A CF Patient and Family Guide to Lung Transplant Success

Insight from dedicated transplant recipients and their families, in partnership with our Transplant team, to help future lung transplant candidates.

What do I do now that I have been referred for lung transplant?

  • Make sure to report any physical/emotional changes by keeping in close contact with your pre-transplant coordinator.
  • Work with your CF referral clinic to make sure all records are being sent to Columbia
  • Exercising – especially in a pulmonary rehab program, doing whatever you can physically – leg lifts in bed, etc. *On days you don’t feel like exercising, are the days you need it the most*
  • Keep up with your treatments, keep and attend all doctor’s appointments,
  • Try to avoid being around people who are ill
  • Attend as many seminars as possible (only family members are allowed to attend seminars in person due to CF Foundation guidelines)

How can I prepare for my visits to the Transplant Program?

  • Always be sure to have a caregiver accompany you to pretransplant visits. Your caregiver may notice things about your health that you may not.
    • Also, it is always helpful to have 2 or more people listen to what the doctor/coordinator has to say so that the chance of missing any information is reduced.
  • Come with questions written down to ask your doctor/coordinator. Consider having a notebook/binder specifically for your Columbia lung transplant visits.
  • Take notes during the appointment, and never be afraid to ask any questions that come up.
  • Prepare to be flexible with appointment/testing dates. There are a lot of patients in addition to you that need many appointments and tests scheduled, and some of these tests are only scheduled on certain days/times.
  • Your appointment guarantees you to see your doctor that day but may not necessarily be at the exact scheduled time. There may be a wait based on the needs of the patients scheduled ahead of you.
  • Be sensitive to the other patients around you. They may be having a difficult time.

What is the emotional experience of someone going through the transplant process?

  • It’s normal to feel depressed, overwhelmed, and stressed. Talk with your doctor about the potential for medication to help with these feelings.
  • You’re not alone, many people have gone through the process
  • Your attitude goes a long way. A positive attitude/outlook will get you through it.

What are some things I can do to help cope with the uncertainty of this time?

  • Journaling
  • Practicing gratitude
  • Surround yourself as much as possible with your support system – family/friends/coworkers/pets
  • Meditation/prayer – whatever is comfortable for you and helps to reduce stress and bring peace
  • Be kind to yourself. Allow yourself to have bad days, but they don’t have to all be bad.
  • Be cautious about your internet research – stick to reputable sites. Some examples include: Cystic Fibrosis Foundation cff.org, United Network for Organ Sharing - UNOS https://unos.org, Live on New York - https://www.liveonny.org
  • Get out and do things you enjoy based on your abilities.
  • Indulge in books and movies that you enjoy and bring a smile to your face.
  • Keep life as normal as possible. Try to stick to a routine.
  • Plan for the future. Give yourself something to look forward to.

What are some things my caregiver should consider?

  • Your caregiver should have a person/people to help them manage stress and manage care.
  • Your caregiver should take time for him/herself to do things that bring them joy.
  • Your caregiver should not be afraid to ask for help and take time away.
  • If possible, your caregiver should have at least one other person to help him/her with your care.
  • Caregivers should feel free to ask questions to the doctors/coordinators on behalf of their loved one.
  • Caregivers currently working should consider completing Family Medical Leave Act paperwork to prepare for caring for their loved one.
  • Be prepared for the possibility of your loved one waking up from surgery very confused and unsure of what has happened. Patience and reassurance are important in helping your loved one heal both physically and emotionally.
  • You are not alone. There are many resources for caregivers just like you. Visit https://transplantliving.org/before-the-transplant/caring-for-transplant-patients/ for Caregiver resources

What do I need to do once I am listed for transplant?

  • ALWAYS keep phone ON and CHARGED – both you and your back-ups so that the coordinator can reach you when lungs are available.
  • Make a plan of action for getting to the hospital.
  • Make a plan of action for accommodations for your children/pets while you are away.
  • Have items ready to bring to the hospital – for patient and for caregiver
    • List of medications
    • Phone charger
    • Phone
    • Comfy clothes to leave in
    • Insurance card(s)
    • Paperwork

How can I prepare my home for after transplant?

  • Have someone clean your home before you come home from the hospital.
  • Have hand sanitizer, masks, hand soap, paper towels available to you at all times.
  • Consider having guests take shoes off before entering your home.
  • Remind guests before they enter your home that you are immunocompromised (have a weakened immune system due to medications), and they should not enter if they are not feeling well.

What determines the wait-time for transplant?

Several factors affect wait time of matching lungs to a patient in need:

  • Availability and quality of donor lungs
  • Blood type
  • Antibodies your body might have
  • Body size
  • Distance from donor hospital to your transplant hospital
  • Medical urgency (L.A.S.)
    • Your Lung Allocation Score (L.A.S) is a score from 0 to 100 that determines your priority for transplant. Factors that go into this score include, but are not limited to your age, body mass index, the results of your 6-minute walk test, pulmonary function tests, oxygen and carbon dioxide levels , echocardiogram, right heart catheterization, kidney function and other factors that you can discuss with your doctor.

How can I update family/friends on my progress?

  • Make a phone/text tree for family/friends to be contacted regarding your surgery and recovery.
  • Consider making a private social media page to keep friends/family updated.
    ex: Caring Bridge, Facebook
  • Post-transplant, family members (a few people at a time in shifts) can visit you in the ICU for short periods of time.

What is post-transplant life like?

  • Daily medication schedule
    • Average 2x per day
    • Medications will change based on routine blood work
  • You must take a dose of antibiotics your transplant doctor will prescribe before any dental cleaning/procedure.
  • Document daily vital signs, such as heart rate, blood pressure, oxygen level and temperature.
  • Measure and document your lung function daily.
    • You will be provided with a device called “microspirometer”
  • You may require daily finger sticks/blood sugar monitoring if you develop diabetes due to high doses of Prednisone and other new transplant medications.
    • If so, a log of your blood sugars will be necessary
  • Physical Therapy/home nursing for a period of time after release from the hospital (different for each patient)
  • Wear a mask in public especially during cold and flu season.
  • Avoid those that have received live vaccines (MMR, Varicella, nasal flu vaccine, and shingles vaccine) for 4 weeks.
  • Avoid dogs that have received the live Bordetella vaccine (oral/nasal spray) for 4 weeks.
  • Dietary restrictions (for a full list of restrictions, refer to dietary guidelines handouts/booklet provided by medical staff)
    • All meat and eggs must be cooked well done.
      • Use a meat thermometer to make sure necessary internal temperature is reached.
      • Deli meat must be heated in the microwave until steaming. Buy prepackaged meats, not from the deli counter.
    • Thoroughly heat up leftovers.
    • Avoid raw mushrooms even after your doctor has approved raw vegetables.
    • DO NOT eat grapefruit, pomegranate, or starfruit, or drink those fruit juices as they interfere with some of your medications.
    • DO NOT eat sushi or other raw fish.
    • DO NOT eat food that has been sitting out uncovered or under heat lamps for any length of time.
    • All dairy products must be pasteurized – watch for soft gourmet cheeses.
    • DO NOT eat from buffets or salad bars.
    • DO NOT drink alcohol.

Precautions/restrictions: Always discuss restrictions with your medical team. You may have unique circumstances that may need to be clarified further.

  • Environmental restrictions

    • No gardening.
    • No lawn mowing.
    • Avoid exposure to bacteria/mold.
    • Wear sunscreen to avoid developing skin cancer.
    • Consider investing in SPF protective clothing for outdoors, especially on sunny days.
    • No swimming in fresh water or public pools – salt water and private chlorinated pools are okay.
  • Household restrictions

    • No living plants or cut flowers indoors if you have to be the one responsible for changing the water or tending the soil.
    • Limit household cleaning – no vacuuming.
    • Avoid exposure to harsh cleaning products and their fumes.
    • Avoid exposure to smoke or fumes. Ensure fireplace has sufficient ventilation. Similarly, discuss burning candles in the home with your doctor. It may depend what the candle is made out of.
    • Instead of reusing hand towels, consider using paper towels.
    • Pets: Discuss the precautions/restrictions surrounding having pets in your home after transplant with your doctor, and remember the following:
      • NO birds
      • NO cleaning fish tanks
      • NO handling litter
      • NO handling dog waste
  • Other Restrictions:

    • Avoid public transportation: buses, subways, trains.
    • Avoid exposure to construction.
    • No driving for about 4-6 weeks after surgery. Make sure to discuss specific time you can drive with your medical team.
    • When riding in the car, it may be safer to avoid sitting in the front for 6 weeks (in case airbags deploy).

Possible immediate post-transplant experiences:

  • Nausea
  • Pain
    • Remember to report all pain to the medical staff. It is important to get ahead of the pain so that your body can rest and heal.
  • Lack of appetite
  • Swelling
  • Hallucinations
  • Taking the swallow test (not for all patients):
    • If you do not pass the first round of testing, then you may have to use a liquid thickener until doctors feel you are able to swallow effectively. The purpose of this precaution is to prevent aspiration pneumonia into your new lungs.
  • Bronchoscopy from a patient’s perspective:
    • Bronchoscopy is a test that involves your transplant doctor using a special lighted scope attached to a camera to inspect the airways of your new lungs and take culture and biopsy samples to determine the health of your transplanted lungs. For this procedure, the doctors use moderate sedation so that the patient is comfortable, does not feel pain or discomfort, but is breathing on his/her own.
    • At times the patient may remember coughing during the bronchoscopy, but in cases where they begin to wake up, more sedation will be administered so that they are comfortable.
    • You will need to have someone bring you to and from your scheduled bronchoscopy. The sedation could take hours to completely wear off, and you will need help getting back home.
    • You may feel somewhat nauseated when waking up from the procedure and as the sedation continues to wear off.

Organ Donors:

  • Organ donors are heroes. The selfless decision of one person to become an organ donor can save up to eight lives.
    • “My donor, someone that never knew me, gave me a second chance by giving me life when mine was running out. I’m not sure there will ever be an adequate way to describe that gift other than as a pure, selfless blessing.”
    • “Organ donation is not a tragedy, but it can be a beautiful light in the midst of one.” - anonymous
    • “In order for lung transplantation to be possible, the donor must pass away. You must remember that the donor did not die because you needed lungs; however, it was decided in this event that selfless gifts would be given; life would be passed on to someone in need.” Chelsea Young, wife of a Cystic Fibrosis lung transplant patient.
  • Many families of organ donors find comfort in knowing that their loved one was able to help other people in their time of death. This can help with the family grieving process.