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Frequently Asked Questions
About preparing for the transplant
About post-transplant
About the Cord Blood Bank
About preparing for the transplant
1. What is involved in the pre-transplant work-up?
This varies from patient to patient but some of the procedures that may be done
include but are not limited to:
- Blood work
- Chest X-ray
- Heart studies (ECHO)
- Lung studies (Pulmonary function tests)
- Eye and dental examinations
- Spinal tap
- Bone marrow aspirate/biopsy
There may be other imaging studies (x-rays, scans) that
are necessary to evaluate the extent of your child's disease. These studies are
done so that we know the exact state of your child's health prior to the
transplant. You will be well informed as to which of these tests your child will
need. Your child will also have at least one, and usually two, central venous
catheters placed. As many of these tests and procedures as possible will be
scheduled for your child prior to their actual admission to the transplant unit.
The work-up process may take one to two weeks and you will be asked to remain in
town during this time.
2. What is a Central Line Catheter?
For your child's stem cell transplant, they will need a special IV (catheter),
called a central line, which will be inserted by a surgeon early on in the
transplant process. This catheter is generally called a central venous catheter. The
advantage of having a central line is that it eliminates most of the need
to draw blood by a needle stick. We can use this central line to give
chemotherapy and other medications, to give blood products, to give nutritional
fluids, to draw blood and to infuse bone marrow, stem cells or cord blood.
Remember, there may still be times when blood must be drawn from your child by a
needle stick.
The central venous catheter will be inserted in the operating room, or in the radiology
department while your child is asleep. The catheter itself is a soft, flexible
tube that is inserted into a large vein in the chest that leads to the heart.
This tube extends to the outside of the chest where it exits and may divide into
two or three separate tubes (lumens). The central venous catheter will remain in place
throughout the stem cell transplant and most likely will be left in place for
many weeks or even months. We will teach you and your child how to care for this
line on your own so that you can care for it properly after you leave the
hospital. The surgeon will fully inform you of the risks and benefits of central
line placement prior to the surgery.
3.. What should we bring to the hospital for our child?
You may want to bring with you:
- One week's worth of clothes (Please wash twice and
bring in plastic bags or boxes)
- Pajamas (tops or nightgowns that button down the front
are more convenient than slip-on tops as they accommodate the IV tubing more
easily)
- Basic toiletries, including a child-size soft
toothbrush (Oral-B brand recommended) and Arm and Hammer Baking Soda
toothpaste
- Slippers or sandals
- Favorite pillow/blanket/comforter
- Favorite toys/games/stuffed animals (wash twice!)
- Crafts/projects
- Books (especially school books and supplies)
- Scrapbook or diary
- Calendar
- Items to decorate room (pictures of family/friends,
posters, etc)
- Favorite VCR tapes/CDs/Sega Genesis games
- Laptop computer (some are available on the unit)
4. What should we bring to the hospital for the family?
- Clothes - locker space for parents is extremely
limited. Most of your personal items will need to be kept somewhere
outside of the hospital
- Toiletries
- Reading material
- Crafts/projects
- Journal or diary
- Address book with addresses/e-mail addresses/phone
numbers of family and friends
- Favorite food (snack) items for you and your child
- Laundry supplies
About post-transplant
1. When can my child return to school/work?
for an Autologous transplant:
In 3-4 months, subject to conditions which may slow immune recovery.
for a Matched Unrelated Donor:
In 6-12 months if there is no graft-versus host disease. These recommendations
are subject to change based on certain conditions which may slow recovery of the
immune system.
for an Allogeneic/Cord Blood transplant:
In 6-12 months if there is no graft-versus host disease. These recommendations
are subject to change based on certain conditions which may slow recovery of the
immune system.
2. When can he/she go to church, malls, movie theatres, etc?
for an Autologous transplant:
In the first 2-4 month with a mask. After that, no restriction.
for a Matched Unrelated Donor:
In the first 3-4 months, can go out in public with a mask. After that, use
caution and go where it’s not crowded until 9 months after transplant.
for an Allogeneic/Cord Blood transplant:
In the first 3-4 months, can go out in public with a mask. After that, use
caution and go where it’s not crowded until 9 months after transplant.
4. Can my child eat anything after going home? What about fast foods?
Yes to both questions. However, dietary restrictions may be necessary if
your child develops diarrhea, high blood pressure or lactose intolerance.
5. How should my house be cleaned before I bring my child home?
Clean carpets not cleaned within the past year. Air out the house at least
12 hours when raising up dust. This is not critical, however, and should not
delay discharge.
6. What about pets at home?
Healthy, domestic animals are OK. Your child should not handle pet food or
feces for 3-4 months.
7. What about smoking in our home?
Smoking around children promotes respiratory infections. If you cannot stop
smoking, designate one room in the house (such as your bedroom), some only
in there, and keep the door closed all day and night. Let us know if you
would like us to help you find a smoking cessation program.
8. Who can visit in our home? What about school-aged children?
Anyone, including school-aged children, who is healthy can visit. We
recommend small groups at most. Avoid parties and big groups.
9. When does my child have to wear a mask?
for an Autologous transplant:
Outside the home for 3-4 months. This is especially important when coming to
the hospital for follow-up visits.
for a Matched Unrelated Donor:
for 12 months outside the home and especially when coming to the hospital
for follow-up visits.
for an Allogeneic/Cord Blood transplant:
For 6 months outside the home especially when coming to the hospital for
follow-up visits.
10. How often will we need to come to the clinic? How long do we need to stay in
town?
This depends on a number of situations, including platelet count and recovery,
development of infection, and other complications. Most patients are seen
2-3x/week the first 2-3 weeks after discharge, then less frequently. In
uncomplicated circumstances, most patients can leave Durham 4 months after
discharge.
11. When should I call the doctor? When should I go directly to the emergency
room?
Always call the primary physician caring for your child at the time of the
incident. There are almost no circumstances in which you should go directly to
an emergency room. A car accident or choking episode would seem reasonable. When
you are discharged, you will have instructions to call your physician if a
problem develops.
12. Can my child or other members of our family get the flu shot?
Family members, yes. A flu shot for the patient before a BMT would be
reasonable, but is likely to be infective immediately after BMT. The only
immunization family members should avoid just before or for a number of months
after BMT is the oral polio vaccine.
13. Which immunizations will need to be repeated?
for an Autologous transplant:
Your doctor will discuss with you which immunizations, if any, will need to be
repeated.
for a Matched Unrelated Donor:
We currently recommend re-vaccination for most childhood vaccinations beginning
at 1-2 years post-transplant, with approval of your doctor.
for an Allogeneic/Cord Blood Transplant:
We currently recommend re-vaccination for most childhood vaccinations beginning
at 1-2 years post-transplant, with approval of your doctor.
About the Cord Blood Bank
The Carolinas Cord Blood Bank is a FDA registered public
cord blood collection site. The following is a list of questions which compare
public versus private cord blood banks.
|
Question |
Public Cord Blood Banks |
Private Cord Blood Banks |
| Is the mother
charged for banking services? |
No. |
Yes, varies from
bank to bank. |
| Is banking
available to anyone? |
Public banks must
establish FDA approved collection sites at participating hospitals. |
Yes. |
| Who might receive
this cord blood? |
Any patient in
need of a stem cell or bone marrow transplant. |
the child for
whom the cord blood was collected and/pr perhaps a family member.
|
| Will the cord
blood be available should it be needed for a family member? |
Possibly, if not
already transplanted or assigned to an unrelated patient. |
Yes, for family
use only. |
| Are units tested
and HLA-typed at time of banking? |
Yes. |
Generally not. |
| Are cord blood
collection and testing procedures standardized? |
Yes. |
No. |
| Who will collect
the cord blood? |
Trained and
dedicated collection staff, |
Physicians,
midwife and nurse after baby is delivered. |
| Is there a
minimum amount that will be collected? |
Yes, minimum
volume and/or cell counts are required for eligibility for banking.
|
Varies from bank
to bank. |
| Is this a
confidential process? |
Yes |
No |
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