Usually, two to three weeks after your stem cell transplant, your blood counts will have recovered to a safe level. Your health care team will assess you to see if you are well enough to be discharged home or from the outpatient transplant program.
Discharge Guidelines
Generally, you can be discharged from the hospital when:
- You no longer have a fever or any signs of infection. You may still need IV or oral antibiotics.
- Your counts are high enough that you don’t need blood or platelet transfusions more than three times a week.
- You are able to take your medications by mouth.
- You are able to eat and drink enough.
- You are able to look after basic activities of daily living (e.g., get to bathroom, shower with supervision).
- You have a caregiver who is available to help you 24/7 (either in person or by phone).
Follow-up appointments
If you are well enough to be discharged early around day 15, you will be given several appointments in the first week to be assessed by the outpatient transplant nurse practitioner. These appointments are usually located in the C7 Day Hospital. On these visits your blood counts will be checked, and the nurse practitioner will assess your symptoms and progress. Transfusion or IV medications can be given at these follow up appointments, if required.
If you require a longer admission, you may not need to be seen in the day hospital but will have your after-discharge care in the Verspeeten transplant clinic.
After you are discharged, you will be given an appointment to return to the Verspeeten outpatient transplant clinic on a Tuesday or Friday. This is usually within one or two weeks for a check-up in the post-transplant clinic.
You do not need daily blood tests after discharge as your blood counts are expected to continue to go up.
At this outpatient visit, you will have blood tests to follow your blood count recovery and to see how well your kidneys are working.
A nurse will:
- Check your blood pressure, heart rate, temperature and weight.
- Review your medications
- Review any new or ongoing symptoms or concerns.
- If needed, we can arrange for you to get extra IV fluid infusions or blood transfusions during these visits. We can also arrange extra IV fluids or medications in the community if necessary.
The transplant doctor or nurse practitioner will assess your progress. If you do not have any serious problems related to the transplant, you are likely to be referred back to your oncologist or hematologist for further follow up.
Bring a list of the medications that you are taking. Before you come to the clinic, check your supply of medications. Tell the doctor or nurse practitioner what you need so that prescriptions can be written while you are at the clinic.
Once your short-term symptoms from the transplant are gone, you can resume checkups with any cancer doctors you may have. If you need any testing (e.g., CT or PET scans, blood work) before this checkup, the transplant team or your regular cancer doctor will arrange them.
Please call telephone triage at 519-685-8600, if you are unwell or have not heard about a follow-up appointment with your transplant doctor and nurse.
Central Venous Catheter (Central Line)
You may go home with this central line still in place. The transplant doctor or nurse practitioner will decide when you are ready to have your central line removed. It will need to be removed in Interventional Radiology at a separate appointment. This will be done when you no longer need IV fluids or antibiotics and your blood counts, especially platelets, have recovered.
If you go home with the central venous catheter, a visiting nurse will care for the catheter or teach you or a family member how to look after it.
It is safe for a community visiting nurse to access, flush, and change the dressing after your transplant.
Diet
Eating a well-balanced and nutritious diet will help you to recover faster. When you are discharged from the hospital, you do not need to follow any special diet. However, you will still need to be careful about the safety of foods that you eat.
We strongly recommend avoiding unpasteurized foods such as milk, cheese or honey and raw fish sushi due to risk of food related infections.
How you may feel after the transplant and your blood counts have recovered
Even after your blood counts recover, you will still have fatigue (feel tired). The best way to fight fatigue and low energy is to slowly increase the amount of activity you do every day.
Feeling tired can persist for many months after the transplant. Regular exercise, such as walking, is the best remedy.
You may also have other symptoms, such as:
- Nausea and sometimes vomiting,
- Diarrhea,
- Poor appetite
- Changes in taste
- Hard time sleeping
These symptoms are common and improve slowly, likely over the first month.
You can get medications that may help settle uncomfortable symptoms. Ask your nurse, nurse practitioner or doctor about this at your clinic visits. You may need to keep taking medications to control your symptoms (such as nausea) until your symptoms get better.
Activity tolerance
Following the transplant, you may need help with your usual tasks and chores. We recommend that you increase your activity level slowly. It may take up to six months to return to your normal level of activity. Your doctor can help you decide when you are ready and able to return to work or school.
Infections
About 100 days after the transplant, the body’s immune system is starting to recover but is not completely recovered. Fortunately, colds, viral sore throats and other flu-like illnesses seem to be overcome normally. However, bacteria, fungi and some other viruses that are harmless to most people can cause very serious infections in transplant patients. Usually, six to twelve months after the transplant, most of the immune system has recovered.
For at least the first three (3) months after the transplant we recommend that you:
- Wash your hands or use hand sanitizer (especially after toileting and before eating).
- Avoid crowds. If you go out in public places, go when the least number of people will be there.
- Avoid anyone feeling unwell with flu like illnesses, colds, fever or cough.
- Avoid people with chicken pox, shingles or measles. If you are exposed to chickenpox, notify the transplant team right away. You may need to be given medication which will prevent you from developing this illness.
- While it is not necessary for you to stay away from your pets, avoid being bitten or scratched by them. You should not clean up animal feces. This includes litter boxes, yards and barns.
- Do not go into barns where livestock are housed or where hay, straw or grain is stored.
- Do not swim until your central venous catheter has been removed and the exit site is healed.
- Avoid contact with babies who have received an oral immunization or children who have received live vaccines (e.g., chicken pox, measles, mumps, rubella) in the past several weeks.
- Check with your transplant doctor or nurse practitioner before having a dental checkup. You may need to take antibiotics before you have dental work done.
Viral infections
Viral infections after a transplant can happen because of exposure to a new virus or reactivation of an old virus that has been dormant in your body. The most common viral infections after an autologous stem cell transplant are from the “cold sore “virus (herpes simplex virus) and the “chicken pox” virus (herpes zoster virus) which causes shingles. These infections are most common during the first 12 months after a stem cell transplant but can occur up to two years after the transplant.
“Cold sore virus” (Herpes simplex virus)
The signs of an infection from the herpes simplex virus are: painful blisters (cold sores) on your lips, in your mouth or in your genital area. You should report any of these signs to your doctor. Anti-viral medications will be given to treat the infection.
Shingles (Herpes Zoster Virus)
Often the first sign of shingles is pain. You will notice an itching, blistered skin rash along one of the body’s nerve branches. The nerve endings under the skin are infected and cause a great deal of pain. Shingles most commonly occur across the middle and lower chest, starting at the middle of the back and extending around to the front of the chest. Shingles involving the eye can lead to damage if not treated. Shingles can occur more than once after your transplant. The itching, burning and pain can continue long after the rash and blisters have gone away. At the first sign of shingles, it is important to promptly notify your family doctor or the transplant team, so that treatment with an antiviral medication can begin as soon as possible.
Chicken pox is very contagious. People who have never had chickenpox should avoid contact with anyone who has active chickenpox or shingles. If you are in direct contact with anyone who has chickenpox, call your family doctor or the transplant team.
We recommend you get reimmunized for shingles and chicken pox after the transplant. This will not start for at least six months after transplant.
Sexual activity and fertility
If both you and your partner are feeling well and are free of infection, you may resume sexual intercourse. It is very common for both men and women to feel less sexual desire while they are recovering from the transplant. The many reasons for lack of interest include fatigue, stress, and changes in your hormone levels. If your desire to become more sexually active does not increase as your recovery progresses, bring up this issue during your follow-up visits.
The effects of the pre-transplant chemotherapy are likely to cause sterility. Female patients may have early menopause. Your doctor will talk to you about the option of taking hormone replacement. You may have vaginal dryness and need additional lubrication during intercourse. We suggest that a water-based lubricant be used instead of petroleum-based ointments such as Vaseline.
Since sterility is not certain and may or may not be permanent, it is advisable for you or your partner to use some form of birth control. Women should not use an IUD/IUS or a diaphragm, since these methods can cause bleeding or an infection. Please talk to your health care team about other methods of birth control.
Vaccinations after your transplant
After your transplant, your immune system may be weakened from the chemotherapy. Vaccinations after transplant are recommended to defend your immune system against common infections.
These vaccinations are given as injections (shots). They will be given:
- Starting six months after transplant
- By your family physician or primary care provider
There may be a cost to you for some of them. If you have a private drug benefit plan they may cover some or all of the cost.
We will provide you with two copies of the vaccination the schedule after your transplant. One for yourself and one for your family doctor. This will be given at your first Verspeeten stem cell transplant outpatient clinic appointment.
Reasons to call for help or advice
If you notice any of the following conditions, it is important to call the transplant team. If you notice any of the following conditions after you have been discharged from your transplant, it is important to call the Telephone Triage line at 519-685-8600.
- Temperature above 38 C/ 100.4 F, or chills.
- Breathing problems such as shortness of breath, wheezing, coughing or pain.
- Cold sores or other painful blisters on the skin.
- Problems with the central line such as leaking or inability to flush.
- Redness, swelling, pain, or discharge at the central venous catheter site.
- Inability to take medications.
- Persistent nausea, vomiting or diarrhea.
- Painful or frequent urination.
- Bleeding (nosebleed, blood in urine or stool).
- New unexplained pain
- Loss of appetite or weight loss.
- Exposed to someone with active chicken pox or shingles or someone who develops chicken pox within 48 hours of having contact with you.
- Lightheaded, dizzy, or persistent headache.
- Any other major changes in the way you feel.
Who to call for help
If you are having a medical emergency, please call 911 or present to your nearest Emergency Department. For non-urgent medical concerns, please refer to the information below.
During working hours: Monday - Friday (8:30 a.m. – 12:00 p.m. and 1:00 - 4:00 p.m.)
Telephone Triage Line - Verspeeten Family Cancer Program: 519-685-8600 to speak to the triage nurse
After hours : Weekends, holidays, evening, nights
- Email: CareChart@home
- Telephone: 1-877-681-3057
- An operator will transfer your call to a specialized oncology nurse who will help you.
- If the nurse is not available right away, a nurse will call you back within 15 minutes.
- You will be referred to home care for your central line care and any other health related needs. They can also be a source of assistance if needed. Check with your South West Home and Community Care case manager or service provider (e.g., VON, St. Elizabeth).