It’s never favorable to hear a doctor (or in this case, transplant coordinator) say, “It’s not good!” when referring to something pertaining to your health. This was the news Jody received yesterday after his bi-weekly blood work was reviewed by his Hopkins team. As you probably know, any organ recipient must take medication to lower their immune system and prevent their body from rejecting the donated organ. Lung transplant recipients require high doses of immunosuppressants and it’s a fine line they walk between their immune system being under or over suppressed; Under puts them at risk for rejection, over puts them at risk for infection/illness.
Jody’s levels have been up and down quite a bit this past year. When he’s had a few weeks of stable lab work, meaning his anti-rejection medication is in the desired range, and we think they’ve found the perfect dose for him… it randomly goes out the window. Despite no change in dosage or routine, his levels come back high or low and his meds need to be adjusted again. While this isn’t ideal and none of us really know why Jody’s body responds this way it hasn’t been a serious concern… until now.
Last weeks blood work once again showed an out-of-the-blue high level of one of his anti-rejection (immunosuppression) drugs. Unlike before, this caused his infection-fighting white blood cells (WBC’s), a key part to ones immune system, to drop dangerously low. Jody was sent for STAT labs yesterday since it had been five days from the time of this critical result (it seems the local lab never sent the results to Hopkins… heavy sigh!). Naturally, after 5+ days of too-high-dosed immunosuppressants, his WBC count dropped even lower and knocked out his immune system, leaving him at very high risk for infection. So what does this mean? It means even more diligence in germ prevention. Jody needs to wear a mask in our house, particularly when around our daughters. He is to avoid public places. He can only drink bottled/filtered water (no tap water). No fresh fruit, vegetables, salads or raw/under-cooked meat. Finally, LOTS and LOTS of HANDWASHING!
Jody will have more blood work drawn on Thursday. The doctors want to see if his WBC level will rise on its own now that they’ve stopped and decreased his immune lowering medications. It is probable that he will need shots of Neupogen, a drug which stimulates white blood cell production, to help boost his levels. This is a very expensive medication and we’ve been warned that it is often denied by insurance companies because of the cost. Apparently it’s also not readily available in our area because Johns Hopkins called 10 local pharmacies until they were able to find one who carries the drug. Jody has been told that a common side effect of Neupogen is bone pain and fatigue. We should know after Thursday if he will in fact need to start these injections. In the meantime…
Here are a few ways you can pray for us:
- That Jody can avoid an infection while his body is so at risk.
- That his body would naturally build more infection-fighting white blood cells.
- That our insurance would cover the Neupogen injections should they be warranted.
- That Jody’s body would absorb his anti-rejection medications more evenly (less highs and lows).
- That his kidneys would recover from the negative impact of the too-high-dosed immunosuppressant.
- Good health for myself and our two young daughters.
Thank you for your concern and prayers, they are always appreciated.
CF Wife 