This is Part 3 of 5 in Tips on Managing Graft vs. Host Disease (aka GVHD). To reiterate, these posts address chronic graft vs. host disease symptoms I have or had. There are many other symptoms of organs I do not discuss because thankfully, I don’t have to deal with them. Symptoms vary from person to person as well as the amount of damage to the organs.
KEEP YOUR PROTEIN INTAKE UP: You are already in a weakened state due to chemotherapy, the transplant well as general deconditioning. You don’t feel like eating, but increasing your protein intake is important to prevent further muscle wasting. Here’s what helped me:
- Eating spoonfuls of peanut butter
- Drinking Orgain nutritional supplement. It has 16 grams of protein in 14 fluid
ounces. It’s available in vegan or milk-based options and comes in chocolate and vanilla flavors. I prefer Orgain over Boost because it had much less sugar plus Orgain didn’t make me nauseous.
- As for meals and snacks, try to eliminate or minimize dairy, meats, and poultry. GVHD is an inflammatory response so eliminating foods that cause inflammation is strongly recommended.
- Your blood and marrow transplant team will provide you with food safety guidelines…it behooves you to follow them. Don’t eat foods that will jeopardize your recovery or your health.
LUNGS: If you get lung GVHD, you will experience shortness of breath especially on exertion. But don’t let this stop you from exercising because aerobic activity will help prevent further damage to your lungs. YOU can put the brakes on lung GVHD from getting worse. I have a regular regimen I do to prevent worsening of lung GVHD.
- If you are prescribed inhalers, it is important to follow the instructions carefully. I am on two inhalers (rescue inhaler and steroid inhaler). The steroid inhaler helps in reducing inflammation in the lungs. When you use the rescue inhaler…wait 10 seconds before exhaling. Then wait 60 seconds before using the steroid inhaler, then wait 10 seconds then swish but don’t swallow.
- Aerobic exercise…walking, exercise bike, treadmill, using steps in your home is a great alternative to a StairMaster and building up the gluts!
- Early in your stem cell transplant recovery, you will be given an incentive spirometer to expand your lungs and prevent pneumonia. Use it!
MUSCLE: Because of aggressive chemotherapy (aka conditioning chemotherapy), severe weakness, the transplant itself, and hospitalizations, you’ll lose weight as well as muscle mass. GVHD of the muscle is not the same as deconditioning. Muscle GVHD is an inflammation of the muscle due to the complications or side effects of the transplant, and the symptoms are likened to getting a first-degree sunburn but deeper in the muscles. The only way to positively diagnose GVHD of the muscle is to do a biopsy, which I’ve not done.
I’ve been trying to rebuild muscle mass I lost, but it is a very slow process especially of the large muscle groups like the legs. Believe me, I know it can become discouraging, but persist through the down periods. Here’s what I found helpful…
- In the hospital, physical therapists provide a strength exercise schedule with resistance bands. Do the exercises at home as well. Resistance bands are great for working for small and large muscle groups, and especially handy for small spaces.
- Hire a 1:1 personal trainer…no group workouts. Evidence shows the positive benefits of physical rehabilitation in preventing further muscle damage.
- Incorporate light weights with resistance bands.
- If you are immunocompromised, stay away from indoor gyms and groups of people! Nasty germs are everywhere, and the general public is not aware of the dangers of weakened immune systems. Protect yourself!!
To be continued…
If you found other methods that help you manage graft vs. host disease, please share!
Smith S, Haig A, Couriel D. Musculoskeletal, Neurologic, and Cardiopulmonary Aspects of Physical Rehabilitation in Patients with Chronic Graft vs. Host Disease. Biology of Blood and Marrow Transplantation. May 2015. 21:5; 799-808.