Recently, however, I've found some things that have really helped make a difference in how I feel, my healing and my outlook. I want to share them in order to update friends, family and followers as well as give hope to those who have gone through a bone marrow (stem cell) transplant or who are expecting to do so in the near future. If you haven't gone through one, but will be, you can re-visit this down the road as you have enough to deal with right now.
Skin GVHD - Basically, it's the immune system thinking my skin (an organ) is foreign and it tries to reject it. There is dryness, peeling, red skin and some areas that separate where the skin folds come together (behind the ears, the nose folds, etc.) I've grown to tolerate this as I try to come down off my Cyclosporine. That's an immune suppressant that keeps it in check. The goal is to get off completely. The sun affects my skin and I'm supposed to stay out of it, but living in southern CA prevents complete avoidance. I try to remember to wear sunscreen, but forget to sometimes. I have one long-sleeved SPF shirt, but wear that only when I'll have to be outside for longer periods. A hat is necessary, and my prescription sunglasses make my eyes so happy. I can't believe I went all these years without wearing any! Moisturizing my skin really helps. I just need to remember to do it almost constantly! I keep trying different brands and as soon as I have a tried and true favorite I'll post the results.
Fatigue - This is a biggy. When I speak of fatigue, it is unlike anything you've ever experienced. It's an exhaustion that feels like an insurmountable wall and it affects your whole psyche. It makes you feel like you can't do anything and then you can easily get depressed, feeling less worthy or valuable than those who seem normal to you. Even 3 years later, this was hitting me hard! Could it be because I have two kids? I don't think so. Here's why: I have gotten to the bottom of it and have found some things that have really helped!
First, as you have read before I had adrenal insufficiency. Everyone who has been through trauma, and doesn't seem to be recovering from said trauma, should get tested for this. Mine was so bad that it was adrenal crisis sometimes, landing me in the ER often. My doctors told me that once the adrenal gland is shriveled up, it can't be restored. I have a God who does the impossible though, so I did not think like that. Instead, I prayed. I also take the hydrocortisone at the lowest levels I can without feeling wiped out. In recent tests, it shows that the adrenals and pituitary glands are "waking up" -- great news! So I continue on my hyrdocortisone and try to wean off slowly and I thank God for healing me in his timing.
Another factor that has helped was a lifestyle change--specifically, my diet. I had been eating whatever I want whenever I want post-transplant because I didn't want to "suffer" anymore. I had so much damage to my mouth and digestive tract that I had to eat whatever I could taste. That was cheese! Since I needed to gain weight too, I threw caution to the wind. Well, I gained all the weight I needed and then some. Once I got into that mode, it was hard to stop it. I became quite the food addict. Later, when I'd had enough, I tried to eat less or count calories, but that wasn't working for me. Then I read the book Eat to Live by Dr. Joel Fuhrman. He promotes a plant-based diet based on his extensive research and I am inclined to agree with his findings. I changed over to a plant-based diet and that's helped me feel a ton better. Dairy is a real problem for people like us and I have a lot more energy since getting off and eating a lot more fruits and vegetables, nuts, seeds and beans - lots of beans! The fiber in this way of eating keep me feeling full longer, gives me more energy and the protein is easier to digest. If you have digestive problems, I highly recommend a plant-based diet and that book. As a bonus, I've lost 17 lbs since starting this in July and look forward to losing all of my extra weight.
Another modality that I'm finding to be a lifesaver is getting B-12 injections. My doctor recommended them to see how they'd make me feel since even people eating meat are often found to be deficient in Vitamin B-12 because of modern farming practices. The meat most people eat lack the bacteria that creates B-12. Apparently 30-40% of all people (not just vegetarians) are B-12-deficient! Well, he was right. I feel a lot more energy since starting them. I give them to myself with the prescription he gave me for the liquid vitamin and the syringes. It's super easy to give it to yourself in the upper thigh. The doctor started me on three injections three times a week to get me caught up and then once a week. The good thing is you can't 'overdose' on B-12.
In addition to the B-12, my doctor also recommended IV vitamins followed by 1-hour in a hyperbaric chamber with oxygen twice a week. The idea is that it will help circulation get to the tissue that's not getting it and healing will take place, damaged nerves restored, numbness improving, and more. Since we had over-estimated our pre-tax healthcare dollars I figured now was the time to try it. If we don't use all our money, we'll lose it. I'm thankful because without that over-estimating 'mistake' I'd have never tried this complementary therapy out of expense which is $100/hour.
I've done three sessions now and noticed improvement in my toes and feet on the first visit! It is working and I've noticed more feeling and my lower extremities feel stronger. This is so amazing to me and I'm very hopeful that it will be restored.
I take the IV vitamins as a way to bind toxins that are being released and flushed out of my system. Not sure how to quantify that experience except that again, I have a lot more energy lately and even though I felt like I was battling a garden variety cold, it never 'took' - yay for that!
Mobility and Strength - After muscle loss and nerve damage combined with the stress fractures from falling because of it, I was left me with a limp which you might only notice if you see me when I'm tired. I have felt weak in my ankles and feet ever since. Well, the hyperbaric chamber sessions have been helping with this IMMENSELY! I especially notice it now that I've started the Cancer Center's Well-Fit program through the Santa Barbara Athletic Club. Since I've started feeling my feet again, I feel so much stronger. The Well-Fit program is a 10-week cancer patient program to help those going through treatment to maintain their strength or those who have gone through treatment to restore their strength. It's an awesome program. We meet twice a week with a personal trainer in a small group and can enjoy the health club as a full-member for those 10 weeks. I started last week and have been going daily since. So far I've just been building up my cardio workouts and today I did a pilates class that was head-to-toe strengthening and stretching. The pilates felt fantastic and I felt so strong doing it. You'd never know I ever had the problems I've had. I waited these 3 years to do this program because I had to have enough strength and health to do it. Now I do and am only going to get stronger.
High Iron - Due to the number of transfusions I received over the course of my transplant, and the fact that the radiation put me into menopause (therefore no more bleeding), my iron stores are extremely high. That's no good for your veins, your heart, your brain, etc., so I have been getting phlebotomies, or donating blood that they throw away, to reduce the iron in my blood. I do it as often as I can without getting anemic. Once a week was too much. So now it's every three weeks and only that if my hemoglobin is above 12. Planning this through February. Next time I'm in for the hyperbaric chamber session, I'll ask my doctor if IV chelation therapy would help remove iron. If so, that would prevent anemia.
I'd also love to travel, but find even trips longer than 2 hours difficult still. That might be different now that I'm feeling much better, but haven't tested it out yet because of the fact that change to my normal routine still sets me back at times. I'm enjoying feeling so good for a change in my normal environment!