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Still in Rochester

September 5th, 2009 at 12:37 pm

So I'm sitting in the hotel laundry slash breakfast area doing laundry while DW is in dialysis for 4 hours. Fun stuff.

The working diagnosis right now is Post Transplant Lymphoproliferative Disorder - PTLD. Her hospitalist also believes she has CMV with symptoms. And a possible adrenal gland problem because her cortisol levels aren't quite normal and her blood sugar is unstable. She also suffers from severe chronic malnutrition as a result of dialysis combined with her multiple surgeries and a long term untreated disease. So they will place a feeding tube through her nose and into her small intestine that has to be in place for a minimum of 4 to 6 weeks, and up to 6 months. She will be allowed to eat with this, but it's essential to her long term care. She also will be placed in physical therapy and rehab to get strength back because she hasn't be able to walk far on her own. The doctor suggested home heath care with this, but that's to be worked out with the social worker.

DW also had 800cc's total of fluid in her abdomen. She did have that drained out, and it was infected. Vancomayocin did the trick for that. Her bowels will be chronically swollen as a result of the PTLD though, and being a lymph disorder, it's unknown the extent of the disease.

The PTLD is a form of lymphoma and is treated with chemo. Need to talk to a hemotologist for more info on the disease - the doc said it's a very rare and very nasty disease to have. The only way they've been able to diagnose it at all so far is because her bone marrow showed strong abnormalities in her skull during a brain MRI. We're waiting on biopsies to confirm all of these so called working diagnosis. DW also has a colonoscopy later this week to kind of get a good look at everything.

So while the diagnosis isn't great, we at least have a good idea of what's going on with her. Better than no answers at all. And they have been very informative here and when we have concerns, most of the time the doctors have accomodated them. Like having so many drugs in her she didn't know what state or hospital she was in, or that she had just been given meds. So that got stopped, and she's coherent now.

We still don't know much about the treatment and everything that needs to happen, but we're in the ball park and are working on a game plan, which is a far cry better than where we were. Mayo has been good for us so far, and is a pretty impressive hospital all in all. That's to be expected given it's reputation tho.

One other nice thing is that my BN CSM called me personally and said they won't be charging me leave for being up here. That makes me happy.

6 Responses to “Still in Rochester”

  1. mrs. Says:

    I am sure that knowing what is going on takes away some of the anxiety of the situation. Take care!

  2. NJDebbie Says:

    Take care! You are going through a lot.

  3. jillybean Says:

    Yes, do take care of yourself. It sounds like you have been a wonderful advocate for your wife.

  4. creditcardfree Says:

    Thanks for the update. I'm so glad your wife is getting better care in Rochester...she deserves that and then some! Best wishes for increasing good news.

  5. baselle Says:

    Thank you for the update - it sounds like you've gotten a couple of breaks and your wife's care is starting to turn around. Fingers crossed that it continues!

  6. Jerry Says:

    I'm glad that your CSM has your back in this situation, which has to lead to some relief. All in all, even with a discouraging diagnosis, you seem to have good care that is covered through the military insurance, and Mayo is a great place to be. I wish you well...

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