This journey…

As some of you know, I (finally) graduated in August after 9 years in college.  And as some of you also know, for all of those years, I fought and fought to get ahead despite my many health challenges.  I had to take a year off after a car accident, another year off after my liver transplant, and semesters off for my subsequent abdominal surgeries.

I began college in 2005 pursuing my nursing degree at Kent State.  I excelled and felt like I had found my calling.  I can’t even describe how I felt when caring for my patients.  It gratified my soul so deeply knowing I was able to give back to people in need, encourage them, or help them through a hard time.  I earned high grades in a rough, competitive program and made friends with my instructors.  It sounds like the perfect story, right?

Well, I was still battling a life-threatening liver disease.  I could barely make it through an 8 hour clinical shift without feeling like my body was going to fall apart.  The work was very physical, and it set off my fibromyalgia and arthritis pain in the worst way imaginable.  The stress of a, well, high-stress program wore me thin.  24-7, I was either sleeping, studying, or in class/clinical, even in the summer.  My body suffered so much during these years, and I believe it sustained permanent damage from me not listening to it, but I was doing so well at my school work, thriving as I was being continuously challenged, and enjoying the patients so much.

Then came the tumor that randomly appeared on my liver. At the end of a very normal semester in nursing school, a routine CT scan showed it clearly.  The tumor was inoperable and in a location that made it untestable.  We were to proceed, assuming the worst: cancer.

I was quite literally told to put my entire life on hold and then fight for it.

I wasn’t ready for any of that or anything else that came that summer.  Who is?  No one is ever truly ready when these things happen.

God gave me so much peace during that summer – so dramatically noticeable that I will never be able to deny it.  However, all of the tests, the chemo… there was so much physical pain.

Then came the pinnacle of physical pain and the resumption of emotional and mental pain.  More like anguish.  The surgery caused the absolute worst pain – pain, after 18 years of liver disease, that I never even knew was possible.  I had to learn to eat again, walk again, go up stairs again.  Every muscle in my abdomen had been cut through, and I became quite skilled at protecting my excruciating abdomen where 50 staples once lived.   I had to learn to live with an even more fragile immune system than I had before.  The first 6 months, for these reasons and more, were torture.  If it weren’t for the outpouring of love and support from so many people and the knowledge that a young man died so I could live, I don’t know if I could have gotten through it.

After living like that for awhile, you are pretty much begging for life to go back to normal.  My doctors advised me to take one year off of school to completely recover, but I, Ms. Type A, was determined I was going to return to school for spring semester, 2011, barely 4.5 months after my surgery.

As I was told, I crashed and burned.  So that semester never really amounted to anything even though I tried.

Around that time, I saw my infectious disease doctor.  These doctors specialize in keeping transplant patients (who are immunocompromised) safe from any type of communicable (contagious/transmittable) illness and are highly trained in what they do.  My doctor told me, in no uncertain terms, that nursing school was not an option with my new immune system.  I began taking anti-rejection medications to prevent my body from rejecting my new organ, and as a result, the medications suppressed my immune system.  She told me I would catch anything my patients had and even basic illnesses could turn into “worst case scenarios” with my immune system.  (Which last month, we found to be true – blog post coming up soon.)  I had some acceptance issues so for the time being, she wrote a letter for me to be excused from seeing any patients with communicable illnesses.  Even without contagious patients, being in a hospital a couple days a week, I knew I was walking on thin ice.  Germs are everywhere in hospitals, and anyone working in one leaves covered in a multitude of bacteria.

I proceeded like this for awhile until I eventually was able to get to a point of acceptance and heed my doctor’s advice. It was a long, emotionally difficult process for me.

The end of my nursing career was more of a move out of desperation and the realization that I had ZERO options left.  I could not even begin to tell you the options I tried – I was like a crazy person looking into everything and consulting everyone I could trying to fit a square peg in a round hole.

Even if I could get through school, any job I took would require me being with sick patients.  If I wanted a job on a “not sick” unit such as case management, I would need 2 years of experience on a typical unit with sick patients.  I had literally exhausted all options when I, myself exhausted, heard about a newer college at Kent State – the College of Public Health.  The rest is history.

In an effort to publicize their growing online options, Kent State has been interviewing students with unique experiences who ended up being successful with online-only baccalaureate programs.  An employee interviewed me and wrote up an article, and it hit a major Cleveland news station today.  Go ahead and check it out to see how the story ended, or rather, continued.

I hope that my story first of all, provides someone with hope, that they, too, can overcome any struggle and end up successful and happy.  I don’t believe the “you can accomplish everything you put your mind to” myth.  What’s best for you is all that will work out. Each of us is incapable of doing certain things well, and perhaps this is God’s way of letting us find our true calling using our individual genuine gifts.  I believe we need to try our hardest and fight for what we want to achieve, but when that’s not possible and we have truly exhausted all options, we need to know when to stop and fight for a new dream, always believing a Higher Power is orchestrating something greater than we could ever know.

Secondly, I hope that this story honors my donor.   Someone lost their teenage son, and solely because of that tragedy, I’m alive to tell my story, his story.  It’s my highest honor.

None of this is without extreme gratitude and humility.  I have done none of this on my own but faced each day at a time and fought for my life, both literally and figuratively.  I owe every bit of this to God, my donor, my super supportive friends and family, my amazing transplant surgeon, Dr. Eghtesad, and world-class team of doctors at the Cleveland Clinic, the deans and instructors at the KSU College of Public Health, and the enormous support of the Student Accessibility Services on campus.

As seen on WKYC:

Amanda

Liver transplant patient completes Kent State degree

She completed almost three years of nursing school when doctors said it was time for a liver transplant.

AKRON, Ohio — Amanda Goodwin of Akron, Ohio, is no stranger to adversity. When she was 5 years old, she was diagnosed with a progressive liver disease that would eventually require a liver transplant.

In May 2010, she had completed almost three years of nursing school and was doing really well when doctors discovered a tumor and said it was time for a transplant.

“My doctors advised me to not move forward in nursing because I was so susceptible to possible infections due to an immunosuppressant drug I had to begin taking,” Goodwin explained. “That wasn’t easy to hear.”

Despite having to take nearly a year off to recuperate, Goodwin still wanted to finish a degree from Kent State University.

“So I was looking at my options, and I heard that Kent State’s College of Public Health offered a number of online options,” Goodwin said. “I thought that would be perfect for me because I was recovering and actually required two more abdominal surgeries. I couldn’t attend classes regularly, but I was still interested in pursuing a degree in healthcare. So I decided to transfer to a public health program at Kent State because it’s all online and if I needed help, campus was only 15 minutes away.”

Despite her health issues, Goodwin participated in a two-week intensive course in Geneva, Switzerland, in May 2013. Ken Slenkovich, assistant dean of Kent State’s College of Public Health, led the trip.

“During the trip to Geneva, I got to know Assistant Dean Slenkovich, and he was nothing but supportive though everything,” Goodwin said. “Throughout my time in the College of Public Health, everyone on his staff worked closely with me, even when I had health setbacks.”

Slenkovich was immediately impressed with Goodwin.

“The trip afforded me the time to spend with her, and I found her to be a delightful and bright young lady,” Slenkovich said. “She’s very passionate about public health and wants to apply her knowledge to help people.”

“I’m healthier now,” Goodwin said with a laugh. “And I’m happy to say I graduated last August.”

Goodwin, who graduated with a Bachelor of Science in Public Health with a concentration in health promotion and education, is enthusiastic when talking about taking classes online.

“I loved the public health online program,” Goodwin said. “I loved every class I took. I focused my studies on health education and promotion, and I really thrived. Everything was so organized. The notes were there, the videos were there, the links – everything.”

Given her occasionally uneven stamina during her recovery, Goodwin loved the ability to work on her classes on her own schedule.

“I was able to maintain my grades and do it on my time,” she said “I’m so glad I found that program because otherwise I don’t know what I would be doing right now.”

She also enjoyed getting to know other students in the online program.

“I interacted with lots of other online students,” Goodwin said. “It’s funny because I didn’t meet them in person until graduation.”

Goodwin is especially pleased that she can still work in the healthcare field.

“With my degree, I feel like I can help just as many people, if not more, than I would with a nursing degree,” Goodwin said. “It’s just that it would be in a different form. I can still help people.”

As for the future, Goodwin is busy planning her wedding this spring, and she’s optimistic about the future.

“I would love to work at Lifebanc, which is Northeast Ohio’s organ donation and procurement agency,” Goodwin said. “That would be my dream job. I may have an opportunity to complete a master’s degree, so that might be in my future.”

Kent State is a leader in the state and the nation in offering online courses and degrees. Since 2009, online enrollment at Kent State has grown 900 percent, and the number of online instructors at Kent State has grown from 86 to more than 600.

Kent State’s College of Public Health was established in 2009 to educate and train students to meet the current and projected shortage of public health professionals in Ohio and the nation. It is one of only two colleges of public health in Ohio and the first to offer a Bachelor of Science in Public Health. Its academic programs integrate theory and practice to equip graduates with the knowledge and skills to address the health challenges of the 21st century.

Photo credit: Stephanie Doyle

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How to Talk to a Doctor

I think this article, How to Talk to a Doctor, by the Cleveland Clinic, is so important. Our health and well-being can sometimes really depend on what our doctor pr practitioner tells us or does for us. With insurance and hospital regulations these days, your doctor likely only has 15 minutes with you before he or she is due to see the next patient. She is probably running late to begin with, so both of you feel rushed. Combine that other factors, and a visit to your doctor just may not end up living up to its potential. This article will help you understand ways to change that, and I think it is especially important for us transplant patients who face a complex myriad of issues and may not get to see our specialists very often.

Give the Gift of Life

In honor of April, Donate Life Month, I wrote a Letter to the Editor to the Akron Beacon Journal.  They published it on April 15, 2012.  It states:

Give the Gift of Life

As April is Donate Life month, I would like to thank the family that provided me with the greatest gift of all, the gift of life. Nineteen months ago, at age 23, I was given a new liver by an organ donor. Because of this generous gift, I have been able to return to nursing school, volunteer for Lifebanc (our area’s organ donation and procurement agency) and travel to Ireland to study health care.

I have truly learned the value of each day and have a new outlook on life. I am filled with joy and gratitude.

There is a critical organ shortage in Northeast Ohio and across the United States. My hope is that more people will join the Ohio Donor Registry at www.lifebanc.org or call 216-752-5433, 1-888-558-5433. Organ donation is the one unselfish gift that can save eight lives. My family is very grateful for the donor who saved mine, and I can now live a full, healthy life because of that single gift.

Amanda Goodwin

Munroe Falls

I hope that helped to raise a little bit of awareness of what one decision did for my life and has done for hundreds of thousands of other people’s lives as well.

Amanda

Organ donation, an opt-out policy?

Such an interesting article in USA Today…

A suburban New York City assemblyman whose daughter is a two-time kidney transplant recipient wants to flip New York’s organ-donation system on its head by presuming people are donors unless they indicate otherwise.  

Assemblyman Richard Brodsky’s proposal would require that people automatically be added to the state donor registry unless they opt out of being a donor when they get a driver’s license or state identification card. Other states, including Delaware and Pennsylvania, have made similar proposals, but none passed.

“What I’ve said to anybody, whether they like it or they don’t like it, we can’t sustain the current system,” said Brodsky, a Democrat from Greenburgh in New York’s Westchester County.

He and other advocates of the “presumed consent” donor system believe it could help increase organ and tissue donations.

“People are dying in New York this week because we have failed to create a system that maximizes the opportunities to keep them alive,” said Brodsky, whose daughter, Julianne “Willie” Brodsky, received her second transplant four years ago and has become an advocate for changing the system.

An April survey by the New York Alliance for Donation found 67% of state residents strongly support organ and tissue donation, yet 13% of the state’s residents 18 and older are on the Donate Life Registry, which allows individuals to give their legal consent to be an organ or tissue donor. Nationally, 37% of adults 18 and older are designated donors, according to a report card published in April by Donate Life America based on an online survey of 5,100 adults.

Nearly 9,600 people in New York and 107,991 across the country needed organ transplants as of June 18, Organ Procurement and Transplantation Network statistics show. Last year, there were 423 deceased organ donors in New York and 8,021 nationwide, the group said.

Brodsky said his bill to implement presumed consent, which is sponsored in the Senate by Manhattan Democrat Thomas Duane, has sparked a lot of interest, but he knows both individuals and religious groups have raised concerns.

Mary Ann Baily, a fellow of the Hastings Center, a bioethics research group in Garrison, N.Y., said it’s easy to see why presumed consent would not go over well with Americans at a time when many are pushing against government control on a variety of other issues.

“The problem is it’s quite easy not to even notice that box that says, ‘I don’t want to donate my organs,’ ” Baily said, referring to a driver’s license form. “You should only presume consent when it really is clear that everybody would consent if they thought about it.”

To get traction in this country, “it’s going to take one state to sort of jump out there and show that it works,” said Arthur Caplan, a bioethics professor at the University of Pennsylvania School of Medicine, who has been working on the issue since 1983.

Efforts elsewhere:

• Legislation proposed in the Illinois Senate this year is still in committee, but there is a chance it could be acted on before the session ends in January, said Lisa Sims, a spokeswoman for Republican Sen. Dale Risinger of Peoria, who proposed the bill.

• Legislation died in committee in the Pennsylvania General Assembly in 1993, said Christie Herrera, director of the American Legislative Exchange Council’s Health and Human Services Task Force. The council, a group of conservative state lawmakers, opposes presumed consent, she said.

• A presumed-consent bill didn’t get out of committee in the Texas Legislature in 2003, Herrera said. The same thing happened in the Delaware Legislature two years ago, she said.

Among the objections to presumed consent are a belief that physicians may not work as hard to save a potential organ or tissue donor and the government and health care systems would have too much power in a life or death situation.

“This legislation opens up the door to abuse via hastened death of vulnerable people and overriding of family concerns,” Jerome Higgins, chairman of the the Long Island Coalition for Life Inc., wrote in a memo to New York lawmakers. “The sick and disabled need to be protected, not exploited for their body parts.”

Physicians who conduct transplants “don’t hope for somebody to die to be a donor,” said Luca Cicalese, chairman and director of the Texas Transplant Center and surgery professor at the University of Texas Medical Branch.

“There is a system that is very careful in keeping things separate and avoiding conflicts of interest,” he said.

Other states with low donor-registration rates are Texas (an estimated 2%), South Carolina (9%) and New Hampshire (10%), the Donate Life America report found.

A number of European nations, including France, Austria and Spain, have a presumed-consent system in place, and they have seen an increase in organ availability, said Caplan, the bioethics professor.

Organ donation: an opt-out policy, USA Today, June 30, 2010, 3A by Cara Matthews