Hemophilia Saskatchewan

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1 Hemophilia Saskatchewan Autumn 2009 Newsletter 2366 Avenue C North, Saskatoon, SK S7L 5X5 Tel: or hemosask@hemophilia.ca Hemophilia Saskatchewan s Kids' Christmas Party Saturday, December 5th 3:00 to 7:00 PM Shakespeare Room, Radisson Hotel th Street East Saskatoon 3:00 5:00 swimming and games 5:00 Lunch 6:00 Gift Opening Please let us know you are coming by November 28 th Phone & leave your name & phone number: , or Saskatoon: Or, hemosask@hemophilia.ca Remember to bring swim suits and towels. Parents are to supervise children at all times.

2 2 President s Report November is nearly over and Christmas is fast approaching. Where has the year gone? Hemophilia Saskatchewan dedicated a tree, on the grounds of the Legislative Building in Regina, to all those affected by the tainted blood tragedy. Thank-you, Faye for organizing this event. To celebrate Bleeding Disorders Month, Hemophilia Saskatchewan held a Steak Night and Silent Auction in Regina. Thank-you to the Regina Board members for your time and commitment in organizing this very successful event. December 5th we are at the Radisson Hotel in Saskatoon with a Christmas Party. This is an open invitation for all HSK members to come and share with our youngsters. Bring your swimsuit and your appetite. We continue to sell "Cookie Crumbles" cookie dough. There are two new flavours of dough and four exciting new beverages, plus a fantastic cookbook of "down home" recipes. Order your cookies by Monday, November 30 th, for December 5th delivery. HSK has a new raffle," Hemophilia Saskatchewan, Slip Sliding Along." Tickets will be available in November. The draw will take place at our AGM, March 27, 2010 in Saskatoon. Prizes are a hand quilted, double size quilt, a cross stitch picture and one night at the Radisson Hotel in Saskatoon. Monies raised will go towards our many programs that we offer. We re looking forward to celebrating World Hemophilia Day, April 17 th, with the "Perdue Banquet". In September, HSK will return to Moose Jaw for our Family Weekend. Early in 2011 there will be a Women s Conference. Watch for information on these events in upcoming newsletters. On behalf of Hemophilia Saskatchewan I would like to extend our best wishes for a Merry Christmas, safe, peaceful holiday and a Happy New Year. Anne Lukian President, Hemophilia Saskatchewan Board of Directors President: Anne Lukian Director: Maia Meier Vice President: Elaine Zech Director: Celena Moody Treasurer: Sandra Dionne Director: Daryn Moody Past President: Ann Wood Director: Glenn Wood Thanks for the Help! Thanks to Baxter Corporation for the unrestricted grant supporting this newsletter. Director: Stacy Cullen Director: A.J. Zech Director: Tony Fiacco

3 3 MARK YOUR CALANDAR NOW!! STRONGER FAMILES, BRIGHTER FUTURES Hemophilia Saskatchewan s FAMILY WEEKEND September 10-12, 2010 Prairie Oasis Complex in Moose Jaw Watch for more information in upcoming newsletters SEE YOU THERE!

4 4 Welcome, Sharleen Jahner RN BScN I was born in Saskatchewan and raised on the prairies, with 24 years of experience in various fields of Nursing. Originally I obtained my Nursing Diploma, but later returned to school to complete my Bachelor of Science in Nursing Degree. For the past two and a half years, I have managed the Internal Medicine - Clinical Teaching Unit at the Royal University Hospital. Prior management experiences included Hospital Program Manager, and Director of Care. Additionally, I have worked as Utilization Coordinator for the Regina Qu Applle Health Region and as Patient Care Supervisor for our three Saskatoon Hospitals. Other work experiences include Urban and Rural Nursing; Emergency, Community, Assessment, Outreach, Northern, and other forms of Clinical and Program Coordination. My professional career path has taken me out of province at times and into a variety of settings and areas. These experiences have provided enhanced learning s, resulted in unique opportunities, and formed lasting relationships. They have also provided tremendous insight into the scope of impact of Chronic conditions on individuals and their families and the barriers they may face. On a personal level, I m a former long term Provincial Board member of the Children s Wish Foundation of Saskatchewan, former Counsellor with Camp Circle of Friends, and past Tour leader for the MS 150 Bike Tour. I continue to be actively involved in a number of other Community organizations. My proudest achievement was having received the Saskatchewan Citizen of the Year Award as a young woman, but my most fulfilling achievements have all been related to the work I ve done with patients, clients, families, communities, and peers. Today, I m loving living in Saskatoon with my husband, cherishing the time spent with family, and taking advantage of every good weather day to embrace my oldest hobby of flying. Since joining the Saskatchewan Bleeding Disorders Program, I have attended clinics in both Saskatoon and Regina and been fortunate to have met some of you. Already, I have learned much, but continue to learn and absorb every detail and every piece of information. I m thrilled to be a part of the Chronic Disease Management Portfolio and SBDP Team, and recognize the good work done by my predecessors to date. I also recognize the strength of the Hemophilia organization and the support it provides to the membership. Please feel free to stop by or contact me. I look forward to meeting and working with you. Sharleen Jahner RN BScN

5 5 Reminders to Those with a Bleeding Disorder Who Will be Undergoing Surgical or Dental Procedures Our goal is to always provide our clients with a safe and effective plan of care while also keeping your optimal health and recovery in mind. In order to prevent bleeding complications, we ask that you remind your physician or dentist of your bleeding disorder on each visit. Take ownership and be proud to share with healthcare professionals what you know about your condition! Become familiar with your bleeding disorder and know the name of products you need to prevent a bleeding episode. Show your physician and/or dentist your Factor First card on a pre-op visit/assessment. Ensure these professionals are aware to call us directly with any questions that arise. Always ensure that you let the Saskatchewan Bleeding Disorder Team know well in advance of the procedure: We need at least 2 weeks notice of a date booked for surgical or dental procedures. A phone call discussion with the nurse coordinator ahead of time can provide you with clarity on details for your surgery and hospital stay. Any clients on home infusion should not have to bring in their product from home if their product is administered in hospital. Preparing yourself and family should be all that is expected of you. The Nurse Coordinator will: Ensure coagulation product orders are prepared and reviewed with the Hematologist familiar with you. Process the orders by Mail/Fax once the Nurse Educator and Staff Nurses have been educated on how to mix and administer the product. Alert the Transfusion Lab staff to arrange for appropriate coagulation product to be ordered in from CBS (Canadian Blood Services), and be available. Alert the Coagulation Lab staff of lab work details to ensure they have adequate staff to process the factor level results requested, and report these to the Hematologist/Nurse Coordinator. Provide ongoing support to ward staff unfamiliar with factor concentrates and /or specific lab work requests. Ensure clarification prior to your discharge on the number of follow-up doses of Factor to be given at home and/or a local hospital setting. (Also determine who will be administering these doses). Any questions or concerns that arise please don t hesitate to call either Nancy or me directly, at (306) We will be happy to assist! Submitted by: Colleen Buehler Nurse Coordinator Saskatchewan Bleeding Disorders Program

6 6 Correct Storage and Handling of Factor Product Lately, there have been a few questions on the correct storage and handling of the factor product as well as how to determine expiratory dates based on how the product is stored (ie. refrigerator or room temperature storage). In hopes to clear up any uncertainty or confusion here are the individual storage and handling instructions from the most common factor products use with the Saskatchewan Bleeding Disorders Program. HUMATE-P - CSL Behring When stored at refrigerator temperature, 2-8 C (36-46 F), Humate-P is stable for the period indicated by the expiration date on the label. Within this period, Humate-P may be stored at room temperature not to exceed 30 C (86 F) for up to 6 months. Avoid freezing to prevent damage to the diluent bottle. Do not use after the expiration date indicated on the vial. Humate-P should be administered within 3 hours after reconstitution. Kogenate FS - Bayer Kogenate FS should be stored under refrigeration (2 8 C; F). Storage of lyophilized powder at room temperature (up to 25 C or 77 F) for 3 months, such as in home treatment situations, may be done. If Kogenate FS is stored outside the refrigerator, please add the date removed from refrigeration and note a new expiry date on the carton and vial. The new expiry date should be 3 months from the date product is removed from the refrigerator, or the previously stamped expiry date, whichever is shorter. Once Kogenate FS is removed from refrigeration, it cannot be returned to the refrigerator. Do not use reconstituted Kogenate FS if it is not clear to slightly cloudy and colorless. Do not use Kogenate FS after the expiration date indicated on the vial. Protect from extreme exposure to light and store the lyophilized powder in the carton prior to use. Do not freeze. Administer Kogenate FS within 3 hours after reconstitution. ADAVATE- Baxter ADVATE should be refrigerated (2-8 C [36-46 F]) in powder form. ADVATE may be stored at room temperature (up to 30 C [86 F]) for a period of up to 6 months not to exceed the expiration date. The date that ADVATE is removed from refrigeration should be noted on the carton. Do not use beyond the expiration date printed on the vial or six months after date noted on the carton, whichever is earlier. After storage at room temperature, the product must not be returned to the refrigerator. Do not freeze. FEIBA - Baxter Store at refrigerator temperature (2 to 8 C, 35 t o 46 F). Within the indicated shelf life the product may be stored at room temperature (max. 25 C) for a period of up to 6 months. The dates between which the product is not stored at refrigerator temperature should be noted on the package. Avoid freezing. FEIBA VH IM- MUNO must not be used beyond the expiry date indicated on the label. FEIBA VH IMMUNO is to be reconstituted only immediately before administration. The solution should then be used promptly. After complete reconstitution of FEIBA VH IMMUNO its injection or infusion should be commenced as promptly as practicable, but must be completed within three hours following reconstitution. Continued on page 7

7 7 BENEFIX - Wyeth Store under refrigeration at a temperature of 2 to 8 C (36 to 46 F).Prior to the expiration date, BeneFIX may also be stored at room temperature not to exceed 25 C (77 F) for up to 6 months. Advise patient to make note of the date the product was placed at room temperature in the space provided on the outer carton. Do not put the product back into the refrigerator at the end of the 6-month period. Use it immediately or discard. Do not freeze. Do not use BeneFIX after the expiration date on the label. Product after reconstitution should be used within 3 hours. NIASTASE Novo Nordisk Store NiaStase at refrigerator temperature between 2 and 8 C (36 and 46 F). Do not allow it to freeze. Do not expose NiaStase to direct sunlight. Use each vial of reconstituted NiaStase within 3 hours of mixing. Do not use NiaStase after the expiration date printed on the outer carton and on the vial label. Submitted by: Nancy Hodgson, Nurse Coordinator, Saskatchewan Bleeding Disorders Program (SBDP) Child and Family Health On-Line Resources Our SBDP team recently had the great pleasure and opportunity to visit the two Hemophilia Treatment Centres in Calgary. We visited the adult care centre called the Rare Blood and Bleeding Disorders Clinic at Calgary Foothills hospital and the Children s Hemophilia Clinic at the Alberta Childrens Hospital. Our objectives were to share ideas, share practice learnings, and build connections with colleagues. We had a very successful trip, thanks to Dr. Card s hard work and careful planning, and the generous sharing by our Alberta Colleagues. I am always on the lookout for resources for families. One of the services available at the Alberta Childrens Hospital is a Family Journal, which is a binder that helps keep track of Health Care Information, Medications, Medical History, Contacts, Equipment and Supplies, Family Medical History, Preschool and School Info etc. Although some of this information is recorded through your Factor First card and using infusion logs (or web or palm pilot inputs), this binder is a comprehensive tool that would be useful to keep track of all health care information. They also have other health care journals, including an electronic one, that can be downloaded from their website. Look under the Journals heading. I was particularly excited about the excellent resource section of Information Prescriptions that lists recommended books and websites on a variety of child health topics from Preparing Your Child for Surgery, to Dealing with Bullying, Youth in Transition, Sleep, Managing Challenging Behaviours, AD/HD and many others. I am sure our local public library system could provide or order the recommended titles. Check it out at Submitted by: Michelle Sims Social Worker Saskatchewan Bleeding Disorders Program

8 Commemoration of the Tainted Blood Tragedy Tuesday, October 27, 2009 marked 16 years since Justice Horace Krever was appointed to head the Commission of Inquiry on the Blood System in Canada.

The Tree of Life ceremony was the first of its kind in Saskatchewan, although similar services have been conducted in Ottawa, Montreal and Charlottetown.

8 8 Commemoration of the Tainted Blood Tragedy Tuesday, October 27, 2009 marked 16 years since Justice Horace Krever was appointed to head the Commission of Inquiry on the Blood System in Canada. Hemophilia Saskatchewan dedicated an evergreen tree in Wascana Park, near the Legislative Building to mark the occasion. The rain cleared at 11:20 a.m. as MLAs, representatives from Hemophilia Saskatchewan, Canadian Blood Services, Wascana Centre Authority, and the media gathered near the evergreen tree. The Tree of Life ceremony was the first of its kind in Saskatchewan, although similar services have been conducted in Ottawa, Montreal and Charlottetown. Faye Katzman conducted the Regina ceremony and spoke of its purpose. We dedicate the Tree of Life to the memory of those who died because they received contaminated blood. We also acknowledge and support the courage of those who live with the medical, emotional and financial consequences of the tainted blood tragedy. Following a moment of silence, Ms Elaine Zech presented the Canadian Blood Services with a commemorative plaque: Hemophilia Saskatchewan has dedicated an evergreen tree in Wascana Park to all the victims of the tainted blood tragedy. The courage of those who died and those who live with diseases contracted from contaminated blood products, compels us to help protect the future safety and security of Canada s blood system. Ms Laura Ross, representing Premier Brad Wall, and six other MLAs - Serge LeClerc, Greg Ottenbreit, Nadine Wilson, Judy Junor, Deb Higgins and Doyle Vermettee witnessed the presentation of the plaque which will be permanently housed at CBS Regina. The event was recorded by two television stations (CTV and Global), a photographer from Regina LeaderPost, and Robert Watson, a free-lance photographer, Sandwiches and hot soup were served at Canadian Blood Services Clinic immediately following the dedication ceremony. Before returning to the Legislative Building, members of Hemophilia Saskatchewan were offered a tour of the CBC clinic facilities. Ann and Dick Wood, Elaine Zech, A.J. Zech, Irene Cook, Celena and Daryn Moody and their three beautiful children Rylee, Kierra, and Ayden, and Faye Katzman returned to the Legislative Building where they were introduced by SaskParty MLA Serge LeClerc. NDP MLA Junor also provided a warm and comprehensive introduction. The commemoration event, a Hemophilia Saskatchewan initiative, was supported by Canadian Blood Services, Wascana Centre Authority, and Canadian Hemophilia Society. For background information, please visit Suggested reading: The Gift of Death: Confronting Canada s Tainted Blood Tragedy by Andre Picard Submitted by: Faye Katzman

9 9 Photos courtesy of Robert Watson,

10 10 H1N1 flu shots: People with bleeding disorders are not in the high risk category for H1N1 flu shots, due to their bleeding disorder. If you have any questions or concerns, please contact the Saskatchewan Bleeding Disorders Program (clinic) nurses at regarding immunization protocol. Submitted by: Colleen Buehler and Nancy Hodgson, Nurse Coordinators, Saskatchewan Bleeding Disorders Program (SBDP Merry Christmas Saskatchewan s Help Lines For bleeding problems we all know we can contact the Saskatchewan Bleeding Disorders Program by phoning our nurses, Colleen and Maureen at The Saskatchewan Health Line, , gives you access to a nurse to help you decide, based on your symptoms, if there is a need to see your doctor or a if a visit to the Emergency Room is warranted. Saskatchewan Consumer Drug Information Service can give you advice on over the counter and prescription drugs as well as herbal remedies. Phone , or in Saskatoon Happy Hanukah Happy New Year To All THANKS to Bayer and to the Saskatoon Health Region for their generous assistance for funding parking costs for SBDP clients who attend clinic at Royal University Hospital. The Bayer grant is a one time grant, which will hopefully cover patient s parking costs for approximately a year. When you come for clinic at Royal University Hospital, remember to bring along your parking ticket!

11 11 Tavis Duncan Foundation Through the Tavis Duncan Foundation, Hemophilia Saskatchewan is able to offer help for parents seeking to defray a percentage of the costs associated with the maintenance and treatment of children with hemophilia. Application for coverage is to be made in advance, if possible. Applicants must be registered members of Hemophilia Saskatchewan. The Foundation will reimburse for items and/or expenses such as: -the purchase of safety apparel ( ie. head gear, elbow pads) -$50.00 per year per affected child, under the age of 18 years, towards the purchase of adequate footwear -assistance with in-hospital costs during an extended visit -assistance with out of province medical costs -summer camps -an educational opportunity for a family member to increase their knowledge of hemophilia For application forms, please contact the Hemophilia Saskatchewan office by mail, phone or . Hemophilia Saskatchewan # Avenue C North, Saskatoon, SK S7L 5X5 Phone: or The Duncans at sldaizy@yahoo.com or hemosask@hemophilia.ca Don t Forget! Please notify the SBDP at (306) of upcoming dental or surgical procedures one month prior to the scheduled date. As part of comprehensive care, this will ensure adequate coagulation product coverage availability and provide optimal patient care. Do You Have Comments? We d love to hear from you! Send stories and comments to: Hemophilia Saskatchewan, # Avenue C North, Saskatoon, SK S7L 5X5 hemosask@hemophilia.ca Please note: Hemophilia Saskatchewan is a volunteer run organization. Feel free to contact us: 2366 Avenue C North, Saskatoon, SK S7L 5X5 Phone: or hemosask@hemophilia.ca

12 12 The next newsletter deadline is January 20, Your contributions are always welcome. You may them to Hemophilia Saskatchewan would like to acknowledge Baxter, Bayer, CSL Behring, Wyeth, Nova Nordisk, Sasktel Telcare and Sasktel for the support given to our programs. Or send them to the office, 2366 Avenue C North, Saskatoon, SK S7L 5X5 Please Note: Opinions expressed herein are those of the authors, and do not necessarily represent the views of Hemophilia Saskatchewan. We do not guarantee the accuracy of information contained herein, and accept no legal responsibility for information quoted from other sources. Hemophilia Saskatchewan Donation and Membership Form Membership year is from January 1st to December 31st yes, I want to renew my membership in Hemophilia Saskatchewan Individual Membership $10 Family Membership $20 yes, I want to join Hemophilia Saskatchewan yes, I d like to make a donation to Hemophilia Saskatchewan All Donations Stay in Saskatchewan I would like to join Hemophilia Saskatchewan s $200 club I would like to donate: $250 $100 $50 $25 Other $ Please make cheques out to Hemophilia Saskatchewan # Avenue C North, Saskatoon, SK S7L 5X5 I prefer to make a monthly donation and authorize Hemophilia Saskatchewan to charge the indicated amount to my credit card I prefer to make a monthly donation and have enclosed postdated cheques. I prefer to make a one-time donation Please charge my donation to: Visa MasterCard Amex Card # Expiry Date: Name on Card: Signature: Please send my receipt to: Name: Address: Postal Code: Telephone Thank-you for your contribution which benefits all those with bleeding disorders in Saskatchewan. All gifts are tax deductible. Charitable reg. # RR0001

Hemophilia Saskatchewan

Hemophilia Saskatchewan Fall 2017 Fall Newsletter 2366 Avenue C North, Saskatoon, SK S7L 5X5 Tel: 1-866-953-4366 or 653-4366 Email: hemosask@gmail.com 2 President s Message Hello All! The fall edition