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Cindy G. |
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Hi, my name is Cindy G. I am thirty-two years old. I grew
up in Massachusetts and moved to Rhode Island four years ago. I live
with my sister Allynn and her four boys in a raised ranch. I live
downstairs, so no stairs, what a beautiful thing.
I was a very independent person before all this began. I
could always do things for myself and seldom asked for help, but now it
is a different story. I try to do the best I can with the abilities that
I have left.
I feel that with my current diagnosis I have to live one
day at a time. I did learn that from my dad, who after a long illness
with heart disease, died when I was a senior in high school. He had what
is called cardiomyopathy related to having the flu one year and then
eventually it developed into congestive heart failure. In all that time
he never gave up and would always say, "You can only live one day at a
time, so make the best of each day."
I was diagnosed with connective tissue disease in
November 2001. My ANA blood test was positive and the physician
explained what it meant to me. The rheumatologist explained that it
looked like I also had scleroderma as well, but it was too soon to
diagnose. However, he did put on my chart "Rule out scleroderma." Go
figure.
My hands became swollen and I started with open sores on
my fingers, which are known as ulcers. As the weeks went by my fingers
became worse. I felt I was living on ointments and bandages. And if
anyone touched my hands, which made the pain worse, then I was not a
happy camper. Because my hands were not improving, the rheumatologist
referred me to the Boston Medical Center to see Dr. Joseph Korn.
When I finally met him, my hands were a mess and I was
beginning to show other signs and symptoms such as muscle aches and
stiffness of joints. He started me on some medication, which helped. He
explained what scleroderma was and how it was affecting my body. I went
into a big denial, which took me a long time to deal with.
By February 2002, my feet were very badly swollen. He
changed the anti-inflammatory medication and this helped. I started in a
trial study for Raynaud's. I had to record every time my hands and feet
turned color, which was all the time. But I did enjoy the study and
learned about the disease. I do think that the more research that is
done, the more it can help people with all types of scleroderma.
Once the weather became warmer, my hands improved and I
learned when to put (and when not to put) bandages on my fingers.
As the months progressed, from April to September 2002, my body ached all over and I was having problems and difficulty doing the most basic tasks, things that a year ago I could do with ease. During this time my doctor officially diagnosed me with diffuse scleroderma.
In September 2002, I went for a regular visit with my
primary care physician. He took one look at me and said I was anemic. He
asked me if I was tired and had dizzy spells. I told him I was tired in
the morning when I got up and exhausted in the evening when I got home
from work. All I wanted to do was get into bed. I really thought it was
all connected to scleroderma. He ordered blood work and said that most
likely I would be needing a transfusion.
The very next morning he called and told me to get to the
Norwood Hospital as soon as possible. My hematocrit (hct), which is the
red blood cell count, was fourteen and my hemoglobin (Hb) was four
grams, which means they were both very low. I was in such a state of
shock I could not answer him. He could not understand how or why I was
still walking, never mind still driving and working.
Coincidently, my sister showed up unexpectedly and found
me crying. Funny thing, too, as I was late leaving the house because I
could not find my purse. I told her what the doctor said, so she drove
me to the Norwood Hospital, which is in Massachusetts. As soon as I
arrived at the emergency room, I was put on a stretcher and blood was
being taken for type and cross match. Two intravenous (IV) lines were
put in; one for fluid to prevent dehydration and the other for the blood
transfusions. A chest x-ray was done and a cardiac monitor was slapped
to my chest. The doctor told me I would have to be admitted.
The nurses were surprised that because of my age of
thirty-one, I had to have so much blood; two units on Friday and two
units on Saturday. I stayed in the hospital for five days. I had an
endoscopy, colonoscopy and barium swallow to see if they could locate
the bleeding point. The results read, "Stomach and large intestines red
and inflamed." I was to continue on my current medication to help with
the healing.
October 2002, I started with a trial study for
scleroderma at the Boston Medical Center. This lasted for thirty-two
weeks, and at each visit there were blood and urinalysis tests. In the
span of these thirty-two weeks, I would receive a total of four
infusions of the trial medication. I was monitored closely.
However, by November 2002, my blood count was beginning
to drop again. My hematocrit was below twenty-five and once again I had
to be transfused. This time it was at the Boston Medical Cancer and
Blood Disorder Center. I was scared as I had never seen so many people
receiving chemotherapy before.
One of my best friends, Tammy, came with me. I still
remember how she did not like hospitals or the sight of blood and I
teased her, especially when they were inserting the needles in me. She
did not want to look, but I was glad she came with me. I did feel
better after the transfusion, but by January 2003, once again I had to
have more transfusions. Same place, only this time, my other best
friend, Laura, came with me. I had to receive three more units. This
time I had problems with the second unit. Laura noticed that all of a
sudden my face went white and tears were flowing down my cheeks. I also
started to shake out of control. Laura called the nurse for some help.
They told me this was common. My body was rejecting the second unit.
They put blankets on me and stopped the transfusion for half an hour. By
then I felt much better and I completed the last unit of blood.
Dr. Korn then scheduled me with a gastroenterologist (GI
specialist) right away. He wanted to get to the bottom of what was going
on with me. I went to see the GI specialist on Monday with my friend
Debi. I was scheduled for an endoscopy that Thursday. I was really
surprised that he could get me in so quickly.
On that day, I went to Boston Medical Center. To say I
was scared remains an understatement. I was petrified! My sister Allynn
went with me for support, plus they told me that I could not drive after
the procedure due to having a lot of medications in my system. From what
I understand now, I was not the greatest of patients. With all the
medicines they gave me I was fighting everyone and had to be held down .
Of course it did not help that my mouth could not open wide enough. They
even had a hard time putting the small pediatric mouthpiece in. That was
when the doctor decided that the next time I had this procedure, and
there would be a next time, I would need to have anesthesia so I would
be completely out.
What the doctor discovered was that I have watermelon
stomach and that was why I was slowly losing blood. He told me he would
schedule the next appointment and they would do the procedure to
cauterize my stomach lining to help control the bleeding.
In February 2003 I went in for the another scope examination this time they would try to fix my stomach with the cauterization procedure. I went under with general anesthesia. It did work but they still had problems with my mouth so they went through my nose for intubation. The worse part was the piece they stuck up my nose to monitor my breathing. When I woke up the only thing I could feel was the pain in my nose. Thank goodness for serious medicines to help with pain! It took me a few days to recover. This occurred on a Thursday so I did not miss much work.
In April 2003, I had to return to the physician to have
the procedure repeated, and I must say, it was not a good experience,
either. My sister Marion, who is a registered nurse, was with me and she
was totally involved since I was not coming out of the anesthesia like I
should have. I had aspirated and ended up as a patient in the Intensive
Care Unit (ICU).
I had aspiration pneumonia. It just so happened that I
had had x-rays done the previous Friday which verified that my lungs
were clear before the procedure. I was kept on oxygen for a day and a
half. My sister called my mother, who is also a registered nurse, to let
her know. My mom could not get a flight out of Florida that night but
was going to try the next day. My sister called her the early part of
the next day and told her I had not yet stabilized. The ICU nurse and my
sister cared for me that night. They were awesome!
As soon as I was able to speak clearly, I told my GI
specialist I would not do that procedure again. The anesthesia part was
too much for me to handle. On the third day, the doctors told me I could
leave if I took my antibiotics. However, since I was still very
nauseated and vomiting, they were concerned. But all I wanted to do was
leave and go home to my own bed. It took me much longer to recover this
time.
I have spoken to the GI specialist since and he said I
might have to do it again but only if it was absolutely necessary. My
blood count has remained constant at this time and that is a good sign.
I saw Dr. Korn and my physician a week later. I was
feeling much better and especially important, I was eating better. But I
am still losing weight which is the bad part. This is not a good thing
for me. The loss of thirty pounds in eighteen months is not good,
because I was not overweight to begin with. I have gained some and lost
some, but it will take me a long time to get back to one hundred and
twenty-three pounds.
In May 2003, my blood pressure was very high. I began to
notice that over the last couple of months it was slowly increasing but
nothing like it was that day. I was told by the doctor I could be having
scleroderma renal crisis. I was put on a blood pressure medication right
away. I was very scared that my blood pressure would not go down. It
remained high for two weeks and because it was not decreasing, they
increased the dosage of the medication, which helped.
Then shortly after the increase dosage of the medication,
my friend Debi could not get my blood pressure and I had a very slow
pulse. This was reported to the doctor and they immediately decreased
the dosage to the original amount. My blood pressure is now within the
normal range where the doctor wants it to be and as long as I continue
to take the medication, I should be okay.
In June 2003, I received the latest news that my
pulmonary function test (PFT) had a twenty percent decrease since I
started having the tests a year and half ago. I recently had a CAT scan
and I am now waiting for the results.
Life certainly has its challenges but I will live out my father's words, "You can only live one day at a time, so make the best of each day."
~ Update 8-19-03 ~
I did receive the good news that my CAT scan came back normal. I think that was the best news ever!
On July 8, 2003, I went to my last visit in the
scleroderma study. They drew lots of blood (about eight to ten vials)
and I also had a complete physical. The RN Coordinator asked me if I had
the medication or the placebo. I told her I thought I had the
medication, but we will see. Hopefully, the results will come out in
February 2004.
I showed the doctor my new ulcers on my fingers; one on
my index finger, and four on my knuckles. The one on my index finger was
not looking good so he prescribed antibiotics. Dr. Korn also asked me if
I wanted to participate in the next study in the fall. It is a study
that will focus on help for the ulcers. They are investigating the use
of pulmonary hypertension medication to help treat ulcers. Again we will
see. I really do enjoy doing these studies and if it can help to find a
cure or at least keep scleroderma from doing so much organ damage, then
I am willing to do the study.
I also went to see my Primary Care Physician, Dr. Michael
Higgins. I told him that I had blood work done at Boston Medical Center.
I did not want to have the same test repeated or be punctured again to
have my blood drawn. I updated him on what Dr. Korn had done while he
was going through my chart. I could not believe how fat my medical chart
was getting. The nice thing is that I have been a patient of his since
1990 and it is really easy to talk to him. All the staff at the office
are really great, which is a plus.
On July 21, 2003, at my Dr. Korn's appointment , I was
informed that my lab tests were holding; levels are not going down,
which was great news to me. My blood pressure has also remained stable.
My ulcers were still not the greatest, but at least they were not
weeping. He did tell me that it would take time to heal. I must keep
being monitored for changes.
On July 22, 2003, I went to see my gastrointestinal (GI)
specialist. I needed to make sure everything was still okay with me. He
explained to me that as long as my blood levels stay stable I should not
worry about my stomach. Now that was a good sign that cauterization
treatments worked. He also discussed with me the possibility that if my
levels drop again and I keep receiving those lovely transfusions, he
would admit me as an inpatient and have the procedure once more. My
response was, "Only if it was absolutely necessary". I really do not
want to go under anesthesia again because of what happened in April.
Since I am doing so much better I do not need to see him
again, unless I begin to have problems. That was fine with me and I
thanked him for everything.
I have finally decided to leave my job of eleven years. I
will go on short-term disability, and will still have my insurance,
which is a good thing. My friends at Amego, Inc. decided to help me and
will have a fundraiser for me.
My family and friends are also helping out. I am so lucky
to have such support. I have also decided to go to my Mom's in Florida
for the winter. My Raynaud's is really bad in the cold, so this should
help. Maybe it will prevent the ulcers from coming back.Who knows?
My friend, Kristine, made my day when she called and told
me that Tim McGraw was coming back to Connecticut. We have been seeing
him for the last three years. So far I have seen him four times and I do
not want to miss him. I will be leaving for Florida two days after the
concert. I will fly to Tampa where my mom will pick me up. My friends,
Tammy, Laura and Jen will drive my vehicle down. What great friends I
have!
On August 11, 2003, I went to see Dr. Korn. Another
physician asked me about what had happened to me. I explained what had
happened in the last few weeks, what medications I am currently on, you
know, all the fun stuff. So far my ulcers are at a standstill, not
getting better but also not getting worse. My blood pressure remains
stable. I explained to Dr. Korn that I would be going to Florida for the
winter to stay with my mom who is also a registered nurse, as is my Aunt
Susan. He told me that he would give me a doctor's name, just in case
anything happens, which was thoughtful of him to do that for me.
I do have to realize that I will be dealing with
scleroderma for the rest of my life and I do want to make the best of
it. I have hopes and dreams for myself and I have the determination to
keep on going and fighting for it all.
Cindy |
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copyright 2003 Amie Yaussy Return to Diffuse page |
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