Home Therapy

Most cystic fibrosis patients prefer to be at home rather than in the hospital. Patients may recover more comfortably at home, eating home-prepared meals, sleeping in their own bed and being with family and friends. When our patients need IV antibiotics and it has been approved by our team, it is possible to have treatment at home. Completing IV antibiotics at home can be a positive option and promote recovery. The Cystic Fibrosis Team agrees and will participate with our patients and families to help this happen when needed.

Our team considers the following factors when determining if a patient is a candidate for home IV antibiotics:

1. Is the patient well enough to remain out of the hospital?
2. Does the patient have support at home to assure they will get IV medications on time, correctly and completely?
3. Does the patient have support at home so they can be provided with good meals and snacks, three or more chest therapies each day, enough fluids, plenty of rest, timely lab draws, PICC/IV care and monitoring of potential IV medication side effects?
4. Does the patient and or family/support person have a history of good follow through with other medications or treatments the physicians/practitioners have prescribed?
5. Does the patient/family have a good understanding of the responsibilities and risks of being home on IV antibiotics?

Once the patient/family qualifies for home IV antibiotics, one of our Pulmonary nurses will arrange a start up for home therapy. This process includes:

Establishing IV Access

Most often, arrangements are made for a PICC (peripherally inserted central catheter) to be placed. A PICC IV line is a “central” IV, which means it is placed in a larger vein close to the heart. It is placed by a radiologist, is secured and remains stable for the entire IV antibiotic course, which is a benefit of the PICC. The external part of the catheter is secured by a dressing and visible on the patient’s upper arm. There are several downsides to a PICC. Young children may require light “conscious” sedation for the PICC procedure. A PICC line is expensive but is most often covered by insurance. The PICC dressing must be changed once weekly and more often if needed. The dressing change may be difficult for young children to tolerate, and because the PICC is a central line, the patient/family must watch for symptoms that may require additional attention. For more information, please read “Home IV Antibiotics Expectations" below.

The other option for IV access is a regular IV in a peripheral vein. This type of IV is often called a Heparin well (HW). The HW is an IV needle “stick” in the patient’s lower arm or hand and done by a registered nurse. It can be a rough procedure for younger children because it is a stick. The downside of an HW is that it is unlikely to last for the entire IV antibiotic course, so the patient will require additional sticks.

Selection of IV Antibiotics

A Pulmonary physician will determine which IV antibiotics are best after reviewing the patient’s cystic fibrosis throat or sputum culture results, allergies, previous antibiotics and discussing these with the pharmacy staff.

Scheduling Start Up

A Pulmonary clinic nurse will review the patient’s medical record, current insurance and address and previous home IV antibiotic courses. They will then speak with the patient or parent regarding home care company preferences. Next, the nurse will contact the home care company and send the physician’s orders. The home care company will dispense the IV medications and supplies for home as well as arrange for home nursing visits (if needed) for PICC dressing changes, blood draws and HW restarts. The homecare nurse will do an initial teaching with the first dose of home IV antibiotics. If the patient has been in the hospital and is going to complete IV antibiotics at home, the homecare nurse will come to the patient’s room in the hospital for teaching. The patient or parent will also receive teaching from the inpatient staff nurses and must demonstrate competence in giving the medications three times prior to discharge.

If the patient has not been in the hospital and is starting IV antibiotics as an outpatient, the patient will first go to Interventional Radiology for the PICC line placement, if the PICC option has been selected. The Pulmonary clinic nurse will help schedule the PICC after speaking with the patient or parent about a date and time. If the HW option is selected, the patient will come to clinic at the time/date selected, where the HW is started. Once in clinic, the homecare nurse will teach and administer the first dose of IV antibiotics and assess for any adverse reactions. The Pulmonary clinic nurse then reviews “Home on IV Antibiotics Expectations," which can be found below.

Home IV Antibiotic Expectations

If the patient has a PICC line, a fever of 100.5 degrees or greater must be reported to the Pulmonary team as soon as possible. A fever with a HW is not as urgent to report quickly, but especially if accompanied with other ill symptoms, it is best to report promptly. Regardless of what type of IV (PICC or HW), the following are important to report when at home on IV antibiotics:

• New onset shortness of breath/difficulty breathing. This may be an allergic reaction to the IV antibiotics. This is a medical emergency if severe. Epinephrine will be dispensed with your IV antibiotic supplies. The patient or family should become familiar with it from the very beginning. If this severe reaction occurs, the Epinephrine must be administered and 911 must be called. NOTE: Severe reactions are rare but can occur.
• Rash, itchiness, hives, itchiness in throat
• Diarrhea
• Vomiting
• Inability to drink minimum amount of fluids each day while on IV antibiotics. The Pulmonary clinic nurse will let you know what this amount is. Fluids must not contain caffeine.
• Decreased urine output
• Difficulty pushing the IV medications
• Ringing in the ears, changes in hearing or other weird sensations in ears

The following are requirements of being committed to home therapy on IV antibiotics:

• Giving the medications as directed
• Doing at least three chest therapies each day with very good, persistent “huff” cough to get mucus out of the lungs
• Eating healthy meals and snacks and drinking all required fluids
• Getting good rest and sleep
• Keep appointments with homecare nurses, lab and the Cystic Fibrosis Clinic

Lab Work While at Home on IV Antibiotics

Lab work is usually required once a week. This is done to monitor kidney function because antibiotics can be rough on the kidneys and can also affect hearing. We also get labs to help us know that the patient is getting enough but not too much of the IV antibiotics. The patient/family must have labs done at specific dates and times. The Pulmonary clinic nurse helps to arrange start up and will review details with the patient.