April 2018 - Corinthian Health Services Blog

It’s World PI Week! In honor of World PI Week and the Jeffrey Modell Foundation our centers participated in a ballon release.

World PI Week is about spreading the word about primary immunodeficiency. It’s an opportunity to educate and inform health policy-makers, schools, and the general public in an effort to promote early diagnosis and optimal treatment for people with primary immunodeficiency. This global event aims to create positive changes and practices to help support people living with PI.

Quick Facts About Primary Immunodeficiency

An immunodeficiency is when a part of the body’s immune system is either missing or does not function the way it should. When this problem is caused by genetics, it is called a primary, or inherited immunodeficiency. There are more than 200 forms of primary immunodeficiency, and more than 10 million people suffer from PI around the world.

PI most often shows up as “normal” infections that either don’t seem to go away or recur frequently. The biggest mistake physicians make when dealing with patients suffering from PI is that they treat the symptomatic infections without realizing that there is an underlying cause — primary immunodeficiency. Doing so can leave patients open to much more serious problems such as organ damage, physical disabilities, or even death. This is what makes it so vitally important to raise awareness about PI, both among the general public and the healthcare community.

What You Can Do to Help Raise Awareness

There are plenty of things you can do to contribute to the cause of raising awareness. Every little bit helps.

Share Your Story with The Community and The World

You can join the World PI Week campaign by simply sharing your own story. As a relative, a caregiver, a person living with some form of PI, or just as someone who wants to help, you can add your story to the World PI Week Story Book. Your story, messages of support or advice about dealing with PI will help raise awareness as well as help others. Once you’ve added your story, you can also share it through any or all of your social media profiles to spread the word even further.

Organize A World PI Week Event

The World PI Week Organization has all kinds of resources and materials available to help you organize an event in your area. You’ll find lists of past successful events to help inspire you, tools to help get the word out, and tips to make sure that your event is successful. You can also share your event through the organization’s interactive event map.

Sign the Call to Action Petition

The Global Primary Immunodeficiency’s Call To Action urges government all over the world to take steps to better understand, diagnose and manage treatment for Primary Immunodeficiency Diseases. It will only take a moment to add your name to the petition and show your much-needed support for this worthy cause. Every new name on the petition helps to bolster support around the globe.

Attend an Awareness Event Near You

There are PI awareness events happening all over the world. Chances are that there’s an event coming up somewhere near you. It’s easy to use the worldpiweek.org interactive map to find one. Attending or helping with an upcoming event is a great way to lend your support.

Sponsor World PI Week

The World PI Week initiative is still very young. Started just a few years ago, in 2010, the campaign has grown substantially, but still needs the help and support of the corporate community.

Funding from corporate sponsors helps the organization to produce materials like brochures, informational videos, posters, and other campaign materials. These materials are then used to help support the worldwide efforts of PI campaigners around the globe.

If you own a company or think the company you work for might be interested in sponsoring World PI Week, you can find all the information you’ll need to get the ball rolling on the organization’s sponsorship page.

Your Involvement Makes a Difference

Big changes always begin with small steps. By getting involved with World PI Week, you’re helping people all over the world to improve their quality of life. By raising awareness about primary immunodeficiency diseases, patients, caregivers and the medical community all become better educated and better prepared to deal with these chronic illnesses. Your efforts help those living with PI to stay healthier and live longer, happier lives.

When you’re undergoing IVIG treatment, it’s important to understand IVIG administration and each step of the process. If you know what to expect ahead of time, it will eliminate a lot of stress and allow things to go as smoothly as possible. Your doctor may follow slightly different procedures, but below are some of the most common situations and suggestions for dealing with them.

Your Responsibilities as a Patient

Before everything else, you should understand your responsibilities before, during, and after the procedure. You are, after all, the one in control. Exactly how the IVIG treatment process proceeds will be dictated by how you feel. As the patient, it will be up to you maintain a close and honest relationship with your doctor and other caregivers.

Your main responsibilities will be to cooperate as best you can, follow their instructions, and maintain an open and honest line of communication. Always let them know if there is anything you need or don’t understand. You should tell them immediately about any problems or issues that arise, especially those that might affect the course of your treatment.

Doctor or Nurse Responsibilities

Above all, safety should be the priority for any doctor or nurse whether they are administering IVIG treatment or educating a patient about infusions. The prescriber’s orders should be followed carefully, with any problems addressed and fully resolved before the infusion.

Assessments Before IVIG Administration

Before beginning the IVIG infusion, your nurse will look at several factors to help minimize any problems, discomfort or adverse effects and make sure you have a successful IVIG infusion experience.

Assess whether the IVIG product is appropriate for the patient. There are different types of IVIG products, which are NOT interchangeable. Your nurse will first check to make sure the present product is suitable for your particular case.
Assess the integrity of the IVIG product. Like any other medication, the nurse will check to make sure that the product is fully intact, no seals have been broken, and it has not been tampered with.
Check that the IVIG product is at the right temperature. The immunoglobulin solution should be at room temperature when it is administered.
Check that the patient understands IVIG therapy. The nurse will check with the patient to make sure they understand the purpose of the therapy and what will be involved in the process.
Check the patient’s general health and hydration level. The nurse should assess whether or not the patient is in a healthy state and properly hydrated. Any problems with health should be communicated to the prescriber. If the patient does not seem to be fully hydrated, this should be remedied before the infusion begins.
Check for any variation in weight. IVIG therapy prescriptions are based on the weight of the patient. Any significant change in weight could mean that the prescription would need to be adjusted.
Check heart rate and respiratory status. IVIG therapy can cause a fluid overload in patients with congestive heart failure. Their heart and respiratory status must be checked before and during infusion to avoid potential problems.
Check the patient for signs of fever. If a patient has a fever, the prescriber should be contacted and consulted for instructions. Depending on condition, the infusion may need to be postponed until the fever subsides.
Assess the need for pre-medications. If a patient has had any issues during previous infusions, the prescriber should be consulted for instructions to see if pre-medications may be necessary to help ensure a successful infusion.
Determine if there is a need for anesthesia. Some patients, especially children, may wish to receive local anesthesia to numb the sites where needles or catheters will be placed.
Assess emergency preparedness. The nurse will make sure that all emergency equipment is functional and nearby as well as make sure there are clear communication channels for reaching both the prescribing doctor as well as emergency services such as 911.
Assess the need for blood work before starting the infusion. Blood must be drawn prior to an IVIG infusion if it is needed for monitoring purposes. The nurse should go over any previous blood work with the patient as well as make sure that regular blood tests are being carried out as expected.
Assess the patient’s experience with prior IVIG infusions. Last, but not least, the nurse should ask the patient about previous experiences and what they expect to happen. Patients, children especially, may have routines they are used to that help them get through the experience with fewer issues. Nurses should try to follow these routines whenever possible.

Assessment During IVIG Administration

During the administration of the IVIG therapy, infusion, the nurse will monitor the patient’s general status and make sure that the infusion is being tolerated. This will involve asking basic questions about how you feel as well as monitoring vital signs for any changes. At this point, as the patient, there isn’t much more to do other than wait for the process to finish.

Assessments After IVIG Administration

After the infusion has been completed, the nurse will generally check on a few things that will allow him or her to assess how well you’ve tolerated the infusion and what could be done to improve your experience during the next one.

Check for problems related to the infusion. The nurse will check for any problems occurring immediately after the infusion that may have been caused by it, such as headaches, fever or rashes. In some cases, changes to the infusion protocols might be suggested to provide some relief in the future.
Assess the need for future infusions and discuss with the patient. The nurse should inform the patient of upcoming IVIG therapy sessions and their responsibility according to what has been ordered by the prescribing doctor.

The Typical IVIG Infusion

IVIG therapy typically consists of a dose between 400 and 500 milligrams per kilogram of weight, given every three to four weeks. The majority of patients tolerate the procedure well and experience little to no adverse effects.

Individual patients may get better results with a more personalized infusion regimen, just as some people respond better to one IVIG product over another. Once you and your doctor have decided on an infusion regimen that works for you, it’s important to stick with it and follow your doctor’s orders. If you have questions about IVIG administration, IVIG therapy, or the IVIG infusion process, you should talk with your doctor.

Archives for April 2018

5 Ways You Can Help Raise Awareness During World PI Week