Tuesday, June 16, 2009

DAY +14: A Tale of Two Patients

Top Line: Susan's transplant-related numbers look good, but her pain, fever, and urinary tract/kidney issues remain

As Callie indicated in her post earlier today (Thanks, Cal, for jumping in), the results of the blood work are quite good, which suggests that the transplant and Susan's body are cooperating very well up to this point. Most of the problems that have arisen appear to be coincident (i.e., not related to and not expected with a transplant), although it's fair to think that Susan's condition right now makes her an easy target for opportunistic assaults.

Yesterday was difficult, with Susan arriving at DFCI in pain for a 10 AM consult and spending the entire day being tested and evaluated before finally being re-admitted, but there's no need to recount the blow-by-blow now that it's history. As of this evening, here's the situation:
  • Thankfully, the pain subsided by this morning to a point where she has not needed morphine today
  • She continues to be on antibiotics to deal with the fever and the inflammation that now appears to be localized primarily in the right kidney.
  • The fever may be the result of the inflammation which may be the result of kidney stone(s) which may or may not have been passed. All of this "may-ness" is indeed because the doctors are uncertain. The CT scans that have been done are inconclusive.
  • What can be done (and may be done tomorrow to provide some clarity) is a cystoscopy to examine the urinary tract up to the kidney with the possible insertion of a stent to relieve pressure and facilitate passing whatever needs to be passed
  • However, the procedure and the stent risk introducing bacteria and further infection, and Dr. Doyle, her lead urologist, prefers to give the antibiotics more time to show results. If the fever and inflammation have not improved significantly by tomorrow, then the cystoscopy becomes likely
  • Susan also has oral mucositis (the "sore throat" I reported Sunday), which is a painful inflammation and ulceration in the mouth and throat. Understandably, she hasn't been able to eat, but she's getting nutrition and fluids intravenously and is able to sip enough to continue working at her full-time job -- taking a gazillion pills a day. Mucositis is commonly experienced by transplant patients, and those undergoing chemotherapy and/or radiation, so this is not unexpected. It does seem to be abating, but it's too soon to tell whether this is a slight and temporary lull or real improvement on the way to resolution.
Finally, your comments are not trees falling in the forest unheard. Susan wants everyone to know how much she appreciates all the good wishes and encouragement you've been sending her (keep 'em coming), and she apologizes that she's not yet feeling up to responding to you individually. Hopefully, the day will come soon when she's back in touch with each one of you by email and phone. REMINDER: those few of you who are posting comments as "Anonymous" and not signing them (typing your name at the end), you truly are anonymous. Unless that's your intention, time to fess up so Susan can tell you're you.


  1. Susan, I'm so sorry that you're having pain and "coincident" problems. I hope you feel much better very soon and are able to go back to your apartment and think about good things like how to rearrange the furniture. I'm so glad to hear that the counts have come up.

    Much love and healing thoughts,
    Harriet (Bertsche)

  2. Hi Susan, Just wanted to let you know that you are in our constant thoughts and we are sending you all our best wishes. Hope you are feeling better by today! All our love, Becky and Michael

  3. Susan, et al. ....
    We've been following the daily posts and cringe with each "coincident problem" and cheer seeing your blood work get only better. We now have a working definition of the hero...it's Susan. You're an inspiration to all of us....
    Dick and Catherine in California

  4. Thank you, Jerry for the detailed update. So glad much of the news is so good, and am sorry about the UTI and pain which makes it heavy sledding, Susan. Hope you will soon be free of that and mucositis. I think of your bravery often and know most people would not do nearly as well as you have every single day since you were diagnosed.

    If Bob can lay hands on a WSJ there is a nice article about Columbia County today.

    Pouring in NY, but we are told there is no rain in Seattle and that is because we have had it all. At least it is cool. Is there anything at all I can send you? Can you have flowers or are they banned, or you are surrounded already? Love to you and Bob and Cece and Callie and all
    who are supporting you through this time. Diana