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New here and my story……

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

Viewing 15 posts - 1 through 15 (of 24 total)
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  • #5608
    ButchL
    Participant

    Before I begin, I am trying to keep it short and sweet which is difficult. And I am definately no doctor!

    My wife (42) was diagnosed with MDS 7/04. From there monthly visits to Roswell Park Cancer Institute. Her platelets were steady at about 80,000 until 11/04. They went dramatically down. As of 12/23, we went for platelet transfusions every day until she was admitted for a BMT on 2/7. She had the BMT on 2/15 and was back at home 3/2. Her brother was the donor. She was home for 1 week and developed a bad sinus infection. They hospitalized her again on 3/9 or so. The next day her eyes became very red and scratchy to the point where she could no longer open them. This was the onset of extreme GVHD. As we have been told, due to her brother having a transfusion 1 year ago, his cells were “used to fighting”. They attacked her vision, GI tract, hands, feet, kidneys and liver. Their first concern was the liver. They managed to get that under control and then had to work on the GI tract. Again, got that under control. Now we are working on the liver. Her bilirubin was 42 last Thursday and they gave her a low chance of survival. Friday, it started to drop. She is now at 24 and coming around. Her eyes are in the process of healing, all she can see right now are shapes. The eye doc says that it is just a matter of keeping them lubricated and they will heal.

    To accomplish all this, they have suppressed her immune sytem again to slow down the fight between her cells and her brother’s. My concern now is that when she starts producing cells again, will it come back just as strong. She has a really long road to go but she is a fighter.

    As a side note, we were married January 21 and she went for the BMT 2/7. The honeymoon is waiting so she has to get better so she can come home.

    Thanks for reading if you got this far. I am doing most of this by myself and I thought if I wrote it all down, it would help…………

    #5609
    doreen
    Member

    Butch,
    She must be very lucky to have you in her life. She also must be a fighter!. Please keep us informed, it really sounds like the worse is behind her. I also was diagnosed a year ago and am waiting for a transplant. Best of luck to both you, I always believe that prayers help and will say them for you and your wife also.

    #5610
    Terri
    Member

    Butch, Will add you both to my prayers and I hope all Starts coming around for you both.
    God Bless

    #5611
    frank
    Participant

    Butch,

    sorry to hear all about your wife, hope she can get better soon. it must not be easy for both of you… i also was diagnosed a year ago, but no chance for the BMT(no match found in my family).
    it must be much harder for her to accept all these changes, be her side is your big support…

    hope every worse thing will behind you guys..

    #5612
    Suzanne
    Member

    A lot of people here will understand what you are going through. A new marriage is certainly a strong incentive to fight as hard as she can. Good luck to you both and I hope you don’t have to wait too long for that honeymoon!

    #5613
    Bec
    Member

    Hey Billy,
    My thoughts and prayers will be with you two. I hope this site will help you as much as it has helped my Dad and our family.

    Something I like to point out to people is the neat search button at top of forum page. You can type in words of questions you may have and it will give you site members experiences. It took me a year before I found it.

    Hope your new bride keeps getting better and take her on that honeymoon….

    Bec

    #5614
    Kathryn
    Member

    Hey Butch, you keep thinking about that honeymoon and remind her as well. Power of love, positive thinking and beautiful visions!!!

    I have rec’d. so much support and information from this forum. I will be praying for you both and wishing for much better days ahead.

    Take good care,

    Kathryn

    #5615
    April
    Member

    Butch ~ I will keep you and her in my prayers. This is a great place to be for venting, advice, etc. Please keep us posted as to how she is doing.

    #5616
    Carrie
    Member

    Butch,

    Can’t help you much but my dad is being treated at Roswell, too. Dr. Wang is his oncologist. He also gets seen by Dr. Baer. For his lymphoma, his doctor is Czuchman.

    Dad’s situation is very different from your wife’s. I hope that she’s doing well.

    carrie

    #5617
    mommachkate
    Member

    Butch,
    I hope your wife doing much better, and soon you will be able to plan that honeymoon.Please inform us, how is she doing? Best of luck with the rest of her treatment . Kate

    #5618
    ButchL
    Participant
    Quote:
    Originally posted by Carrie:
    Butch,

    Can’t help you much but my dad is being treated at Roswell, too. Dr. Wang is his oncologist. He also gets seen by Dr. Baer. For his lymphoma, his doctor is Czuchman.

    Dad’s situation is very different from your wife’s. I hope that she’s doing well.

    carrie

    Carrie:

    My wife started with Dr. Wang until she was handed off to the BMT team. She still keeps an eye on her now and then. She was great with my wife. Your dad is in good hands.

    As for my wife, her bilirubin count in her liver is steadily going down. It is currently at 24 and drops a point each day. It was 42 last Thursday. We are on our way down to 1.

    She is responding better now but she is getting anxious and paranoid. This happened during the actual transplant as well. She tries to sleep all day when someone is there so that she can stay awake at night when we can’t be there. She is afraid to go to sleep without someone there. I will stay Friday – Sunday night at the hospital. Weeknights are just too hard with trying to work at 8am.

    I am hopeful that once her immune system starts producing this time that the GVHD won’t come back as strong. I am also hoping that as the bilirubin goes down and they decrease meds, she will be ok by herself at night. I am on the verge of losing it. Work/sleep/hospital. I just need a day off but will be there as much as I can for her. I’ll have plenty of time once she gets back home………

    Thank you all for your thoughts and kind words. I wish you all the best as well!

    #5619
    sarah
    Member

    Hi Butch, welcome to forum. Will add your wife to our prayer list. Wishing her well.
    Sarah

    #5620
    LRG
    Member

    Hi Butch,
    I know your having a hard time and I’m not sure how to help you cope with any of that. But is there any one that can sit with her to give you a break?? I can’t imagine doing everything your doing and still holding down a job. My dad and stepmoms situation sounds a little similar. they got married (had been dating for 11 years!!) but finally decided to get married so she could have power of attorney and everything right before his transplant. I know she is going through a really rough time right now but try to keep in mind that the dr’s told my dad that if he had GVHD then he had a less chance of reacurrance. I know she is miserable but maybe there is a positive side to all of this horrible stuff she is going through. Try to keep your hopes up. I will be praying for that much needed honeymoon for you two!!

    Take care,
    Lori

    #5621
    ButchL
    Participant

    UPDATE: Her bilirubin is like the stock market. Up and down from day to day. Last week was trending down all the way to 24 from 42. So far this week, up to 33. The doc says she also has a blood infection and they had to remove her “semi permanent” lines as they had bacteria in them. She now has a “temporary” line. The difference in lines from what I understand is one lasts several months and the other is good for a month or so. She has no strength left and still cannot see. The eye doc says that it will take months before her site is better. Currently she just sees shadows.

    Now to top all this off, I woke up at 4am Monday with severe chest pains. After a 911 call, 2 nitro glycerine pills, shot of morphine and an anti-inflamatory shot, I am back to work. Turns out I have peracarditis which is an inflamation of the sack around the heart. Hurts when I breathe. On ibuprofen therapy to stop the inflamation. I am supposed to be resting but I am out of leave so here I am at work trying to keep the machine going and pay the bills.

    I think when all this is over, I will need to write a country song about my experiences. Don’t you think ?

    #5622
    gemloyear
    Member

    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

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