|
About Me
Gastroparesis
Info
E-mail "Monkey Girl"
Sign My Guestbook
Update On Me |
You may e-mail me at
bluelightningjeep@earthlink.net and I will do my best to reply. My
medical bills are expensive, so if you feel like you would like to help
in other ways, please consider donating to my transplant fund. Any and
all support, prayer, and care is appreciated!
National Transplant Assistance Fund for Carissa
March 9, 2008
Thank God for the time change! Longer days and warmer weather
always help me feel better! It also means spring is finally
coming!!!
It looks like I will be celebrating my two year anniversary in
Pittsburgh again this year. I am scheduled to be in clinic on Thursday,
and I also have an appointment with an osteoporosis specialist on that
day. On Friday I am scheduled for a biopsy at 6:30 AM.
I have been having a lot of ups and downs lately. Some days I feel
pretty well, and other days I crash with extreme fatigue, nausea, and
abdominal pain. It is so unpredictable. I'm also battling the virus a
got several weeks ago still, so my ears are closed up and my head feels
fuzzy. I've been fighting bacterial overgrowth for a couple of weeks,
but I am allergic to one of the meds for it, and they are concerned
about giving me the other because of the potential neuropathy reaction.
Many I can't take because of my long QT (heart problem) or because they
interfere with the Prograf (anti-rejection med). So, they gave me
limited doses of the Flagyl for three days, but then started me on a
full course last Friday to try to knock the overgrowth since three days
was not long enough.
Overall, I am doing ok. I am accomplishing a good deal on the new G-PACT
website which I hope to launch in a few months, and working on creating
an awareness video about gastroparesis for YouTube and the new site.
Several G-PACT volunteers had a teleconference with some Medtronic reps
on Wednesday, and we are excited about working together with them again.
We are planning several awareness events, including an awareness day at
Shea stadium during a Mets game around the end of August. We have many
other events in the works, and things are really moving forward!
Please pray for safety as we travel to Pittsburgh this week, and spend
some time thanking God for the miracle he performed in my life two years
ago!
March 1, 2008
This is copied from my Facebook blog-
On March 13, 2006, I was given a gift that only God can provide. A
gift that cannot be bought, an opportunity that cannot be earned, a
treasure that is not easy to find, and more valuable than any other.
This gift is sacrificial for many people, and takes a dedicated and
passionate team in order to provide. It is the gift of life.
The gift of life comes at the expense of so many. During a time of the
sudden loss of a child, a loving family made the decision to allow
someone they did not even know to have the opportunity to share in their
loss in a positive way. At a time of such heartache for them, they
relieved an enormous amount of heartache for so many others. As Christ
sacrificially died on the cross to give us life, a young child had to
sacrifice his/her life in order for others to live. I am one of those
who benefited from this selfless act.
As I look back over the past two years, I realize each day how the gift
of life has transformed my life in so many ways. Not only did it save me
from the brink of death, but also changed me in other ways as well.
At the time of my transplant, I was barely 62 pounds. Every bone in my
body stood out. I had trouble walking a few feet to the bathroom, and
rarely got out of bed. I relied on 100% IV nutrition, and my body was
still starving to death. I battled constant systemic infections
(sepsis), one episode which was almost fatal. Fear predominated my life.
Thoughts of death consumed me. I lost all hope. During the 16 month wait
for organs, my small bowel was removed, I fought off multiple
infections, and almost lost all venous access which would have
disqualified me for the transplant.
Two years later I have no tubes, no ostomy bags, and no IV lines. Eating
is enjoyable for me and I am able to maintain my nutrition orally for
the most part. I am able to walk around the mall and climb the stairs.
My HP parking permit has been set aside, only to be used when absolutely
necessary. I no longer battle high fevers and long, frequent
hospitalizations from IV infections. I have less fear and more hope. I
look to the future, and don't focus on the past because I now have a
future to look towards. Instead of planning my funeral, I am planning my
life. I now enjoy getting up each day, and do not have the desire to
sleep just to pass the time and escape from my problems.
My life is by no means perfect. By having a transplant, I gave up one
set of problems for a different, but easier to manage, set of
complications. I still have constant battles, but I feel confident I can
overcome them. These battles have become part of my life. They no longer
control my life. I still struggle with the fear of the unknown, but that
fear no longer overtakes me.
As with anyone, there are many ups and downs, and positives and
negatives in life, but I realize this more than most. I do not enjoy the
numerous meds and rigorous schedule, but I realize how important a
commitment to that is to my health. I am grateful for the way that they
keep me healthy and alive, but also realize the negative impact they
have on me now and into the future. While I am grateful for my excellent
recovery, I also have feelings of guilt over being healthy when I see
the battles, and experience the losses, of friends who have been less
fortunate. I often feel guilty that a child had to die in order to give
me life, but so grateful to the family who gave me the opportunity to
carry on that life inside my body. I feel like I owe it to them and
their child to keep fighting and take care of their gift as much as
possible. As with Christ, there is no way I can repay them for what they
have done for me by granting me new life, and the unselfish act of
giving part of themselves to me during a time of great loss.
I now have hopes and dreams. I can plan a future and work towards it. I
wake up each day excited about the opportunities that might come across
my way, and work to utilize my time and energy to cling on to those
chances. I love life and realize the importance of living each day to
the fullest. I no longer focus on how to help others get through my
dying process, and now focus on how to rely on God, others, and my own
strength to help me start living again.
It is not easy for me to make it through each day. I have to
intentionally choose to be happy and content, and it is often a struggle
to make the best of a bad situation. I have constant battles and
setbacks, and each change proposes a new set of challenges and forces me
into a new mindset and lifestyle change. I get discouraged with each new
challenge, but then try to focus on each new opportunity as well that
comes as a result.
I have gone from a 62 pound bed-ridden patient, to a much healthier 97
pound human being.The immediate physical impact of my transplant was
apparent as the surgeon noted how quickly my cheeks filled with color as
soon as the organs were connected and they finally began to circulate
blood. Within a few weeks I began growing hair again. My fingernails
turned pink, and my skin was smooth. My eyes brightened, and my strength
gradually returned.
Making commitments is not as scary for me anymore because I feel I can
keep them. Making plans for my future is no longer a dream, but a
reality. My personality has returned, and my mind has become more clear.
I have relearned how to concentrate on reading and writing, and
developed skills to help me regain the ability to remember things. My
energy can now be spent on helping and inspiring others, rather than
just constantly fighting to stay alive. I continue to be amazed at the
power of the Great Physician, and the abilities and wisdom that he gave
to my earthly physicians. His hand in this whole process has
strengthened my faith in incredible ways, and my devotion to Him has
become stronger as I realize He still has some incredible plan for my
life. It's exciting to see it unfold!
I do not know what my future holds. I am establishing goals and working
towards them, but realize that my plans may need to be changed. I feel
like I am at least 10 years behind many of my peers who now have
careers, families, and homes. While that can be discouraging, it also
encourages me to work even harder to achieve the things I want to in
this life. Two years ago, I did not think I would be around to deal with
that problem!
I consider March 13 to be my second birthday. I will always celebrate my
life on this day as I would on any other birthday. Since 1994 I have
been through so many things that few people could survive, and I have
been given an incredible opportunity to appreciate life so much more,
and to grow and develop through the challenges I face. My prayer is that
I will use this new life to make an impact on the lives of others in
whatever manner God has planned for me.
Please review my February updates for
pictures of me pre and post-transplant for comparison.
Previous Updates
|
My Artwork
Prolonged QT Info
Hot
Links
Home
Life on a Feeding
Tube |
