MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

bad news….

Home forums Patient Message Board bad news….

Viewing 15 posts - 1 through 15 (of 15 total)
  • Author
  • #10347

    Well, I don’t know where to start…
    if you read my last post, you know I took my dad in for some iv fluid and 1 unit of blood on Fri (25th), because I called his hemo. office and they asked what I thought he needed and that is what I told them, so they ordered it. I also asked for a urine dip because he has been so inconinent lately. they ordered that. They also ordered blood work for Monday (28th) to see if there was any changes.
    he did not feel any better this weekend and this morning I met him at the dentist office (the rehab driver took him and met me there) and he looked like he**!! He was wiped out.
    Luckily, the nurse at rehab decided that since she had not heard results from hemo. office that she would do a urine dip there. He has a raging UTI!!!!!
    the hemo. office was called and they just said his primary doc there can handle it and by the way, our test shows a UTI also. I called the hemo office, (as did the rehab place because his doc at rehab wasn’t reachable, hemo. office didn’t seem concerned.) talked to susan the nurse and I said, “I am surprised you guys don’t care about an infection, I thought that was pretty serious with my dad’s condition and you would want to have some part of it.” the reply was “Dr. Z handles his blood work, that is all.” I just said, ok, I completely understand what you are saying” (they don’t give a hoot) and hung up. That was to be my last conversation with that office. I was completely prepared to call a different doctor in the morning, beg him to treat my father and get his records from dr. z.
    I immediately drove my father to the VA emergency room where he was admitted for a UTI and dehydration. He is there now on IV fluids and antibiotics.
    Now, the bad news. I went out to my car after a few hours in the ER to call my kids. I had a message from hemo (dr. z) office. The nurse whom I spoke to previously in the day left me a message that went thus: “We just got some lab work back on your dad and it appears his MDS has progressed. He is now showing 17% blasts [he had none before] and dr. z isn’t in today, but he will review this new information and want to talk to you about it tomorrow. You can call me at —- if you have any questions. I guess this would explain his recent decline in health.”
    You can bet I called back and told her I was very diappointed in the way the day went and that right now, my father is receiving medical attention that he needed before. She just said, “I am sorry we disappointed you today and I don’t know why my NP wouldn’t prescribe any treatment for your dad today other than the fact that she was pretty overwhelmed today. These results certainly change things and you will need to talk to dr. z tomorrow because this usually means some pretty heavy duty chemo and I don’t know if that is something you or your dad want to try.” Blah Blah Blah.
    I am sick about this whole situation and I will be getting him care somewhere else, but now I have to listen to dr. z tell me all about it. If I don’t answer the phone, he’ll probably just leave me a message like his nurse did, that my dad is dying and don’t call us, we’ll call you. Have a nice day. Good bye.
    By the way, I really think my dad is dying. He looked horrible, hasn’t eaten or drank, is emaciated, and now add to that a raging UTI and a new turn in his MDS.
    Things aren’t looking so hot right now. Please oh please pray for him, for comfort and peace no matter what!! This board holds me together more than I can say.
    You are always in my prayers,


    Dear KarenK,
    I don’t know what to say, except that I am so very sorry your dad has taken a turn for the worse. I know how you must feel, because I am a daughter too. I lost my sweet dad 5 years ago from heart failure. When I read letters like yours, I just want to cry; because I know how badly you hurt inside. Perhaps I can tell you a few things that will make you feel easier.
    First, take one thing at a time. Even a terrible UTI can be fixed. Your dad is still alive. Maybe they can even do something about the MDS (Revlimid might be approved in January). Secondly, just for the heck of it, start your dad on Essiac Tea when he recovers. Oh, it can’t hurt him. My mom was doing pretty bad with MDS. She started on Essiac about a month ago. Karen, she is FEELING BETTER!!! Maybe it won’t work, but even our fine oncologist/hematologist recommended it! So far, so good!!! This may represent some hope for your dad.
    Lastly, try to hope for the best. My mom has a saying that I’ll share with you. She says, “Things never turn out the way you think they will, and sometimes they turn out BETTER!”
    You are certainly in our thoughts, Karen. And you are in our prayers too.
    Yours in friendship,



    were they giving you the blast count from a blood test or a bone marrow biopsy

    when my dad had an infection his peripheral blood blasts went up until the infection was cleared

    i am so glad to hear that you are getting a new team of doctors – your dr z is worthless and a disgrace to his profession



    Karen, Sorry to read about your Dad’s condition. But keep praying and hoping. It is always darkest before dawn but dawn will surely come.


    Dear Karenkay,
    My prayers and thought are with you and your family. I personally know the pain and frustration of not only losing my parents but losing a parent and suffering from uncaring medical doctors. I will not go into details but I do know the agony you are feeling. I am assuming that the report on excess blasts was a results of a blood test and not BMB so there is reason to believe things will soom start looking brighter for you and your father. I know it doesn’t seem like much but you are a loving caring daughter and I am sure that has made your father’s illness a bit less burdensome that it would be if he went through everything alone. He is fortunate to have you and I am sure the reverse is true. God bless you and your family.


    Hi Karen,

    I am so very sorry for you and your Dad. I can speak from recent experience when I say that I know how you feel. 2 weeks ago we rushed my Dad to hospital. He also had a UTI. His blood counts were very high. Most of them were in the Critical Zone. The hospital sent him home!!! “There is nothing we can do for him here.” He lay like a rag doll all day Saturday bleeding from his bowels and from his bladder. Mom did nothing but laundry as he soaked one set of sheets and pyjamas after another. The next day Mom phoned me and asked me to take them to the hospital where Dad’s Kidney Team work out of in Guelph. Well, after one week of intense intravenous antibiotics and lots of IV fluids for severe dehydration, we had a Family Meeting with his Urologist, Endocrinologist and his Nephrologist, and a Dietician. Dad is in Kidney Failure and he had E-Coli Sepsis and C-Diff Colitis. He needs Dialysis now. He was a VERY sick man. They sent him home. I thought I was going to be sick when they told us we had to take him home. He still looked so skinny, pale and emaciated. Anyhow, here we are 4 days later. Dad got up out of bed yesterday and tried to help Mom with the dishes, did some tidying up, had a bath, made an attempt to get dressed (but Mom put him back to bed). He sits up to watch TV now instead of laying down. His colour is back and he is eating. It is a Renal Diet now instead of his normal eating habit but he is EATING lots. Opa got t


    Hang in there, Karen. I hope you’ll be able to get a new doctor soon. My friend was right, that guy sounds like a real jerk.

    I think you got some good advice here about blast count with infection in his body. That may very well go down once they have the UTI under control.

    Take care.



    Thank you all for the encouragement and prayers. It means so much to me right now!!
    Today, the weather was horrible, but around noon I made the 60 mile drive to go check on my dad. He is responding well to the antibiotics, he is receiving two more units of blood and his hydration is coming up. So, on that front, things look pretty good. The rehab facility is ready to take him back as soon as he is stable, which they say could be as soon as tomorrow. On Thursday, his friend, Kathy, from Chicago is coming for a short visit. She will be here until Tuesday and I am going to take the weekend to do some Christmas shopping.
    As you read above, dr. z’s office left me that message yeaterday and upon speaking with the nurse, she said that dr. z would call me this morning. He never called today at all!!!! Can you believe it? Of course you can.
    So, I made an appointment with Dr. Walters (thanks Patti) and they will handle the switch. I decided even if I don’t like the new doc, at least I don’t have to deal with this one anymore. I am willing to try anything. So, no more dr. z!! We see new doc on Dec. 14th. This will work out fine since he is getting two units today and the 14th will be about two weeks.
    Thanks again everyone, I just love you guys.
    My prayers are with all of us,
    I had to save this and post today, for some reason the forum wouldn’t let me post yesterday.
    My dad got out of the hosp. today and is back at rehab. He is on antibiotics for the next two weeks, so hopefully that will help. He seems to be feeling better. Keep up the prayers my fellow warriors wink
    never heard from dr. z office today (wed) either, go figure


    Hi Karen,

    Thinking of you and your Dad…Hope Dr. Walters is more reliable than Dr.Z!! Glad to hear that your Dad is responding well to antibiotics, hope things keep getting better. smile




    Glad to hear things are looking up. I hope Dr. Walters is as wonderful as the guy we saw yesterday. What a relief.




    I am glad to hear that your Dad is responding to the drugs. All the best of luck with the new doctor. I will keep praying that things go well for you.



    Hi Karen,
    I haven’t been able to post for a VERY long time, lots of computer trouble. Anyway, I’ve been trying to log in everyday.
    I sure feel for you and what you are going through, it’s very stressful to say the least, anytime anyone is dealing with a life threatning illness. It absorbs every single ounce of your being.
    I truly hope that your dad is happier with his new dr and things turn around for the better. I couldn’t stand my mom’s dr but Mom really liked her and valued her “bluntness” or as mom said ‘She’s very honest with me, I appreaciate that’. She never offered Mom any hope. As it was, I suppose maybe she was right, Mom progressed very quickly had she decided to try chemo I think she would’ve spent her remaining days being very sick, and yet I read postings from other members who are her age, have RAEB 2 and have had success with chemo. It doesn’t matter now, what matters is that Mom did what she wanted to do. Best of luck to you and family as you continue on this journey.



    Hi Karen, I hope that things turn around for your
    Dad soon. His new doc sounds like a big improvement over zzz. I will keep dad and you in my prayers. And you take care on that long drive.Ellie



    Just curious. Where are you driving from to get to Boise? I’m aiming to get us back there in the next year. Well, not Boise. Somewhere out in the sticks. But I’ll have to shop in Boise or Nampa.



    I so glad you dad is feeling some better. The only advice I have for you is to do the best you can to love your daddy and tell hime so now. I didn’t expect to lose my daddy so suddenly, but Iam glad I made sure he knew I loved him. Even til his last breath. So love him now, and take care of yourself. Wish I had better words of wisdom.

    Daddy died Nov. 14, 2005 sudden stroke from brain tumors the sorry doctors never knew he had til it was too late.

Viewing 15 posts - 1 through 15 (of 15 total)

Register for an account, or login to post to our message boards. Click here.

  • You must be logged in to reply to this topic.



Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert