Patient Information: Frequently Asked Questions

Special preparations before the transplant

Your single biggest preparation will be the placement of a temporary central venous catheter, or "main line." This portal enables you to receive chemotherapy, medications, transfusions and IV nutrition without a fresh poke every time. Blood draws are taken from this site as well. The catheter will remain with you until the need for quick intravenous access winds down.

The catheter is a hollow tube made of silicone and is usually placed through the skin in the upper chest area.  Placement is usually an outpatient procedure lasting 30 to 40 minutes under light sedation.  You may experience some mild discomfort for a day or two afterward.

Since the catheter site is a possible source of infection, it requires specialized care to minimize the risk and maintain function.  Left in place for weeks to months, the catheter will eventually be removed when you no longer need frequent intravenous access.

Additional Tests

Any patient considering a bone marrow transplant is thoroughly tested and evaluated to make sure they are physically able to tolerate the procedure. Certain body systems experience sizable stress during conditioning and recovery. It's very important that these systems are assessed in advance to gauge their health and ability to withstand the transplant procedure.

Heart

Usually assessed with MUGA scan, measuring the heart's ability to efficiently pump blood.

Lungs

Pulmonary function tests (PFT) evaluate lung capacities and the ability to transfer blood gasses efficiently.

Kidneys

A series of blood and urine tests collected over a 24-hour period help map the kidneys' ability to filter waste products from the blood.

Liver

Blood tests determine the liver's ability to detoxify blood, and produce biochemicals for digestion.

Dental

Infections of the gums or dental roots that compromise the body's defense systems are ruled out prior to transplantation.

Disease Assessment

Depending on the nature of your illness, other tests will be performed to evaluate the extent of its effects on your body.  Radiology testing - x-rays, CT, PET MRI and various bone scans - are performed to get a thorough analysis of your condition.  You will also need bone marrow biopsies and aspirations to complete the assessment.

Hospital Stay

Most transplant patients can expect a hospital stay of 3 to 4 weeks. If you are acting as a self-doner - supplying your own blood or marrow products - an outpatient transplant might be possible. If so, you'll still need to stay within a 30-minute drive of FCCT, Orlando.

Because your immune system will be compromised following a donor bone marrow transplant, most patients are required to stay in our specially designed inpatient BMT care unit.  Staffed by medical professionals trained to prevent, recognize and treat transplantation issues, this advanced- filtration unit provides a hygienic environment that greatly decreases the risk of infection.  

Visitors

Visitors are absolutely welcome- just a few precautions. They'll need to stop by the nursing station to thoroughly wash their hands. Visitors with colds or other infections cannot be allowed into clinics or patient rooms. Kids with no obvious symptoms are fine, but they should not have recently been given a live vaccination. Check with the child's pediatrician before any BMT unit visit.

Going Home

It's a process. You'll need the help of a caregiver, perhaps two. A caregiver is usually a family member or close friend who helps care for you 24-hours a day during recuperation. It's a requirement, and a commitment.

You and your caregiver will need to stay in the Orlando area until you're well enough to go home. If yours was an autologous (self-donor) transplant, count on one to three weeks.  Allogenic (donor) transplant patients can expect that stay to be two to four months.  Outpatients usually stay about 100 days. Housing assistance is available.

Genetic Matching

It's called HLA typing. Human leukocyte antigen typing. This is a test that looks for specific antigens on white blood cells; HLA Class I & II antigens.  Donors and recipients are typed to provide as close a match as possible. Some antigens are not as critical as others, so an acceptable pairing might be an 8/10 antigen match.

Stem Cell Collection

Several methods are used to collect stems cells for use in transplants. The most common involves filtering stem cells from blood; peripheral blood stem cell harvest. Stems cells normally harbor within the bone cavity's marrow and must first be mobilized for collection.  Medications are administered that get stems cells on the move. The donor is connected to an apheresis machine, much like a kidney patient connects for dialysis. White blood cells (containing stem cells) are filtered from the donor's blood, while all other blood cells and serum are returned to the donor's body. The collection process is largely painless, takes about 4 hours and is repeated daily (up to about 7 days) until enough stem cells have been collected.

Stems cells are also extracted from donors by way of a bone marrow harvest.  This is a surgical procedure that's performed until general anesthetic.  Marrow is drawn from the donor's hip bone with a special syringe. The site of the extraction might be a little sore for a week or so afterward, and donors may experience some stiffness or difficulty walking.  Otherwise, discomfort is usually minimal.

The main risk is minor, and related to the use of general anesthetic. Donors are always evaluated beforehand to make sure they can tolerate the procedure. In both peripheral blood and bone marrow harvests, less than 10% of the donor's stem cells are removed from their body and the marrow regenerates quickly.  To prevent anemia, donors will often donate blood to themselves in advance, to be transfused as need after the collection.

Conditioning

For a transplant to be successful, you must first undergo a conditioning regimen that prepares your body to accept the new stem cells. Usually this means chemotherapy, but might also include full body radiation and other medications. Your immune system will be cleared of both healthy and unhealthy marrow cells in a series of treatments lasting three to six days. For donor transplants, medications will be given to help suppress your immune system to better accept the new stem cells.

Transplantation

It's much like a blood transfusion by IV, and takes an hour or less in most cases. For autologous self-donation, your own frozen stem cells are thawed at bedside and infused immediately. Allogenic donor transplant stem cells go through a number of filtering and selection processes before being infused in the same manner. The transplant patient is watched closely for signs of allergic reaction in much the same way as a traditional blood transfusion. The stem cells naturally migrate through the bloodstream to bone marrow cavities.

Recovery

When stem cells have successfully implanted in bone marrow cavities, engraftment has taken place and is marked by rising blood cell counts overall. White blood cells usually engraft first. When white blood cell numbers rise (especially neutrophils), the risk of infection goes down. Red blood cells and platelets are slower to engraft.  Your discharge from the hospital will come when your body has sufficiently recovered from the effects of chemotherapy and/or radiation. Even then, your blood counts might still be low. If you have no active infections and your appetite has returned, you'll be discharged to the outpatient clinic.

Bone Marrow Transplant Side Effects

• Low blood cell counts. Conditioning suppresses the bone marrow's ability to produce blood cells, often requiring blood cell transfusions.
• Risk of infection. Low white cell counts may require additional antibiotics
• Risk of bleeding. Low platelet numbers may require transfusions.
• Sores of the mouth (canker sores)
• Diarrhea and digestive upset
• Nausea and vomiting
• Loss of appetite, difficulty eating. You may need IV nutrition
• Electrolyte imbalances
• Swelling of the extremities
• Weakness, general fatigue
• Skin rashes
• Hair loss
• Possible damage or weakening of heart, lungs, liver, kidneys and other organs
• Rejection. Bone marrow cells fail to engraft and grow. Also Graft vs. host disease.
• Infertility (Temporary, possibly permanent)
• Numbness or tingling in extremities
• Hearing loss
• Changes in vision, sometimes requiring a change of eyewear prescription.
• Death or disability

This list covers the most common side effects, but you might experience others.  Regardless, you'll be extensively monitored and will receive various special treatments to minimize the impact of side effects. There will always be a slight risk of death in any bone marrow transplant procedure.  Much depends on your individual physical condition, diagnosis, extent of the disease and the type of transplant being performed. In most cases, the risk of death can be managed down to a very low level. Of course, we will thoroughly discuss all risk factors with you prior to any medical procedure.

Graft vs. Host Disease (GVHD)

This is basically a case of rejection, but it's the new stem cells that do the rejecting. The new stem cells recognize the body as foreign and begin to attack the patient's own cells. GVHD exhibits as a rash, inflammation of the liver (hepatitis), diarrhea and other reactions. The biggest factor in reducing the likelihood of GVHD is the quality of match between the new stem cells and the patient's body. Various medications can be used to lessen the degree of interaction, but GVHD may persist even in best case scenarios.

Actually, low-grade GVHD can be somewhat beneficial if managed properly, and can actually increase the chances your disease can be cured.  Chronic GVHD is usually treated with additional immune-suppressing medications.

Post-Transplant Precautions

In order to reduce the possibility of complications, you'll need to follow some special precautions after being released from the BMT unit.

• Restricted diet. Specifics made on a case by case basis.
• Avoid crowds, large gatherings and sick individuals.

            Note: Wearing a surgical facemask is of very limited benefit.

• Avoid living plants, sick pets and exotic animals.
• Do not return to work until given the approval by your transplant team.
• Avoid direct exposure to the sun. Always use sunscreen.
• Sexual activity restrictions.

You'll receive more detailed instructions prior to your release from the BMT unit.