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AA Aplastic anemia

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  #1  
Old Sat Jan 5, 2013, 09:16 AM
teke152 teke152 is offline
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Join Date: Jan 2013
Location: Spring, Texas
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Stem Cell Transplant

Hello,

I am new to the forum. My wife is starting a stem cell transplant later this month. She has severe AA, previously had ATG rabbit, IVIG, and ATG horse (due to reaction, only had one dose of the horse). Her counts are not improving and has been transfusion dependent for 2 years now. After the rabbit ATG her transfusions happened less often, but still not in remission.

If anyone has any advice for me as a caregiver (especially about the transplant), I would love to hear from others.

Thanks for your time.
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  #2  
Old Sun Jan 6, 2013, 11:44 AM
Neil Cuadra Neil Cuadra is offline
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Welcome, teke152.

It will help you, as a caregiver, to understand the overall transplant process (preparations, inpatient stay, and recovery) and the logistics (schedule, transportation, what records to keep, what to bring or not bring to the hospital).

You can take advantage of these sources of information:
  1. The treatment center should be able to provide you with booklets or online resources with much of the information you need. This will probably be about stem cell transplants or hospital procedures and facilities in general, not specifically about aplastic anemia, but much of what happens in a transplant isn't disease-specific. For example, if your wife's transplant will be at the M.D. Anderson Cancer Center, their Patient Education Office can give you their "Bone Marrow Transplant Binder" with information on stem cell transplantation and answers to common questions. They can give you information specifically for caregivers and their Patient Care Essentials page gives an overall roadmap.

  2. The Aplastic Anemia & MDS International Foundation (AA&MDSIF) can provide information or answer questions. You're not new to the disease, so you'll probably be more interested in the information they can provide about transplants and caregiving, rather than about the basics of aplastic anemia, but they can provide both.

  3. You can get peer advice from other patients and caregivers here in the forums. Search the forums or join or start discussions. It'll help if you provide more information about your situation, e.g., whether the stem cell donor is a relative or unrelated, your wife's age group, whether you have children to care for or adult family members who can help you and your wife. Asking specific questions is the best way to let us know what help you need.

  4. Support groups. Seek out local caregiver or patient support groups in your area. Online forums give you access to other patients are caregivers all over the world, but being able to talk to other people in person can make a great deal of difference too.
The way I think of it, husbands who are caregivers have four roles to play at once:
  1. Being their wive's primary advocate: asking questions and speaking up about concerns you or your wife have, both medical and practical.

  2. Being a partner to the doctors: taking notes, understanding treatment decisions, knowing side effects to watch for, etc.

  3. Being a live-in hands-on caregiver: Once your wife is released after transplant you'll need to help her get to appointments, make sure she takes her medicine on schedule, know when to call the doctor, keep your family and friends informed and accept and arrange help they can provide, and manage other practicalities of her recovery and care, from pharmacy trips to insurance and medical bills to dealing with your and your wife's employers. Your wife will have to concentrate on getting better, so that puts you in charge of the household. Don't be shy about accepting help.

  4. Being yourself: Remember that you are husband and wife, not just caregiver and patient. Be generous with hugs, keep your sense of humor, and talk with each other about whatever is on your mind. You'll also need to maintain your own health and get enough food, rest, exercise, and fresh air. It's not selfish - it's for your wife's good too!
Good luck!
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Old Mon Jan 7, 2013, 08:09 PM
teke152 teke152 is offline
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Join Date: Jan 2013
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Thank You

I really appreciate the response!

It is always nice to have a support system of people that have been in my shoes
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Old Tue Jan 8, 2013, 07:56 AM
Sally C Sally C is offline
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Location: Chesterfield, Va.
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Hi Teke152,
I'm sorry I'm not knowledgeable about your wife's situation but it looks like Neil gave you some great advice. And welcome to the Forums. It's a wonderful place to gain wisdom and support.
I wish you and your wife well.
God Bless,
Sally
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