Tips for organizing your post-transplant care

Posted July 31st, 2012 by Be The Match and filed in Patient Stories
Show Content

We asked our Facebook community and volunteers to share how they keep track of doctors’ appointments, medications and other to-dos. They jumped at the chance to share tips for organizing post-transplant care. Here are their ideas:

Document everything
I kept a notebook in my purse for appointments, and kept a log of what medications needed to be changed, when they started, when they stopped, side effects, etc. I still keep a notebook with me at all times!
Kristin, transplant recipient

You need someone with you taking notes, asking questions and interpreting answers. Bring a binder with you and take notes. Create a spreadsheet for medicines and bring it to all appointments. Create a daily pill box and a system because you are on a lot of pills and it’s difficult to manage. Get a binder to keep records of your blood counts, and know what different blood tests mean. This can help you indentify when you are not feeling well and why. 
Greg, transplant recipient

I started a medical journal for my husband when he was diagnosed. It was an invaluable tool as we moved through transplant, as I could go back to locate answers needed.
Helen, caregiver

Stay connected and organized
I suppose the primary thing is having a top-notch caregiver! I just couldn’t manage it on my own. My wife is a very organized person and helped me manage everything. Second, is being connected. My transplant center’s website summarizes appointments, latest labs, direct emails to doctors, etc. I also signed up for CaringBridge®, which was very helpful. It’s a website where you can journal as often as desired. It can alert people of new updates so we do not have to manage 25 phone calls daily. Folks mean well, but repeating the same story can be wearing. Friends and loved ones can just click on your website and see how you are doing. They can respond to your entry and you can read their reply and respond, or not, in your own time. Very helpful.
Stuart, transplant recipient

RxmindMe is a great app for medications, especially post-transplant. I love it.
Lisa, transplant recipient

I used the My Med Schedule® app for all of the medications that my young son had post-transplant. It was really a great relief to have a reminder and a place to check every time I gave him any medication.
Maria, caregiver

How do you stay organized after transplant? Share your tips and suggestions on our blog or check out our Patients Connect Facebook page to see more ideas from other patients and caregivers on this and many other topics.

Your frequent flyer miles could help a patient

Posted January 6th, 2010 by Be The Match and filed in Donor Stories
Show Content

The Delta SkyMiles® program has chosen Be The Match Foundation® as one of its 2010 SkyWish Charity Partners. That means when you fly Delta, you can donate your miles to Be The Match Foundation.

Be The Match Foundation will use your donated miles to fly marrow transplant patients and their caregivers to transplant centers free of charge. This service provides tremendous relief to families burdened by treatment costs.

How to donate miles
Send a request to the SkyMiles program including your name, SkyMiles number, SkyWish charity name, donation amount and telephone number. Donations must be a minimum of 1,000 miles and are not tax-deductible for SkyMiles members or Delta.

Take action
It can take up to 200,000 miles to transport a family to a transplant center.  Please donate yours today.

Watch “Extreme Makeover: Home Edition” Nov. 15 for an amazing patient story

Posted November 9th, 2009 by Be The Match and filed in Donor Stories, Patient Stories
Show Content

Tune in Sunday, November 15, to celebrate with bone marrow transplant recipient Joey Stott as she receives a new home, thanks to ABC’s Extreme Makeover: Home Edition.

Joey, a 34-year-old wife and mother of three from Lena, Ill., received a life-saving bone marrow transplant in 2004. This Sunday, see her family receive a visit from Ty and the design team, along with a special guest: Tom Wilhelm, Joey’s marrow donor (read Tom’s story on this blog, below).

Joey’s story also helps shed light on the financial hardships transplant patients and their families face. Even though Joey had health insurance when she was treated for leukemia four years ago, she is still paying off $40,000 in uninsured medical bills.

“I didn’t think about the medical bills while in the hospital and my husband didn’t either, but there was a lot to think about when I got home,” Joey said.

In collaboration with Extreme Makeover: Home Edition, Be The Match FoundationSM is kicking off a campaign to raise $1 million in patient assistance funds — so more patients and their families can focus on healing.

For more on this episode of Extreme Makeover: Home Edition and to make a tax-deductible contribution to the patient assistance fund, visit BeTheMatch.org/extreme.