Blessed Assurance: Success Despite the Odds

by Jacquie Lewis-Kemp, Author & Health Coach for Living life with diabetes and organ transplants, rather than limiting life because of them.

Browsing Posts tagged Gift of Life

 

There are so many observances throughout the year that several of them happen simultaneously. However April’s pairing of National Minority Health Month and National Donate Life Month is not pure happenstance.

National Minority Health Month

African Americans and other ethnic minorities are plagued by a number of chronic illnesses that may not be an immediate threat to life itself; however neglect of these chronic and often preventable conditions can surely lead to an early death. Perhaps the biggest of these chronic illnesses that disproportionately plague African Americans is hypertension and diabetes. According to the National Institute of Health,

“The most common causes of kidney failure are diabetes and high blood pressure, together accounting for about 70 percent of new cases.”

That bears repeating, 70 percent of new cases of chronic kidney disease is caused by uncontrolled diabetes and hypertension—both controllable conditions. Controllable in large part by good decision making: diet and exercise, and medication prescribed by a doctor. And this brings us to the next April observance.

National Donate Life Month

National Donate Life Month promoted largely by the Gift of Life Foundation encourages people to make the decision to become organ donors, either living or at the time of death so that those waiting on the transplant list, can live. There are currently more than 110,000 people waiting for an organ transplant in the U.S. Millions of organs are wasted daily when people die without donating their organs. It is a simple process to sign up on the national organ donor registry: http://donatelife.net/register-now/

In the case of kidneys, while African Americans make up 12% of the population, we make up 32% of those on dialysis.

In April and beyond, join with me to make smart and healthy decisions to improve minority health, and please “Donate Life”—my brother Jeff (my kidney donor) and another individual (my pancreas donor)’s decisions to donate life are why I live today!

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Where medicine couldn’t go any

further, God stepped in to end the

 battle.

 

 

 

 

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After living with diabetes for 32 years of my life, I received a pancreas transplant. Doctors don’t routinely manage diabetes with a pancreas transplant, however because I also needed and received a kidney transplant, my transplant team’s full plan of treatment for my kidney failure was to do a follow-on pancreas transplant. The pancreas transplant would normalize my blood sugar and best protect my new kidney.

 

I was diagnosed with diabetes at the age of 7. And so I grew up as a normal active child, but quickly learned a diabetes routine that my parents created for me. I also grew up with a very remote and improbable goal of a cure for diabetes. My diabetes would likely be something that I would need to manage for the rest of my life.

 

It has been 10 years since my pancreas transplant and no, I’m not cured of diabetes. Instead I have diabetes treated with a pancreas transplant. “Diabetes treated with a pancreas transplant” because if anything were to happen to that pancreas, I would return to insulin injections and my body has endured 32 years of elevated blood sugars and insulin dependence.

 

Recently I was reminded of my body’s condition as it relates to diabetes. On my way to the airport for a health coaching network event, I noticed a familiar sight in my field of vision–a floater.  A floater is debris or possibly blood floating in the vitreous fluid of the eye. I was sure that I had a broken blood vessel bleeding into my eye.  I called my retina specialist’s office and they agreed to fit me in to have it checked out.  I missed my flight and went immediately to the retina specialist. At that point, they couldn’t even see the bleeder. So I continued my travel plans standby.

 

At my connection in Chicago, my vision had gotten worse. I could barely see the signs directing me to the gate to board my flight to Las Vegas. By the time of my presentation I couldn’t even see my slides on the projector screen. I knew the material so I winged it.

 

I was baffled and somewhat afraid because doctors assured me that my long term complications would freeze right where they were after the pancreas transplant. They wouldn’t reverse, but they wouldn’t get any worse.

 

At home I returned to the doctor and he was able to diagnose what happened. This bleeder was not a new blood vessel that had grown onto my retina, as in diabetic retinopathy. This was in fact an old blood vessel that had been treated 15 or more years ago with laser. Apparently in the normal aging process the vitreous fluid in the eye pulls away from the retina. When this occurred in my eye, it disturbed the blood vessel treated with laser, causing it to bleed again.

 

And so the treatment was to wait for my vitreous fluid to absorb the blood that was blocking and clouding my vision. Here’s a description of what this bleeder looked like:

Day 1

A black string hanging from the top of my eye that remained in   my field of vision wherever I looked

Day 2

Several black strings hanging from the top of my field of   vision.

Day 3

Fewer black strings hanging, but the rest of my vision was like   opening your eyes under lake water.

Day 4

Black strings were turning brown with smaller dots around it;   vision was like it was foggy outside.

Day 5

Very few brown strings remain, able to see computer, but felt   like there was soap scum on my eyeballs.

Day 6

A few brown strings at very top of my field of vision; other   vision very clear.

 

Amazing, they tell me that the eye is the fastest healing part of the body!

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My son celebrated a milestone birthday, 21. And in Michigan that means getting rid of the probationary portrait driver’s license for a regular landscape one. He made another adult decision while at the Secretary of State: He signed the registry to become an organ donor.

Like me, he too has seen both sides of organ donation. He witnessed his mother’s second chance at life, thanks to the generosity of his uncle and a complete stranger. He also understood his grandmother’s gift of life so that other families would be as fortunate as his.

Here is another story of a famous donor and the lives he saved.

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It’s not often that I get involved with my husband’s work. My husband is a funeral director and I have lost both of my parents. Empathizing with families who have lost loved ones, brings a familiar heaviness onto my heart–one that takes a long time to remove, and so I try not to become too involved in my husband’s work.

 

But when he has the honor to work with a family of a person who has donated the gift of life, as a two time organ recipient and member of a donor family myself, I can’t help but feel kinship. Whether or not I know anyone affected by the donated organs, I feel compelled to thank the family . . .  unofficially . . . on behalf of the lives that have been saved and enhanced . . .as a part of my unofficial transplant recipient family.

 

If you know anyone with an organ transplant, you notice a special glimmer in our eyes when we speak to one another.  We all have a special kinship. Not just those of us with kidney transplants, but livers, hearts, lungs, pancreases. We don’t discriminate among transplant recipients–even bone, blood, skin or tissue recipients are cousins of sorts.

 

As 2012 comes to a close, my husband received such an honor. I couldn’t help empathizing with the donor family and how courageous they were in giving the gift of life or carrying out the wishes of the donor to give the gift of life.  I also imagined the other story of the amazing gifts of life that were given to make 2013 a very special New Year.

 

Please share your gift of life story, whether as a donor family or organ or tissue recipient.

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Unexpected Blessings

In my chapter of Victorious Living for Women, I talk about how we can never predict exactly where our blessings will come from. In fact I detail how my difficult period of kidney failure and dialysis was, at that time, the worst thing that had ever happened to me. My kidney transplant after seven months of dialysis then became the reason I was eligible for a pancreas transplant. And what a pancreas transplant meant was that I no longer had to follow a diabetes regimen.

As I reflected back to the time of my diabetes diagnosis at the age of seven, I recall that my grandfather and pastor told me that we would just pray that [diabetes] away.  You can imagine how my parents felt about my grandfather instilling hope into their daughter that they were talking to physicians about how to prepare me for a lifetime of diabetes management. While both my parents were Christian, they didn’t want me to be confused and spend my life waiting for a miraculous cure one day.

I didn’t spend my life waiting for that cure, and instead pushed forward to live a normal life. It wasn’t until after my pancreas transplant that I reminded my grandmother of my grandfather [now deceased]’s prayer. Could it be that he did pray it away? Why do we think that when we pray, God is somehow on the clock? That He has a timeframe in which to answer our prayer. Not only does he have a timeframe, but a manner in which He should do it. “To pray my diabetes away”, somehow seemed to me and my parents for God to perform some miracle and I would somehow be cured. A simple prong on the head and diabetes would be gone!

Who would imagine that He would use physicians and technology and achieve essentially a cure?

It is with that realization that I am careful not to predict and plan where my acts of kindness go, because I never know where my blessings will come from. In other words, I don’t decide to do nice things for people that I expect a return of good fortune. The idea of paying it forward is not finding a trading partner or deciding who is worthy to receive your gift. It is passing on a gift to someone in need or deserving, without expecting anything in return.

I recently had such an opportunity. At a Writer’s Expo, a young woman, before performing a song told the story of her intent to relocate to Georgia in order to donate a kidney to a long time friend of hers. What’s the chance that I was in that room of authors–both fiction and nonfiction–to hear this story. I was in a place to tell my story and experiences of being a two-time organ transplant recipient to someone who really needed to understand the process. I was stunned, even paralyzed to listen to her. I knew immediately that God had placed me in that place to hear her story and provide information and guidance for this transplant procedure. I wasn’t even sure why I attended this Expo; it wasn’t necessarily an event that I thought I would sell many books. But I received a blessing beyond what selling several books could provide: The blessing of knowing that my story mattered.

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Register to become an organ donor online or at your local Secretary of State office.

Don’t take your organs with you . . .

heaven knows we need them here!

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I didn’t expect it–the smell. The extreme smell of disinfectant and bleach, the quiet coming and going of staff and patients. The dialysis center. I hadn’t been inside a dialysis center for nearly 11 years, when I was on peritoneal dialysis or PD as those of us in the “Kidney World” call it.  I agreed to participate in a study for the National Kidney Foundation as a peer mentor talking with dialysis patients.  I am a certified peer mentor, however this study required additional training and all through the training I was excited to participate.  The study’s hypothesis is something I believe in and feel strongly will be successful. Even though I am a peer mentor, much of my work promoting organ donation has been at speaking engagements, church functions and during book signings.  So I really hadn’t been back to a dialysis center until today.

I was glad that the social worker and National Kidney Foundation representative met with me in the conference room first. I needed a minute to collect myself. It is not that I was afraid or changed my mind about volunteering; I just didn’t anticipate the reaction of a negative déjà vu.

After our discussion about how the day would go, I gowned up to meet my patients.  I remember that when I was on dialysis, I was afraid of what would happen next . . . after dialysis.  And if I didn’t do anything today, I wanted the people that I met to know that there can be a successful life after dialysis. With that mantra, my nervousness about the bleach that I smelled turned into eagerness to meet new friends.

My afternoon was spent meeting very interesting people. Sometimes when we get caught up with disease, illness and chronic conditions, we forget about the interesting and complex lives that we live. I shared and they shared. I think we had a good day. I’ll be back in a couple weeks and look forward to building the relationships I created today. Although I’m the mentor presumably offering information and ways to make it successfully through dialysis, I feel like I’m the one who benefited from today’s activities.

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Christmastime is when most of us decorate our homes and invite family and friends over to overeat, laugh and catch up on what has been going on since the last time the group was together.  If you have lost a loved one it is also a time when we remember Christmases past and the fun times we shared.

When I lost my father he was just 52 years old and there was a list of people that I felt God could have taken instead of my father.  Each holiday felt like my shopping list was so short–even though there was only one name removed.  My father-in-law perhaps suffered the most. His birthday was the same day as my father’s. We’d have a birthday dinner for both of them and I would buy similar gifts in different colors–it was fun. But after my father died, I couldn’t bring myself to shop for September 23.

Finally I rationalized in my mind that I shouldn’t feel sorry for myself about having lost my father.  There were many women that I knew who would never know what it was like to have a father like mine.  The old saying that it is better to have loved and lost than never to have loved at all, is hard to grasp–AND SOMETHING YOU NEVER WANT TO HEAR RIGHT AFTER LOSING SOMEONE.  But in time, I got it.   The impact of my father’s love for me has lasted me and I believe will continue to last for the rest of my life. People (particularly my son) are probably so tired of hearing me say, “What my father used to say about that is . . .”

It’s a good thing that I learned that lesson before losing my mother.  By this time I had received the Gift of Life twice and survived the West Nile virus.  And so what brought me peace was that “things” were not my mother nor did they represent her. But the impact that she had on my life and the lives of so many others, is her legacy.

My brother and I were also fortunate in that  we were able to carry out her final wishes and that was to donate her organs to people who needed them. It is interesting that we did not discuss her wishes during or after our kidney transplant.  But we both knew growing up that both our parents wanted to donate their organs–it was something that they discussed with us as children.

We missed the opportunity when our father died, however we were able to oblige our mother.  Even though it wasn’t my organs that were donated, that we completed my mother’s wishes, felt like I was paying it forward.  One day I will ACTUALLY pay it forward since I am a registered organ donor.

Even though they are not likely to use my brother’s transplanted kidney in my body or my new pancreas, I don’t want to make a medical decision that I’m not qualified to make.  The way I figure it, let me donate the organs when I’m through with them and let the doctors decide who may be able to use them.

IF YOU HAVE RECEIVED AN ORGAN TRANSPLANT, REGISTER TO BECOME AN ORGAN DONOR AND PAY IT FORWARD!

 

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