National Pulmonary Hypertension Service Intravenous Epoprostenol (Flolan) Therapy This information is intended only to be a guide to what you can expect when you start intravenous Flolan treatment. If at any point you feel you do not understand what is happening or why please do ask questions of either the doctors or nursing team. What is pulmonary hypertension? The pulmonary arteries carry oxygen-poor blood from the right side of the heart to the lungs. The blood collects oxygen from the lungs and then is pumped back to the left side of the heart. Pulmonary hypertension is a rare condition where the blood pressure in the pulmonary artery rises above normal levels. As the pressure rises, the walls of the pulmonary arteries become thicker. This abnormally high pressure results in the heart having to work harder to pump blood through the lungs and back to the heart What is epoprostenol (Flolan)? Prostacyclin is a substance that is naturally present in the body. This substance widens all the blood vessels in the body, including the pulmonary arteries. Flolan is a prostacyclin medication that works to widen the blood vessels and reduce the build-up of cells around the blood vessel walls. This allows blood to flow through the arteries with more ease. The aim with this therapy is to improve symptoms and give you a better quality of life. However it can take several months before a benefit is felt.
Funding from your primary care trust (PCT) We will request funding to pay for your Flolan therapy from your PCT. This is because intravenous Flolan therapy is expensive compared to most medicines. One year s treatment can cost between 20,000 and 70,000. We do not usually begin therapy until your PCT have agreed. This agreement can usually be made within 1-2 days. Starting therapy The decision to start Flolan therapy has been made between you and the pulmonary hypertension team based on the following factors: How far you are able to walk How bad your symptoms are The results of various tests carried out on you Your response to any treatments so far Intravenous Flolan therapy needs to be started in hospital. The nurses will contact you and arrange a date to come into hospital to start therapy. (If you are unwell you may already be in hospital.) Possible side effects People who are treated with intravenous Flolan therapy can experience side effects. This is because Flolan will widen all your blood vessels (not just the ones in your heart and lungs). These side effects are related to reduced blood pressure. The most common side effects suffered are Headache (it is possible to take painkillers if necessary) Flushing Dizziness Nausea Diarrhoea Jaw pain Pain in feet, ankles Many people find that side effects reduce with continued usage of the medication.
The Hickman Line To begin with, intravenous Flolan is often given into a vein in your hand or arm (via a cannula). This will be started as soon as possible when you are in the hospital. Then a central venous catheter is inserted into a vein in the chest. This is called a Hickman Line or Groshong line. Once in the bloodstream, the effect of Flolan only lasts for minutes and so the medication is given slowly and continuously. Your dosage will change regularly and you will have a dosing regime to follow. This will be explained to you while you are in hospital. The Pumps Flolan is continuously pumped through the body by a portable battery-operated pump. There are two types of pump used to deliver these drugs. You will decide with the team which pump is suitable for you. 1. AMT Crono Pump The pump is fairly small and comes with a bag that can be put around your neck inside or outside your clothes.
2. CADD Legacy pump This pump is usually worn in a small bag across the body. A nurse will show you how to draw up the medication into the pump and how to operate either pump. You will also be told what to do if it breaks down. The medication syringe will need to be changed every 12-24 hours. You will be given written information about everything so you don t have to worry about remembering it all at once! How will I know if the drug is working? You may find that you can walk further and do more general activities. Shortness of breath and fatigue may also improve. We will monitor this when you come to clinic and when the specialist nursing team call you by phone.
Learning to manage intravenous Flolan at home While in hospital, you will learn how to mix up the Flolan solution and programme the pump. You will also learn how to safely connect each new infusion of medication to the end of your Hickman line. This process is called aseptic technique. A high level of cleanliness is necessary to care for your Hickman line. This is to reduce the risk of infection. The amount of time it takes to learn how to safely manage your treatment at home varies. You will not be sent home until both you and the nurses are completely sure that you are able to manage the treatment. The majority of patients stay in the hospital for 1-2 weeks after intravenous Flolan therapy is started but you will be able to stay as long as you want to. When you go home When you leave the hospital you will be given support and phone numbers to contact us if you have any questions or problems. You will be asked to carry a card (the size of a credit card!) with you at all times. This has basic information about the therapy and telephone numbers of who to call. You will have new supplies of Flolan and equipment for the pumps delivered to your home by a company called Healthcare at Home. The nurses in the hospital will notify Healthcare at Home when you leave the hospital and you will be contacted regularly at home by the company to ask what supplies you need. The cost of this service is included in the money which your PCT has provided. The nursing team will also contact your local district nursing team to help you with dressing changes when you first go home. Many people starting intravenous Flolan treatment are concerned that it will interfere will their daily activities. Once you are used to the treatment this is usually not the case. If you would like to speak to someone who has already started treatment please ask the specialist nurses who can organise this for you. For further information and queries, please call the nursing team on 020 7472 6354. If you would like a large print or audio version of this information, please ask a member of staff. Pulmonary hypertension service / Patient information programme 2010 [review: May 2013] www.royalfree.nhs.uk