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January 18, 2000

 

From: "Smith, Dianne" <Dianne.Smith@mpls.frb.org>

When I sent out the last update, Jenny was just out of the hospital, the day
before Thanksgiving. She had a lousy time of it the whole month of
November. Unfortunately, that continued in December and the first half of
January.

Most of the issues have been infections, all have been treatable. Also,
Jenny started having problems with nausea and vomiting. She would gag on
her pills and would vomit after eating. This began on Dec. 7 at Uno Pizza
when we were out for lunch with a friend. It continued to get worse,
finally she hadn't eaten a thing that had stayed down for more than 3 weeks.
On January 3, the doctors finally conducted a barium test to see how fast
Jenny's stomach would empty. Normally it takes 4 hours, Jenny's stomach
took 8 and a half hours. Luckily, there is a pill that Jenny can take that
will remedy this. She takes propulsid 4 times a day now. She has been home
from the hospital since January 12 and she's been eating normally---without
any nausea. Naturally, while she wasn't eating she got very weak again. It
just took too long to get this diagnosed, Jenny lost 15 pounds.

Jenny is slowly regaining her strength with each meal. She is back to
writing her recipes, working on the Smith Familytree and watching the
Backstreet Boys. She is talkative and pleasant. We constantly marvel at
her resilience and stamina; as do the doctors.

Here's a brief summary of Jenny's progress:

1.) Today is Day +214 (exactly 7 months since her transplant)

2.) Jenny takes 14 pills a day Mon. + Tues. and 10 pills a day the rest of
the week (she took 48 pills a day when she was first discharged)

3.) Jenny gets 3 IV meds daily

4.) Jenny has been in the hospital a total of 80 days since we started
this BMT (we've had to go back in to the hospital 9 different times--we just
keep her suitcase packed and by the front door!)

5.) Jenny's alpha-mannosidase level is 205.1 (it was 2.9 before BMT)

We are hoping for a short winter and an end to this horrible flu season.

We think of all of you often. As always, thank you for the continued
support and encouragement.

If you haven't done so already, check out Jenny's new webpage at
www.mannosidosis.org/jenny.htm It has some terrific pictures of Jenny from
infancy to now, as well as all of the updates covering her progress.

Keep us in your prayers.
Steve, Dianne, Jenny and Jason

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