Have you been recently diagnosed with a blood cancer and told you need a stem-cell transplant or bone marrow transplant? There is a lot to absorb, and a lot you need to do to prepare yourself. Having gone through this ordeal myself (June 28, 2016), I’d like to offer a few suggestions in this post.
Read and Ask Questions: First of all, read about your diagnosis and stem cell transplant or bone marrow transplant procedure. Be an informed patient…the more informed you are, the better. Become the best patient advocate for yourself. As you read, take notes on topics you don’t understand, and ask your doctors and nurses. They specialized in blood cancers and the stem cell transplantation process, and have successfully treated many, many patients…use their brains!
As a former critical care nurse, I never took care of patients with acute myeloid leukemia (AML..my diagnosis) or any type of blood cancer. So, I had to do a lot of reading on my own diagnosis, and I asked a lot of questions. Arming yourself with information will help you be more successful in your stem cell transplant recovery.
Do you have an Advanced Directive? If you don’t, you need to complete one as soon as possible. Advanced Directive is two legal documents you complete stating which life-saving procedures you wish or refuse at a particular stage in medical treatment. Put your health care wishes in writing, in case you are unable to speak for yourself. Think sudden car accident, sudden major illness. Life is unpredictable, and anything can happen to you, at any time.
Take control and complete these forms now. Don’t burden your family with this decision; they don’t know what your health care wishes are. Besides, most families have never had this important conversation. Also, the hospital staff will ask for a copy of the Living Will to include in your medical record.
The two forms in the Advanced Directive are: –Medical Power of Attorney (Durable Power of Attorney for Healthcare) –Living Will
I had revisited and updated my Advanced Directives in December 2015 with the help of an attorney. Little did I know at the time how important these documents would be. Fast forward a few months when I suddenly got sick, diagnosed with leukemia, had 2 rounds of chemotherapy and a stem cell transplant. All within 2.5 months. Life is unpredictable!
If you’re in metro Atlanta and don’t have an attorney to help you with Advanced Directives, call Kristyne Seidenberg. Her web address is: http://www.seidenberglaw.com/
Medical Leave and FMLA (Family and Medical Leave Act): For those who work for companies, ask about the Medical Leave Policy…they may or may not have one. I was on medical leave for 9 months before my company could no longer hold my position for me.
FMLA is a federal law that guarantees employees up to 12 workweeks of unpaid leave each year with no threat of job loss. FMLA also requires employers to maintain health benefits for eligible workers. Don’t forget to get these forms completed…ask your company Human Resources Dept.
Recovering from a stem cell transplant is a long journey…get ready! Although every patient’s healing process is different, recovering from a stem cell transplant is long and arduous. I thought the procedure would be like surgery…go in and ‘fix’ the problem, and I would be back to my normal life. This was a completely unrealistic expectation on my part. I’ve heard of stem cell transplant persons returning to work in less than a year, and others still dealing with immunosuppression therapy and chronic graft vs host disease greater than 2 years post-transplant. Again, your recovery is sometimes out of your control, but there are things you can implement prior to your transplant so your recovery is easier and more favorable:
–plant-based/vegan diet or limit meats and milk as much as possible. This diet eliminates much of the inflammation caused from foods such as meat, poultry, and particularly milk products. Graft vs host disease is an inflammatory response to the transplant.
–improving your physical strength is important by doing strength and aerobic training before the transplant. You will become very weak from the conditioning chemotherapy and the stem cell transplant. The stronger you are before the transplant will definitely help in your physical recovery.
–frequent, meticulous handwashing is critical. I can’t emphasize this enough. Using hand sanitizer is okay when you don’t have access to a sink,but scrubbing your hands for 20 seconds is the gold standard. Most patients are hospitalized a few times after the transplant because of infections. You can help avoid being admitted with frequent handwashing, avoid touching your face, avoid people, and follow your healthcare team’s instructions to the letter! I was hospitalized a few times post-transplant, but it was never for infections…you and your caregivers can control this.
Check out this link on the CDC website…When & How to Wash Your Hands.
Get your Caregiver Team together. The first month post-transplant is extremely tough on your caregivers and yourself. Depending on how your transplant program is, you may be staying inpatient for 30 days or going to the outpatient transplant clinic every day, including holidays, for 30 days. For me, I went to an outpatient transplant clinic, so I had 3 caregivers coordinate among themselves who drove me to and from the clinic, and who stayed with me at the clinic.
Your transplant team will be monitoring you closely, drawing blood, giving you IV fluids, giving IV medications and blood transfusions. You will also be taking a lot of oral medications for a long time.
The most important piece of advice I can give you is to wash your hands frequently and meticulously, and have your caregivers wipe down all the surfaces you will touch with Chlorox wipes several times a day. This simple action will help you from getting infections and hopefully avoid getting admitted to the hospital.
And don’t forget to thank your caregivers often. It’s tough on them too.
Follow your transplant team’s instructions! I can’t emphasize this tip enough.
The whole process of stem cell transplant and recovery is expensive. There are medical co-pays, out of town housing, limited income due to illness, parking fees, over the counter medications and medical supplies, special foods, and other expenses.
There are financial and other support resources available for those with blood cancers…check out the Leukemia and Lymphoma Society.