Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > AA
Register FAQ Search Today's Posts Mark Forums Read

AA Aplastic anemia

Thread Tools Search this Thread
Old Sat Jan 5, 2013, 10:16 AM
teke152 teke152 is offline
Join Date: Jan 2013
Location: Spring, Texas
Posts: 8
Stem Cell Transplant


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.
Reply With Quote
Old Sun Jan 6, 2013, 12:44 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,493
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!
Reply With Quote
Old Mon Jan 7, 2013, 09:09 PM
teke152 teke152 is offline
Join Date: Jan 2013
Location: Spring, Texas
Posts: 8
Thank You

I really appreciate the response!

It is always nice to have a support system of people that have been in my shoes
Reply With Quote
Old Tue Jan 8, 2013, 08:56 AM
Sally C Sally C is offline
Join Date: Dec 2010
Location: Chesterfield, Va.
Posts: 452
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,
Reply With Quote

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Timeline for Stem Cell Transplant Data Transplants 5 Fri Dec 18, 2015 07:58 PM
problem swallowing solid food after stem cell transplant dazbella Questions and Answers 3 Tue Sep 1, 2015 05:56 PM
1 year birthday of a second stem cell transplant. pbaxter Transplants 2 Tue Nov 1, 2011 03:36 PM
Stem Cell Transplant katherineann59 Transplants 2 Mon Jun 29, 2009 10:05 PM
Study Discounts Age Limit on Stem Cell Transplants Marrowforums News and Events 0 Fri Dec 12, 2008 01:10 PM

All times are GMT -4. The time now is 02:01 AM.

Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2019, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2019 Marrowforums.org