Ok…here’s almost the last post on Tips on Managing Graft vs Host Disease (GVHD) – Part 4 of 5. To reiterate, these posts address the graft vs. host disease symptoms I specifically had or have. 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.
Once again, I can’t emphasize enough in the importance of self-care and reporting all new or aggravated symptoms to your transplant team. GVHD can get really bad if you let your guard up and begin slacking on your medication and self-care routines.
MOUTH: GVHD of the mouth is called oral mucositis, and results from chemotherapy and radiation. Both treatments kill rapidly growing cells causing painful mouth sores, ulcers, and dry mouth. This inflammation of the mucous membranes of the mouth and throat can cause severe pain when eating, speaking or drinking. Also, you may develop severe dryness in your mouth because of the chemotherapy or radiation, and medications you are taking.
- Good mouth care is even more critical when you have mucositis. Because of the sores and ulcers in my mouth, I switched to a soft small child’s toothbrush…it is less painful and I was able to brush in the back of the mouth. Don’t forget to brush the tongue and soft palate.
- Use Biotene toothpaste and Biotene mouth rinse. These products are specially
formulated for dry mouth, alcohol-free and recommended by your blood transplant healthcare team. I found Biotene very helpful early post-transplant when dry mouth syndrome is quite severe. You’ll get Biotene kits when you’re hospitalized…hoard these for home use!
SKIN: The skin, known as the integumentary system, is the largest organ of the body. Stem cell transplant ages your skin. For me, my skin became hyperpigmented (I call it mottled), very dry and thin. There are a few self-care routines I follow daily.
- Liberal use of body lotion. For facial moisturizers, make sure it has SPF 30 or
higher. Sunscreen is particularly important because you are more susceptible to skin cancers because of the chemotherapy, stem cell transplant, and drugs.
- If you’re on immunosuppressants or receiving ECP (electrocorporeal photopheresis), avoid direct exposure to sunlight…cover up!
- Nails become soft, ridged, prone to peeling and cracking. This is temporary. For me, it took 25 months for my fingernails and toenails to return to their normal pre-stem cell transplant state.
- Sweat glands…see below
SWEAT GLANDS: The sweat glands are part of the integumentary organ (skin), and will become damaged due to the chemotherapies and stem cell transplant. Because of your body’s inability to sweat, overheating manifests in severe prickly heat from head to toe…causing total body itchiness. The only thing to do is stop what you’re doing, and allow your body to cool down.
- Drink cold water.
- Place ice cubes or cold water bottles on your neck, wrists, and temples.
- Complete all your outdoor activities in the morning when it’s coolest.
- You may or may not get a rash with prickly heat (I didn’t), but if you do, don’t scratch to the point where it breaks the skin. You are more susceptible to skin infections, and you don’t need another setback!
FATIGUE: The feeling of fatigue post stem cell transplant is not the same as feeling tired or exhausted. It is a lack of energy (both physical and mental) due to multiple chemotherapies, stem cell transplant and the enormous amount of medications. Also, most of your white blood cells and red blood cells are super low.
- I find it helpful to group my to-do list in increments or blocks of time. Work for 1.0 – 1.5 hours, then rest.
- Sometimes it angers me to have to take frequent rest periods, but if this is the way it has to be, so be it.
- Being awake for 6 hours is about all I can take, then I have to sleep or nap…this is called fatigue.
- Make sure your healthcare transplant team put you on a good multivitamin and Vitamins C and D.
LIVER: Not much you can do other than take your prescription meds. Drink plenty of water to flush your body of toxins.
To be continued…
Post 5 of 5 on Tips On Managing Graft vs. Host Disease Symptoms will be on Palliative Care…what it is and isn’t.