need advice from experienced nurses....

My father, who is living in LTC for 7 months, was just given the diagnosis of myelodysplastic syndrome. His other diagnoses are remote ABI, Hyperlipidemia, AAA, and Anemia NYD. His doctors have not been forthcoming despite my active involvement and advocacy. Therefore, I don't trust them very much and am seeking outside education/support. My specialty is psychiatry and, I am not familiar with treatments such blood transfusions etc. The doctor says we should expect him to die within months. The diagnosis was determined by lab values and symptoms. The bone aspiration was not done as the doc said it would be too painful. The doc also said that blood transfusions do not provide any symptom relief nor do they provide quality of life, prolonged survival etc etc.......

I am very frustrated in the Canadian Health Care System as it applies to my dad because his doctors have dismissed him and our family in many instances. My dad's lab values have been low since we brought him into hospital last January..... that is when he was first diagnosed with anemia nyd..... low B12...and, at one point he had a blood transfusion. I am wondering if I should pursue the transfusions and/or any other treatments??? That is where I ask your assistance...... can anyone help me? I have phoned in a complaint to the Ontario LTC complaint line and will follow-up with letters of complaint as my father's needs in other areas are not being met.......... my main concern is this new diagnosis....... and, is it actually "new" or, did the bozo physicians allow the progression because they chose not to investigate and/or treat. This is all very frustrating and disheartening...... I am open to any and all advice.

Thank you kindly,

Rhonda

Hi Rhonda -

If you can, why not have a hematologist/oncologist consult in the US? Unfortunately, you'd be paying cash since you are going out of the country. I can't say anything about the decisions made about your father's care by the physicians, with regards to the rationale for not being aggressive enough with diagnosis and treatment or their not being forthcoming with information.

Have you done research on your own about MDS and treatments? Can you find doctors that are willing to give a second opinion, or are you stuck with whomever you get? (I am unfamiliar with the Canadian Heathcare System).

I hope that you get some answers, it is very difficult to have a sick family member.

Blee