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.
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.
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.
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:
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:
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.
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.
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:
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:
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.
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.
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.
Hypoallergenic make-up may be used in moderation. Men should shave with an electric razor.
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.
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.
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.
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.
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.
It may be necessary at some point for patients to be reimmunized against certain diseases. Discuss this with your physician.
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.
Here is a list of some common first aid remedies: