multiple diagnosis

[Shaunna Robey]

My 43 year old special needs daughter has a diagnosis of MDS-RS, scoliosis, as well as severe osteoporosis, secondary to life long anti-seizure therapy. (T-4.3) She has had multiple fractures, GI issues and some cardiac rhythm disturbances. She is fully functional and held a job until her health started to decline. Considering her young-ish age of onset of her MDS, (no transfusions, yet), what is the likelihood of her surviving several more years??

[Kathy Stermer]

It’s so difficult to predict how this disease goes as it affects everyone so differently. Hopefully your daughter is being followed at a Center of Excellence by a physician knowledgeable in this disease who is also able to take into account her other health issues to enable her to live her best quality life.

[Peggy Grubbs]

I too have mds-rs and was diagnosed When I was 63. I was also diagnosed with an autoimmune system disease, GPA, at the same time. These two diseases often fight each other. I have since developed heart and lung issues, exacerbated by low hemoglobin. The one thing I can say is that your daughter’s doctors all have to work together to develop and manage a treatment plan. You will also need to be her advocate and stay on top of things. My primary care doctor is my quarterback and makes things happen between all the drs when necessary. I’ve been taking Revlimid for 6 months and it has helped keep me transfusion free. MDS-RS is different for everyone. I’d suggest you get really good at understanding a CBC so you know when to worry and when to relax a bit. A positive attitude helps. Good luck!

[Shaunna Robey]

Thank you for your input, Peggy and Kathy. Thanks for the advice. Fortunately, I am a retired ICU nurse and my husband is a newly retired surgeon. Unfortunately, my daughters, PCP, neurologist, and oncologist either retired or left their practices this year. We took that as an opportunity to move where medical resources are much closer and travel time is short. We are in the process of getting settled with a whole new team. With the pandemic, it’s taken some time. When I communicate with one provider, I send the message to all, thanks to on-line patient portals. Her H & H are currently stable but is struggling with a new compression fracture. Keeping a positive attitude and trying to give her, her best life, but it’s difficult with the MDS bone pain as well as the multiple fractures.

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