Danger zone!

Before I started Tuesday, I had asked the doctor what the usual preclusions to a successful transplant were and she said 1. Disease recurrence 2. Graft rejection 3. Opportunistic infections. In my case I also have the possibility of liver failure. Those of you who know of my close call back in June of 2009 when I went through my induction know that my usually harmless Gilbert's syndrome (a decreased ability to metabolize bilirubin due to low levels of a certain enzyme, ugt1a) can become a fatal complication if the liver is over-agitated. Excessive amounts of bilirubin in the bloodstream can cross the blood-brain barrier and cause encephalopathy, something I could do without, or sepsis. Normal ranges for bilirubin are between 0.0 - 1.0. Mine is usually in the 1.5-2.5 range which is still safe. During my close call mentioned above my level hit a peak of almost 35.0. Looking back at the trend, my liver was able to tolerate levels below 8.0 fairly well but anything above that severely aggravated the already inflamed liver tissue resulting in hyperbilirubinemia. This is known as neo-natal jaundice in babies. Other, milder, side effects are yellowing of the skin and water retention. Although, these too can be painful if allowed to go unchecked.

My level today crossed over from my baseline to 3.1.
The best way to treat this is with sunshine, lemon juice, tamarind extract, Chinese herbal blends and teas, and lots and lots of water. These are difficult treatments right now because the sun ain't shining, and even if it were I can't go outside; fresh fruits and generally anything uncooked are not allowed on the floor because of potential bacteria; and herbs are a last resort because we have no idea how they'll interact with the chemotherapy. My best chance of keeping this under control is to drink what I can and pass as much as possible through me. It may not sound pretty but I may have to poop my way out of this one!

The inpatient doctor, Dr. Kornblau, just told me what they all say, "we'll keep an eye on it." I know from experience that I must take a more proactive approach. My mom is kind enough to go home and brew some tea for me, and if my levels keep going up we'll have to consider the other options mentioned above along with the medical options of phenobarbitals and perhaps St. John's Wort which can help bili metabolism by supporting the ugt1a1 pathways, although it has other side effects, mostly from mood changes.

So right now raisin bran and prune juice are my friends.

And I continue to say my rosary daily, not for myself, but for all of my loved ones, family and friends, who have children, are having children, or are just big children themselves. Rest assured that I am one stubborn SOB and I ain't gonna give in to any of this nonsense my body wants to push on me. Besides, we know that it really isn't up to me. My Carmelite devotion to "Vacare Deo," emptying one of oneself so the love of God can fill you and work through you, gives me much solace. For as Moses knew, "The Lord will fight for you, and you have only to be still." (Ex 14:14)




This post was brought to you by the letters B and I. The BlogPress app and my handy-dandy iPhone!