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 STORIES
We've
started to collect stories from accross the country. Children, teenagers,
men and women, husbands, wives, sons and daughters all who share
one thing in common - Fibromuscular Dysplasia.
From
diagnosis to treatment, listen while several share their unique
tales of their experiences with this rare disease.
PLEASE NOTE: FMDSA is not responsible
for the accuracy of our patient stories nor any medical conclusions
contained therin. We are simply providing a vehicle for our members
to tell their stories in their own words.
Jordan
Diggs - age 9
She's
a giggly girl.
She
says she's funny too, knows a lot of jokes. But when you ask her
to tell one, she just giggles instead.
The giggle and a big, toothy smile cover up that Jordan Diggs, 9,
has been sick most of her life.
 She
has fibromuscular dysplasia. The Web site E-medicine.com defines
the condition as an “arterial disease of unknown etiology
typically affecting the medium and large arteries of young to middle-aged
women.”
The
condition is rare, according to Jordan's parents. It affects arteries
in different parts of the body. In Jordan's case, she has arteries
that look like a string of beads in her kidneys and in both her
small and large intestines.
If the
condition moves to the carotid artery, it can cause different kinds
of strokes. How serious is it? E-Medicine.com says in the United
States, the condition is found more frequently by autopsy than by
other means.
The bubbling of her blood vessels decreases blood flow throughout
the body and causes high blood pressure, which is how the condition
was discovered five years ago, when Jordan was 4.
Her
blood pressure hit 299/148 at that time. She was sent to Piedmont
Medical Center, but the Rock Hill hospital sent her home and told
her to come back if she didn't feel better the next day.
Jordan's
mother Emily said the family took Jordan to Dr. Sam Stone after
coming back, and he sent Jordan to Carolinas Medical Center.
Her
main problems now are focused on her intestinal arteries. She gets
nauseous and doesn't want to eat
or drink, so she suffers from dehydration frequently.
She
doesn't like to say how she feels when she's sick. She remembers
the gas and feeling “funny” when she was anesthetized
way back when. Emily Diggs remembers the emergency staff at CMC
having to give her daughter an intravenous drugs to get her blood
pressure down. Doctors were afraid the girl had had an aneurysm
until they took a look at her kidney veins.
Jordan
has had angioplasty a couple of times on her renal arteries, the
ones in her kidneys. She is young, and those arteries haven't fully
grown yet. The ones she has had worked on are just big enough to
allow the smallest “balloon” insertion to be put in
to open up the arteries.
She's
had balloon angioplasty done to one artery in her left kidney and
to two arteries in her right. She's got to wait until she's grown
up more to do other angioplasties on her intestinal arteries.
She
can go to school with her friends, but she often has problems when
she doesn't eat and drink enough. So she has been in and out of
the hospital all her short life. The condition can be life threatening.
She goes for routine exams every four to six months. It's been almost
a year since she was hospitalized for dehydration. She admits, with
a giggle, that she didn't have any problem eating or drinking last
week.
The
Make-A-Wish Foundation, an organization that grants the wishes of
children with life threatening medical conditions, accepted an application
from Jordan's family, signed off on by her specialist in Charlotte,
to grant Jordan's wish. She wanted to go to Disney World, her mother
said.
 She
got to do that, and more. The foundation paid for a week in Orlando,
where the entire family, Jordan, her father Bill, Emily and Jordan's
11-year-old brother Tyler, they took in all the attractions - Universal
Studios tour, Seaworld, GatorLand. Jordan got to meet her favorite
princess, Cinderella. It
was a special week. She didn't know if she was the only kid in her
school who got to go to Disney World for Spring Break, but Tyler
knew he was the only one in his class to go.
Jordan
hugs her kitten Chloé as she talks about her trip. Her
father “got scared” on the Dino-Putt golf course. “Who
knew the dinosaur would spit water?” Bill says. That
was the “most funniest” part of the trip, Jordan said.
They
went to the Animal Kingdom and Expedition Everest more than once
at Disney, all the while staying in a villa. Everything was paid
for by the foundation. Bill took “about a thousand”
pictures over the week. They
got away from some of the harsh realities of Jordan's conditions.
Bill
was just laid off from a warehouse company, but had an interview
Thursday. Emily has insurance at her job. Jordan does qualify for
Medicaid, so the medical expenses for all the doctor visits and
emergencies and prescriptions are paid for, after they met a $500
deductible and a $1,500 out-of-pocket equipment.She's
9, and she's taking two blood pressure pills. Two pills for her
stomach. Two pills for epilepsy, and a pill for attention deficit
hyperactivity disorder. She's a little girl on a lot of pills, waiting
to grow up big enough to get the surgery to open her arteries up.
The
Make-A-Wish Foundation gave them a week away from it. It's motto
says it tries to “enrich the human experience with hope, strength
and joy.” After
meeting SpongeBob, Micky and Minnie, Goofy and Pluto, Barney, Spider-Man,
etc., Jordan's smile showed her joy.
ANDREA
BETTONI
European
Adult Male Patient
 Hi,
my name is Andrea Bettoni, in spite of my name I’m a 33
male.
At
the age of 31 I suffered from a heart attack, during a morning
run.
Fortunately I was close to my parents’!
I
was immediately hospitalized and I was put 2 stent. No doctors
thought
that it could be suspected to have a heart attack at that young
age & with apparently excellent medical conditions (except
the fact that I was a smoker !!!).
Since
that I kept continuing have chest pain until I was hospitalized
again and put a third stent.
My
conditions, unfortunately, didn’t changed: being not convicted of the
reasons of my heart attack and the misdiagnoses of the doctors I
went to ( fortunately my oldest sister I a doc…. ), I underwent
a whole series of scans and tests.
I’ve
been visited by a haematologist that prescribed new blood tests,
I found out I suffer from a genetic mutation
called MTHFR 1298 – Homozygous.
I
kept on searching for the disease I was suffering, I wasn’t satisfied
& and most important, I wanted “my life” back.
Looking back now, I can say that that thought helped me the most.
I
had a coloured ecodoppler that revealed that I had a lots of
very
small
clothes in every artery; doctors tried to destroy them by giving
me aspirin but the clothes grew up until there was 90% occlusion
of the superior mesenteric and the internal left carotid: a biopsy
has been made on my right temporary artery & “finally” I
had the response: I was suffering of Fibromuscolar Dysplasia.
By
this time I can say that I’ve been lucky because the carotid
stenosis grew until 100% twice: I just suffered from some worst
headaches
with no other consequences.
Nowdays I’m pretty fine, I just have to take my pills everyday
and one ecodoppler a month : after all, I still consider myself
a lucky one, maybe just because I’m still here & can talk
about my “bad experience” hoping that it can be useful
for somebody else.
Mimi
Petersen
California Adult Female Patient
I remember
when I was a little girl how interested the doctors were always
with my abdomen. While doing a routine check-up they were always
commenting on my bruits. Being young I was very proud of these,
after all I was unique! As I became a teen I realized that perhaps
these bruits were not necessarily a good thing. Yet there was never
any testing just a lot of “hmmmmmmmmm”’s. By the
time I was 16 my blood pressure readings were beginning to be high.
Of course being still very young, I assumed if there was a problem
it would be addressed.
At 18 years old a medical facility outside of my HMO informed me
that I had hypertension and should address this with my primary
doctor(s). This was when I was “officially” diagnosed
with hypertension. No longer being given the “white coat”
diagnosis,
hypertension was now acknowledged. Unfortunately I was not given
any type of work up to determine the cause of my hypertension (although
I had bruits in my abdomen area). I was told to not smoke (which
I didn’t and still don’t), not to take birth control
pills (I went off the pill), and to be prepared that I could have
a stroke by the time I was 40. I am pleased to say that I am now
50 and have yet to have a stroke. But, with years of hypertension
behind me this is a true and great fear I have.
It
was now the norm for me to hear from every doctor visit “you
are to you young to have hypertension”. Yet still no arteriograms,
or further investigations. I gave birth to my first son at the
age
of 26. I had pre-eclampsia during delivery , with a bevy of doctors
in the delivery
room. I was very scared. I was told after that birth that I should
consider not having any more
children. Not yet being the assertive and inquisitive woman I am
today (and with out the
advent of the internet), I was not quite sure of the reasoning behind
that statement. So I forged ahead and had baby number two. As I
remember my B/P was rising and there was some concern during delivery,
but my second son came at rapid speed and the birth was far less
eventful than the first.
 When I was 28 years old, it was finally determined that I needed
an arteriogram to check my kidneys. At this point I was told that
I had an atrophied right kidney due to birth defect. I was put on
B/P meds at this age. Ten years later when I requested medical records
there was a notation of Renal Artery Stenosis.
The turning point in my medical care came at the age of 39. My B/P
was still high on two meds. If it had not been for a friend who
was a nurse and insisted that I pursue this, I might still not have
been diagnosed. I left the HMO that I had for 39 years. When I met
with my new internist for the
first time, he said my B/P was not acceptable for someone my age.
He asked me who was my nephrologist. I did not even know what
a nephrologist was. I was
immediately referred to one. Everything started moving fast from
that point. I had rennin samplings done on my “atrophied” kidney
and an arteriogram done on my other renal artery. It was at this
point that I was diagnosed with Fibromuscular Dysplasia. My understanding
is that
the FMD was what had caused my left kidney to atrophy as the
renal artery had become severely stenosed. It was emitting a high
amount of rennin (a nasty hormone that was increasing my B/P. Also
my right renal artery had
Fibromuscular Dysplasia. The suggestion was to embolize (coil around
the artery to render it lifeless) the left kidney to stop it from
producing the high amounts of rennin.
Also I was to have angioplastie on the right renal artery to open
it up for better blood flow.
By this time I was using the internet and trying to advocate for
my health. There was not much
available at this time (1999), like there is now, none the less
it was very helpful. I also had a
second opinion at UCSF before I went ahead with the embolization.
They agreed that it was in my best interest to stop that kidney
from preventing the rennin. I had both the embolization and
angioplastie done in 1999. Unfortunately years of hypertension are
not so easy to get under control. I was back in for another angioplastie
4 months later. Through the years I have had approximately a total
of 14 arteriograms/angioplasties . I have been on numerous B/P meds.
In 2006 my right renal artery appears open and clear. Yet my B/P
has remained high. A few doctors
suggested looking at the embolized kidney to see if it perhaps it
was still emitting rennin. It had
been noted that there was a collateral artery that was still feeding
this kidney and helping it barely
hang on. Turned out that kidney was emitting a significant amount
of rennin. I will be having a
laproscopic neprectomy in nine days to have it removed. I am hoping
that this will help to reduce
some of the hypertension I have had for years.
It is my hope that in sharing my story it will bring awareness to
this disease. I feel because of
the efforts of the Fibromuscular Dysplasia Society of America ,
that perhaps other children shall not
have to suffer a lifetime of hypertension due to lack of diagnosis.
Furthermore also having FMD in
my carotids, I think it is imperative to share with health care
providers that FMD has been recently
recognized by the National and American Stroke Associations as a
cause of stroke. Sometimes I
worry about all the medical care providers who are not aware of
this disease, yet I take great comfort
in knowing that I am spreading the word. As is the FMDSA.ORG and
many of my friends afflicted with FMD.
Mimi Petersen
Sebastopol, CA
Jodi Roth
Female Adult Patient
Hi, my name is
Jodi Roth. I am a 38 year old mother of two young daughters and
I have fibromuscular dyplasia of the renal arteries. My journey
with this disease began by accident in May 2004 while I was sitting
at my kitchen table having a medical exam for a life insurance policy.
The doctor took my blood pressure and it was extraordinarily high
so I followed up with my internist. My internist was quite surprised
how high my blood pressure was given that I am thin, in good physical
shape, eat pretty healthy and don't smoke or drink.
After several months of doctors visits, medication and many tests,
a local
Cardiologist heard a brui in my renal arteries and sent me for a
renal MRI. When he called me and asked that I come see him, I knew
the results were not good. Later that day he told me in person that
I had Fibromuscular Dysplasia in both renal arteries and that I
had an aneurysm on my left renal artery. My life flashed before
my eyes, and all I could think of was that I wouldn't see my young
daughters grow up. I was devastated.
Then, of course I started researching this disease and tried to
learn as much as possible about it as I could. I found the FMDSA
website which educated me a great deal about this disease and I
immediately became a member of FMDSA.
I went to an Interventional Radiologist for angioplasty on my right
renal artery and an attempt to cut off the aneurysm on the left
renal artery, but it was unsuccessful as the aneurysm was too close
to my kidney. I was then referred to Dr. Andrew Novick at the Cleveland
Clinic and in January 2005 underwent renal bypass surgery on my
left renal artery to remove the aneurysm. It was a long and difficult
recovery, but luckily it was without major complications and my
blood pressure went back down to the normal range.
I go for renal scans every 6 months and recently had an angioplasty
on my right renal artery which had re-narrowed. Physically I feel
great and I continue to exercise 3-4 times a week doing cardiovascular
activities and strength training, and I try to live a very healthy
lifestyle. I have a wonderful life with my husband and kids and
I keep an extremely positive attitude about this disease. It's not
going away, but as long as I am vigilant about getting scans and
seeing my Vascular Dr., it is very controllable. Like many other
FMD patients, I want to know how I got this disease, if my daughters
will be affected by this disease and how it may affect me and others
throughout the years. That is why I believe it is so important to
help raise awareness of this unusual disease and to continue to
support the FMDSA.
Lisa
Fettig 
My name is Lisa Fettig. I was diagnosed
with FMD in both renal arteries 3 years ago, when I was 34. I am
a dietitian in a dialysis clinic. We were checking everyone’s
blood pressure at work one day and discovered that mine was quite
high (180’s/90’s). It had always been normal in the
past. I considered myself to be quite healthy (normal weight, exercise
regularly, eat well, etc.). I didn’t have any symptoms. One
of the nephrologists that I work with said I probably had FMD. I
had never heard of it. She ordered all kinds of tests to rule out
other things, which all came back fine. The last thing was to do
the renal angiogram, which showed the classic string of beads appearance.
Angioplasty was done and my blood pressure came right down to normal.
I thought I was cured, but within a
week it started going back up and I started medication. Since I
was kind of trying to get pregnant, Labetalol was used. I hated
it because of the side effects, but it did keep my BP under reasonable
control. I suspect that I have carotid FMD, also, but it has never
been diagnosed. I had a carotid ultrasound, which was normal, but
I have had some of the symptoms (optic migraines, swooshing noise
in ears sometimes, etc.) of carotid FMD for the past 20 years.
 Last
Februrary, I found out I was pregnant (first child). I saw a high
risk OB, who told me I had a 50% chance of preeclampsia. I was scared
to death of that or a stroke. By March I had to stop the Labetalol
due to low blood pressure. My blood pressure stayed in the 110’s
– 130’s the entire pregnancy without any meds, which
was great. I walked almost everyday and continued lifting weights
and riding a bike a couple times a week throughout the pregnancy.
I gained 25 pounds or so.
My nephrologist did some basic labs
and a 24 hour urine early in the pregnancy for a baseline, but then
she went out on medical leave and I did not see a nephrologist the
rest of the pregnancy. Due to my age and BP history, the OB ordered
regular ultrasounds (I had 6 total) to make sure the baby was growing
appropriately. I also had to go for non-stress tests twice weekly
during my last trimester. That was a pain, but worth the sense of
security.
In October, 10 days early, I delivered
a healthy 7 pound baby girl. There were no
major complications during the delivery. Within a week of delivery
my BP started going back up and I went back on Labetalol, because
I was breastfeeding. When I stopped breastfeeding, I was able to
switch to an Ace-inhibitor, which controls my BP very well with
few side effects. The baby is now 5 months old and we’re both
doing great!
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