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The role of a caregiver

Caregivers play an important role during the treatment of amyloidosis. In fact, so important that certain treatment will not proceed without confirmation caregiver support is in place. Educated by the medical team, caregivers are involved before, during, and after a transplant and help with basic day-to-day medical and practical issues, as well as provide emotional support. During the transplant the care needs are most intensive, requiring availability 24/7.

Hear first-hand from Mackenzie and Dr. Betsy Mencher who discuss their thoughts about the role of a caregiver. Mackenzie speaks from the perspective of a patient, and Dr. Mencher shares her experience as the caregiver for her husband.

 

Day +100 Post-Transplant

Following every stem cell transplant, time is measured by “Day +” followed by how many days have passed. For example, Day +365 is one year later. Another important milestone is Day +100, which is when patients return to re-test and compare results against pre-transplant test results and determine the impact of the treatment.

Hear from Mackenzie what her Day +100 visit back to the Mayo Clinic was like, and how it went.

Recovering From A Transplant

Recovering from a stem cell transplant is a rough ride. The good news is it doesn’t last forever before you begin to feel better. The bad news is you’ve got a few tough days to go through.

Have a listen to Mackenzie’s experience post-transplant and her recovery.

 

Going Through Treatment

You’ve been diagnosed with Amyloidosis. Now what? You come to learn that there are different types of Amyloidosis and, when coupled with different organs involved and the state of the patient’s health, the course of treatment MUST be customized. There is no set roadmap.

Have a listen to Mackenzie and her course of treatment for AL Amyloidosis.

What is “re-Birthday”?

Have you ever heard the term “re-Birthday”? If not, watch this video.

Hint: everyone who has had a stem cell transplant has a re-Birthday.

Potential Game Changer

Dr. Guojun Bu, associate director of the Mayo Clinic Center for Regenerative Medicine, explains how new U.S. Food and Drug Administration approval clears the way for Mayo Clinic to accelerate production of stem cells for clinical trials.

 

Hair

Understanding what it is like to lose your hair is one of the most frequently asked topics. While there are some therapies (e.g., cold caps) that may be effective to stave off hair loss, they don’t work in all situations.

So have a listen as to what it is like from Mackenzie’s perspective.

Cold Caps – Do They Work?

Using a cold cap can significantly reduce hair loss caused by chemotherapy. Although some minor side effects may occur, no serious side effects have been associated with cold caps. Learn more from Dr. Saranya Chumsri, oncologist.

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-cold-cap-therapy-can-reduce-hair-loss-caused-by-chemotherapy/?utm_source=facebook&utm_medium=sm&utm_content=post&utm_campaign=mayoclinic&geo=national&placementsite=enterprise&mc_id=us&cauid=100502&linkId=47567360

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