Sunday, September 16, 2012

Things that have helped me thus far...a very POSITIVE update!

Today is September 16, 2012 -- about 3 years and 8 months after my transplant. I write few and far between because I'm trying to live life to the fullest and don't always have a lot to say. Since my last post which was marking my 3-yr-anniversary I still battled fatigue, weakness and skin GVHD.

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.

What I'm Dealing With and What Has Worked

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.

What I'm able to do now

My kids schedule is rather busy for me, but with carpooling help and planning ahead, it's doable. It's hard to take on outside commitments other than what we've already got for church, school, sports and Boy Scouts, but we manage it well. I'm able to work out at a gym for 30 min. to an hour, garden a little, household chores for the most part, and shopping the farmer's markets for fresh organic produce. These don't seem like a big deal to you, but they aren't activities I could muster the strength for even a year ago. I also started canning, and do it in spurts and small batches when I have motivation, find a good deal on some kind of fruit or pepper and have time.

What I'd like to do, but still have trouble with

I still can't be in the sun, but I tried to go to the beach last weekend with the family. Even though I sun screened up, wore a hat, stayed under an umbrella and wore SPF bathing 'clothes' (I looked a little goofy), I still reacted to it in a way that made me realize it's not time to try that yet.

I'm still gaining strength and look forward to the day when I can run again, but that's really not possible at the moment. 

I look forward to having more stamina even though I am experiencing more energy lately. I look forward to the day my adrenals are normal and I can get off all medication. I look forward to the day when something 'different' or outside the normal routine doesn't throw my whole system out of whack from the stress of change. That's not my personality usually, but it's my body since the transplant.

I'd like to get rid of more of the excess that built up in my life during these years that got away from me, and welcome anybody who would like to help. Too much stuff! I used to have a regular routine of decluttering so it never got out of control, but of course, that wasn't happening over the past few years. With too much stuff I can't think as clearly and it drives me a little crazy. I just started selling things on Ebay and if you need anything, you can check out my sales -- search funds4recovery. I am getting rid of mostly books and curriculum, DVDs, household goods, home decor, some clothing, and who knows what.

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!

Well, that's the latest from Lake "Woes-R-Gone", just kidding, I couldn't be more thrilled with the prospects for health and recovery and hope the Lord touches you, my reader, in a very special way in whatever way you need most. He knows your need and He cares for you intimately.

 “It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us.”
 “‘If you can’?” said Jesus. “Everything is possible for one who believes.”
 Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”  ~Matthew 9:22-24


Molly B in NYC said...

This is great, Krista! Do you feel like the hyberbaric chamber is also helping with your mobility and strength?

Molly B in NYC said...

Also, where do you go to receive these hyperbaric chamber treatments? Is it at the Cancer Center in Santa Barbara? I am interested in looking into something like this for my mother who also suffers from muscle atrophy due to skin GvHD and schleroderma-like symptoms.

Lancet said...

Thanks for posting this helpful information. I had two transplants for Hodgkin's disease: an autologous transplant in '97 and a reduced-intensity allo in 2004. The last one did the trick and I've been cancer-free for 8 years now. I still have a long way to go, because multiple medical cliffhangers kept dealing me setbacks. I've had to relearn how to walk several times.

Like you, I have adrenal insufficiency, which has been why my infections have been so nasty--the bacteria put out chemicals that cause my arteries to expand, and I can't put out any cortisol to produce the hormones I need to compensate. So when I crash, I do it fast! Fortunately, I haven't had any serious infections for quite awhile now. So I've been able to gain some strength and do more.

I've also been able to cut back on the prednisone I take for my adrenal insufficiency. I'm at 8 mg a day, just above "biologic" levels (5 to 7.5 mg) and am doing okay. I've also learned how to detect a crisis early, so I can take stress doses and keep my bp from crashing in ER.

You're right to keep out of the sun. Before I left the center where I had my second transplant, my doctor there told me, "Stay out of the sun." When I asked him about sunscreen, he simply repeated, "Stay out of the sun." So that's what I've done. Of course, that caused vitamin D deficiency. But my endocrinologist corrected that with very large doses of it, which has had beneficial effects beyond correcting the deficiency.

I hope you continue to improve. Thanks for posting the tips.


BTW: I often feel very good when I'm exerting myself, but really lousy afterward. My endocrinologist said that was because the long-term prednisone had damaged my muscles in a way that keeps them from efficiently pushing out the lactic acid they produce during exercise. That causes the lactic acid to build up, which is why I feel so lousy. She said that deep massage is the best way to get the stuff out, but that I should expect to feel really lousy afterward. I'm still hesitant to do that, but at least I know that feeling lousy is not an adrenal insufficiency problem.

Lancet said...
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