February
27, 2006
People have been asking how Lindsea's heart biopsy went on February
16th. Her heart is completely normal, God be praised. No evidence
of heart rejection shows in any lab report, or seen during the
catherization.
Before
Lindsea was led to the operating room, I signed many papers
giving consent for the surgery. It's always unnerving to read
the possible risks of the procedure, including death. I am allowed
to stand beside Lindsea as the anesthesiologist preps her on
the operating table. Lindsea asked for chocolate-flavored gas.
Shivan (heart transplant January 29, 2001) also requests chocolate,
but one time the doctor didn't have it, so she thinks she ordered
watermelon-flavored gas.
Lindsea
and Shivan are now more than one year post-transplant, so they
receive biopsies only once, or annually. Their doctor, Juan
C. Alejos, inserts catheters through the neck and groin to check
both sides of the heart, the carotid artery, more.
One
of the major problems with heart transplant patients isn't the
donated heart, but, in time, clogging of the arteries leading
to the heart. Both girls are taking cholesterol medication,
aspirin, drugs that help prevent plaque build-up. They take
an anti-rejection drug, Prograf, also known as Tacrolimus. That
drugs weakens the immune system, making the girls more susceptible
to infection. That's one of the big reasons I've decided to
homeschool the children, rather than risk their exposure to
ill kids in a regular public school classroom. Many kids (even
adults) don't cover their mouth and nose when they sneeze and
cough. Kids don't wash their hands enough. It's easy to pick-up
a nasty bug. So far, since the girls were transplanted, they
haven't been too ill.
July
30, 2005
XV
World Transplant Games, London, Ontario, Canada
The girls and I just returned from London, Ontario, Canada.
The
weather was blistering hot and humid, quite unlike our cool,
coastal California, but we kept drinking spring water and staying
in the shade as much as possible. Fortunately, the girls competed
in three sports held indoors: bowling, swimming, and badminton.
They also competed in track. I have good news to report. Lindsea
won 4 medals in the sporting competitions: 2 silvers and 2 bronzes.
Shivan received a silver medal in the breast stroke.
Athletes from more than 45 countries competed in the World Transplant
Games. Not many child competitors, probably only about 50 total,
competed. We made friends with people from many nations, especially
Ireland, Australia, Puerto Rico, Great Britain, Denmark, and
Canada. I also enjoyed good conversation with teams from Tunisia,
France, and Spain.
We stayed in the dorms at Western Ontario University. That was
a new experience for me, as I never lived in a college dorm
when younger. We had to share the shower and bathroom facility.
We ate in a large cafeteria and it was a friendly atmosphere.
Shivan was happy to meet an Irish doctor who also loved Harry
Potter. She had the new book in the series. It had a different
cover than the one I bought Shivan at the Detroit Airport. Shivan
turned 11 at the games. Alaina turned 10 while we were gone.
I told the girls we'd celebrate their birthdays belatedly. David,
our oldest son, also graduated from Defense Language School
when we were in Canada. Ken and Alaina went to his graduation.
We are very proud of him, as Arabic is a difficult language
to learn.
The
drug company, Roche, in Canada, sponsored the girls and I to
go to the games. We only needed to pay airfare to Detroit and
back. We found out that another family was able to fly free
as folks in their community donated frequent flier miles, so
that's an option for the next travel experience. We hope to
travel to Bangkok, Thailand in 2007 for the next World Transplant
Games, and to Lexington, Kentucky for the 2006 U.S.A. Games.
Besides the fun at athletic events, kids and escorts with the
Astellas Childrens Program took excursions to Niagara Falls,
Canada's Wonderland, Ontario Children's Museum, Storybook Gardens,
and a butterfly conservatory. I took many great photos and hope
to place the best shots in a digital file online soon.
Well, I'll write more about our experience soon. I need to head
to bed now, as tomorrow Alaina competes in a swimming event.
She's an Aquabear and a member of the Santa Maria Swim Club.
Tomorrow is her second competition. Her favorite stroke is the
breast stroke.
Blessings, Susan Friesen
April
19, 2005
Our youngest daughter, Lindsea, 8, had major dental surgery
a little over a week ago. She had 11 teeth drilled and filled.
Because of her immune-suppressed state due to the heart transplant,
she needed to have the dental work done under general anesthesia
at French Hospital in SLO. Dr. Jac Pedersen is one of the top
pediatric dentists in California. Praise God for the dedicated
doctors who work so hard to help people! Lindsea is doing well
after the dental surgery.
We
will travel to UCLA in early May to see a geneticist. I don't
know all that will entail. So far, doctors haven't been able
to isolate any particular gene to show how 2 daughters were
susceptible to the virus that attacked their hearts.
A
cardiology/ genetics conference will be held at UCLA. We've
been told that researchers may approach us to talk about our
girls' situation.
Some
good news-I will work on two books about the transplant experience.
The Maui Writers board has accepted me into a writers program
in Alaska and Hawaii! I will be going on an Alaska Writers Cruise
for a week this Spring. In August, I'll attend a Maui writers
retreat and conference (gone about 2 weeks). I need prayers
that I will write exactly what needs to be
shared about all the issues related to organ donation and heart
transplantation. My hope is that many will read the book, as
awareness of the importance of organ donation is so vital.
I
can never erase the memory of little Danielle Fox, a baby who
died. I held that baby in my arms shortly after she died. Her
mother, Heather, and I had become friends. So many parents bury
their little children without donating organs that could've
saved Danielle and other babies like her. Unfortunately, I've
lost track of Heather. The last I heard, she emailed saying
she had to move away from California, as too many sad memories
relating to her daughter were here.
We
enjoyed a nice field trip to La Purisma Mission, one of the
old Spanish missions in California, last Saturday. I organized
the trip for the local homeschooling group. We enjoyed seeing
many interesting demonstrations like: soap making, bread/ tortilla
baking, candle making, sheep shearing, carding, Indian games,
blacksmithing (a man forged a nail). The kids and I enjoyed
the visit, plus I met a nice homeschooling mom and her daughter.
The girls and I visited the mission a few weeks ago when a mountain
man group was there setting-up camp. The mountain men were in
costume.
Blessings,
Susan
March
11,2005
Shivan
had some problem with the anesthesia after her annual biopsy.
She was hospitalized overnight, but she recuperated well.
We went to Disneyland for 2 days for Lindsea's 8th birthday,
had a great time.
Susan
2nd March 2005
Please keep Shivan, age 10, in your prayers as she has her annual
heart biopsy at UCLA on March 4.
God bless, Susan
