray also for peace for him and for you and for all your family.



    Carrie ,
    We are here for you . Sorry you have to go through such dark days. I think most of the people here understand what you are going through .Lots of days with fever is not a good thing in special for people with MDS but keep your hopes .Hopefully they will find out what it is. God help you and your family


    Don’t ever feel LIke you don’t want to post something. We are here for everyone and it does not diminish from one person to the next. We all need comfort and support. Hang in there and go with your gut. Don’t have any regrets. Joan



    I remember clearly when my mom had fevers and how difficult it was waiting for the Dr. to determine what was causing them. It’s a very helpless feeling.. I hope and pray the Dr. will find the cause today. You and your dad will be in my prayers.. Pat


    Carrie, keeping you and your Dad in our thoughts and prayers. Hope he feels better soon.



    Im sorry you and your family are going through this. I know what it is like when you live far away from your loved one. You definitely have support here, pass our love and prayers to your Dad.


    B. Greene

    We went through fevers for a very long time, packed in ice the whole bit. This VRE which he has as well does not help things but each time they have managed to pull him through. Hopefully the antibiotics will kick in. I know oral ones never do us any good at all. Did the fevers start after the Vidaza?

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