This is Tips On Managing Graft vs. Host Disease – Part 2 of 5. The next couple of posts address chronic graft vs. host disease symptoms I specifically had and have. There are many other symptoms of organs I do not discuss because fortunately, I don’t have to deal with them. Symptoms vary from person to person as well as the amount of damage to the organs.
In addition to taking all your prescribed medications diligently and following your transplant healthcare team’s instructions, here are my tips for managing graft versus host disease symptoms…you may find these work for you too.
You may get graft versus host disease (GVHD) of only one organ or multiple organs may be affected. Please remember, diligence in managing your symptoms is critical. Your healthcare transplant team is not with you 24/7, so you are the captain of your ship (your body) in your recovery.
Possible organs affected…
DRY EYES: how dry eye syndrome presents itself is a gritty feeling in your eyes, like tiny specks of sand or dust. Dry eye from GVHD can affect one eye or both eyes and results from lack of tear and oil production in the tear glands. Please do not be confused with general dry eye syndrome advertised on TV or print media. Dry eye syndrome, called ocular GVHD is serious in stem cell transplant patients. If not treated immediately, it can lead to further damage to the eye surface.
For me, in addition to the feeling of grittiness, I was unable to open my eyes upon waking from sleep. Part of keeping eye GVHD at bay is your diligence in taking control in managing your symptoms. Here’s what worked for me:
- Restasis eye drops (prescription)…make sure you wash your hands with soap & water before touching your eyes! Follow your ophthalmologist’s instructions diligently.
- Natural tears during the day, and lubricant gel at night before you sleep. I use GenTeal
- Regular ophthalmology visits (not the optometrist…big difference!). I started with every 3 months followed by every 6 months.
- Omega-3 such as flaxseed oil or fish oil. I take fish oil capsules totaling 4 grams per day. Omega-3 also reduces high triglyceride levels without resorting to a prescription medication. If you’re on immunosuppressants, they raise triglyceride levels dramatically, so talk with your healthcare team, and get periodic bloodwork for triglycerides.
- Don’t rub your eyes – EVER!
- Little to no eye makeup…I know this may be tough, but less eye makeup the better.
- Warm soaks not only soothes your eyes but helps to release oils.
- Blood and Marrow Transplant Group of GA (BMTGA)
- Peggy Denney, Sr Editor. Ocular Graft vs Host Disease Downside of Success. Interview with Reza Dana, MD, MPH, Martine J. Jager, MD, Ph.D., and Stella K. Kim, MD. Eyenet Magazine, American Academy of Opthalmology.
GUT-GI (gastrointestinal): the main symptoms you may get is nausea and maybe vomiting. You will get prescriptions to control nausea. Early post-transplant, I found it helpful to take the antinausea meds around the clock rather than when I started feeling nauseous. Be proactive and prevent nausea in the first place…there’s nothing worse than puking. Here are a few other tips that helped me:
- Pepogest peppermint oil capsules…I no longer need prescription anti-nausea medication, but still, take peppermint oil on from time to time. These really work for me.
- Chamomille tea
To be continued…
If you found other methods that help you manage graft vs. host disease, please share!