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Donna
MemberAgain – interesting. Mom, mds – sister – lupus. I’ve had cancer. and another sister STILL waiting to find out what going on with her immune system, They are suspeting some sort of blood disorder.
Autoimmune disorders do tend to run in families, according to my Dr.
Donna
MemberSo sorry Nicole,
May you find comfort in knowing your Dad his free from his pain and is at peace now.Take care,
DonnaMemberHi Sandy,
We too encountered a dr. like that. She had no empathy at all.
Every single visit she would say things like — “Maybe you should consider going into pallitive care now or, you don’t have much time left do what you can now, or these transfusions aren’t going to make you better they’re merely helping to keep you comfortable”. Gosh – I could go on and on. I wanted so badly for Mom to go to someone else but seems here in Vancouver there really wasn’t a lot of options and she (as horrible as I thought this Dr. was) was comfortable with her, rudeness and all.
Many, many times Dr’s have said things that have not proved to be true, many people here can attest to that. How do they know how long any one is going to survive?. No one knows that for sure, well, except for maybe one much greater than ourselves.You hang in there, and I hope you’re able to find a Dr. will a little better bedside manner.
Take Care,
DonnaMemberHi Teri, I’m really shocked that now your mom has the diagnosis of Mds. That’s so unreal! — we’re they both exposed to something? What do you think?. Try not too worry too much, I know easier said than done. My mom passed away last August. My sister has lupus and another sister has some underlying blood disorder, still not sure what exactly she has. My dr. told me that autoimmune disorders tend to run in families although MDS itself doesn’t appear to me heriditary.
Take care,
DonnaMemberI’m really sorry Carrie, I know this is a very difficult time.
Hang in there.You mentioned the port being the possible site of infection – I wonder about that too (???). Wasn’t long after mom had hers put in she seemed to get sicker with various infectons that they couldn’t pin point. She had it put in toward the very end. I wonder if this is something they should reconsider when someone is very ill because of the risk of infection. (???)
Donna
MemberGreat news Kathyrn!.
Glad it’s over and you can breathe a little sigh of relief.Take care,
DonnaMemberI’m so sorry Carrie. Gosh, your dad is so young. Unfortunatley, sadness is a big part of this disease. I wish I had some miracle answers for you. I know it’s sooo hard. I can say, I can relate to what you are going through having watched my mom go through all of her horrible stuggles. One day at a time I think is the best any of us can do. I hope that your dad is able to get through this difficult time and that things get easier for you and your family.
Take Care,
DonnaMemberI’m relieved for all of you her passing was free from pain and peaceful. My deepest sympathies to all of you. May you find peace and comfort in knowing she is now free from her suffering.
Donna
MemberThis has been a source of great debate. Although MDS itself is not hereditary. My Dr. has told me that it is not uncommon for autoimmune disorders to run in families. In my situation it has proven to be true. Mom had MDS, one sister has lupus and another sister is still undergoing tests. Having said that, I don’t think you need to be worried at all about your children. I’m a mom too, my brain went there as well when Mom was diagnosed – I think with any illness it’s normal to wonder about that.
Take care,
DonnaMemberHi Greg,
I’m so sorry to learn of your devasting news. I agree though that you can find some comfort in knowing your mom is at peace with her decision. I believe the suffering becomes to much to endure and it is at that point we must give our loved ones the dignity and respect they deserve.I have 5 children and had to tell them twice they were losing loved ones. 1st their father and then my mom. I think the best advice I can give you is to be honest about it. Grandma is very sick and the dr’s can’t make her better anymore. My children found a lot of comfort in the belief that they were going to heaven where they would be free from their illness and they would be joined by others that have past before. All of my children also saw my mom and their dad when they were both very ill so they knew things were not good. It’s a tough one Greg, I wish you strength and courage to get through what lies ahead.
All the best,
DonnaMemberMom was always transfused when she was around 9.0
You could tell when it was starting to drop, she would tire very easilyDonna
MemberHi Butch,
It’s so disheartning when we have to worry or ask questions like this after any one looses a loved one. I geuss the one thing that can come of this is, at least, it can hopefully help others.I’m so sorry for your loss, stay strong.
Donna
MemberA few more names to add:
William Connaughton
Caleb Connaughton
Carly Smith
Jenna Smith
Jordan Smith
Dannica SmithVancouver, Canada
MemberPlease add mine as well,
Donna Smith
Vancouver,CanadaMemberHi Suzanne;
That’s what I was told as well. The MDS itself has not been proven to be inherited, however, if a member of the family has been diagnosed with MDS, chances of other family members having some sort of autoimmune disorders are quite high. For instance, Mom had MDS, in our situation, my sister has lupus, another sister something else (not sure what she has yet). Or could be arthritis anything in the family of autoimmune disorders, I’m sure there are many we have no idea what they all are. For our family, it has proven to be true. My Dr. has recommed yearly blood work for me.Take care,
Donna -
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