Stimulating News

Ever since mid-December 2010, I have been getting light headed whenever I stand or lean over. A couple of times I have come pretty close to passing out. The last checkup I had the doc took my blood pressure lying down and it was 135 over 70 something. He then had me stand up and took it again. It was 110 over 60 something. A pretty significant drop.

One of the many side effects of prednisone, the steroid I take to try to stop the deterioration of my lungs, is that it causes sodium retention. Because of this, the wife and I have really been cautious about my sodium intake, trying to keep it as low as possible. The doc thought that my low sodium intake was causing the light headedness so he recommended that I up my sodium intake a bit to see if that helps. I didn’t think it was the sodium and I let him know, but I said I would give it a try anyway since that meant I could eat more pickles.

After having a couple of days to reflect, the doc decided he wanted me to take a Cortisol Stimulation Test, or Stim Test as it’s referred to in the business. Basically, all the test consists of is drawing my blood, testing my cortisol levels, then injecting me with something that stimulates my adrenal glands, and then at the 30 minute and 60 minute periods after the stimulation, drawing my blood and testing the cortisone levels again. Because the adrenal glands were stimulated, the level of cortisone should be higher.

I just received an email from my doc that says: Your Cortisol stim test was normal response. There is sufficient amount of Cortisol, according to the test, to protect you against orthostatic hypotension [dizziness].

That’s good news. However, even after increasing my sodium intake, I still getting dizzy when standing. Any of you smart people out there have any ideas what may be causing this? My gut is telling me it’s just a reaction to the cocktail of medicines I take every day but if you have any other ideas, please let me know.

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Lung GVHD by Any Other Name

As I’ve tweeted in the past, I’ve contracted both acute and chronic Lung Graft Versus Host Disease as a result of my April 2010, Bone Marrow Transplant. For clarity’s sake, or perhaps to confuse things even more, I think it is important to be more specific in naming my lung disease. In my lab reports and in discussions with my doctors, in addition to Lung GVHD, it is referred to by several different names: Chronic Bronchiolitis; Constrictive Bronchiolitis; Focal Follicular Bronchitis/Bronchiolitis; but the name I will refer to it as is Bronchiolitis Obliterans, or BO. According to the doctors, it is the most correct name, and, most importantly to me, it’s the most fun to say.

Say it: Bronchiolitis Obliterans.

Wasn’t that fun?

I am not going to attempt to explain the disease in detail; however, what I will briefly say about it is that it a non-reversible, degenerative lung disease that compresses and scars the bronchioles which blocks, or obliterates, the airways. Unfortunately, there currently is no cure for the disease, but it can be treated with a high-dosage, anti-inflammatory steroid regiment.

I was also diagnosed with Acute Lung GVHD. Another name for this is Lymphocytic Bronchiolitis. Not quite as much fun to say as the other one is it? I have been on a steroid regiment since the end of October 2010, and the good news is I have positively responded to the treatment. My acute symptoms lessened as soon as I began taking the drugs. What a relief it was. Those who saw me prior to me starting the treatment can testify what a pitiful state I was in. In addition to the Lung GVHD, I also had skin, mouth, and lower GI GVHD. The steroids is taking care of them as well and now I have put on close to twenty pounds and I am getting stronger and stronger through stair climbing exercises and weight training.

Of course I still have the Chronic GVHD, or Bronchiolitis Obliterans, and always will; however, because I have responded so well to the acute conditions of the GVHD, the hope is that the steroid treatment will be able to at least stabilize my chronic condition and prevent or postpone for as long as possible, any further degradation.

Yesterday during a checkup with my GVHD doctor, I learned that I will probably be on the steroid treatment for the rest of my life. Not cool because the side effects are horrible; but, like I often have said about all the crap I put up with during the leukemia fight—it’s better than the alternative. I also learned that I will probably never again be able to return to work, or to a normal, vigorous lifestyle like I used to live. I don’t yet know what to say about this–I’m still processing the news.

I do know that exercise and a healthy diet is going to more critical to me now than ever before in my life. I need to continually strengthen and condition my heart and body so that it becomes as efficient and as effective as possible with limited and possibly lessening quantities of oxygen.

Bronchiolitis Obliterans.

At least it’s still fun to say.