Learn strategies to live your best life possible during and after invasive candidiasis.

LIVING WITH INVASIVE CANDIDIASIS

If you or your loved one has been diagnosed with invasive candidiasis, you may have a lot of questions. This section addresses what to expect and how you can take care of yourself or your loved one to live the best life possible after an invasive candidiasis diagnosis.

Knowing What to Expect

Everyone’s treatment course will be different but here are some common issues faced by patients with invasive candidiasis:

  • Most patients with invasive candidiasis will have prolonged stays in the hospital, typically starting in the ICU but also in a less acute setting for additional treatment and observation. This can be a prolonged period—measured in weeks and perhaps lasting more than a month.
  • Alternatively, your provider may have you complete a course of therapy at home. It’s important to talk through your anticipated journey and how to optimize care.
  • Since your provider should start your therapy as early as possible, your therapy may have started before your provider knew which type of Candida you have. Therefore, you will most likely see a change in therapy. Also, the plan is to typically step down from the initial therapy to a less intense agent (often oral) while you recover from your infection.
  • In other circumstances, your provider may need to use combination therapy if the invasive candidiasis does not respond to the first therapy used or if resistance levels are high.
  • As mentioned, your provider will attempt to eliminate the source of the infection. That might involve removing catheters, infected prosthetic devices, joints, or drainage of infected material or surgery. However, some people can’t eliminate the source of the Candida. See the Sidebar Chronic Invasive Candidiasis: Getting Back to the Source.
  • With some of the drugs, particularly azoles, your provider may need to monitor drug levels. If you are taking other medications, the antifungal drug may affect their level or those medications may affect the level of your antifungal. Let the providers prescribing those medications know when you are starting or stopping an antifungal drug.
  • If you are a caregiver, get some support for yourself. Keep up with your own health and try to build in time to recharge.
  • Get involved. Your experience with invasive candidiasis has impacted your life. That experience could help others. Would you like to help us advocate for improved candidiasis care? Click here to connect with us, and we can explore opportunities for you to make a difference!

HELPFUL TIP

 

COMMON PROBLEMS AFTER AN ICU STAY

Some lingering problems after an intensive care stay. MyCARE convened a panel of fungal patients and caregivers to discuss some issues they experienced during the recovery phase of an invasive fungal infection. Some common symptoms that patients experienced include:

  • Fatigue
  • Difficulty accepting the new normal
  • Depression
  • Trouble sleeping
  • Post-traumatic stress syndrome.

These conditions can be related to the fungal disease, or they can also be part of something called post-intensive care syndrome (PICS). Along with the above issues, post-intensive care syndrome can also include vocal problems after being on the ventilator, reduction of muscle mass, memory loss, and impaired decision-making. If you experience these symptoms, it’s important to get help! For tips on addressing the long-term effects of ICU stay, including  managing PICS,, see the THRIVE resources from the Society of Critical Care Medicine.

 

To learn about one patient’s experience with Candida auris, please see the MSGERC Faces of Fungal Infection video series (see Leslie’s story).

DEALING WITH THE FINANCIAL IMPLICATIONS

Before you or your loved one starts a therapy, you should ask your doctor to contact your health insurance company to find out whether these medications are covered by your insurance and if you will be responsible for paying any part of the bill. You can also look into coverage on your own by contacting your insurance company. Consider the following:

  1. If you have commercial insurance. With commercial insurance, you may receive co-pay assistance from the drug manufacturer. Financial assistance information for branded antifungals is shown under each drug’s name.
  2. If you have insurance from a federal/state program (such as Medicare, Medicaid, or Tricare). If you have insurance through a federal/state insurance program, you can’t receive financial assistance from the drug manufacturer, but you may be eligible for co-pay assistance from an independent charitable foundation.
  3. If you are not insured. If you are not insured, you may be eligible for free medications through drug manufacturers, charitable organizations, or designated hospitals, depending on your income. To find additional financial assistance, see hrsa.gov
  4. Which type of therapy you are receiving (oral vs IV). For insurance purposes, oral drugs may be treated differently than IV drugs. If you are on Medicare, oral drugs will, most likely, be covered under Medicare Part D, which is the prescription drug benefit. IV drugs will be covered under Medicare Part B. Note that there may be an out-of-pocket cost difference because of this differentiation.
  5. Whether you will be able to work. Treatments can affect your ability to work. Here are some questions to ask yourself: Are you able to miss work during treatment, either to receive infusions or because of the side effects of therapy? Does your work require you to travel? If you work full time, can you arrange a flexible schedule to meet your treatment requirements? It’s important to consider these factors and find out your legal protections under the Family and Medical Leave Act (FMLA). The Patient Advocate Foundation (800.532.5274) can assist in this process.
  6. Caregivers should know their resources. Check out this US government page that provides resources for caregivers, including information about paid family leave and paid caregiving programs. The Society of Critical Care Medicine has a range of resources on critical illness on the My ICU Care Thrive site.

Science Sidebar:

Chronic Invasive Candidiasis: Getting Back to the Source

For some people, invasive candidiasis is a long-term battle. Some of the underlying conditions that cause invasive candidiasis to linger include:

  • Hepatosplenic candidiasis. This is a form of candidiasis that most often occurs in people with immune system problems from cancer chemotherapy. Candida is typically present in the liver and/or spleen. This rare disease persists for long periods, and treatment typically lasts for 3 months or longer. Sometimes steroids are also used in the treatment to calm the immune system.
  • People with intra-abdominal fluid collections that don’t respond to surgery.
  • Infection of ventricular assist devices, which are used to manage heart failure, can be affected by Candida. One study reported candidiasis in 6% of patients. In some cases, removal of the VAD is not possible, so the infection is managed on a more chronic basis.
  • Other difficult-to-remove prosthetic devices may lead to chronic candidiasis, such as vascular grafts.

For these chronic candidiasis conditions, there are considerations in terms of choice of therapy, whether it be IV or oral. If the therapy is IV, the question becomes where to administer it and at what frequency. These are important considerations to discuss with your provider, along with the long-term impact of prolonged antifungal therapy on  side effects, cost, and drug-drug interactions.

Patient Perspective

Living with a chronic fungal infection is life changing, especially if you need anything beyond pills to control your disease. Some fungal patients, including me, need to receive treatment via injections or infusions. While the procedure itself may be quick, the process and dealing with side effects can take up your whole day.

Issues like side effects, frequency of administration, and other factors become big considerations for therapy when you have a chronic fungal infection. On the days when I get my amphotericin B, my whole day is shot. Fortunately, we’ve been able to reduce the frequency of my dosages, and I have had more of my life back.

Discuss any concerns you have regarding the frequency oy your treatments with your doctors, and you may find opportunities to reduce the amount of time you spend fighting your disease.

It is also important to understand that for patients like us depression, anxiety, and frustration are all very real and very common for both us and our caregivers. Mental and physical wellbeing are both equally important, so don’t let anyone minimize your experience or opinion.

-Rob Purdie, Invasive Fungal Infection Survivor

Key Terms:

Post-intensive care syndrome is a set of health problems that remain after critical illness. These problems involve the patient’s body, thoughts, feelings, or mind.