Managing Life and Infections After Hematopoietic Stem Cell Transplantation
Life after Transplant
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Home Environment
Management -
Personal Hygiene
and Skin Care - Oral Hygiene
- Exercise and Rest
- Relationship
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Marital relations
and gynecological
issues -
Taking
immunosuppressants -
Types of
immunosuppressants
Home Environment Management
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1.
As your white blood cell count increases and you begin to recover following a hematopoietic stem cell transplant, it's time to prepare for discharge. About a week prior to leaving the hospital, a thorough cleaning of your home should be conducted using a solution of bleach diluted 200 times(5cc of bleach in 1 liter of water) and a disposable mop. If carpets are present, they should be removed. Old curtains should be laundered or replaced. Use a mold remover and dehumidifier to clean all corners of your home, especially in between furniture and under beds, to eliminate dust. Going forward, a comprehensive cleaning should be conducted about once a week, with regular ventilation.
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2.
Avoiding Pets and Plants After a Hematopoietic Stem Cell Transplant. For at least one year following a hematopoietic stem cell transplant, you should avoid having pets in your home. Similarly, ornamental plants, flower vases, and fish tanks should not be kept in your home for at least six months.
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3.
The floors of the patient's room, living room, and kitchen should be cleaned daily using commercially available disinfection wipes or ethanol disinfection tissues that are safe for human use. Once a week, a more thorough cleaning should be performed, reaching every nook and cranny. During this time, avoid using vacuum cleaners or steam cleaners.
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4.
The floors of the bathroom, bathtub, and utility room should be regularly cleaned using commercially available disinfection wipes or ethanol disinfection tissues that are safe for human use.
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5.
Bedding should be washed regularly, about once a week, and the inside of the covers should be aired out in the sun. If you are using a bed, be sure to wipe down the mattress during your weekly thorough cleaning.
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6.
If the indoor air becomes dry, you can maintain appropriate humidity levels by air-drying laundry or hanging a clean, wet towel on a clothes rack. However, avoid using humidifiers as they can easily foster microbial growth.
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7.
Regular filter replacements and cleaning, as per the product manual, are necessary when using air purifiers, air conditioners, and heaters.
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8.
During cleaning, the patient should avoid the area and should not handle garbage directly.
Personal Hygiene and Skin Care
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1.
It's necessary to monitor daily for symptoms such as skin rash, bruising, swelling, or erythema.
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2.
Both the patient and family members must wash their hands with soap before and after meals, after using the restroom, after returning from outside, and after contact with others.
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3.
Use a mild soap to shower every day or every other day. (Use pump soap; solid soap should not be used due to the risk of infection from the soap itself.)
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4.
You should thoroughly dry joint creases, axillae, perineum, and under the breasts with a soft bath towel.
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5.
Avoid causing skin damage due to excessive friction; do not scrub or rub hard with a rough towel.
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6.
Avoid saunas, public baths, steam rooms, full baths, and half baths for at least a year.
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7.
Use a personal bath towel.
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8.
If your skin is dry, make sure to apply an oil or moisturizing lotion generously after showering.
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9.
Alcohol-based lotions should be avoided as they can further dry out your skin.
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10.
Wear comfortable clothing and shoes, and report any issues to the medical staff.
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11.
Sun Protection : Skin is very sensitive to sunlight after high-dose chemotherapy and radiation therapy, so direct sun exposure should be avoided. Therefore, when going out, wear a hat, mask, long-sleeved clothes, and long pants, and always apply sunscreen (SPF 15 or higher) to exposed parts of your body.
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12.
Nails : Chemotherapy and radiation therapy can bring changes to your fingernails and toenails. Damaged nails may fall off, and as your body recovers, new healthy nails will grow. When trimming your nails, be careful not to tear your nails or cut your skin, and avoid applying manicure to prevent excessive dryness.
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13.
Hair : A few weeks after the transplant, new hair will start to grow, but it will be weak, slightly curly, and somewhat brown. At this time, use a mild shampoo to moisturize your hair and scalp, and always wear a hat when going out. Perms and hair coloring can be done at least a year later, but only after consulting with your primary care physician.
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14.
Other : Contact lenses should not be worn until instructed by medical personnel.
Oral Hygiene
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1.
Oral hygiene is very important for maintaining healthy gums and teeth after a hematopoietic stem cell transplant. You should brush your teeth more than three times a day, and you can use a special mouthwash as prescribed by your medical team.
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2.
Until your platelet count recovers to 70,000 /mm³ or higher, you should use a soft toothbrush and avoid using dental floss.
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3.
Following a transplant, radiation or chemotherapy can cause dry mouth. Consuming foods with high water content and drinking plenty of water can be helpful in these situations.
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4.
If your lips are dry, apply a non-irritating product like Vaseline.
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5.
If you have a dental problem, consult your primary care physician and obtain a dental consultation. Generally, dental treatments are prohibited for a year after the transplant.
Exercise and Rest
Regular exercise is important as it can help alleviate fatigue you may experience after a hematopoietic stem cell transplant, boost your immunity, aid in muscle and stamina recovery, and have positive effects on your diet and sleep.
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1.
Start with simple exercises that don't strain your body, such as calisthenics, walking, strolling, and climbing stairs, and gradually increase the amount of exercise.
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2.
Sports involving collisions, skiing, swimming, and ball sports should be avoided until your platelet count is 70,000 /mm³ or higher.
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3.
Instead of vigorous exercise, adjust the level of physical activity to match your personal health and fitness levels.
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4.
Start with about three times a week at first, and when you go for a walk, have a guardian accompany you.
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5.
Initially, start with 10 minutes of exercise, followed by 10 minutes of rest, and on the next day, increase to 20 minutes of exercise, followed by 20 minutes of rest. Gradually increase the time in this manner.
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6.
Exercise should be performed one hour after a meal. Avoid intense workouts in a short amount of time, and ensure you are well hydrated before and after exercise.
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7.
If you experience excessive fatigue, pain, dizziness, or vomiting, stop exercising.
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8.
To avoid direct sunlight exposure, wear a hat when you go outside, along with long-sleeved clothes and long pants.
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9.
Driving should be limited in the initial period after discharge due to the potential risk of accidents associated with muscle weakness and slowed reaction times from long-term hospitalization.
Relationship
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1.
For at least 6 months following an allogeneic transplant, or for the duration of immunosuppressant use, and for about 3 months following an autologous transplant (or 1 month for multiple myeloma), it's advisable to avoid places like supermarkets, markets, theaters, schools, restaurants, department stores, large stores, churches, or any crowded or enclosed space, including swimming pools. This is to prevent infection from bacteria or viruses in the air. If it's necessary to visit these places, such as for an outpatient appointment, wear a mask and take a thorough shower upon returning home.
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2.
It's advisable to avoid public transportation such as buses, subways, trains, and airplanes, where large numbers of people are present.
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3.
When at home with healthy family members you regularly interact with, it is not necessary to wear a mask.
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4.
If a family member catches a cold, avoid close contact with them and ensure they wear a mask. Besides the common cold, it's also important to avoid contact with anyone who has contagious diseases such as the flu, chickenpox, shingles, or measles.
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5.
Family members living with the patient should always maintain cleanliness to reduce the risk of infection, and wash their hands after returning from outside.
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6.
Limit visitors to 2-3 people at a time, and ensure they wash their hands thoroughly before meeting the patient. Preferably, the meeting should take place in the living room rather than the patient's room. However, visits from people infected with viruses such as the common cold, chickenpox, shingles, or measles are strictly prohibited.
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7.
Avoid paint, benzene, gasoline, or any products that contain these, as they can potentially decrease your blood cell count.
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8.
Typically, returning to school or work is possible about 3 months after an autologous transplant (or 1 month for multiple myeloma) and upon the cessation of immunosuppressant therapy for allogeneic transplants. However, the precise timeline for return should be discussed with your primary physician during outpatient visits.
Marital relations and gynecological issues
After undergoing a hematopoietic stem cell transplant and receiving chemotherapy, patients may notice a decrease in sexual desire compared to before their treatment. This is a normal response and can be attributed to various factors such as anxiety, worry, depression linked to the transplant and treatment process, nausea, fatigue, discomfort, and hormone imbalances caused by the cancer treatment. Feelings of avoidance or fear of contact with a partner may also occur. It's crucial for couples to understand these potential changes and foster open dialogue, listening to and understanding one another.
Many caregivers of patients, often the spouse, have reported intentionally avoiding sexual relations due to concerns about infection or recurrence. However, infections can be prevented with the appropriate precautions, and there is no risk of recurrence due to sexual activity. Even without engaging in sexual intercourse, there are many other enjoyable sexual activities, and maintaining a normal marital life is entirely possible. Therefore, communication and mutual effort between partners are key.
Couples can share a room, unless the partner is currently suffering from an infectious disease - in this case, the patient should use a separate room. Following a transplant, once the white blood cell count recovers to approximately 3000-4000 /mm³ and the platelet count to around 70,000 /mm³, normal marital activities can resume. It is recommended to shower before sexual activity and to use a condom.
Women who have undergone a transplant may experience vaginal atrophy and a decrease in vaginal secretions, which could lead to discomfort during intercourse. Therefore, after consulting with a gynecologist, using a water-based lubricant (such as K-Y Jelly or Astroglide) can help protect the mucous membrane and prevent discomfort or pain during intercourse. (Note: Petroleum jelly or oil-based lubricants should not be used as they can cause fungal infections.)
Men who have undergone a transplant may experience symptoms such as erectile dysfunction and ejaculation disorders. If you notice symptoms of infection such as discharge from the genitals, a burning sensation, itching, or sores, you should report these to your doctor.
For female patients, the need for platelet transfusions decreases around the time of discharge, at which point you may discuss stopping contraceptive pills with your primary doctor. If your period has not resumed about six months after the transplant and your disease is stable, you should consult your primary doctor. A consultation with a gynecologist or endocrinologist may be requested. The gynecologist will perform an ultrasound to examine the ovaries and uterus, and a female hormone test will be conducted to check the function of the ovaries. If the ovaries are found to be non-functional, female hormones will be administered. During this treatment, you may experience some bleeding, and the type and dosage of medication can change depending on the situation.
Taking immunosuppressants (excluding autologous hematopoietic stem cell transplant patients)
Precautions when taking medication
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1.
Avoid consuming grapefruit or grapefruit juice while taking the medication.
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2.
Be sure to take your medication at the designated times without missing any doses, and always check the dosage before taking it.
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3.
Be aware that absorption rates can increase when taking the medication with high-fat meals or fat-soluble vitamins.
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4.
Always take the medication with water. (Do not take it with other beverages.)
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5.
If you vomit within 1 hour after taking the medication, take it again.
Types of immunosuppressants
In order to maintain the appropriate concentration of the drug in the blood, you may undergo a blood drug concentration test at the outpatient clinic. On the day of this test, even if you have an outpatient visit in the afternoon, you should visit the hospital in the morning, have a blood test, and then take your immunosuppressant.
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1.
Cyclosporine (also known as Sandimmune) : Used for pediatric hematopoietic stem cell transplants and adult sibling hematopoietic stem cell transplants.
Side effects: Loss of appetite, Nausea, Diarrhea, Headaches, Hair loss, Gum swelling, Swelling, Seizures, and High cholesterol levels.
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2.
Tacrolimus/Prograf (FK506) – Adult sibling/non-related/family hematopoietic stem cell transplantation
Side effects : Diarrhea, nausea, vomiting, loss of appetite, high blood pressure, headache, hyperglycemia, high blood pressure, bloating, itching, hair loss, swelling, spasms, eye twitching, etc