After your Discharge

Recovery from your allogeneic stem cell transplant - After your discharge from hospital 

Usually, three to four weeks after your stem cell transplant (SCT), 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. 

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  

After you are discharged, you will be given an appointment to return to the Verspeeten Family Cancer Centre outpatient transplant clinic on a Tuesday or Friday.  

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, monitor your immunosuppressive medication levels, and to see how well your liver and kidneys are working.  

Your cyclosporine or tacrolimus level will be done when you visit the clinic. Do not take your morning dose of cyclosporine or tacrolimus before coming to your clinic appointment. Bring the dose with you and take it after the blood sample has been drawn.  

Bring a list of the medications that you are taking. Before you come to the clinic, check your supply of medications. Tell the doctor what you need so that prescriptions can be written while you are at the clinic.  

 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. The frequency of visits will depend on your condition. Generally, you will be seen weekly for the first several months after discharge.   

Central Venous Catheter (Central Line)  

You will most likely 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 the Interventional Radiology department 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 you avoid 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 likely 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, like 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 several months.  

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 or longer 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 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 a 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 from 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 twelve months after a stem cell transplant but can occur up to two years after the transplant.   

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.  

Herpes Zoster Virus (Shingles and Chickenpox)  

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.

Chickenpox 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 chickenpox after the transplant. This will not start for at least six months after transplant. For more information see the section below on vaccinations.  

Cytomegalovirus (CMV)   

About one half of the general population has been exposed to CMV in their lifetime. This virus remains dormant in the body for years and may become reactivated when the body’s immune system is weakened such as after an allogeneic stem cell transplant. Before your transplant, a blood test was done on both you and your donor to find out if either of you was carrying CMV. If one or both of you are CMV positive (that is; carrying the dormant form of CMV), your risk of getting a CMV reactivation is higher. Also, the risk of getting a CMV reactivation is higher in patients with graft-versus-host disease. A CMV reactivation is most common during the second or third month after the transplant.  

CMV infections can occur in several different organs including the liver, bowel, eye, and lungs. Infections of the lung and the bowel are usually severe and may even be fatal.  

If you tested positive for CMV before the transplant, you will be given preventive medicine at discharge until 100 days after transplant. This medication is called letermovir. You will receive more information about letermovir from the transplant team if you need this medication.  

You will also have regular blood tests done during your clinic visits to check for active CMV in the blood. If the virus is found in the blood above a certain level, you will be given a different antiviral medication. This may be given by mouth or IV if needed. You may need to be admitted to the hospital to begin the IV medication, but arrangements can be made for you to get the remaining doses at home.   

Fungal infections   

Fungi are organisms found in the environment and inside your body. Fungal infections are common in SCT patients during the first three months after the transplant, especially among allogeneic SCT patients with GVHD.  

To try to prevent fungal infections, you will be given a preventive medication called posaconazole to take daily for up to four months after transplant.   

Candida (yeast)

One type of fungi called Candida is found in the bowel, mouth and vagina and is controlled by the bacteria that normally live at these body sites. When you take an antibiotic to treat a bacterial infection, the normal levels of bacteria in your system change, giving Candida an opportunity to multiply, spread and cause an infection.  

Oral thrush is the most common type of Candida infection following a transplant. The signs of oral thrush are the presence of creamy white patches on the mucous lining of the mouth, and a sore and red mucous membrane. Vaginal infections are also often caused by Candida. The symptoms are vaginal itching and a thick white or yellow discharge. If you have these symptoms, call your family doctor or transplant doctor.  

Aspergillus   

Aspergillus is another type of fungus often found in the environment, especially around construction sites, damp basements, and in soil and dust. This fungus can cause infections in the sinus passages and in the lungs. You can minimize exposure to aspergillus by avoiding construction sites and dusty or moldy basements, gardening, cutting the grass and raking leaves. You should also avoid going into barns where livestock are housed or where hay, straw or grain are stored. Aspergillus infections are treated with either intravenous or oral medications.   

Other types of infection   

Pneumocystis jirovecii pneumonia (PJP)  

  • PJP is caused by organisms found in the trachea or windpipe. When your immune system becomes weakened, they may enter your lungs and grow into tiny cysts which cause pneumonia. The usual symptoms are cough, shortness of breath and fever. If these symptoms occur, call your doctor right away. You will be given specific antibiotics to prevent PJP for as long as your immune system is weakened.  

Toxoplasmosis  

  • Toxoplasmosis is often transmitted in the feces of cats. Toxoplasmosis may infect the brain, eyes, muscles, liver and lungs. A painful, inflamed retina in the eye is a common symptom of the disease and if not treated early can result in damage to the eye. Toxoplasmosis can be cured with early diagnosis and proper treatment.  

We recommend you avoid changing cat litter and avoid gardening where cats use your garden as a litter box.  

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. It’s important to remember that as with everything else after a stem cell transplant, getting back to normal in terms of sex will take time. Try to be patient with yourself.  

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. They will be given:  

  1. Starting six months after transplant  
  2. 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.  

Medic Alert  

A Medic Alert bracelet or necklace should be worn in case of an emergency. It will show that you are a stem cell transplant recipient. Before discharge from hospital, have a family member pick up a Medic Alert application form from the pharmacy. 

You may want to put the following information on your Medic Alert bracelet:  
  • Stem Cell Transplant   
  • Date of transplant   
  • Allergies you have   
  • Immunosuppressed  

Reasons to call for help or advice  

If you notice any of the following conditions, it is important to call the Telephone Triage line 519-685-8600.  

  • Temperature above 38 degrees Celsius/ 100.4 degrees Fahrenheit, or chills, especially if your blood counts are still low  
  • 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 chickenpox or shingles or someone who develops chickenpox within 48 hours of having contact with you  
  • Lightheaded, dizzy, or persistent headache  
  • Any other major changes in the way you feel  

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 Ontario Health at Home case manager or service provider (e.g., VON, St. Elizabeth).  

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  

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