Caregiver Ann Haehn Shares Best Ways to Support Your Loved One Battling Chronic Graft Versus Host Disease
Colorado's Ann Haehn and her daughter Genny are two truly special people. Today, Ann takes us on their journey through Genny's transplant and subsequent battles with chronic Graft vs Host Disease.
After a very grim diagnosis, Ann and the rest of Genny's village found a doctor that felt he could get Genny through transplant at Colorado Blood Cancer Institute. During a long six-month pre-transplant process, Ann moved in with Genny and her kids. Genny's new boyfriend (now husband) Josh was also a huge help as well.
After the transplant came 30 days of isolation, followed by 100 days of living in an apartment near the hospital. That meant finding 130 days of child care, which Ann managed to do, with a lot of help from a lot of people, while she stayed with her daughter. Then, two weeks prior to hospitalization, Ann lost her mom unexpectedly.
Ann speaks candidly about what it took to get Genny through transplant and recovery, cleaning up puke, watching the same movie over and over again when Genny kept falling asleep, laughing, crying, blogging, and even some wine for Ann at the end of the night.
Caregivers are expected to be stoic and talks about dealing with her emotions and being a human herself. This includes maintaining the mother-daughter relationship through the caregiver-patient one.
After transplant, Genny developed GVHD, which at first was a good sign because it meant the transplant was working. Over time though, this developed into chronic GVHD, which affected Jenny's joints and ability to walk. She sometimes needed a cane, walker, or wheelchair.
Before treatment, Ann promised Genny a trip to Europe. And when she was well enough, the whole family went - with a wheelchair, IV bags, medication, and more. You'll crack up as Ann tells you the hilarious moments of this trip. Essentially, they found a way to do what they wanted to do, in spite of Genny's GVHD.
Ann talks about how far GVHD treatment has come, and how Genny's GVHD seemed to "level off" after about six years. While the unpredictability of this disease can be frustrating, for most, brighter days are ahead.
Finally, Ann describes her experience as a caregiver in three words. "A sacred honor."
Ann and Genny's experience led them to create an organization called Genny's Hope, which has recently joined the Small Choices Foundation, started in fact, by one of Genny's nurses! Links Below.
Resources:
Small Choices Foundation: https://www.smallchoicesfoundation.org/
Genny's Hope: https://www.smallchoicesfoundation.org/gennyshope
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Pharmacyclics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
Sanofi: https://www.sanofi.com/