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New here and my story……

Home forums Patient Message Board New here and my story……

Viewing 9 posts - 16 through 24 (of 24 total)
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    Take care of yourself Butch. Will be keeping you both in our thoughts and prayers.

    Originally posted by gemloyear:
    Butch,You need to take care of your own health, as your wife needs you so much right now.Pericarditis is nothing to mess with, you need your rest.Evidently your company does’nt give emergency leave for family health issues? I’m sorry our wife is having so many problems, have faith that things will get better. She seems like one strong lady. My husband also sleeps more during the day, he has so much fatigue gets up at 3am. and can’t sleep until later in the day. He had pericarditis years ago I remember how painful it was. take care, we’ll be praying for you and your wife. Ellie

    Yes, my company does give emergency leave but it is unpaid. We lost my wife’s income so I have to work. I can’t afford to miss a day right now. I’ve used up all my sick and vacation days already.


    OMG Butch. I’m sure you’ll have no problem coming up with the lyrics to your country tune!! How awful….just everything!! I’m so sorry. Like Ellie said….take care of yourself. It must be so difficult working….try not to wear yourself out.

    Hopefully, things will get better quickly now that the source of your wife’s blood infection was found to be her line. With a new line in place, eventhough it is a temporary line, and antibiotics to fight the infection she’ll be feeling better soon.

    Try to get some rest…if possible. You need it.

    take care, Jody


    Hi Butch, hopefully things are improving with your wife, you’ve BOTH had a rough time of it. I say BOTH as it’s just as hard on you running round with all of this stuff in your head.
    As Jody says, it’s good that the’ve identified the source of infection as they should be able to clear that up fairly quickly.

    Just a couple of thoughts which may make things easier (not sure how practical these are!)

    I apologise as I don’t know what you do for a living, but is there any way you could work from the hospital ? I know it sounds crazy, but my fiancee has just been through a BMT and I did spend a lot of time at the hospital. I was extremely fortunate in that I have a very understanding employer who allowed me to take paperwork into the hospital which I could sit and do spread over the day and evening. Is it worthwhile suggesting something similar to your employer ?

    Is there any way you could borrow some money to cover you for some extra sick days ? I wouldn’t necessarily condone getting into huge debt but sometimes with these things it’s better to live for today as it were.

    I know in my circumstance when I wasn’t at the hospital, my mind was working overtime, yet once in the hospital, as poorly as my fiancee was, I was much much calmer.

    You need to look after YOU Butch as it is a pre-requisite for looking after your wife.

    God bless both of you and wishing your wife a speedy recovery.

    I can’t afford to miss a day right now. I’ve used up all my sick and vacation days already.

    that has to be hard. My dad is the same way. he is on the thin ice with his sick days. He stays home when he has too, but at times it effects his income.

    He is the breadwinner and still needs to be making money to pay bills. Thats a headache, but at the same time. He cant go to work alot!

    I hope your wife gets better!!!


    I appreciate all the feedback. I work for a law firm. I am one of the “computer guys”. Unfortunately, no way to do my job from there. I am now paying a bit more attention to myself. I even visited the doctor yesterday.

    Something MDS/GVHD related. As I mentioned earlier, the GVH attacked my wife’s eyes and she just sees shadows. To speed the healing process, the eye specialist made a syrum from my blood. Apparently they can make it from anyone’s blood and it is easiest to ask a family member. I gave 4 vials of blood and he made a 1 month supply. We’ll see how they work in the next few days.

    We noticed a mood change last week. She gets very anxious and is a bit nasty. She is usually a sweetheart. (Of course she has the right to be grumpy at this point.) That is also when her liver started worsening as well. One of the nurses realized that that is when they took her off morphine. They have put her back on a low dose of morphine again and her demeanor has gone back to normal.

    I asked the doc if the morphine could have a positive effect on the liver. He said there may be a correlation and we will have to wait and see.

    On another note, my 14 year old step daughter wrote an email all on her own to the local radio station pleading for help. I hope you will indulge me to post it here. She is an amazing girl.

    hello my name is casey XXXXXXX and i was just wondering if i could just take a minute of your time to ask a favor of you guys. my mom is very
    sick in the hospital with a disease that is alot like the type of cancer luekemia. she has a 20%-40% chance of living and we have alot of bills to
    pay in result in being in roswell in buffalo for so long. this is when i emailed kiss 98.5 and told them my story and idea to ask what they could do to help me. in case they didnt respond back to me, i wanted to email you the same story. seeing that i am only 14 and i cant take matters into my own hands by myself, i am going to try and get someone to help me fufill my dream
    of helping my mom. since in my opinion i am a pretty good singer i wanted to think of an idea for a fundraiser that involved singing and helping out a good cause at the same time since singing now a days is the only thing that makes me want to get up out of bed everyday. so i was thinking hard and harder when suddenly i thought of the idea of getting a hold of a recording studio and asking if we could put our heads together and make some cd’s and sell them in benefit for my mom. i have done my research and i know that this can be a very long and expensive process and that is why i am giving you my word that after i sell a bunch of cd’s i would do my best and try my hardest to pay back your studio. so if you dont have the time/ money or whatever and cant help me that is totally fine and i totally understand. one thing is if you could please get back to me and at least let me know that you were thinking about me and just cant do it. so either way please write me back and consider helping me be a hero to my mom just like she is being a hero to me right now and staying strong and trying her hardest to stay alive.
    you very much,
    signed hoping and praying… (casey) p.s. if you need to get a hold for me for any reason, you can call my cell phone at xxx xxxx at anytime after 3:00 since i have school before that.
    thank you again

    The recording studio called her and said he would help her out. He asked that her step Dad call him. I did so today and he wants to meet her and has some ideas on what to do. He said he can probably get the radio station involved as well. I will try to set something up for this weekend.

    This kid is truly amazing.
    It touched my heart when she told me what she wanted to do…….

    Again…thanks for everything, listening etc…..



    Butch, What a neat young lady. You and her Mom must be very proud of her.I am so glad the station responded so that she has the chance to do something productive to help and maybe something exciting for her.


    Hey Butch,

    Wow, that is such a wonderful thing that Casey did and that the station responded! Gives you faith in humanity! I personally know how hard it can be on a daughter to have mother (she had MS) that is so ill. Her being able to be proactive definitely helps…

    I hope that you are doing better. I am sorry for all of the physical stress that you are going through. These kinds of situations tend to affect you inside & out. Be strong, have faith & take good care of yourself! Don’t loose sight of that honeymoon!

    You and your family are in my prayers.



    That is truely an amazing story!! I think you both should email this to Oprah, she seems to love to help people in difficult times. Make sure you state in there that time is of the essence. May God bless you and your family in this difficult time.


Viewing 9 posts - 16 through 24 (of 24 total)

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