Welcome to the Cystic Fibrosis clinic. Here you will find information about:1. What to expect when you come to the hospital - A little about your CF doctors - Common tests for kids with CF 2. Accommodation3. Travel Funds4. Travel - by Car - by Air - by BusIf you would like information about cystic fibrosis, please contact the CF Foundation or contact the Family Resource Library. The library has pamphlets, books and videotapes for loan. It is located on the 2nd floor of the Ambulatory Care Building.
A Little about your CF Doctors (top of page) When admitted to hospital, it can be confusing to keep track of all the health care professionals that come in and out of your room! This is a guide to help you keep track of your doctors and know what to expect from an Attending Physician, a Fellow/Clinical Trainee, a Medical Student/Resident and what we do at Weekly Rounds. Attending PhysicianWhen admitted to hospital, you/your child will be assigned an ‘Attending Physician’. You will probably have already met your Attending physician before at the CF Clinic. The attending physician is usually the CF specialist physician who is “On-call” for that week, and is responsible for making sure that the overall plan of care is carried out. This care-plan is based on what was talked about beforehand (perhaps at a clinic visit) between you/your parent, the CF Clinic physicians (including the “on-call physician), and CF clinic nurses and other staff.The attending or “on-call” CF specialist physician does not necessarily see you every day, but all major decisions are approved by him/her, and they are kept up to date on what is happening to you/your child while in hospital. The doctor you will see most often in hospital is usually the “fellow” or “Clinical Trainee” (see below).The On-call physician changes each week, usually on a Monday morning. While on-call, they are available as needed, 24 hours a day for that week. Your on-call CF specialist physician:Week 1: ________________________________ Week 2: __________________________________ Fellow/Clinical Trainee (top of page)The doctor you/your child will see most often in hospital is called a ‘Fellow’ or a ‘Clinical Trainee’. Clinical Trainees are usually full-fledged doctors who went to Medical School outside of Canada (“International Medical Graduates”), and are receiving additional training here. They are responsible for seeing you/your child every day (or most days) and they order all medications and tests (in agreement with your Attending Physician). There is also a clinical trainee “on-call” 24 hours/day for one week (also usually changes on a Monday morning).Your on-call Clinical Trainee:Week 1: ________________________________ Week 2: __________________________________ Medical Student/ResidentMedical students are doctors ‘in training’, and residents are full-fledged doctors who are studying further to become specialized in a certain area (probably pediatrics – or taking care of children – in this case!). Since BC Children’s is a teaching hospital there are many of these people around! Sometimes a medical student or resident will ask to examine you/your child or follow your (child’s) progress in hospital. Weekly Rounds (top of page)Every week on Monday and Thursday mornings, your (child’s) doctors and the rest of the CF team (nurse, physiotherapist, dietician, social worker) get together to discuss all the CF patients in hospital. They talk about your (child’s) medications, test results, and plans for the rest of your (child’s) stay and discharge. The CF team then visits each patient to talk about what was discussed in rounds. This is a GREAT opportunity for you/your child to ask questions or raise concerns with your CF team! Do you have any questions about this?? Be sure to ask your CF doctor or nurse! You can reach the CF nurses by dialing “7005” on your hospital phone. (Written by Vanessa McMahon,Anna Gravelle & Dr. Davidson, Marc)
When admitted to hospital, it can be confusing to keep track of all the health care professionals that come in and out of your room! This is a guide to help you keep track of your doctors and know what to expect from an Attending Physician, a Fellow/Clinical Trainee, a Medical Student/Resident and what we do at Weekly Rounds. Attending PhysicianWhen admitted to hospital, you/your child will be assigned an ‘Attending Physician’. You will probably have already met your Attending physician before at the CF Clinic. The attending physician is usually the CF specialist physician who is “On-call” for that week, and is responsible for making sure that the overall plan of care is carried out. This care-plan is based on what was talked about beforehand (perhaps at a clinic visit) between you/your parent, the CF Clinic physicians (including the “on-call physician), and CF clinic nurses and other staff.The attending or “on-call” CF specialist physician does not necessarily see you every day, but all major decisions are approved by him/her, and they are kept up to date on what is happening to you/your child while in hospital. The doctor you will see most often in hospital is usually the “fellow” or “Clinical Trainee” (see below).The On-call physician changes each week, usually on a Monday morning. While on-call, they are available as needed, 24 hours a day for that week. Your on-call CF specialist physician:Week 1: ________________________________ Week 2: __________________________________ Fellow/Clinical Trainee (top of page)The doctor you/your child will see most often in hospital is called a ‘Fellow’ or a ‘Clinical Trainee’. Clinical Trainees are usually full-fledged doctors who went to Medical School outside of Canada (“International Medical Graduates”), and are receiving additional training here. They are responsible for seeing you/your child every day (or most days) and they order all medications and tests (in agreement with your Attending Physician). There is also a clinical trainee “on-call” 24 hours/day for one week (also usually changes on a Monday morning).Your on-call Clinical Trainee:Week 1: ________________________________ Week 2: __________________________________ Medical Student/ResidentMedical students are doctors ‘in training’, and residents are full-fledged doctors who are studying further to become specialized in a certain area (probably pediatrics – or taking care of children – in this case!). Since BC Children’s is a teaching hospital there are many of these people around! Sometimes a medical student or resident will ask to examine you/your child or follow your (child’s) progress in hospital. Weekly Rounds (top of page)Every week on Monday and Thursday mornings, your (child’s) doctors and the rest of the CF team (nurse, physiotherapist, dietician, social worker) get together to discuss all the CF patients in hospital. They talk about your (child’s) medications, test results, and plans for the rest of your (child’s) stay and discharge. The CF team then visits each patient to talk about what was discussed in rounds. This is a GREAT opportunity for you/your child to ask questions or raise concerns with your CF team! Do you have any questions about this?? Be sure to ask your CF doctor or nurse! You can reach the CF nurses by dialing “7005” on your hospital phone. (Written by Vanessa McMahon,Anna Gravelle & Dr. Davidson, Marc)
Common tests for kids with CF (top of page) Sputum culture/throat swab: (On admission and every Sunday ) Done by physiotherapist to check for bacteria and other germs (sometimes we need more than one specimen, depending on how many kinds of germs we are checking for)
Sputum culture/throat swab:
Pulmonary Function Test: (day/time:___________ )Done once weekly on Tuesday mornings (don’t take your Ventolin that morning, you’ll get it in PFT lab); your ward nurse will find out on that morning what time your test is….please try to be on time!Chest X-ray: (day/time:___________ )Not done every hospitalization; if needed, usually only done once during that hospitalization.Stool test: (Once, on admission. Done_________ ) One specimen only; tests for presence of fat (which may mean we need to adjust your enzyme dose), and/or germs (which would mean you have an infection in your gut).Tobramycin blood level: (done______________ )This is done if you are given Tobramycin through your IV, to make sure the dose of the medication is best for your body (not too high and not too low!)Blood tests are done before and after your 3rd or 4th doses (may have to be done again if the 1st level was too high or too low)Hearing test (also called “audiology test”): (day/time:___________ )Once a year if on Tobramycin (which can sometimes affect hearing, when used a lot)GFR = Glomerular Filtration Rate (“kidney test”): (day/time:___________ )Once a year if on Tobramycin (which can be hard on the kidneys when used a lot)Gastric Emptying Study: (day/time:___________ )Checks how quickly food passes through your stomach to the rest of your digestive tract. You need to bring your enzymes and any other stomach medications you are prescribed (for eg. Cisapride, Domperidone, Ranitidine, Bethanacol). You will also be told how long to ‘fast’ (not eat food or drink) before the procedure.Gastric Reflux Scan: (day/time:___________ )Shows if any stomach content comes back up your esophagus and into your windpipe. You need to bring your enzymes and any other stomach medications you are prescribed (for eg. Cisapride, Domperidone, Ranitidine, Bethanacol). You will also be told how long to ‘fast’ (not eat food or drink) before the procedure.Abdominal (liver) ultrasound: (day/time:___________ )Not done on every admission. Some gel (may feel cold!) is put on your belly and a special camera takes images of your liver and/or other organs in your body.C.T. Scan (or CAT Scan) of Lungs: (day/time:___________ )This test is not done on every admission. It is a ‘cross-sectional’ picture of the lungs. You have to lay down on a bed that has a big camera over it, and stay very still. Written by Vanessa McMahon, January 2007
For families unable to make the round trip to the CF clinic in one day, the cost of one night’s accommodation (except in special circumstances) at either Easter Seal House or Heather House will be reimbursed. As the grant funds are limited, any additional family members will be responsible for their own accommodation costs. Accommodation costs are also reimbursed for one parent for the duration of their child’s hospitalization, if necessary. Please inform Easter Seal House or Heather House in advance that you have a child with CF attending the CF clinic, or being hospitalized. You will be asked to pay up front; keep your bill and forward it to the CF BC Association Grant Administrator. She will reimburse the cost of one parent’s stay. Do not hesitate to ask Easter Seal House or Heather House to call the CF Clinic if there is any confusion about this.
Funds have been provided by the BC Ministry of Health to the BC Cystic Fibrosis Association (Canadian Cystic Fibrosis Foundation), to assist with travel and accommodation to attend the CF Clinic (including specialized outpatient tests/procedures), and /or hospitalization at BC’s Children’s Hospital for CF-related illness. This grant is governed by the BC CF Association. To be eligible for support from this grant, patients must have their diagnosis confirmed by a CF Clinic in British Columbia. In addition, patients must attend a CF clinic in BC at least every two years. Travel and accommodation arrangements are to be made by the parent. Except under special circumstances, this grant provided coverage for a CF patient and one parent.
By Car Reimbursement will be made following the clinic visit or hospitalization for a portion of the fare or for mileage exceeding 166 km (100 miles) round trip. Mileage will be paid at the amount of 15 cents per kilometer. The grant does not cover parking or tolls. By Air* Where possible, all families are encouraged to use the Travel Assistance Program or Hope Air. Please ask your CF clinic social worker if you would like information on either of these programs. Hope Air charges an administration fee of $25 per person (the actual flight is free), which the grant does not reimburse. The grant will reimburse 40-75% of airfare (after Travel Assistance Program discount), depending on your distance from the clinic (those who travel greater distances with costly fares will receive more coverage). By Bus* The grant will provide reimbursement for round trip bus fares, minus a $25.00 (per person) deductible.*It is the responsibility of the family to alert the CF clinic nurse that they are eligible for partial reimbursement, and to give them receipts from bus or airline tickets. You can contact Lynne Guinet (Social Worker) or Anna Gravelle (Nurse Clinician) at the BCCH CF Clinic (640-875-2146) if you have further questions about this grant. Note: Patients receiving assistance from the BC Ministry of Employment and Income Assistance or MCFD are funded by that source for travel to the clinic.(top of page)
Reimbursement will be made following the clinic visit or hospitalization for a portion of the fare or for mileage exceeding 166 km (100 miles) round trip. Mileage will be paid at the amount of 15 cents per kilometer. The grant does not cover parking or tolls.
Where possible, all families are encouraged to use the Travel Assistance Program or Hope Air. Please ask your CF clinic social worker if you would like information on either of these programs. Hope Air charges an administration fee of $25 per person (the actual flight is free), which the grant does not reimburse. The grant will reimburse 40-75% of airfare (after Travel Assistance Program discount), depending on your distance from the clinic (those who travel greater distances with costly fares will receive more coverage).
The grant will provide reimbursement for round trip bus fares, minus a $25.00 (per person) deductible.*It is the responsibility of the family to alert the CF clinic nurse that they are eligible for partial reimbursement, and to give them receipts from bus or airline tickets.
You can contact Lynne Guinet (Social Worker) or Anna Gravelle (Nurse Clinician) at the BCCH CF Clinic (640-875-2146) if you have further questions about this grant. Note: Patients receiving assistance from the BC Ministry of Employment and Income Assistance or MCFD are funded by that source for travel to the clinic.(top of page)