Day +1009: Hey look me over, lend me an ear…


Your immune system is partying within me, so it feels like my birthday, too. Thank you again for this most precious gift of life.


It’s been more than a week since my case was presented at University of Maryland Dermatology Grand Rounds. Dr. Gaspari was in Scotland so unable to attend. Dr. Cowen from NIH wasn’t there either, although I learned later that Dr. Gaspari conferred with him via telephone.

I’m ambivalent, even a bit disappointed with the overall experience. When I met with the multidisciplinary team at Johns Hopkins last year before my tongue and neck surgeries, I was already diagnosed. The purpose of the meeting was to decide the preferred treatment option(s), given my circumstances. Meeting with a group of about 10 physicians and students all at the same time generated dynamic discussions in which I felt like an active participant. I suppose I expected something similar for Grand Rounds. I thought it might be even more interesting because autoimmune disorders and/or GvHD are much more challenging to properly diagnose and treat, depending more on clinical analysis than on simple pathology results.

For Grand Rounds, Michael and I were escorted to an exam room by the first year resident coordinating the session, Dr. Groleau, (part of the training process). She and I didn’t have a good rapport so I didn’t start in the best frame of mind. Over the next 45 minutes or so, about 20 doctors and students entered the room one or two at a time, revolving door style, to briefly examine and query me about my symptoms and history. It became rather repetitive: introductions, ask when symptoms began, look at my back, look at my stomach, look at the discolorations on my thighs, ask about aches and pains or itching. Some also examined my fingernails and asked about my dry eyes and mouth or if I suffered digestive issues. Each exam lasted only a few minutes. There was no time for us to ask questions. Michael and I quickly lost track of names and how many we saw.

Although all were polite, it seemed that some were just going through the motions while others had obviously reviewed my history. One, Dr. Driscoll, took me to another room for a brief pelvic exam and noted there was scarring but no evidence of current inflammation. She was the most thorough and seemed the most interested. I think the pathologist who had analyzed my biopsies, Dr. Kao, was the only one who addressed me by name and took the time to ask how to pronounce it correctly. She was also very interested in seeing the areas where the samples were taken so she could compare them with what she’d seen on the microscopic level. She said she trained at “The Hutch” in Seattle. You may recall that was my favorite of the transplant facilities I visited before selecting Johns Hopkins close to home. Another doctor commented, “You’ve had quite a ride.” His tone indicated that he had some comprehension of all I’ve been through. I didn’t sense that with the others.

Although I was pleased to be examined by so many specialists and to participate in the training of new doctors, I felt disappointingly detached from the entire process. I wish I could’ve attended the meeting to hear their discussions about my case after they’d seen me. Later, Michael commented that it was better than being on display in an auditorium full of people. Surprisingly, to me anyway, I’m not so sure. Although I prefer socializing one on one, perhaps I’m a performer at heart, playing best to an attentive full house. Would I do it again? Yes. Would I recommend the experience to others? Absolutely. But my experiences at NIH and Johns Hopkins were more entertaining.

Dr. Groleau phoned the next day, summarizing the informal diagnosis and treatment recommendation, subject to review by Dr. Gaspari when he returns: sclerotic skin GvHD/phototherapy. My next appointment with Dr. Gaspari is September 18th.

I emailed my transplant doctor at Johns Hopkins to let him know what was going on and to assure he had no contraindications to any proposed treatments. He responded immediately:

“Everything after transplant to non-transplant specialists is GVHD, and unfortunately, biopsies are not specific. While this could certainly be chronic GVHD, as you might expect because the cells are everywhere, GVHD localized to one or two areas of skin would be rare. So, let’s have you come see us, as GVHD is a clinical diagnosis not a pathologic one. If we decide we want to see biopsy results, we actually will need biopsy not just records, but let’s see you first before making that call. When can you come?”

I’m seeing him this Thursday, September 6th, and already plan to tell him I don’t care what label anyone wants to use – I just want it fixed. I’d like to try the phototherapy unless he comes up with a compelling reason not to. The treatment is the same whether the diagnosis is GvHD or some autoimmune condition, and I’m more comfortable with the idea of light therapy, even if it includes the drug psoralen, than with systemic steroids or immunosuppressants.

The saga continues.

Tag Lines

  • Day +959: My Life, Billy Joel (IDed by Robb & Susanne)
  • Day +999: The Stranger, Billy Joel (IDed by Mike & Susanne)
  • Day +1000: It’s Me Again Margaret, Ray Stevens (IDed by Susanne)
  • Day +1003: The Grand Illusion, Styx (IDed by Dana)
  • Day +1003: Sounds of Silence, Simon and Garfunkel (IDed by Dana & Leslie)
  • Congratulations to Susanne for three in a row!

    P.S. We had 24 people, including Michael and me, at the birthday party Saturday. It went very well. Thanks for the delicious contributions from all who attended and also a special thanks to Chris, our friend in Colorado who couldn’t attend but sent us a wonderful assortment of Nueske’s cheese and sausages.


    1. Happy Birthday to Mary Lou – applause and thank you always!

    2. Karen, You have been very busy! I’m so glad you are doing well. I remain on 2 immune suppressants and prednisone. Ughhh It is so hard some times, but I quickly count my blessings and they are many. Hugs sent to you. Lori

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