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says:
August 12, 2011 at 2:01 am

About 20 years ago I was contacted as a preliminary match. They sent me to a hospital for an addition blood draw so they could do further type testing. Unfortunately I did not fully match so could not donate. But now that I am fully typed, if I am called as a match there is a really good chance that I will have the chance to do so. I hope to have the opportunity someday.

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says:
August 12, 2011 at 6:25 am

Denise, I too went through the TOTAL matching process, and came up as a match — unfortunately, the patient was not “ready” for a transplant at that time, and it never happened. But, like you, I have the comfort of knowing that my FULL testing results are available, giving both you and I an even better chance to donate and help someone else in the future! God Bless You! Tricia

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I, too, have been on the registry for over ten years. I believe it’s not a question of “if” rather a question of “when” if you’re on the registry. My commitment remains the same, because what caused me to be on the registry in the first place remains the same as when I originally signed up: this dreaded disease can sneak up on you and take away everything that you’ve ever known, and it doesn’t age discriminate. I hope to be on the registry list until I am no longer needed.

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says:
August 12, 2011 at 5:22 am

I too have been on the list for over 15 yrs and have never been contacted…

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Reading all the responses has made me more sure that I am dedicated to being a donor if called. I am proud that there are so many people out there willing to do the same.

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I was contacted about 8 or so years ago, and went through 4 more blood testing stages, to find out (very happily!) that I was a “perfect match” for a patient. Soon afterward, I received a phone call that the patient was “not yet ready” for a marrow transplant. I don’t know if that means he/she was too ill to withstand the transplant, or what it meant, but I was very disappointed that, in the end, I was not able to help this (or any other) patient at the time. I am coming to the age where I will no longer be considered and “appropriate” donor, and I still pray that I match SOMEONE, and will be able to help save/improve someone’s life/quality of life. All of you “youngins” out there, SIGN UP NOW TO BE A DONOR, AND KEEP YOUR CONTACT INFO UP TO DATE. It could be one of US in the same situation some day! Sincerely, Tricia Rueda

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However, our results also recognize the many challenges in translating information in updated CPGs into practice. These include insufficient time for clinic visits, reasonable ambiguity around existing evidence, the presence of cognitive bias, formulary constraints, and the lack of appropriate incentives to change practice patterns. In one study, the US Department of Veterans Affairs (VA) conducted a national survey of its primary care providers (PCPs) to understand current practices four years after the dissemination of clinical recommendations limiting intensive glycemic therapy for patients with T2D. One-half of the 594 respondents reported that they would not be worried about potential harms caused by tight control for an older patient with an HbA1c (A1c) level of 6.5% who was at high risk for hypoglycemia ( 7 ). These responses emphasize the importance of innovative and proactive steps to help clinicians translate new CPGs into routine clinical practice.

We believe the recent interest in the development and use of quality measures in VBP programs to promote adherence to evidence-based recommendations also presents an opportunity to reduce hypoglycemia. Our review of existing measures revealed a gap in metrics related to known hypoglycemia risk factors. Of the 34 total measures related to A1c control, complications of diabetes, and patient self-management, none addresses the reduction or management of hypoglycemia in outpatient settings. As part of our study, we identified several draft and proposed measures that, if adopted in quality programs, could fill many of the existing gaps. Currently, the Centers for Medicare Medicaid Services’ Measures Under Consideration List includes two diabetes measures that reflect evidence-based recommendations: (1) diabetes A1c control (<8%) and (2) optimal diabetes care, a composite measure that includes managing A1c <8%. In addition, the HHS National Action Plan for Adverse Drug Event Prevention includes six electronic clinical quality measure concepts for clinicians that can help prevent hypoglycemia. The concepts include (1) shared decision-making on glycemic goals, (2) clinical decision support alerts to identify patients at high risk for hypoglycemia, (3) use of stratified patient lists to assess the A1c levels and comorbidities of patients on antidiabetic medications, (4) use of flowsheets to guide clinician management of patients at high risk, (5) use of patient-centered action plans, and (6) the percentage of patients aged ≥65 years on insulin or sulfonylureas with specific comorbidities and an A1c value <7%. These measures and measure concepts align well with CPGs recommendations focused on the individualization of A1c goals.

We also noted a general lack of resources to help clinicians identify, assess, and manage patients at high risk for hypoglycemia. We identified two risk assessment tools [the VA Hypoglycemia Risk Reduction - Patients at Risk for Hypoglycemia ( 8 ) and the Hypoglycemia Risk Stratification Tool developed by Kaiser Permanente ( 9 )] that address this issue. However, neither tool is in broad use. Identifying ways to implement validated risk assessment tools into clinical workflows and gathering evidence on their value in patient care are priorities for this initiative.

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