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2 days ago · Breaking the Silence and Stigma of Mental Illness

Struggling and on the brink of suicide, Mark Markham turned to an expert team of mental health professionals at Mayo Clinic to help him regain his footing. With their guidance and care, Mark has been able to find his way back to a fulfilling life of purpose.

Struggling and on the brink of suicide, Mark Markham turned to an expert team of mental health professionals at Mayo Clinic to help him regain his footing. With their guidance and care, Mark has been able to find his way back to a fulfilling life of purpose.




Editor’s
note: It wasn’t that long ago that Mark Markham found himself with little will
to live. Mark, a medical administrative assistant in Mayo Clinic’s Department
of Neurosurgery, sought help from the Department of Psychiatry and Psychology
at Mayo Clinic in Rochester. He credits the compassionate staff at Mayo, the
power of mindfulness and meditation, and the unwavering support of friends,
family and co-workers for where he is today: thriving in a life he loves. Mark
shares his story here in his own words.


By Mark
Markham

I am a 34-year-old who suffers with anxiety, obsessive-compulsive disorder and panic disorder. But I am not just that. I also am a 34-year-old who is a creative musician, a husband, a father to the cutest Yorkie you could ever meet (Dolce), a devoted staff member in Neurosurgery at Mayo Clinic in Rochester, a compassionate and kind friend, and an individual who finds joy and laughter daily.

This story is about dealing with a mental illness and still thriving with a job and life I passionately and deeply love and care about. I do this with the help of Mayo Clinic as an institution, its staff, my friends, family, and most importantly, Generose (Department of Psychiatry and Psychology).

My
need to share this story comes from a place of strength, compassion, honesty,
and care for self and others like me. I feel like I — and we — need to take
steps to break the silence on what people think of mental illness and suicide.

The worst part of the disease for me is the panic attacks. It’s like being choked, having your heart protrude out of your chest as if you had just run five marathons at what feels like 10,000 beats per minute. You can’t catch your breath. But at the same time, you are breathing faster than you ever thought you could. You start to shake. You begin to have chest pains. You start to sweat. You start feeling dizzy like you are going to pass out. And you begin to feel like you are floating out of your body — looking down at your body from the sky wondering, “Why? Why me?”

Everyone around you thinks you look great as you have a mask secured to your face — a mask that smiles and hides the truth, one that has been there for years. But inside is a tangled web of blackness, the unknown and impending doom. Some days, you wash, rinse and repeat these symptoms times 10. That’s what brought me to my breaking point: suicide.

It’s
a word that through societal beliefs and teachings brings shame and disgrace.
But until you get to that point of helplessness and hopelessness, you have no
idea you would have even stated the word in your head — and truly meant it.

“Mental illness has a funny way of pinning you against yourself.”

Mark Markham

I
had to find help. And I did, at Generose.

My
primary care provider recommended the Transitions Program, a three-week
intensive therapy program offered as an outpatient at Mayo Clinic’s Generose
Building. I called my supervisor, scared and in tears, letting her know the
plan, all the time thinking that nothing could help.

The
next morning, my husband drove me in and walked me up. I was terrified as I
checked into Generose 2B, where I scored myself on the check-in sheet:

Rate
your wish to live: 0.

Rate
your wish to die: 5.

They
require us to do this daily to see the progress being made.

Then
I made my way to a roundtable of what should have been a black cloud of six
people and a licensed therapist in front. There was no black cloud. There, for
the first time in a long time, I could feel hope and the desire to get better.

That’s
where the magic began: being around like individuals who are all going through
something similar to you. Who all have felt suicidal or have attempted suicide.
All unique, strong, creative, compassionate, yet desperate individuals, with
care for each other.

The
piece that seemed to be missing from us all? Care for self.

Mental
illness has a funny way of pinning you against yourself. Telling you lies that
you are not worthy, that you do not belong, that you cannot do this, that you
are not strong enough to withstand this — not another day.

That’s
where the intense therapy with mindfulness begins to retrain the brain and the
neural pathways. Mindfulness is a way to slow the brain down and
to focus fully on the present moment — not focusing in on your to-do list for
tomorrow, not worried about that thing you “shouldn’t” have said
yesterday. It is simply living in the now. Easy, right?

Imagine you are driving yourself home from work. Do you remember the entire drive home? Likely not. It is likely you were focused on things you needed to do or things that happened earlier. The practice of mindfulness along with meditation is something I have been practicing now for months. I like to do it when I am not bothered by the outside world — out in my apple orchard, watching our chickens run around, looking at apple blossoms on our trees.

But
in times of a panic attack, it means simply counting something on the wall in
front of me.

“There
are five photos on this wall in front of me.” I nonjudgmentally describe
those photos.

“He
is wearing a black suit with a white-striped shirt and a red tie in the
photo.” “The frame is silver.” Doing this for even five minutes
can take me out of a panic attack. Slow. Things. Down.

Or
for someone who doesn’t suffer panic attacks, even higher-than-normal anxiety
could be an instance where you try this practice.

“A life of passion came back to me through the support of my Mayo family.”

Mark Markham

There
are many other skills and tools Generose teaches, but mindfulness and
meditation were by far my favorite — so much so that I created my own song and video to be used by anyone who may need
it.

There
are so many more things I learned from the caregivers at Generose — so many
more examples of care and compassion, understanding and resiliency training
that the team there brought to me.

The
Department of Neurosurgery where I work was integral in getting me back on my
feet, as well. I could not have done it without them. The second week into the
program I received a letter from our department chair wishing me well and
telling me that everyone has my back. My operations manager sat with me,
caringly, to discuss what he could do to help. My supervisor made it extremely
easy for me to complete the family medical leave of absence and short-term
disability process, and continues to sit with me one-on-one to make sure
everything is running smoothly, and that I have all the help and resources I
need to make it through each and every day.

I
have truly felt embraced, cared for and supported by Mayo Clinic.

With
the support of Generose and Mayo Clinic, I have been able to accomplish things
in life I did not think possible. I have put on an education course through my
department twice. I chaired and assisted a fundraiser for the Neuro Hospitality House. I sang the national anthem at a
Rochester Honkers baseball game this summer. I work out daily. And I continue
to write music and enjoy photography. A life of passion came back to me through
the support of my Mayo family.

This
certainly isn’t a fairy tale or about “look at how great I am doing,”
and it doesn’t end with puppy dogs, rainbows, glitter and ice cream. Each day
is a struggle, and for those of us that deal with mental health issues, you
know there isn’t a magic pill. But with the right therapy, medications as
prescribed by a physician, and exploring mindfulness and meditation, I have
found that you can live a fulfilled life — even with painful moments.

I
know that mental illness is a forever thing. But for right now, it is in the
back seat.

As
an amazing psychologist told me at Generose, “Put your disease in the
backseat of the bus, and you drive.”

Rate
your wish to live: 5.

Rate
your wish to die: 0.

Note: If you or a loved one is
thinking about suicide, get help.
In the U.S., call the National
Suicide Prevention Lifeline
at 800-273-TALK (800-273-8255) to reach a trained counselor.
Use that same number and press “1” to reach the
Veterans
Crisis Line
. Or seek emergency medical care by calling 911.


HELPFUL LINKS

4 days ago · Surviving Aortic Dissection and Navigating Its Aftermath

Surviving an aortic dissection is a tale not all patients live to tell. For Eric Salter, living through the traumatic experience was nothing short of miraculous. What's been even more remarkable to the 45-year-old, though, is the life-changing care he's received from his Mayo Clinic cardiologists who are committed to helping him live a long life.

Surviving an aortic dissection is a tale not all patients live to tell. For Eric Salter, living through the traumatic experience was nothing short of miraculous. What’s been even more remarkable to the 45-year-old, though, is the life-changing care he’s received from his Mayo Clinic cardiologists who are committed to helping him live a long life.




Eric Salter was a 42-year-old runner in the prime of his life when in May 2017, on his daughter’s 11th birthday, he suffered a life-threatening aortic dissection while sitting at the desk in his home office.

During an aortic dissection, the inner layer of the aorta — the major blood vessel that takes oxygenated blood to the body — tears, causing the inner and middle layers to become separated. For Eric, the dissection resulted in emergency surgery at a medical center near his Florida home. The surgeon repaired Eric’s damaged aorta and replaced his bicuspid aortic valve with a mechanical valve. After 13 days in the hospital, Eric went home.

At that point, Eric was told his aorta was fixed, and that was the end of the story. In reality, it was just the beginning of a medical voyage that continues to this day. Eric’s journey led him to the office of Sabrina Phillips, M.D., a cardiologist at Mayo Clinic in Florida and eventually to the operating room of Alberto Pochettino, M.D., a cardiovascular surgeon at Mayo Clinic in Rochester. Eric’s Mayo Clinic team has guided him through years of monitoring his dissected aorta and provided surgical treatment that corrected the initial repair. Moreover, Eric’s team has established a plan of action to deal with future issues as they arise.

“On May 10, 2017,
I was told I had an aortic dissection and would have to be flown by helicopter
to another hospital,” Eric says. “I had just eight minutes to say goodbye
to my wife and record a message to my two daughters. I prayed the entire time
in the helicopter: ‘Lord Jesus, please just give me one more day. I don’t want
to die on my daughter’s birthday.’ I only asked for one more day, and I’m
blessed with a lot more than that. I’m not completely back to normal, but I can
do just about anything I want to do and have a lot to be thankful for. It
usually doesn’t turn out that way for patients like me.”

A persistent problem

For people who
experience aortic dissection, simply surviving the event is a triumph. Nearly
18% of those who sustain aortic dissection die before arriving at the hospital,
and 21% die within 24 hours if they don’t have surgery.

So when patients
undergo successful surgery to repair the initial dissection, it is not uncommon
for the surgeons to declare victory, Dr. Pochettino says. “Aortic
dissection is a life-threatening issue up front. Just to get the patients to
survive is a success, even though often the aorta is not a normal aorta.”

What Eric did not
understand following his first surgery was that, although the operation tackled
the immediate problem by fixing the dissected portions of his aorta closest to
the heart, it didn’t address the fact that his aorta was dissected beyond the
area of repair. And his doctors at the time of surgery didn’t clarify that the condition
required regular follow-up imaging.

“I was being told the problem is fixed, and to go enjoy my life and not worry about it.”

Eric Salter

“I did have a
follow-up plan, but the follow-up I was given didn’t seem to line up with the follow-up
plans of other dissection patients that I had met,” says Eric, who joined
a support group for aortic dissection survivors. “What they were doing
seemed completely different from what I was being advised. I remember telling
my wife, Madelen, that I don’t really belong in that group. I was being told
the problem is fixed, and to go enjoy my life and not worry about it.”

Learning that other survivors were on alternate treatment paths compelled Eric to seek a second opinion at Mayo Clinic in the Department of Cardiovascular Medicine. “When we first met, Eric was taken back when I asked him when was his last CT scan since the surgery,” Dr. Phillips says. “He hadn’t had one.”

When urgent repairs
are done, typically only the part of the aorta that comes out of the heart to
the aortic arch is repaired. The lower part of the aorta leading toward the
abdomen, the descending aorta, is left alone. Eric needed to be checked to see
if his descending aorta had torn or changed.

The CT scan ordered
by Dr. Phillips found that Eric’s dissection was by no means fixed. “After
the scan, I met with Dr. Phillips,” Eric says. “That’s when I first
found out I had a remaining dissection.”

Dr. Phillips put Eric on a three-month schedule of follow-up CT scans to monitor his aorta. For more than a year, the scans came back unchanged. But in October 2018, a scan revealed a pseudo aneurysm, which is a pocket of vascular tissue that forms in some, but not all, of the layers of the aortic wall. Six months later, in April, another CT scan revealed a new pseudo aneurysm, and it had grown significantly. At that point, Eric was fast-tracked for surgery.

When surgery was recommended,
many thoughts went through Eric’s mind. “One of my first thoughts was, ‘Should
I get a second opinion?’ Dr. Phillips listened and said I could get a second
opinion. But the person I needed to see was at Mayo Rochester, and I needed to
move quickly,” Eric says. “It was comforting to know Dr. Pochettino had
been following my progress since my first visit to the Mayo Clinic in
Jacksonville, even though he was on the other side of the country.”

A crucial surgery

Just days after being recommended for surgery, Eric and Madelen said goodbye to their two daughters and boarded a Minnesota-bound plane. At Mayo Clinic in Rochester, the Salters met Dr. Pochettino, who detailed Eric’s condition and the proposed surgical repair.

“He sat with us
and explained to us what it really meant, not only to have this aortic
dissection, but what it means to have different types of dissection,”
Madelen says. “Those were some of the conversations we were having with
Dr. Pochettino that we were never able to have with anyone else. Eric is able
to take better care of himself being educated.”

After that
conversation, Eric decided to move forward with the surgery. On April 23, the
day after meeting Dr. Pochettino, Eric’s damaged tissues were repaired during
an extensive 12-hour operation.

During Eric’s
surgery, Dr. Pochettino discovered that one of the reasons Eric’s aorta was
compromised was that the material used to strengthen the vascular connections during
the initial surgery had failed. “The material sometimes used to stop the
bleeding is glue,” Dr. Pochettino says. “The problem with glue is it
interacts with tissue and sometime causes necrosis, or tissue death. So the
glue is effective at stopping the bleeding up front. But in the long term, it
causes the tissue to become weaker, and a pseudo aneurysm may develop.”

During Eric’s
surgery, all of the previous reconstruction connected to the weakened tissue
was removed. It then was replaced with a new aortic root, which is the portion
closest to the heart involving the aortic valve and coronary artery opening,
ascending aorta and aortic arch.

Eric did extremely
well throughout the surgery, says Dr. Pochettino. “At the end of such a
long operation, his heart started working normally. The new valve is working
normally. The brain looked completely normal. We were able to complete the
operation with a good result.”

Eric’s initial few
days in the hospital after surgery were difficult, but his Mayo Clinic team was
receptive and responsive to his needs. After several days in the cardiac ICU,
Eric moved to a rehabilitation unit, where he continued to heal for another week
before being discharged from the hospital.

A fresh perspective

Three months after
surgery, Eric visited Dr. Phillips for a follow-up appointment and CT scan, and
he’ll have another scan in December. Regular follow-up appointments and CT
scans will continue to be essential for Eric’s cardiac health. “The key to
understanding this is that you have this life-threatening event, and you have
this repair, but you are not cured,” Dr. Phillips says.

Because Eric is only
45, it is likely that his dissection, which currently affects his descending
aorta, will grow as a result of the pressure of the blood continually flowing
through the weakened tissues. “We do know that expansion occurs quite frequently
in younger patients and can necessitate another more serious surgery to take
care of it if it does occur,” Dr. Philips says.

“Plain and simple, my decision to get a second opinion at the Mayo Clinic in Jacksonville saved my life.”

Eric Salter

Living with the
possibility that Eric will require more surgery is a heavy weight to bear, Eric
and Madelen say. “Sometimes Eric has a hard day and sometimes I have a
hard day,” Madelen says. “But we know we at least have a place where
Eric has been, and we have two sets of confidences in his care there.”

From his perspective,
Eric says his journey has filled him with gratitude and a drive to push for
answers to questions even when they seem unknowable.

“I’ve only been
home for five months since the surgery, and almost every time I meet people
going through medical challenges, I end up saying, ‘You may want to go to Mayo
just to get a second opinion, even if you feel like you’re doing OK, and you
don’t feel like you need one,'” Eric says. “Plain and simple, my
decision to get a second opinion at the Mayo Clinic in Jacksonville saved my
life. The postoperative care and follow-up plan I’ve received from Mayo Clinic
has extended my life and allowed me to spend many more days with my family. “


HELPFUL
LINKS

6 days ago · Expert Care and Compassion Move Cary Hill Beyond a Second Brain Aneurysm

Having already lived through the effects of one ruptured brain aneurysm, Cary Hill knew she couldn't risk it happening again when scans showed that another aneurysm had grown on her brain. So she came to Mayo Clinic for a second opinion — and a second chance.

Having already lived through the effects of one ruptured brain aneurysm, Cary Hill knew she couldn’t risk it happening again when scans showed that another aneurysm had grown on her brain. So she came to Mayo Clinic for a second opinion — and a second chance.




The first words Giuseppe Lanzino, M.D., said to Cary Hill were exactly what she needed to hear. “He said: ‘Tell me why you want to come to Mayo Clinic. Tell me why you want to see me,'” Cary says of her initial phone conversation with the Mayo Clinic neurosurgeon. “He didn’t say, ‘I’m a neurosurgeon at this big, important hospital, and this is what we need to do.’ He asked me why I wanted to see him, which was the absolute best way for him to start a relationship with me as a new patient.”

Weathering a scary ordeal

Cary
told Dr. Lanzino all about how the headaches she’d started getting a decade
before had become so debilitating so quickly that she no longer was able to
work or function as a wife and mother. She told him about how she had to fight
with her care providers in North Carolina to get them to explore other reasons
for her head pain instead of simply writing it off as migraines.

She
told him about how, even after additional testing finally showed the true cause
of her head pain to be a 10-millimeter brain
aneurysm
behind her left eye, local providers continued to
show no urgency in her care. Cary finally persuaded them to surgically
clip
the
aneurysm in December 2009. And she told him about how just four days after that
procedure that was supposed to render the aneurysm harmless, it ruptured.

When she recovered from the rupture, Cary spent 12 long months in bed, trapped within the throes of a deep depression that had come with no longer being able to do the things she once did at work and at home due to the lingering cognitive effects the ruptured aneurysm had on her brain.

“Having gone through one ruptured aneurysm already, the stress and anxiety that came with watching and waiting became unmanageable.”

Cary Hill

Cary also told Dr. Lanzino about the new waves of fear and anxiety she was feeling after test results showed a second aneurysm had grown on her brain, and about how her local care team had once again shown no immediate concern.

“They
wanted to take the same watch-and-wait approach as before,” Cary says. “Having
gone through one ruptured aneurysm already, the stress and anxiety that came
with watching and waiting became unmanageable. It drove me right back into bed
for another 2½ months. I lost 25 pounds. I couldn’t drive my car because I was
afraid that if this second aneurysm also ruptured, I was going to hurt someone
else. I didn’t want to be alone. It had crushed every ounce of spirit I had left.”

Dr.
Lanzino listened carefully. When she was done with her story, he assured Cary
he would take a close look at her records and call her back with his
recommendation. “He called me two days later,” she says. “And he
said: ‘Based on your history and your age, we need to terminate this new
aneurysm. When are you coming here?'”

Cary
was thrilled.

“I
was elated because I had hope again,” she says. “Someone was finally
being proactive with my care. That was so great because I know my body and my
mind could not have handled another ruptured aneurysm.”

Moving from words to action

During her first appointment at Mayo Clinic in Rochester, Cary’s hope and her rapport with Dr. Lanzino continued to grow. “Dr. Lanzino and his resident, Megan Kaszuba, M.D., shook my hand and said, ‘What questions do you have for us?’ So I gave them my questions, and once again made them well aware of the anxiety and stress that had led me to them and where it was all coming from,” Cary says.

Two days later, inside an operating room at Mayo Clinic Hospital — Rochester, Saint Marys Campus, as Dr. Lanzino and his surgical team were preparing to take the source of that anxiety and stress away, they took time to provide Cary with reassurance and comfort.

“The amount of care, awareness and compassion I was shown at Mayo Clinic was impeccable and beyond compare.”

Cary Hill

“As
the anesthesiologist came over to put the mask on my face, everybody in the
room stopped what they were doing and came to both sides of my operating table,”
Cary says. “Some were touching my arm; others were touching my leg. Somebody
was holding my hand. I know I had tears running down my face, but they weren’t
tears of fear. They were tears of, ‘I’m in the right place.’ These people saw
me. They heard me. They felt my fear. They knew where it was coming from, and
they were going to do everything they could to make it right.”

For
Dr. Lanzino, it was the same approach to care he and his team takes with every
patient. “Our philosophy is that we treat every patient who trusts us with
their care like one of our own family members,” Dr. Lanzino says. “So
that’s what we do. It’s as simple as that.”

When
she woke up after surgery, Cary was in an ICU. But when a CT scan showed all
was well, she was moved out of intensive care. From there, Cary says her
recovery could not have gone better. “I was up and walking around the
entire floor with my nurses later that same day,” she says. “Compared
to last time, I couldn’t walk after my first surgery, and my care team in North
Carolina never reviewed a scan to make sure everything was OK after surgery. The
amount of care, awareness and compassion I was shown at Mayo Clinic was
impeccable and beyond compare.”

Thriving in a life renewed

Despite her positive experience, due to the post-traumatic stress that Cary was still feeling from the treatment of her first aneurysm, she was reluctant to believe her medical ordeal was finally over. Dr. Lanzino sensed that, too.

“When
he came in and said everything had been occluded and that I was now medically
OK, he also said, ‘But I understand if you’re not ready to leave yet,'”
Cary says. “So I stayed in the hospital for one more day. He came back to
see me that next day and kept reiterating: ‘Medically, you are OK. I promise
you, you’re OK.'”

That’s
because, even though it had been a somewhat tricky procedure, Dr. Lanzino was
certain the surgery had been a success. “Her surgery was a little
challenging not only because of the location and shape of her aneurysm, but
also because of her previous surgery that had naturally created some degree of
scarring,” he says. “But she did very well, and she’s been completely
fine since leaving Mayo Clinic.”

Six
months later, Cary continues to do well, and she’s doing all she can to make up
for lost time. “Since I’ve been home, I have my life back,” she says.
“I can drive my car again. I can go to the grocery store. I’ve gone on
vacations with friends. I’ve bought myself a new car, and I have another beach
vacation scheduled soon.”

“The whole hospital is just amazing and exudes such hope and compassion.”

Cary Hill

Cary
credits her Mayo team for that dramatic improvement. “Before coming to
Mayo, I was so defeated and deflated by the thought of going through all of
this again,” she says. “My previous care providers just weren’t
listening to me, but all of that changed once I got to Mayo Clinic. The whole
hospital is just amazing and exudes such hope and compassion. I really cannot
wait to go back and hug Dr. Lanzino again because I have so much love and
respect for him.”

Until
then, Cary will continue living her life to the fullest. She’s also taking time
to tell others what it took to get there. “After coming to Mayo, I started
sharing my story with other brain injury survivors through presentations and my
public YouTube channel, in hopes of helping them with their own struggles,”
she says. “I want people to know it’s OK to advocate for yourself, to ask
for a second opinion and to chase your own hope. Whatever you do, do not give
up. If you’re facing something terminal or life-threatening, fight for your
life. Fight for hope.”

Note: You can hear more
about Cary’s story on her
YouTube channel.


HELPFUL LINKS

Fri, Oct 11 5:00am · A Long Road Through Infertility to Parenthood

Seth, Brielle and Lacey Berning. Lacey Berning dreamed of having a little girl. What she never imagined, however, was that the journey to that child would be wrought with delays and heartache. But Lacey never gave up hope, and with support from a team of Mayo Clinic infertility specialists, she and her husband finally realized their dream of becoming parents. Photo courtesy of Melissa Zamzow.
Photo courtesy of Melissa Zamzow.

Lacey Berning dreamed of having a little girl. What she never imagined, however, was that the journey to that child would be wrought with delays and heartache. But Lacey never gave up hope, and with support from a team of Mayo Clinic infertility specialists, she and her husband finally realized their dream of becoming parents.




Like
most mothers, Lacey Berning has a pregnancy story filled with happiness,
transformation and new life. But Lacey’s journey to having her baby also
involved loss, sickness and lots of needles.

For Lacey and her husband, Seth, however, the waiting, worry and needlesticks — a necessary component of the in vitro fertilization (IVF) process they went through to become pregnant — along with the extreme nausea and vomiting Lacey experienced while pregnant, fade away when they look at their daughter, Brielle.

“My
pregnancy was awful. I was really sick,” Lacey says. “I was going in
for fluids every three days at the hospital, and I lost 15 pounds before the
third trimester. But it’s one of those things where I just kept thinking how
lucky I was and just couldn’t complain about being sick because it was a
miracle I was pregnant.”

The
odds of Lacey and Seth conceiving naturally were minute because both of them
had fertility issues. Even using IVF, the couple had less than a 50-50 chance
of achieving a live birth. But Lacey, who always dreamed of having a daughter,
had to give it a shot. “I knew I could never live with myself if we didn’t
try,” she says.

She and Seth are forever glad that they did. With the support of a Mayo Clinic team from the Division of Reproductive Endocrinology and Infertility that included Zaraq Khan, M.B.B.S, and Elizabeth Stewart, M.D., the couple achieved pregnancy following one cycle of egg stimulation, retrieval and embryo transfer. On July 5, 2018, Brielle was born.

Now
Lacey is happy to share her family’s story with others. “You always hear
about the bad stories where patients leave unsatisfied,” she says. “I
thought if I could give some positivity, even if I change one person’s mind,
and they get the miracle of having kids, then it’s totally worth it.”

Frustration, elation and anguish

When
they decided they wanted to have a baby, Lacey and Seth, who live in Eyota,
Minnesota, had no idea that they might face infertility. But after a year of
trying to conceive, Lacey, who was 28 at the time, grew concerned that
something was wrong. She took those concerns to her Mayo Clinic primary care
physician.

Lacey’s doctor ordered a hormone test to measure her ovarian reserve. That test came back below normal. Lacey was directed to track her menstrual cycle to hone in on her most fertile time. For about a year, Lacey recorded her cycles while she and Seth kept trying. When that didn’t work, Lacey made an appointment in Mayo Clinic’s Division of Reproductive Endocrinology and Infertility. At the visit, Lacey was prescribed clomiphene — a medication that causes ovulation.

“The first month, nothing happened. The second month is when we got pregnant for the first time,” Lacey says. “We did an ultrasound early, and at six weeks, everything was good. We had another ultrasound at eight weeks, and they told us that once there is a heartbeat, the odds of losing a baby are a lot less, so we told our parents.”

An ultrasound at 10 weeks came back normal, as did one a week later. However, a day after that appointment, Lacey had a miscarriage at home. When they went to the hospital, Lacey and Seth were met by Cassandra Liss, a certified nurse-midwife in Mayo Clinic’s Department of Obstetrics and Gynecology.

“When
Cassie came in into the room, she looked at me,” Lacey says. “I will
never forget seeing her. With tears in her eyes, she said: ‘I know we will see
you again, and I know you will have a positive outcome. You just have to hang
in there.’ Those words are burned into my mind.”

Genetic testing revealed the fetus carried a chromosomal defect that would have resulted in an abbreviated life expectancy had the child survived pregnancy. In addition, test results showed it had been a partial molar pregnancy. That meant that Lacey’s placental tissue formed abnormally and couldn’t support the developing fetus.

“For young patients like Lacey, molar pregnancy is a difficult diagnosis because it jeopardizes a lot of timelines for getting pregnant.”

Zaraq Khan, M.B.B.S.

Women
who have molar or partial molar pregnancies require extremely close monitoring
and follow-up care because the condition can lead to a serious disorder known
as gestational trophoblastic disease in which abnormal placental cells in the
uterus develop into fast-growing tumors akin to cancer.

“For
young patients like Lacey, molar pregnancy is a difficult diagnosis because it
jeopardizes a lot of timelines for getting pregnant,” Dr. Khan says. “We
have to be more hands-on with monitoring to make sure their pregnancy hormone
levels come back to normal for a certain time period before we can start
talking about them trying again. For fertility patients, time is of the
essence. Telling them they have to wait for six months to a year can be devastating.”

Waiting, testing and success

Following
the miscarriage, Lacey went on birth control to prevent another pregnancy
because becoming pregnant at that point would cause abnormal placental tissue
to quickly multiply. Her pregnancy hormone levels initially were checked every
two weeks and then every month to monitor her levels.

“All
fertility care is very high-anxiety provoking,” Dr. Khan says. “But
for her, it was even more because she was just waiting out a condition where we
wanted to make sure she was healthy first before we could start talking about
pregnancy planning.”

In
November 2017, after eight months of monitoring, Lacey’s pregnancy hormone
levels were normal, and she was cleared to begin fertility treatment again. For
the couple, resuming their efforts to conceive meant a new round of testing — this
time for Seth. His tests reveal a below-normal sperm count. That result coupled
with Lacey’s low ovarian reserve led the couple’s medical team to suggest IVF.

“They
were in a unique situation where there was room for improvement on both sides,”
Dr. Khan says. “I talked to them about the best way of approaching this
appropriately and aggressively with IVF.”

The couple waited to begin the process until the following September. On their wedding anniversary, Lacey gave herself the first injection to begin stimulating her ovaries. The daily injections continued for 10 days. Then the day before her egg retrieval, Seth gave Lacey an intramuscular shot that prompted her ovaries to release the mature eggs.

Lacey’s
care team retrieved 13 eggs. Four of them survived fertilization and grew into
embryos. Her team monitored the embryos’ growth, and five days after retrieval,
one embryo was transferred into Lacey. “I remember Zaraq saying, ‘This is
the one that is going to be your baby,” Lacey says. “He was always
super optimistic. Both he and Dr. Stewart were really good to work with. “

Fourteen
days after the embryo transfer, Lacey took a home pregnancy test. “My
husband and I couldn’t decide who got to look at the pregnancy test first, so I
peed on two sticks and gave him one to look at. We counted down and looked at
the same time. They both said pregnant.”

Illness, infusions and wonder

At
Lacey’s first ultrasound a month later, the baby’s heartbeat was strong and
easy to find. “They told us we were due on the Fourth of July,” she
says. “Obviously, we were just stoked.”

Lacey
held on tight to that emotion through her pregnancy, the first two-thirds of
which required IV infusion therapy to manage relentless nausea, daily vomiting
and extreme dehydration. “Christmas morning, I was in getting fluids. New
Year’s morning, I was in getting fluids. It was rough, but (the infusions) were
a game-changer,” Lacey says.

“People tell you what a miracle having a kid is, and it’s just amazing how your heart triples in size the day they’re born.”

Lacey Berning

Lacey’s
extreme nausea subsided in her third trimester, and she gained back seven
pounds. In the days leading up to July 4, Lacey felt great. “The third of
July, I felt so good. I was like, ‘There is no way this baby is coming
tomorrow.”

At 5 a.m. the next day, Lacey woke up having contractions. Throughout the day, she kept herself busy while the contractions went from seven minutes apart to two, which is the point at which she was directed to go Mayo Clinic Hospital — Rochester, Methodist Campus. Lacey’s labor slowly progressed until early the morning of July 5, when she was finally ready to begin pushing. After just 15 minutes of hard labor, Brielle entered the world.

Brielle Berning. Photo courtesy of Melissa Zamzow.
Photo courtesy of Melissa Zamzow.

“People
tell you what a miracle having a kid is, and it’s just amazing how your heart triples
in size the day they’re born,” Lacey says. “I knew I would love my
kid, but you don’t realize how much.”

Their
child, Lacey says, is the light of her family’s life. “She is this little
girl who is so spoiled and loved. There’s just something special about having a
little girl. All her little boy cousins think she’s just the bees’ knees.”

Although
the couple has two more embryos frozen and will consider trying for a second
child in the future, simply having their daughter is a gift. “In a perfect
world, we would love to have one more,” Lacey says. “But I know that
if it doesn’t work out, I’m totally satisfied with our little miracle. I feel
lucky to have Brielle.”


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Thu, Oct 10 8:22am · Flashback: Transformative Gift Creates Mayo Clinic as It's Known Today

Tuesday, Oct. 8, marked the 100th anniversary of when Dr. Will and Hattie Mayo along with Dr. Charlie and Edith Mayo signed a deed of gift that transferred ownership of the land, buildings and equipment of the medical practice from the Mayo family to Mayo Clinic. They also donated the majority of their life savings.

Tuesday, Oct. 8, marked the 100th anniversary of when Dr. Will and Hattie Mayo along with Dr. Charlie and Edith Mayo signed a deed of gift that transferred ownership of the land, buildings and equipment of the medical practice from the Mayo family to Mayo Clinic. They also donated the majority of their life savings.


Philanthropy and sacrifice have long marked the legacy of the Mayo
family and their contributions to medical care.

As young boys, Will and Charlie Mayo witnessed their parents’ decision to mortgage the family home to purchase a microscope. Later, as internationally recognized surgeons, William J. Mayo, M.D., and Charles H. Mayo, M.D., transformed their private practice into a not-for-profit organization dedicated to excellence in patient care, research and education. This visionary act ensured that Mayo Clinic would grow and thrive long after the lifetime of its founders.

Tuesday,
Oct. 8, marked the 100th anniversary of when Dr. Will and Hattie Mayo along
with Dr. Charlie and Edith Mayo signed a deed of gift that transferred ownership
of the land, buildings and equipment of the medical practice from the Mayo
family to Mayo Clinic. They also donated the majority of their life savings.
This gift, about $10 million at the time, would be worth more than $100 million
today.

Making
the gift involved financial sacrifice not only for the Mayo brothers, but also
the entire family. Dr. Charlie’s son, Charles W. Mayo, M.D., wrote: “I’ve
realized many times since what a masterful piece of forethought is represented
by that agreement. It means that I and my children don’t own the clinic or any
part of it, so as a principal victim, I am in a good position to say how much I
admire it.”

More than a legal document

Far
more than a legal document, the deed of gift was a statement of the Mayo family’s
values.

In
1894, when Dr. Will Mayo was 33 and Dr. Charlie Mayo was 29 years old, they
made a solemn promise to live on about half their income and invest the rest in
a fund for humanitarian purposes, which they donated in the 1919 deed of gift.

“The fund which we had built up had come from the sick, and we believed that it ought to return to the sick in the form of advanced medical education, which would develop better-trained physicians, and to research to reduce the amount of sickness,” Dr. Will Mayo wrote.

“Our father recognized certain definite social obligations. He believed that the important thing in life is not to accomplish for one’s self alone, but for each to carry his share of collective responsibility.”

William J. Mayo, M.D.

“The
primary object of the clinic should be service to humanity in its broadest
sense, and not the material advancement or enrichment of the individual,” the
brothers wrote during a time when racial segregation was legal, and many types
of formal and informal discrimination flourished.

The
deed of gift stated that medical and surgical care of the highest level would
be available to “anyone without regard to financial status, race, color or
creed, all meeting on a common level.”

A shared responsibility

The
Mayo brothers had been preparing for this moment throughout their lives,
building on the influence of their parents. Dr. Will Mayo wrote of his father,
William Worrall Mayo, M.D.: “Our father recognized certain definite social
obligations. He believed that the important thing in life is not to accomplish
for one’s self alone, but for each to carry his share of collective
responsibility.”

The
careers of the Mayo brothers paralleled the industrialization of post-Civil War
America. Along with their early associate, Henry Plummer, M.D., and others, they applied
engineering principles and efficiencies to the practice of medicine.

As
a result, they became among the most successful doctors in the U.S. This was
the Gilded Age, when entrepreneurs made fortunes. Yet the Mayo brothers never
sought to create a personal empire. Instead, they considered themselves “moral
custodians of the people’s money.”

In other related steps over the next few years, the Mayos transferred authority for managing the clinic from the family to a Board of Governors and a committee system of decision-making by consensus. They established a Board of Trustees, including members who are external to Mayo Clinic, as the ultimate governing body. Staff members were put on salary. Financial proceeds of the practice, along with benefactor gifts, investment returns and revenue from commercial activities, were reinvested in the mission of Mayo Clinic. Despite vast changes in medicine, this philosophical and corporate structure has served Mayo Clinic well for a century.

The
Mayo brothers received honors and awards throughout the world. Yet they
considered the perpetuation of patient care, education and research “the
crowning endeavor of a life in medicine.”


HELPFUL LINKS

Wed, Oct 9 5:00am · Happy to Give Back to Mayo Clinic After Battling Rare Autoimmune Disease

Erin Ayub spent months in a medically induced coma as her Mayo Clinic care team worked to fight off a rare and dangerous form of encephalitis. Today, Erin has made a remarkable recovery, and now as a Mayo staff member, she's eagerly working to help further the mission of the health care organization that saved her life.

Erin Ayub spent months in a medically induced coma as her Mayo Clinic care team worked to fight off a rare and dangerous form of encephalitis. Today, Erin has made a remarkable recovery, and now as a Mayo staff member, she’s eagerly working to help further the mission of the health care organization that saved her life.




From the outside looking in, Erin Ayub, an administrative assistant at Mayo Clinic in Arizona, appears to be a healthy 29-year-old woman. To see her now, no one would guess that she once spent months in the hospital battling through a rare autoimmune disease.

For a time, it wasn’t clear if Erin would survive. But with the expert care of her Mayo Clinic team, she did. Now Erin is giving back to the place that saved her life eight years ago.

Puzzling symptoms

In 2011, Erin was a college senior working
toward her bachelor’s degree in business administration with a concentration in
computer information systems. She lived in El Paso, Texas, with her parents and
brother. In her free time, Erin led an active life as a musician and kickboxer.
She also enjoyed cosplay — performance art that involves dressing up as a
character from a movie, book, television show or video game.

While on a family vacation that year, Erin
began to feel nauseated, and she started acting differently. She woke up
earlier than usual, experienced brain fog and continued to battle bouts of
nausea. Erin’s symptoms continued for several months. Then her health declined
further during finals weeks when she went to take an exam and struggled to fill
in the first blank.

“I couldn’t remember how to write my name,”
Erin says. “I knew my name. But to actually write it? I couldn’t.”

“I vaguely have a memory of being in a stretcher, leaving my house with flashing red and blue lights. That’s the last thing I remember.”

Erin Ayub

Her mother, Liz, thought Erin’s symptoms could be due to stress during finals season. But the oddities continued when Erin walked around the house and turned lights on and off without cause. Liz describes it as “a zombie state.” Then one December night, when her mother was helping her to bed, Erin began to have seizures.

“I vaguely have a memory of being in a
stretcher, leaving my house with flashing red and blue lights,” Erin says.
“That’s the last thing I remember.”

Erin was rushed to a nearby hospital, where
her condition puzzled doctors. Erin continued to experience seizures throughout
her time there, flatlining during one of them. After that, doctors put Erin in
a medically induced coma and recommended sending her to Mayo
Clinic.

Rare condition identified

Erin was airlifted to Mayo Clinic Hospital in Arizona while on life support. When she arrived, her care team ran tests and diagnosed her with a rare autoimmune neurologic disease that affects the brain called anti-NMDA (N-methyl-d-aspartate) receptor encephalitis.

Over the course of this disease, the body
attacks NMDA receptors with antibodies. “The NMDA
receptor is a receptor on the brain that we use for neurotransmitters,”
explains Matthew
Hoerth, M.D.
, a Mayo Clinic neurologist and a member
of Erin’s care team. “If you’re attacking that transmitter specifically,
you’re not able to process information from one cell to the next, and that can
lead to seizures and cognitive disturbances.”

Erin’s diagnosis came on the heels of the
disease’s initial discovery, and little is known about the condition even
today. At the time of Erin’s diagnosis, few case
series had been published about it. Erin says she was estimated to be the 600th
patient diagnosed. Dr. Hoerth
says this number is fairly low only because doctors are discovering the
anti-NMDA antibodies now. He says there is a possibility that more patients have
the disease but have gone undiagnosed.

For her first several months at Mayo, Erin
remained in a coma, and she had nonstop seizures. During that time, her care
team did everything in its power to save her life. Erin was given several
immunosuppressant medications to prevent her immune system from creating more anti-NMDA
antibodies. She also had an ovary resection. In an attempt to ease her
seizures, Erin was put on a strict ketogenic
diet
that cut out all carbohydrates, even those
in her shampoo.

“It was highly
specialized,” Liz says. “The team met every day to determine what
type of medication changes were done because they had to adjust her feeding
based on the medication.”

The hope was that if ketones fueled Erin’s
brain instead of glucose, the seizures would stop. Whether the treatment worked
is difficult for doctors to determine, but Erin stopped seizing as often.

“You have a couple of choices. Either you fall apart or you pull together. And we were lucky that we pulled together.”

Liz Ayub

Finally putting a name to her daughter’s
condition was a relief for Liz, but Erin’s situation was serious. Several
times, doctors prepared her family to expect the worst. They refused to give up,
however, and banded together in unwavering support for Erin. During her
daughter’s hospital stay, Liz lived in Phoenix with Erin full time. Erin’s
father, a professor at El Paso Community College, took a bus to Phoenix every
weekend and headed back in time to teach during the week. Erin’s younger
brother, an incoming college freshman at the time, held down the fort in El
Paso. Dr. Hoerth credits Erin’s recovery in part to her supportive family.

“You
have a couple of choices,” Liz says. “Either you fall apart or you
pull together. And we were lucky that we pulled together.”

It wasn’t only her immediate family who
rallied around Erin. Mayo Clinic staff also gave her their full support. “I
consider so many people there family, not caregivers,” Liz says.

The road to recovery

With treatment keeping her seizures under
control, Erin’s team felt comfortable bringing her out of the medically induced
coma. When she woke up, Erin recalls that it felt like she had taken a long nap.
In reality, she had been in a coma for eight months, and she needed to relearn
how to do everything from eating to speaking.

“When I woke up, I had
to start from scratch,” she says. “It’s like being a toddler all over
again.”

Having a passion for writing and being an
avid reader, Erin quickly recovered her reading and writing skills,
communicating with her family through a whiteboard. When she was discharged
from the hospital, Erin continued outpatient rehabilitation
for a few months at a skilled nursing facility in Phoenix, where she received
speech, physical and occupational therapy.

“Erin, even though she didn’t realize it at the time, is a fighter. This is a remarkable recovery. This does not happen often.”

Matthew Hoerth, M.D.

Erin
then returned to Mayo, where she had surgery for a back ulcer and entered the
acute rehabilitation program. In
the program, Erin worked on her mobility, first using a wheelchair and then a
walker after a month. After that, she spent another year undergoing
outpatient rehabilitation at a neuro-rehabilitation facility in El Paso.

“Erin, even though she
didn’t realize it at the time, is a fighter,” Dr. Hoerth says. “This is
a remarkable recovery. This does not happen often.”

At the end of 2013, Erin decided it was time to go back to school. Her mother suggested trying one class a semester, but Erin finished the seven remaining classes for her major in just two semesters. Not only did she finish all her classes, Erin went on to earn master’s degree in English and creative writing. She also picked up kickboxing and cosplaying again, and she’s received awards for her cosplaying in competitions.

And back to Mayo

In El Paso, Erin searched for a job after
working at a local humane society, but nothing stuck out to her. With her Mayo
experience still fresh in her mind, Erin found an opportunity as an
administrative assistant at Mayo Clinic in Arizona. She sent in an application
and received a job offer several weeks later.

The thought of moving away from home was
daunting. But as Erin reflected on the care she received, she knew Mayo Clinic
would take care of her again. Although in her new job she doesn’t work with
patients directly, Erin knows her work makes a difference.

“I schedule for a couple
of administrators, and it’s kind of giving back, even though it’s indirect,”
Erin says. “If I make their jobs easier, then they can help make their
team’s job easier, and that trickles down. This has become a bit of a second
home as much as I was here.”

For
Liz, Erin’s job is a reminder of how far her daughter has come. “When Erin
got the opportunity to work for Mayo, she was thrilled about it,” Liz
says. “I just thought: ‘We’ve come full circle. Hopefully there’s something
positive there — something she can do to pay back what Mayo did for us.'”

Watch
this video to learn more about Erin’s story:


HELPFUL LINKS

Mon, Oct 7 5:00am · Freed From Debilitating Inflammatory Bowel Disease

Marissa Russo has been battling symptoms of inflammatory bowel disease for half her life. When a flare-up that lasted several months had her confined to bed and barely able to function, she turned to the expertise of Mayo Clinic for a new approach to treatment.

Marissa Russo has been battling symptoms of inflammatory bowel disease for half her life. When a flare-up that lasted several months had her confined to bed and barely able to function, she turned to the expertise of Mayo Clinic for a new approach to treatment.




Fitness, nutrition and health are incredibly important to Marissa Russo. She’s been doing CrossFit for the past six years and is used to exercising five times a week. And Marissa has maintained that pace despite dealing with the symptoms of inflammatory bowel disease for nearly 20 years.

For a time, however, as her medical condition spiraled downward, Marissa’s ability to continue her active ways appeared to be in jeopardy. Then she turned to Mayo Clinic, where she found help from Michael Picco, M.D., Ph.D., chair of Gastroenterology and Hepatology and a specialist in inflammatory bowel disease at Mayo Clinic in Florida.

“Dr.
Picco and his team are the Cadillac of GI services. They do what it takes to
get you whatever tests you need,” Marissa says. “They are very quick
to respond, and they’re advocates for you. They make you feel like you’re their
number one priority from start to finish.”

Disturbing decline

Inflammatory bowel disease is an umbrella term that describes incurable disorders that involve chronic inflammation of the digestive tract. Ulcerative colitis and Crohn’s disease are the two main types. Marissa began experiencing symptoms of inflammatory bowel disease when she was in her early 20s.

“It all started when I was
about 22 years old,” Marissa says. “I couldn’t keep any weight on. Every
time I would eat something, I felt like I had to use the restroom immediately.”

When she started noticing blood in her stool, Marissa went to a gastroenterologist who diagnosed her with Crohn’s disease and began treatment by prescribing Marissa anti-inflammatory drugs, including corticosteroids and sulfasalazine. The medications, which she took for 10 years, improved her symptoms. But when she was approaching her 38th birthday, Marissa’s condition took a turn for the worse.

“My
symptoms were becoming more frequent and harder to put into remission,” Marissa
says. “I went from taking the drugs for two weeks to having to be on them
for four to six weeks. I would go six months without being able to get my
flare-ups under control.”

“(The bowel spasms) felt like birthing contractions, and I would literally see stars because I was in so much pain.”

Marissa Russo

Her
local doctor prescribed different medications. But none of them put Marissa’s
condition into remission, and they had significant side effects, including
severe nausea that made it hard for her to do her day-to-day activities.

Then
when she turned 39, Marissa began to experience the worst flare-up she’d ever
had. It started in November 2017 and lasted through February 2018. During that time,
Marissa was having 16 bowel movements a day.

“I
was passing blood coupled with tissue during my bowel movements. I also had severe
cramping from bowel spasms every 20 minutes,” Marissa says. “They
felt like birthing contractions, and I would literally see stars because I was
in so much pain.”

Too
weak to drive her two kids to school, Marissa had to enlist help from
neighbors, family and friends. Frustrated and in hopes of finding a solution,
Marissa did some research and tried home remedies. They helped somewhat, but
she remained in considerable pain. Marissa and her husband decided it was time
to get another medical opinion.

“My
doctor at the time wasn’t listening to me,” Marissa says. “So my
husband said, ‘We’re getting you to Mayo Clinic.'”

Promising treatment

Marissa
had a consult with Dr. Picco at Mayo
Clinic in Florida on Feb. 15, 2018. That appointment followed two weeks
of excruciating pain during which she lost 20 pounds.

“By
the end of 14 days, I went from looking healthy to looking emaciated,”
Marissa says. “The first thing that went through my mind was, ‘Am I going
to live through this?’ I thought there was a chance that I wasn’t going to make
it, and I was losing hope.”

To get a better understanding of Marissa’s condition, Dr. Picco ordered a colonoscopy. “There’s no one test to distinguish between ulcerative colitis, which involves only the colon, and Crohn’s, which can involve either the colon or both the colon and small intestine,” Dr. Picco says. “The colonoscopy showed that Mrs. Russo had a pattern of inflammation in the large intestine which made it difficult to determine if she had ulcerative colitis or Crohn’s disease. If it’s not absolutely clear, we treat the patient with medications that are effective for both.”

“It seemed like once (Dr. Picco) found out what was really going on, he immediately had a solution.”

Marissa Russo

Dr. Picco recommended Marissa undergo treatment with the medication infliximab, which is used to treat ulcerative colitis and Crohn’s. It involves three IV infusions over six weeks. Then if that is effective, the medication is given every eight weeks.

“I
felt so relieved to have an answer and feel like there was going to be a
solution to my problem,” Marissa says.

Dr.
Picco explained that Marissa would need to continue the medication as long as
it was well-tolerated and effective, and that at some point, it could stop
working because some people eventually develop antibodies to the drug. If that
happens, a higher dose, a shorter time between treatment or both can help
maintain the medication’s effectiveness.

Marissa’s
interactions with Dr. Picco kindled new optimism in her. “He listened. He
allowed my husband to share his concerns, and he explained things in a way that
we could understand,” Marissa says. “It seemed like once he found out
what was really going on, he immediately had a solution. He told me, ‘You will
get better.’ That’s all I needed to hear.”

Achieving remission

Marissa
began the treatment with infliximab the following week, and she saw immediate
results. “I went from having 20 to 30 spasms a day to having four to five
the day after the first infusion. A week later, I had no more spasms or blood
or tissue in my stool. It was a wonder drug,” Marissa says. “For the
first time in a long time, I felt like I was actually living.”

Marissa
continued to see Dr. Picco for follow-up appointments every two weeks for the
first six weeks of her treatment and then every four weeks for the following
two months. Results from a six-month follow-up colonoscopy in August 2018
showed there was little to no inflammation in Marissa’s digestive tract.

“For the first time in a long time, I felt like I was actually living.”

Marissa Russo

Around
that time, her husband, a Navy pilot, received orders to go to Japan. But
because of Marissa’s illness, they were denied medical clearance to go
overseas. “Dr. Picco wrote up additional information about my treatment,
and how he was a proponent for my family to go to Japan if the treatment could
be continued,” Marissa says. “We appealed, and were approved to go to
Japan in October.”

Marissa
and her family have been in Japan since January, and her medical condition has
remained stable. “I’ve been on this treatment for a year and a half, and
it’s still working for me,” Marissa says. “My hope is that it will
keep me in remission through next summer when my husband’s overseas tour ends.”

Relishing family life

In
addition to allowing her the freedom to travel, the treatment has made it
possible for Marissa to go back to the gym and return to her CrossFit routine.

“In
March 2018 I could no longer do a pullup. I couldn’t jump more than three
inches off the ground,” Marissa says. “In about 60 days from the start
of my infusions, I had 75% of my original strength. That was a pretty quick
turnaround.”

She’s also now able to do many of the things for and with her children that she was too weak to do because of her illness. “I’m most grateful that I’m able to function for my kids — that I’m able to be a mom the way I was before the flare-up,” Marissa says. “It’s wonderful to be able to lead our normal life as a family, which involves fitness and travel.”

For
Dr. Picco, helping people like Marissa who have inflammatory bowel disease live
the way they want to is the goal of the expert care he and his team provide. “We
offer the ability to have one place for care,” he says. “We do tests
to determine if treatment or medications need to be modified. And we’re well-versed
in all the medications and how to maximize their effectiveness. This is a very
complex disease that requires very specialized care, including appropriate management,
monitoring and follow-up.”


HELPFUL
LINKS

Fri, Oct 4 5:00am · Pedaling His Way to a Successful Heart Transplant

Told he needed a heart transplant to stay alive, Greg Williams could have simply sat back and waited. Instead, he chose to take ownership of his health by exercising in his hospital room at Mayo Clinic right up until the day of his transplant in hopes of preparing his body and mind as best he could for what was to come.

Told he needed a heart transplant to stay alive, Greg Williams could have simply sat back and waited. Instead, he chose to take ownership of his health by exercising in his hospital room at Mayo Clinic right up until the day of his transplant in hopes of preparing his body and mind as best he could for what was to come.




Greg Williams was faced with a choice. Cardiologists at Mayo Clinic in Rochester had told Greg the rare disease amyloidosis that had brought him into their care was progressing, and it would likely lead to life-threatening congestive heart failure within four years if he didn’t get a heart transplant. Greg could either go home to Lauderdale, Minnesota, and leave what might have been the last years of his life to chance, or he could actively try to do something about it.

Greg
chose the latter.

“I
didn’t know whether I’d truly just have the four years left or whether a heart
transplant would become an option,” Greg says. “Either way, I wanted
to make the most out of the time I had. I researched everything I could
on congestive heart failure, heart transplantation and amyloidosis.
My mantra of sorts became: Chance favors the prepared mind, body and
spirit.”

In
addition to his research, Greg changed his diet and started exercising in hopes
of reversing his medical misfortune as much as he could. “I’d always been
pretty active,” he says. “I played Ultimate Frisbee for years. But after
my diagnosis, I also started lifting weights, swimming and riding 14 miles on
my Fat Tire bike three or four times a week.”

It was all in an effort to take more ownership of his health. “One thought that I had in my head through all of this was that I wanted to be a good team member for my care team at Mayo Clinic for whatever medical scenario it was that I was going to ultimately be involved in with them,” Greg says. “I wanted to be able to be directed and coached, while also being as knowledgeable as possible about what was coming because the more you know, the less anxiety and trepidation you have.”

Building sweat equity

Greg
maintained that mindset, along with a stringent exercise and diet routine, for
the next 2½ years while routinely checking in with his cardiologist, Alfredo
Clavell, M.D
., medical director of Mayo Clinic’s
heart transplant service in Rochester. “At one point, I was talking with
Dr. Clavell and some other cardiologists, and they said they thought I’d now be
a good candidate for a heart transplant,” Greg says. “They said while
a transplant wouldn’t cure my amyloidosis, it would definitely extend my life.”

Greg
celebrated this turn of events with more exercise and more visits to Mayo
Clinic. “I started having more and more consultations with Dr. Clavell,
and I also kept up with my training regimen to prepare myself for whatever was
coming down the road,” he says.

“Fortunately, my team of doctors was supportive of me continuing to work out and prepare myself as much as possible for the transplant.”

Greg Williams

Despite
his mental and physical preparation, however, Greg’s health continued to
decline. “I started down the road toward congestive heart failure again,”
he says. “But I still continued exercising and riding my bike as much as I
could.”

And he kept it up until Dr. Clavell called in March to let Greg know he’d officially been added to the national transplant waiting list. “I was then hospitalized in April as part of Mayo’s Heart Transplant Program,” he says. “Fortunately, my team of doctors was supportive of me continuing to work out and prepare myself as much as possible for the transplant.”

So supportive was Greg’s care team at Mayo Clinic Hospital — Rochester, Saint Marys Campus, that they not only encouraged him to continue exercising while he waited for a new heart, they helped him do it.

“After
being admitted to Saint Marys, I ordered a recumbent bike for my hospital room
from a department store in Rochester. But due to some technicalities, the bike
couldn’t be delivered to my hospital room. It had to be delivered to the front
door of the hospital,” Greg says. “My nurses took a cart down to the
front of the building and lifted the bike onto the cart and then brought it up
to my room. That’s how it started.”

Riding toward transplant

Before
Greg could begin using his new bike, however, his care team had to make sure his
failing heart was stable enough to handle the physical exertion.

“There
are levels of escalating care that we have available, so that we can keep transplant
patients sustained and going while they wait for a donor heart to become
available,” says Richard
Daly, M.D
., surgical director of Mayo Clinic’s heart and lung
transplant service in Rochester. “Initially, it’s pills, and then it
generally switches to an intravenous medication, and then the next level is
some kind of mechanical support. And there are a lot of different ways of
mechanically supporting the heart, all of which involve a pump of some kind.”

After
Greg’s body failed to respond positively to the first two levels of treatment,
the choice of what to do next was clear. “A balloon pump is
straightforward because it can be placed without an open surgery,” Dr.
Daly says. “It can be done with just a needle stick and then positioned in
the aorta to augment the work of the heart. For some patients, it makes a
really dramatic difference.”

Greg needed the balloon pump because he had developed a condition known as cardiogenic shock, in which the heart can’t pump enough blood to meet the body’s needs. “We’d exhausted all other treatment options before moving onto mechanical support for Greg,” Dr. Daly says. “Greg responded very well to the balloon pump. But even with the pump, he was still pretty sick.”

With
the balloon pump in place, Greg started riding as far as his body and his bike
would take him. “I was hospitalized for the entire month of May, and during
that month I rode 60 miles every day,” Greg says. “When I was diagnosed
with amyloidosis, I weighed 305 pounds. When I was first hospitalized at Mayo
Clinic in early May, I was down to 250 pounds. By the end of the month, I was
down to 207.”

New heart, same routine

Greg’s
daily rides inside his hospital room were about more than just weight loss,
though. “It was also about me not leaving responsibility totally in the
hands of my care team,” he says. “It was about being a willing and
active participant in my care.”

That
active participation continued to the day Greg received life-changing news. “On
May 21, 2019, my cardiac transplant team came in and said, ‘We think we have a
heart for you, and we’d like to get ready to go into surgery this afternoon,'”
Greg says. “I was of course filled with both nerves and excitement. So
immediately after they left, the first thing I did was to jump back on the bike
and ride another 35 miles right up until my cardiac nurse came back into my
room and told me it was time to get scrubbed up for surgery.”

When
Greg woke up in Mayo Clinic’s cardiac ICU a couple days later following the
transplant, the first thing he wanted to know was whether his recumbent bike
could join him and his new heart. “I felt fantastic, and I healed at an
accelerated rate due to my training regimen and the exercise I’d done in the
hospital,” he says. “I wanted that to continue.”

Dr.
Daly agreed, with one stipulation. “He said I could have the recumbent
bike in my cardiac ICU room with the understanding that I wasn’t going to be
riding the same 60 miles a day right away,” Greg says. “He said I
could tone it down to 20 miles a day, so I did that. I hopped on the bike and started
riding my 20 miles a day three days after my transplant. I felt great and was just
really in a good frame of mind post-transplant.”

He
felt so good that upon his discharge from the hospital, Greg decided to give
other transplant patients the same opportunity for exercise he had while
hospitalized. “I donated my recumbent bike to Mayo Clinic, and
specifically to the Gift
of Life Transplant House
in Rochester,” Greg says. “It’s
now there for other patients to use at any time.”

“I’m going to use (my new heart) to the best of my ability and live my new life for as long as I can.”

Greg Williams

Greg hopes that it will do for others what it did for him. “Since getting my new heart, I’ve been able to continue biking, swimming and lifting weights in Mayo’s Cardiac Rehab Program,” Greg says. “I’m just so humbled, grateful and thankful that there was a donor out there who gave me this opportunity. That’s really motivating me to make sure I’m taking care of myself and my new heart, and that it’s not being wasted. I’m going to use it to the best of my ability and live my new life for as long as I can.”

Greg
can do that, Dr. Daly says, thanks to the groundwork for success Greg laid
before the transplant. “I don’t know many people who would be as sick as
him and still work so hard every day to do some kind of exercise,” Dr.
Daly says. “For anyone of us to exercise daily takes such discipline and
effort. To do it when you feel terrible and get short of breath by just walking
across the room shows incredible effort on his part. Greg was an amazing
patient.”


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