Over the past few days
things have been stressful. Not knowing what to expect at a new facility,
leaving UAB, Jim sleeping more and more, and I have had two flare ups in one
week. We went to UMC in Jackson, MS yesterday. We had to get up early (4:45 am)
to be able to leave by 5:45 am. Jim’s mother came to be with the children and
get them off to school. We talked to Julianna several times about being a good
girl and getting up and getting dressed like she needs to. Cameron always
follows her lead. Julianna pinky promised that she would be great but of
course, things didn’t go good. She immediately got up and cried for her daddy
and then she wanted her mommy. After some persuasion over the phone and some
Sunkist from Maw Maw, things got a lot better. (Julianna is extremely worried
and concerned for her daddy—please pray for her to be able to relax) The
children made it to school just fine. We on the other hand, only got turned
around one time but made it to UMC only 2 minutes late.
Everyone was so nice
from the lady who met us at the door to the doctor himself. It is a much
smaller place and everyone is a lot more personable. They took all the regular
vital signs and then put us in a room. We met the transplant
coordinator/personal nurse of Dr. Moore. She was so nice and took her time
asking questions, talking about the medication he is on, talking about his
history, and allowing us to ask questions. Then we waited for about 5 minutes
and Dr. Moore came in. He was very friendly and very professional. He asked
several questions and examined Jim thoroughly. Then he allowed us to ask as
many questions as we wanted. We found out a lot of information. We were there
for almost 3 hours.
Many people assume that
once a doctor says you need a transplant you automatically get on a list.
Before you get on the list you have to go through a battery of tests.
Everything has to be in good shape for you to be able to be considered for a
transplant. Jim will have to get an eye exam, dentist check-up, to another cath
and endurance check on a bicycle and everything in between. Some tests we will
do at home, others can be done locally at our regular physician’s office, and
then we will have 3 days of testing done at UMC. If these tests have good
results we will then have the go ahead to get on the list. It takes a while for
them to be able to schedule the tests, so Brunette (transplant
coordinator/nurse) said the earliest they could schedule us was for the 4th
week in March.
Dr. Moore stated that he
has done several successful transplants on patients who have transposition of
the great vessels. He stated that there are a lot more risks but it can be
done. He also stated that Jim needs to try to walk for 5 minutes a day to keep
his other muscles working and strong. The greatest danger that he faces is that
half of transposition patients die suddenly (Jim has an ICD that can help
prevent this) and the other half decline rapidly where they sleep more and
more. Fatigue will be the worst thing to endure. Jim’s heart is so weak that it
is not getting his blood to the other body parts it needs to, to refresh him.
Jim’s fatigue will continue to get worse. Each day he is able to get out of bed
and do anything will be counted as a success.
I will be honest to say
that I have struggled over the past few days. I have let my doubts and worries
consume me. I pray every day to God to let me be free from fear. Help me to be
strong, that I may bring glory to God when we are enduring this trial in our
lives. I do believe the devil is seeking every opportunity whether big or small
to creep into my life and say….You know life is to hard….you can’t handle
this….it is not worth trying….be mad at everyone….blame yourself…go hide under
the covers….you can’t love God, look at what he is doing to your husband….no
one cares! Well, first of all I say get behind me Satan…do you know that we
have been through hard times before and we can get through anything with God….I
will never stop trying because Christ never gave up…..love others that what I
choose…..There is nothing I have done, I can only continue to be faithful to
God and pray for help….I am not going to hide because others have shared their
hard times, their struggles and because of them we are better….I will never
stop loving God, he wants what is best for me and my family….people do care
(have you seen the cards, have you seen the hugs, the tears, the financial
gifts)
Thanks to so many that
have sent us cards. We now have over 165 cards that are covering our bedroom
walls. It is so encouraging to wake up and go to bed with a visual reminder of
how many people really do care. Thanks to all those who have given to us
financially. It has been such a humbling process. We pray that God Almighty
will bless you richly for helping us when we need it the most. We could not
survive without our brothers and sisters in Christ. We love you and we are
sooooo thankful. Blest be the tie that binds. In all things we praise you God
and we give thanks.
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