Resuming Daily Activities

Your return home is an exciting time, but it also can be a very stressful and confusing time for you and your family. After being hospitalized for so long and going through such a physically and emotionally taxing experience, you may find you don’t have as much stamina or strength as you had hoped. You probably won’t be able to return to your normal family role right away.

Your family will be affected, too. Family members may find it difficult, for example, to see their caregiver as the one suddenly needing help. But it’s important for everyone to remember that these changes are temporary. Patience and support at this crucial time are essential. Family members will have to step in to help with housework. You may have to limit tasks that involve climbing stairs or strenuous activities.

Life is going to be different for a while. Extra help and understanding are needed, but it’s just for a while.

Your family will have a lot of questions. We encourage family members to accompany you on your visits to the outpatient clinic so they can ask questions and be involved in your care.

Housekeeping

Your house should be thoroughly cleaned in preparation for your return. The furnace filter should be replaced according to manufacturer’s instructions. (Consult with a heating contractor before you return home.) A small HEPA filter can be purchased for individual rooms to help maintain air quality.

A humidifier is recommended to keep the relative humidity at 40 percent; this helps maintain healthy mucous membranes. Portable units should be cleaned weekly. Units attached to furnaces should be cleaned biweekly. Ask someone to do this cleaning for you. Use distilled or deionized water in free-standing/ultrasonic humidifiers to reduce the potential of standing water bacteria.

Pets

Absolutely no birds are allowed in the home until three months after your BMT. Cats and dogs should be bathed by family members or friends before you are discharged and then often after that. Your pet may not lie on the furniture or bedding that you use. Do not have any contact with pet litter. Avoid all animal care. No new pets are allowed post-BMT.

Plants and Flowers/Gardening

Plants and flowers may remain in your house although you should not work directly with them. Watering plants is permitted, but there should be no direct contact with the soil. Gardening is not permitted.

Returning to Work or School

Discuss this issue with your physician. You may have to temporarily decrease your time spent at work or school.

Physical Activity

Continue the daily exercise program developed with your physical therapist. However, avoid rigorous exercise if your platelet count is below 50,000.

As for other activities, begin with light tasks and then progress to more demanding tasks. Schedule activities to avoid several consecutive busy days. When leaving your home, go out at off-peak hours.

Activities to avoid include:

  • Swimming in lake water
  • Using hot tubs or spas
  • Chopping wood
  • Cleaning the furnace
  • Cleaning the bathroom
  • Automotive repair

Dietary Modifications

Following your transplant, you will be on a Low Microbial Diet to reduce your exposure to bacteria and prevent infection and food-borne illness.  It is necessary to follow these guidelines if you are neutropenic (absolute neutrophil count [ANC] less than 1,000) or on immunosuppressive therapy. Your doctor will decide when it is safe for you to return to a regular diet.

Refer to the booklet titled “Guide to the Low Microbial Diet” for specific guidelines and recommendations. Our dietitians are happy to review your diet and answer questions at any time.

Please ask to speak with a dietitian if you experience any of the following:

  • Weight loss
  • Persistent poor appetite
  • Persistent gastrointestinal distress such as nausea, vomiting, diarrhea, constipation
  • Difficulty chewing or swallowing
  • Pain that is interfering with your ability to eat

It could take several months before your normal healthy appetite revives. To maintain good nutrition, eat small meals and snack in between. Drink plenty of water. Please discard all leftovers after 24 hours. Immediately freeze any food prepared in advance. Thaw it when you are ready to eat.

Sexual Activity

You should avoid sexual intercourse until your platelet count is above 50,000. Sexual desire may decrease due to the stress and demands of recovering from your BMT. Talk with your partner and allow yourself time for rest and relaxation before sexual activity.

For women, lubrication in vaginal mucosa may be decreased. Water-soluble vaginal lubricants will help. Vaseline-based or petroleum jellies are not advised.

You should use effective birth control for the time being because the effects of chemotherapy and/or radiation on a fetus are unknown. This can be discussed further with your physician. When using condoms, choose latex condoms that contain nonoxynol-9 spermicide.

It is important to know that toxic effects of chemotherapy and/or radiation may produce gonadal dysfunction and infertility. Please talk to your doctor or nurse practitioner about any concerns. 

Preventing Infections

In order to help you prevent infections, a number of activities are not permitted. Talk to your provider about specific guidelines you should follow regarding these general precautions:

  • Avoid crowds and people with infections.
  • Avoid handshaking.
  • Question those you come in contact with about recent immunizations or contagious diseases. Avoid people recently vaccinated with live viruses.
  • Wear an appropriate facemask when in crowds.
  • Avoid people who recently have been exposed to or have had chicken pox.
  • Check with your nurse practitioner or doctor before getting any vaccinations.
  • Check with your nurse practitioner or doctor prior to any immediate family members receiving vaccines.
  • Don’t change baby diapers.
  • Wash your hands frequently, especially before handling food.
  • Don’t use bar soap.
  • Minimize exposure to animals, particularly barnyard animals.
  • Don’t change cat boxes or handle animal feces.
  • Avoid construction sites and home remodeling.
  • At the first sign of fever or infection, call your doctor. Don’t wait.
  • Do not visit hospitalized patients.

Hygiene

Hand washing is the single most important practice to prevent infection! Make sure you wash your hands often, especially after using the bathroom, coughing or sneezing. Have instant hand sanitizers such as Purell‚ available.

Here are important tips for practicing good hygiene:
  
Mouth Care

During your daily oral care, you should examine your lips, mucous membranes, teeth, gums and tongue for bleeding, inflammation or sores. Use a Toothette‚ oral swab for oral care until your platelet count is above 50,000, then use a soft toothbrush, a fluoride toothpaste and chlorhexidine rinse. If you develop oral thrush (a yeast infection), you will be given prescriptions for Nystatin‚ rinse or Mycelex‚ lozenges, whichever is more tolerable.

Saliva production may be reduced after BMT. Sugarless hard candy may stimulate saliva production; artificial replacement products also are available. It is important to note that you may be extremely susceptible to dental decay after BMT and chemotherapy. Good oral hygiene is key to maintaining your teeth and preventing decay.

As a precaution, consult with your BMT doctor or nurse practitioner before any dental work is performed. You may require antibiotics to prevent infections, especially at the catheter site. Members of RPCI’s dental team are very familiar with treating patients before and after BMT. They are available to care for you at any time, now or well after your transplant is finished.

Skin Care. Your skin may be extremely dry and sensitive from chemotherapy and/or radiation and from other post-BMT complications.

  • Use a mild soap for daily hygiene, such as Ivory® or Dove®.
  • Use a lubricating product daily to add moisture, such as Eucerin®, Nivea® or Keri®.
  • Use mild laundry detergents such as Ivory Snow® or Dreft®. Do not use Tide® or detergents with added perfumes, dyes. Hypoallergenic products are acceptable.
  • Avoid direct exposure to the sun. Wear protective clothing when out in the sun, and liberally apply sunscreen of SPF 30 or more to unprotected areas.

Hair Care

Your hair will be baby fine and your scalp will be sensitive. Use a gentle, pH-balanced shampoo. Your scalp might be dry, but avoid medicated or dandruff shampoos.

Nail Care

You may notice changes in the appearance and texture of your nails. Use the proper equipment for nail care. Do not tear off nails. Use extra caution when trimming nails to avoid cutting the skin.

Face Care

Hypoallergenic make-up may be used in moderation. Men should shave with an electric razor.

Foot Care

Always wear protective foot coverings to prevent injury. Shoes should fit well and be comfortable to prevent blisters. If your feet are swollen, cut slippers open to accommodate the swelling while protecting your feet.

Ear Care

The external ear may be extremely dry and itchy. Use a lubricating, moisturizing product. Do not insert objects such as Q-tips® into your ears. Notify your doctor if you develop ear pain or discharge.

Nose and Throat Care

Do not use over-the-counter nasal sprays. Mucous membranes may be dry and uncomfortable. A home humidifier might alleviate this somewhat. Discuss this with the BMT staff.

Rectal Care

Do not use rectal suppositories. Avoid rectal ointments or hemorrhoid preparations until you talk with your doctor and health care team.

Even with good personal hygiene, you might have occasional itching, burning, swelling or discomfort. After a bowel movement, gentle washing with a mild soap and water is helpful. It is particularly important for females to wipe from front to back. Sitz baths are a good way to relieve symptoms of hemorrhoids and promote good hygiene. 

Lung Care

Do not smoke cigarettes, cigars, pipes or other substances that might irritate your lungs. Avoid people who are smoking and smoke-filled rooms. Avoid fresh paint or other lung irritants. If you develop a cough or shortness of breath, call your doctor or nurse practitioner.

Long-term Intravenous Catheter Care

Prior to discharge, your nurse will review dressing changes and flushing procedures. We will do our best to help you and your family members learn how to do these tasks at home. The visiting nurse from your home care agency also will review these procedures with you until you and your family members feel comfortable enough to handle them.

Children

If there are small children at home, request that their day care center or school notify you when there are any communicable diseases. Notify your doctor when children or family members are planning immunizations. Please, don’t change any diapers.

Reimmunizations

It may be necessary at some point for patients to be reimmunized against certain diseases. Discuss this with your physician.

Driving

Immediately following your discharge, driving is to be avoided due to the effect of such factors as medications, fatigue and weakness. It’s best to have others drive until your physician advises you differently.

Travel and Dining Out

You should not travel prior to discussions with your doctor or nurse practitioner. Consult with your doctor about air travel. Dining out is acceptable if the establishment is clean and you go at off-peak hours.

First-Aid

Here is a list of some common first aid remedies:

  • MedicAlert®. You should wear a MedicAlert® band at all times. Have it engraved Blood or Marrow Transplant, Use Irradiated Blood Products Only. Applications are available in the BMT unit.
  • Over-the-Counter Medications. Do not take over-the-counter medications unless permitted by your doctor or nurse practitioner. Robitussin®, Sudafed® and Tylenol® are allowed, but check with the BMT unit before using them.
  • Headache. You should report headaches to your doctor or nurse practitioner.
  • Upset Stomach. Call your doctor if you have difficulty keeping down food or medications. If you have heartburn, indigestion or sour stomach, you can use: DiGel®, Maalox®, Mylanta®, Riopan®, Rolaids® or Tums®. Alternagel®, Amphogel®, Basogel® and Phosphagel® are effective, but may cause constipation.
  • Diarrhea.  Please notify the BMT team before you take over-the-counter medications for loose, watery stools.
  • Constipation. Adequate fluid intake and regular exercise will help you avoid constipation (hard, dry stools or no bowel movement for two to three days). Milk of Magnesia® may be used. Do not use suppositories.
  • Minor Cuts. Apply direct pressure until bleeding stops. Clean with soap and water, and then apply hydrogen peroxide. You also may apply an antibiotic cream such as Neosporin®. Examine the site daily and call your doctor if the wound becomes more painful, red, weepy or swollen, or if you develop a fever higher than 100.5ÞF.
  • Bruises. Bruising for no apparent reason can indicate a low platelet count. If you are injured and notice swelling, apply ice and notify your doctor.
  • Insect Bites. Apply a liquid or stick insect repellent. Do not use aerosol sprays. They might irritate your lungs. If bitten, keep the area clean and dry. Calamine® lotion may decrease itching. Solarcaine®, Americaine® and topical anesthetics that end with “caine” are not advised for pain relief because they can interfere with monitoring your skin and cause irritation.