Light the Night
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- This topic has 19 replies, 1 voice, and was last updated 18 years, 8 months ago by Suzanne.
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July 22, 2005 at 3:45 am #6990Sandy LMember
Hi Terri,
mike’s doctor’s visit did not go well. His numbers are still dropping. They did a bone marrow biopsy and we are going back on Tues for the results. We saw the associate(the one that Mike did not like) and when we started with our questions – he went to get an article that rates the survival according to the IBSS scale. After he reviewed Mike’s file – (Are you ready for this ) He said you have no more than two years.
How can Doctors lose their empathy for other people? We need a new doctor but I do not know if we have the luxury of time to find the right one. I tried calling you tonight but you were not home and I did not leave any message. Tomorrow is our anniversary. We are married 38 years and we plan to enjoy the day.I hope others out there did not encounter such cold treatment.
July 22, 2005 at 12:52 pm #6991TerriMemberHi Sandy, I will try You sometime over the weekend maybe Saturday, Sunday I am Out, and tonight I am out. Sorry to hear you are having such a rough time with Mike’s doctor. I wish Bobs was on his plan. Don’t pay attention to those numbers, Just need to get with an aggressive doctor experienced in MDS.
Have a wonderful anniversary will talk soon.July 22, 2005 at 7:10 pm #6992DonnaMemberHi 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,
DonnaJuly 24, 2005 at 3:55 am #6993Sandy LMemberThank you for such words of comfort. We will begin our search for a new doctor on Monday.
July 24, 2005 at 2:03 pm #6994SuzanneMemberAt first I felt this way about Hopkins. They just gave me general informaion on the negative side that I already knew, told me to get “my affairs in order” and offered no solutions. I felt more connected to my local hemo and I almost requested a change in doctors at Hopkins. But once I became a patient there instead of just a “consultation” everything changed. I have a wonderful relationship with the same Dr I felt I could not relate to. I feel personally connected to my whole care team and know they are pulling for me. I now know most of the staff at the clinic that is connected to MDS and AML. There are other doctors I like but I have the best combination for me. I think that the centers of excellence have so many patients coming through for consultations that often they can’t really get connected unless they are in charge of treatment and care. I also think that sometimes-especially in the beginning- we react negatively because we aren’t ready to hear what they have to tell us. We want an absolute solution to our illness and to be encouraged not discouraged about what is ahead. We want them to at least do something quickly.I think that happened to me and my family members at the beginning and you know how glad I am that I hung in & worked with my doctor.
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