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September 6, 2000

CMV Virus in both Retinas!

From: "Smith, Dianne" < dianne.smith@mpls.frb.org >
Date: Wed, 6 Sep 2000 18:09:46 -0500

Once again our dear Jenny is having to endure another setback. She began
having difficulty seeing at the beginning of August. On August 4, I took
her to a Neuro-Opthomalogist and after examining Jenny's eyes, he told me
that the retinas were swollen and he couldn't see Jenny's middle eye. He
was quite shaken. I asked him to page Dr. Davies and get her advice on how
to proceed. After their discussion, a Retinologist - Dr. Morgan, was
brought in to examine Jenny's eyes. He diagnosed CMV virus in both retinas.
He was difficult to understand, but one thing he said stuck with me:
"Wherever CMV goes it leaves a trail of destruction!" Jenny and I were
shocked by his words and by the fact that she couldn't see a 12 inch high
letter E with either of her eyes. That was a long, brutal drive home.

When we got home, Dr. Davies called to say that this is treatable. She also
indicated that we won't know for 2-3 months how extensive and/or permanent
the vision loss will be. She encouraged us to believe that we caught the
CMV in the early stages, and that we should remain hopeful. And that is
exactly what we have done. 

Over the course of 4 weeks of treatment with gancyclovir again, Jenny is once
again CMV negative (in her blood). When we saw the Retinologist on August
21, he indicated that Jenny's right eye is much worse than her left eye.
The swelling had gone down some, but he still couldn't see her middle eye.
He told us to continue with the gancyclovir treatment. Our next appointment
with him is September 11. Since we have observed some tangible improvements
in Jenny's ability to read medium to large print, we will hope for a better
report then.

Jenny's spirits continue to amaze everyone. She is so strong, patient and
diligent. She has so much endurance. The minute she has a good day or two,
she tells me that she wants to get a job! The rest of us take it for
granted, but for Jenny that would be the ultimate achievement - a job, her
own desk with a PC and her name tag on it. Soon we hope to be helping her
reach that goal.

Dr. Davies has continued to keep Jenny's transplant under control. We have
started to skip steroids every other day since the graft versus host disease
is gone. By Christmas Jenny will be steroid and anti-rejection drug free!
(That should have happened by last Christmas, but 2 overdoses and 11 weeks
of undiagnosed GVHD truly set Jenny back.) We are very impressed with Dr.
Davies constant and thorough care. She doesn't leave anything to chance!

Jenny still gets platelets 2-3 times a week and red cells once a week. Dr.
Davies indicated that only 1 in 10 patients still needs transfusions one
year out from transplant and 100% of those patients have chronic graft
versus host disease. We have seen some improvements in this area as well,
Jenny is starting to hold onto to her platelets a little longer. The
gancyclovir can knock out the platelets and red cells, so in another 4 weeks
when we stop administering it, we may see some big improvements. 

By the way, the pharmacist at FUMC indicated that there is a nation-wide
shortage of gancyclovir. Isn't that scary for all these BMT patients?
Without gancyclovir, CMV can run rampant in these immune-suppressed bodies.

These past 5 days have been so wonderful. I can get all choked up just
reminiscing about the many happy moments we've shared. Jenny has gone out
to drive the golf cart for Steve, Jason and 4 friends 3 times this past
week. She was keeping score for all of them, sometimes she had to write the
number on the score card upside down because it was clipped to the steering
wheel. She laughed and even did some "off roading", everyone that was out
with her said she didn't stop smiling and laughing the entire 9 holes.
Jenny has been speaking more fluently lately as well. And she has
remembered some unique memories from a long time ago. Family and friends
all agree that this past 5 days has been the most remarkable improvement
yet. We are seeing glimpses of the "old Jenny".

We've spoken with Todd, Jenny's donor, and he said that it was alright for
me to share his picture (with his wife Ryann) and an excerpt from his e-mail
that he wrote to Jenny describing the bone marrow harvest. Here's their picture:

and here's Todd's e-mail to Jenny: 

My wife, Ryann, played a major role in the ease I had in donating bone
marrow. My parents flew out from Oregon and the four of us went to
Nashville for the harvest. Rye stayed with me in the hospital all night and
took care of me. We talked about you a lot, and still do. We have spent a
lot of time praying for you. I used to sit and try to think about who I had
given bone marrow to. There's not much to go on only knowing you were a 23
year old female. 
The harvest took about six hours for me. It was hard for them because I
have such hard bones. The next morning the nurse and doctor came in, both
females, and said that their arms hurt from pushing through my bones. I
guess I drank a lot of milk as a kid. I remember being in a lot of pain, but
every time it hurt I would just grin and say to myself, "The recipient is
going through a tougher time than me and this is minute compared to her." I
had to get wheeled out of the hospital because it hurt too much. I guess it
took about a week to get back on my feet again. I tried to walk the next
day but then I was out for the rest of the week. I shouldn't have tried to
move around so much. 
One story that I think is funny about the experience is the night after the
harvest. Ryann was sleeping on this chair next to my bed and I woke up, a
little drugged up. The nurse on duty was prior military too, a huge man.
We had talked a bit before getting more pain killers. Well, I thought I
felt alright and I needed to use the rest-room. So like an idiot, I tried.
I swung my legs over, took about one step and crashed to the floor. Rye
woke up and that nurse came in. I was embarrassed. He just said, "Alright
soldier, let me give you a hand there." He picked me up and put me in the
bathroom. After, he carried me back to bed. He was laughing, saying, "You
better just let me take care of you, that's what I get paid for." After that,
I took it easy.
For a few months after, the four holes in my pelvis would itch and ache
sometimes. Other than that it wasn't too bad. The whole bone marrow
experience was good. It was so interesting from start to finish how knowing
nothing about you, I felt close to you. It's hard to explain, but I have a
feeling you understand. I look back and consider it an awesome opportunity.
I would do it again in an instant.

Isn't he wonderful?!

Love, 
Steve, Dianne, Jenny and Jason

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