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.

MDS Care Management

This topic has 4 replies, 1 voice, and was last updated 15 years ago by Laurie H.

Viewing 5 posts - 1 through 5 (of 5 total)

Author

Posts
April 19, 2009 at 7:47 am #21998

Laurie H
Member

In addition to MDS, I have severe degenerative joint disease. I had back surgery twice in November and have been ill since the second week of December. My RBC has been running 24 & 25 for nearly a year and once dipping down to 23 & 18. I had TX a number of times but just didn’t really help. When I told Dr.s I’m pretty sure I need a TX they put me off twice and that is when my RBC dropped to 23 & 18. I asked them ( I see several Dr.s)repeatedly if something else could be going on and was pretty much blown off because I have MDS. This continued until March 9th when I went into have my procrit & pneupegen shots and nearly collapsed in the hallway. They put me in a wheel chair and pushed to the ER next door where I spent a week in ICU. Has anyone else had any similar experiences with DR.s not listening to you. I have resorted to arranging with my primary care physician to act as a liason between myself and MDS Dr.s in order to manage my care so that I am receiving the treatment I need. I am only 55 years old and because I have MDS they nearly let me die from multiple blood clots in both lungs.

April 19, 2009 at 6:55 pm #22001

jaxem
Member

laurie
mds isn’t a disease that is seen by many healthcare pros especially people in ER’s. that’s why it’s so important you see a hematologist, preferably at a known institution for doing transplants. I’d be scared stiff being treated at the place you describe. any chance you can get a 2nd opinion at Hutch in Seattle? I think you mean to put a decimal point beween the RBC #’s. also, most institutions don’t transfuse until you get below 0.8 but patients do react differently at low counts although yours doesn’t seem that low. Normal RBC is 4.1 to 5.4. anyone say anything about getting you started on revlimid?

April 20, 2009 at 3:16 pm #22006

jaxem
Member

sorry about the 0.8 number in last reply. that’s a hemoglobin #. normal hemo is between 12 & 16. not sure if any institutions transfuse based upon RBC level.

April 20, 2009 at 5:28 pm #22007

plantcollector
Member

Laurie, I wrote a kind of long message, so I decided to send it directly to your E-mail address. I was so sorry to read your posting. The plant collector.

April 22, 2009 at 2:15 pm #22012

Laurie H
Member

Sorry, the RBC number I gave was actually HCT.
Author

Posts