Categories
Medical

Replacing Body Parts

Hip scar

Pain, joint deterioration and hairline fractures in both hips dictated Robert’s use of crutches. For months, the morning sound of his crutches clip-clopping around the house substituted for my alarm clock, except for the inability to set the time for when I was ready to get up. But clearly it was time to schedule hip replacement surgery.

Although we lived in Rochester, New York, Robert scheduled surgery at the Cleveland Clinic in Ohio given their hip replacement expertise and dwarfism experience. But our gratitude for health insurance that covered out-of-state surgeries dissolved when my employer switched to an HMO health plan that favored in network surgery. Our prayers of desperation were answered favorably when the HMO agreed that going out-of-state was medically necessary.

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Robert prepared himself mentally for surgery by snorkeling at John Pennekamp Coral Reef State Park in Key Largo, Florida. Although immediately surrounded by a fearsome school of barracudas, he blew extra bubbles when they didn’t mistake him for a meal! Robert’s spirits were lifted when he found the 16-foot underwater statue, Christ of the Abyss, with Jesus’s arms reaching out to remind Robert of His presence.

In physical preparation, Robert donated two units of his own blood. He also shared a medical article on anesthesia and dwarfism and refused any anesthetic until the anesthesiologist assured him she had read the article. In spiritual preparation, I found strength in Scripture:

Some boast in chariots and
some in horses,
But we will boast in the name

of the LORD, our God.

Psalm 20:6-7

Twenty-four years ago today, God answered our prayers. Robert returned to his hospital room after the surgery high as a kite tanked up on three pints of blood and morphine. He repeatedly shared God’s blessing with the transporter and greeted me with enthusiasm.

On his way to his first physical therapy session, a disheveled, unshaven Robert asked me, “How do I look?” I answered, “Wonderful. You look better and better every day.” A single male nurse overheard the conversation and said, “Every man should have a wife like you.”

When the medical social worker was making discharge plans, she asked about arrangements for airlifting Robert from Cleveland to Rochester. She was dumbfounded to learn that our plan was for me to drive the 250 miles with Robert reclined on the back seat with pillows, a water bottle, and urinal. No problem. Robert’s 40 inches in length easily fit across the back seat, hospital staff helped him into the vehicle in Cleveland, and church friends helped him out in Rochester. These friends also set up bathroom accommodations—a handgrip, support rails, and a platform around the toilet so that his legs didn’t dangle.

Once Robert recovered from the shock of a two-week house arrest, he made good use of his computer working at home and doing our taxes online between therapy and nurse visits. We thanked God then and now as his prosthesis remains stable.

What is your experience with body part replacements?

This is a condensed version from chapter 15 in “Pass Me Your Shoes.” For a full account, go to https://angelamuirvanetten.com for several retail links to the book and subscribe to my weekly blog.

Categories
Disability pride Medical

Viewing History Through Prism of Current Events

March of Dimes Poster Boy

When checking out of the grocery store recently, I was asked if I’d like to add another $5 to my bill for the March of Dimes. I politely declined. I could afford it, but the organization offends my pro-life views.  Even my recollection of an archival picture of a very cute March of Dimes poster boy—my husband Robert at age 11—did not change my mind.

Indeed I almost skipped reading the “This Day In History” entry for January 3, 1938 when Franklin Delano Roosevelt (FDR) founded the March of Dimes. I’m so glad I went beyond the headline.

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I learned that FDR’s charitable concern came from his contracting poliomyelitis that paralyzed his legs 11 years before he became President. The March of Dimes began as an association of health scientists and volunteers funding physical rehabilitation and research for a polio vaccine. Paralysis disabled one out of 200 people infected and death was the end result for two to 10 of those who were paralyzed. Given the rapid pace of polio’s spread among children, the foundation could not raise money fast enough to keep pace with the contagion tagged as “the most feared disease of the 20th century.”

When the donations from wealthy benefactors did not meet the need, FDR appealed to the general public for funds. Despite a celebrity’s suggestion to send dimes to the President being said in jest, the public flooded the White House with 2,680,000 dimes and thousands of dollars in donations.

FDR died before Dr. Jonas Salk produced the first successful polio vaccine in 1955, but this March of Dimes funded research is an amazing accomplishment for FDR, Salk, and the organization. If I had only viewed the March of Dimes through the prism of their current pro-choice practices, I would have missed this historical nugget when the world is focused on COVID-19 vaccines. I would also have missed the changed perspective on how to publicly portray disability.

The presidential memorial commission won the debate on how to recognize FDR’s dependence on leg braces and a wheelchair for mobility. The 1997 Memorial opened with three FDR statues none of which revealed his disability. It deferred to FDR’s directive, and media acquiescence, to never photograph him in a wheelchair, walking, or being transferred from his car. As the President who led America out of the Depression and through World War II, he believed it was important to show strength.

This hiding of FDR’s disability was corrected on January 11, 2001 when a fourth statue was added. A life-sized statue shows FDR in his wheelchair at the Memorial entrance. It’s an accurate view of the man whose strength was in his leadership not his legs. One visitor teared when he saw a busload of children in wheelchairs entering the exhibit. They would see that disability doesn’t limit what people can accomplish and should not be hidden.  

What would you miss if you viewed history through the prism of current events?

For more of my writings, go to https://angelamuirvanetten.com where you can subscribe to my weekly blog and find several retail links to my book, “Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith.”

TRIVIA
Polio plagued America for 39 years from 1916 to 1955.
At age 39. FDR contracted the virus.
Salk tested the first successful polio vaccine at age 39.

Categories
Medical

Replace Resolutions with Decisions

Choice: one way or another
Image by Pete Linforth from Pixabay

Most New Year resolutions fall by the wayside by mid-January. So next year, why not break the cycle of failure and replace resolutions with decisions? Let’s think about December 31st in a new light and celebrate it as #MakeUpYourMindDay.

To narrow the scope, this post focuses on decisions that demand due diligence before signing a contract or making a medical decision. Remember, failure to be systematic can be hazardous to both health and safety!

People of faith will always preface every decision with prayer.

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Don’t worry about anything; instead, pray about everything.
Tell God what you need, and thank him for all he has done.”

Philippians 4:6, New Living Testament

Homework is not just for kids; it’s a fundamental step in any big decision. For example, those looking to buy an accessible vehicle in which to load a wheelchair or scooter need to gather facts on the many options—a van or a car, a lift or a ramp, hand controls or pedal extensions, new or pre-owned? Homework involves an evaluation of physical abilities, financial resources, and businesses specializing in vehicle modifications.

It’s good to talk to people who have walked the same road you’re on. Disability support groups and social media are great resources for finding people ready to share their experience. Three private and moderated Facebook groups come to mind—Dwarfism, Dwarfism Surgeries & Pain Management, and Meg’s Support Group for People with Disabilities. In the case of a doctor recommending a specific medication or surgery, ask group members for their opinion on the doctor, hospital, and medical plan of action. Find out if they were helped or harmed.

A wise man will hear and increase in learning,
And a man of understanding will acquire wise counsel
,”

Proverbs 1:5, New King James Version

For complex and difficult decisions, consultation with experts is critical. For example, when dealing with a physical and/or mental health condition that precludes working, the expertise of doctors, representatives, and/or lawyers is needed to navigate Social Security benefit applications and, if necessary, appeals.

A risk/benefit analysis is imperative when making decisions about surgery and medication. Make a list of the pros and cons based on your own assessment of side effects, pain, and mobility; medical advice; manufacturer warnings in patient literature; testimonials from past patients; and the likely outcome if the recommended treatment is declined. Fear is a factor, but should not push us away from beneficial treatment.

Once you’re hovering over a particular decision, sleep on it until you have peace of mind. Finally, after you’ve made a decision, don’t question whether it was the right one. Trust the process of allowing God to lead you to the right decision.

A man’s mind plans his way,
But the Lord directs his steps.”

Proverbs 16:9, Revised Standard Version.

Let’s make 2021 a time to make wise medical decisions for ourselves and be available to help those doing due diligence on their decisions.

For more of my writings, go to https://angelamuirvanetten.com where you can subscribe to my weekly blog and find several retail links to my book, “Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith.”

Categories
Medical

Thankful for Aortic Valve Replacement (AVR)

Walking with wires

Give thanks to the Lord, for He is good! ∞ 1 Chronicles 16:34a New Living Testament.

Who would have thought changing doctors would save me from congestive heart failure and death within a year? But I’m thankful that my new doctor noticed that my heart murmur was kind of loud and referred me to a cardiologist. Imagine my surprise, at age 59, when the cardiologist recommended aortic valve replacement (AVR) surgery. As a little person with many joint anomalies, I always anticipated the possibility of orthopedic surgery, but heart surgery never crossed my mind.

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After finding a medical team at Johns Hopkins hospital, I added a prayer team. I prayed as I did before Robert’s hip replacement surgeries. Some trust in chariots and some in horses, but we trust in the name of the LORD our God. ∞ Psalm 20:7 New International Version. I especially prayed for wisdom on whether to implant a mechanical or biologic aortic valve. I picked the mechanical valve which requires blood thinning medication, but lasts the rest of my life; the biologic valve requires no medication, but wears out and could require a reoperation for replacement in about ten years.

On February 19, 2013, I underwent AVR surgery to split open my breastbone, stop my heart, hook it up to a heart-lung machine, replace the damaged aortic valve, and restart my heart. Major surgery! While waiting in the OR queue, I read various Psalms instead of thinking about the surgical risks of bleeding, blood clots, irregular heart rhythm, infection, kidney problems, stroke, or death.

My anesthesiologist talked to me about the limited range of motion in my neck that would make intubation difficult. To avoid cutting off my airway with fatal consequences, she chose to intubate me while I was awake; this gave her accurate feedback on how I was tolerating the intubation tube. My surgeon, also challenged by my airway restriction, was unable to insert a camera to check for life-threatening air bubbles. Instead, he squeezed my heart with his hands to expel any hazardous bubbles.

Thank God I survived the surgery without complications. And the surgeon’s post-surgery concern—that I would forget instructions not to lift more than five pounds for six weeks and would be back in the OR to realign my rib cage—was resolved by Robert, my in-house rehabilitation engineer. Robert accommodated my daily living activities of accessing a chair, toilet, bed, or car without lifting my entire body-weight of 72 pounds.

Fast forward seven years—my electrocardiograms are boring and my echocardiograms are good.  This is not to say there are no challenges.  Achieving a therapeutic International Normalized Ratio (INR) is an ongoing struggle. Frequent nontherapeutic INR readings show my blood as too thin and susceptible to internal bleeding or too thick and prone to blood clots clogging the aortic valve. As a result, my medication dosage often needs adjusting and careful monitoring of my vitamin K intake is critical. But I thankfully accept lifestyle changes that come with life-saving surgery.

This blog post was first published in LPA Today (Fall 2020). It is a condensed version of a chapter in my book—Pass Me Your Shoes: A Couple with Dwarfism Navigates Life’s Detours with Love and Faith. Go to https://angelamuirvanetten.com for book retail links and subscribe to my weekly blog for automatic delivery of posts to your email inbox.