Patients Comments gleaned from Delphi Survey

To be allowed a “Normal” hemoglobin (Hgb) instead of cutting us off ay 10g/dL. Many of us don’t feel good or function well at 10g/dL or below.
Consistent Hgb at >12g/dL; Eliminate or reduced Epogen (EPO) holds; Although this is a highly politicalized topic ways are needed to incentive providers to focus on patient well-being rather than minimum EPO cost. I have specific and radical ideas for catering anemia right protocols; Eliminate secret protocols.
I would like to see more options given to patients to help control the anemia before it drops so low, every clinic is different. In NM we could give Iron at home with training. Here in Alabama we have to wait for a nurse to do it.
More education dealing with research and current clinical trials of medication and treatment methods available. Links to any info dealing with anemia.
It has only been stable for a couple months – so I would like to have a treatment more reliable. It seems like a game.
Less of a one size fits all approach, not everyone can take injections or respond w/o major side effects to pills.
I would like to see alternatives to Epogen used to stimulate red blood cell production.
I understand the risks of “higher cardiovascular” indicates with a higher than normal HGB but to me it is a trade-off I am willing to make if it improves my quality of life to where I can work without feeling drained every day.
Send important question but all in my mind I keep thinking is the risk the risk but sometimes you have to take a rest to achieve
I’ll accept the risks for a more active life.
Increasing the dose to get the energy benefit.
Personalized to the patient, especially if patient has no heart conditions then can increase dose to improve quality of life if they feel a higher Hgb allows them that.
Patient’s quality of life can be improved with a transfusion instead of letting patient be overwhelmed with fatigue.
I believe that with younger people, there should be a more open discussion on allowing them to go above a Hgb of 12g/dL to improve quality of life to the point where they are not drained from working and dialysis.

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