[Donna]

Dear Sad, It’s not fair is it? — I don’t know what to say to make you feel better. I can say — as unbearable the loss of my mom is — it was harder to watch her suffer, and when her time came, she looked to peaceful, the pain was gone. If there is no miracle to be — I pray that he is comfortable. I’m so sorry sad. Hang in there.
I’ll be thinking of you.

Donna

[Donna]

Hi Dawn, I’m sorry I don’t know anything about Vidaza.
I’m sure others on the panel will be able to help you.
It’s ok to have transfusions every 2 weeks, he’ll feel better. Try not to worry, I’m sure your Dr. we’ll figure out how to help your dad.

Take Care,
Donna

[Donna]

Hi Barb, Like Eve mentioned it varies, everyone is different. Mom started at every 4 weeks and then after about a year it became every 2 weeks, The Dr told her that what would happen eventually they wouldn’t be able to keep up, the RBC would just drop too rapidly.
That was Mom’s experience, don’t think just because someone is in need of transfusions more frequently that they are going to die, that is not neccarsily the case.

Donna

[Donna]

Awesome news Jody!
You all must be very happy.

Donna

[Donna]

Hi Barb, I can’t speak personally as to how it feels but I can relate to you how mom would feel. When she passed her hemo was 6.9, they had just ordered some blood for her, she didn’t make it. We could always tell when it was getting close to transfusion time, she would become very breathless, very difficult to move, tired. She always tried to fight it though, but, it always won.
Her main problem with the low hemoglobin was breathing, she said it felt like she couldn’t take a good deep breath.

Donna

[Donna]

It’s very sad April when there’s nothing anyone can do.
I hope your mom is comfortable and not experiencing any pain.

We will keep you and your family in our prayers.

Donna

[Donna]

What you have done Tahoedonner is something that all of us should do, because, you never know what can happen. You must feel such relief that everything is taken care of your family has nothing to worry about — it’s all done. Wish I could say the same. I’ve had a will stuck in my drawer forever — denial – will never happen to me. I will get to it. Sure don’t want my kids trying to figure out what to do – -it’s a awful feeling when we don’t know what our loved ones would’ve wanted, leads to lots of bickering too. Sorry — I’m rambling. Alexa — down days will come. Scream, yell whatever you have to do. The next day will be better, Emotions with any illness are up and down. Live each day! When you need to let emotions out. This is one place where I’m sure everyone understands.

Take care,
Donna

[Donna]

Congratulations Terri and Bob,
Wonderful news!!

Donna

[Donna]

Hi Kate,

Sorry to hear that George has been in the hospital,
hope he is able to come home today.

Take care,
Donna

[Donna]

Hi Sarah,
Make sure that you’re seen by a specialist who deals specifically with MDS, there are many centers. I’m sure others on this panel will recommend certain ones.Do you know what your classification is? Being young Sarah will definitley work to your advantage. I’m sure you will get lots of responses to your post, there are a lot of people on this forum who are filled with information and will be able to help you. This forum is a
amazing source of strength, knowledge and support. You have come to the right place.

Take Care,
Donna

[Donna]

Hi Carrie, Lots of great advice from everyone. I’m not able to donate blood because of my 1st husbands illness. However my 19 year old daughter is a regular donar, she’s attending a seminar this weekend at the red cross, hoping to reach out to the community to get more people to donate. My mom had such a rare blood type her blood was flown in from all over Canada, her type was never available locally. Many lives depend on it — that is something many of us can do too help. Anyway — like you, my daughter passed out the first time. Like I think Pam mentioned? — close your eyes, don’t look at the needle, think good thoughts and remember to focus on your breathing.
I’m sure you’ll be fine

Donna

[Donna]

Hi Carrie, Lots of great advice from everyone. I’m not able to donate blood because of my 1st husbands illness. However my 19 year old daughter is a regular donar, she’s attending a seminar this weekend at the red cross, hoping to reach out to the community to get more people to donate. My mom had such a rare blood type her blood was flown in from all over Canada, her type was never available locally. Many lives depend on it — that is something many of us can do too help. Anyway — like you, my daughter passed out the first time. Like I think Pam mentioned? — close your eyes, don’t look at the needle, think good thoughts and remember to focus on your breathing.
You’ll be fine.

Donna

[Donna]

That’s good news Dawn! — Hopefully after he connects with a MD from a center he won’t feel so hopeless.

I connected with Audrey as well when Mom was diagnosed, she was very helpful. Because I’m from Canada it was very difficult to get to a center (also, Mom didn’t want too) I did connect with a woman here through our local Red Cross, she was very supportive.

Good Luck,
Donna

[Donna]

Hi Pam, Focus all your energy into positive thoughts — you can beat this. Like Greg said, you’re young and that is of great benefit. Stay strong Pam. You will be in all of our thoughts and prayers.

Donna

[Donna]

Hope I did this right?

[Author]

Posts