[SusanJ]

Thanks Russ,

I am so depressed today about my dad. He doesn’t want to eat anymore and he just sits with his head in his hands and cries. He is taking Prednisone 4 times a day and up to 8 Colchechine a day for his gout, but nothing is helping. The colchechine is causing diarrhea, and I am wondering if all the medicine is what’s making him feel so bad. I am afraid that he is giving up.

[SusanJ]

Kathy,

What kind of infection does your dad have? My dad came home from the hospital last Friday. He has always dealt with gout but now he has tophaceous gout (?) and I don’t think he will ever get rid of it. He has to walk with a walker because he is in so much pain. He is so depressed that he’s not getting better and he cries a lot. It just breaks my heart.

[SusanJ]

Carrie,

Thank you so much for the kind words and advice. I’ve been going through so many emotions during this process, and one of them is that my daddy is too young to die, and then I see that your dad was only 54. I want my daddy to live to be 100, as I’m sure that you wished that your dad could have too. But then it wouldn’t be any easier to let go then either. I know that none of us are promised tomorrow, and I know that we have eternal life through Jesus Christ. That’s the only thing that keeps me going through this nightmare. I know where my daddy is going, and I know that I will see him again one day, but that still doesn’t keep me from wanting to hold onto him. I am praying that he will soon get the peace that he so desperately needs. I can’t stand to see him cry and be so afraid. We have always been so close and it just kills me to see him like this. All of the special people on this forum have been so kind and helpful to me. It’s hard to believe that just eight months ago, I had never heard of myelodysplasia, and now it’s the most dreaded word in my dictionary. Thank you Carrie, I may need you again! God bless you!

[SusanJ]

Dear Marla, Kathy and Russ,

God bless you for being so kind to me. My daddy’s fever went up to 103 last night and the doctor said that htere was still no improvement. He is going to adjust his antibiotics today. He said that there was no way that daddy could home home until the fever breaks and then IF he comes home, he will have to have home health come in and administer antibiotics. The report from the skin biopsy hasn’t come in yet. Everytime I talk to daddy he just sobs. I’m beginning to have my doubts that he will ever come home. His left arm is beginning to swell now. How will I ever get through this?

[SusanJ]

Carrie,

Congratulations on your upcoming wedding! I have a question for you that I hope you can help me with. I hope this won’t make you sad, but how did you get through losing your dad? My dad is very sick now and in the hospital, and I can’t imagine being able to survive if something happens to him. Do you have any advice for me? God bless you.

[SusanJ]

Hello friends,

No good news yet. My dad is still in the hospital. Still running fevers as high as 102 degrees, and his cellulitis has not responded to any of the antibiotics. The doctor decided to go ahead and do a biopsy of the skin and also did a bone marrow biopsy at the same time. He changed daddy’s antibiotics for the 3rd time yesterday. Worst of all, daddy is so depressed because he isn’t getting any better and he cries a lot. That just breaks my heart. He is so scared. He has had 2 red blood cell transfusions and 2 platelet transfusions since he has been in the hospital. I am beginning to think he may never leave there. I am so afraid. I have cried so much that my eyelids stay swollen all the time. Please pray for us. I’m not ready to lose my daddy.

[SusanJ]

Thanks for the kind words Kathy. My dad’s doctor said that it is too risky to do a skin biopsy on my dad. He has been on IV antibiotics for 10 days and is still running fevers up to 102. My dad also has RAEB and his lasy bone marrow biopsy showed 6% blasts. He was supposed to have had a BMB last Friday but this infection knocked that out. I will pray for you and your dad. God bless you. God bless us all.

Susan

[SusanJ]

Dear Jan,

I am so deeply sorry about your loss. My dad is in the hospital with bad case of cellulitis . He has only been there for a week and already we are all so exhausted. I can only imagine how exhausted you must be. I am so scared. Daddy doesn’t seem to be getting any better. Every day I think, I can’t handle this. God bless you and your family. I will keep you in my prayers.

Susan

[SusanJ]

Ellie, yes my dad’s doctor is very well educated on MDS. The hospital is not a center of excellance but is a great hospital. My dad’s doctor consults with a doctor at a center of excellance hospital, so I am assured that he is getting the best of care through very good doctors. This is just the first time that he has been hospitalized since his diagnosis and everything seems to be happening and changing so fast. The doctors decided against Revlimid because daddy has several other abnormal chromosomes as well as the 5Q. I’m not even sure at this point if daddy will still want to go through with the Vidaza, since this infection has been so bad.

[SusanJ]

Thanks, Elle, daddy is having a really tough time. He will be getting his first platelet transfusion today. He has little purple spots all over his legs and he is itching like crazy. I feel like I am losing my mind. Any info that you have is greatly appreciated.

Susan

[SusanJ]

Do all of you taking Vidaza seem to think that the tiredness is worth all the trouble? Does the good of Vidaza outweigh the bad?

Susan

[SusanJ]

Thanks, Russ. Please tell me your story and anything you think I need to know about Vidaza. God bless you!

Susan

[SusanJ]

Thanks Maureen,

I’m so happy to hear that your dad is responding to Vidaza. It’s looking better and better to me. At first I just didn’t want anything that would possibly make my dad feel worse before he felt better, especially when this is not a “cure”. But so many of you have given me positive input on it’s use. Please keep encouraging me, I need it badly.

Susan

[SusanJ]

Peggy,

I’m thrilled about your Vidaza results! Congratulations! Hearing news like this makes me optimistic about my dad’s option to take Vidaza.
I will keep you in my prayers. God Bless.

[SusanJ]

Loretta,

My dad has had 3 transfusions since April. I haven’t really paid much attention to how much time in between transfusions. There is so much to remember and try to learn about this disease. Thank goodness for this forum and all you wonderful people that have helped me!

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