“He took my trousers off, told me to cough
Doctor says there ain’t nothin’ to discuss…
All the time, such aggravation
Gonna be my ruination
Too much back pain
Good gawd, drive me insane”
Hint: No, I don’t have the ailment that’s in the song!
9/5/2013: I saw my transplant doctor at Johns Hopkins today. I’ve fretted about the appointment all week, mentally rehearsing what I’ll say if he once again says my skin condition doesn’t look BMT related.
My first surprise upon arrival is no blood draw. The tech checks my weight, temperature, blood pressure, and oxygen levels (all good) and escorts us to an exam room. Our next surprise is no waiting. Audra, the nurse practitioner, appears within a few minutes for the preliminary examination. She notes that the dimpling on my stomach was not there last December and the hyperpigmentation has increased. She asks the usual questions about symptoms and additionally asks if I’ve noticed any changes in motor skills. Michael notes I’ve had hand cramps that send my fingers in odd directions and I also stumble for no reason occasionally (I call it spontaneous dancing). I rate my back pain as a “2” but he ups it to a “3” based on the extent of my complaining. He knows me well after 29 years and factors in my high tolerance for pain.
Dr. Jones arrives soon after and agrees that the abdominal tightness is new and observes there is also tightening of the skin on my lower legs. He tells me that I probably have chronic sclerodermoid GvHD although it is an atypical presentation (surprise, surprise). Reticent as always, I blurt, “Well, I wish you’d decided that nearly two years ago when it was a tiny spot!” He says it isn’t bad, to which I reply, “I don’t care what it is medically. It’s a quality of life issue and I want it treated.” He asks me how it affects me…. Big sigh… Let’s see…sitting, sleeping, wearing clothing….
Philosophically, I like it that Hopkins is conservative about GvHD treatment. My primary reason for choosing Hopkins, besides proximity, is their post transplant Cytoxan protocol to avoid the steroids and immunosuppressants that seem to be so readily prescribed at many other transplant centers. Still, it’s terribly frustrating that it took this long, circuitous route through other doctors for them to consider the GvHD diagnosis at all.
The good news is that this type of cutaneous GvHD is generally limited and doesn’t typically (I hate that word) affect other organs. The bad news is that treatment may or may not be successful, about a 50-50 chance. He says PUVA is not appropriate for chronic GvHD, only for acute (first 90 days post transplant). The preferred treatment is extracorporeal photopheresis. I’ll discuss that further when/if it happens. Dr. Jones wants my biopsy slides from University and wants me to see the Hopkins phototherapy dermatology specialist, Dr. Sweren. He also wants blood work for thyroid and gammaglobulins. If treatment is done, it will probably be twice weekly and may take a long time to see any results.
I end our meeting complaining to the doctor about how often I hear the word “unusual” applied to me medically. Audra smiles sardonically, “Oh, there’s no danger of you ever being ordinary!”
I’ll close for now. Stay tuned for an excellent guest post from a fellow traveller.