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 in Organ Transplant

From the Huffington Post:

Facebook Organ Donor Initiative

Prompts 100,000 Users To Select New

Option

 

By MIKE STOBBE 05/ 2/12 05:57 PM ET AP

ATLANTA — Thousands of Facebook users have signed up to be organ donors this week, thanks to a new feature on the social networking site that makes it easier to register.

The new option was announced Tuesday by Facebook CEO Mark Zuckerberg as a way to boost the number of potential organ donors. By the end of the day, 6,000 people had enrolled through 22 state registries, according to Donate Life America, which promotes donations and is working with Facebook. On a normal day, those states together see less than 400 sign up.

The response “dwarfs any past organ donation initiative,” said David Fleming, chief executive of Donate Life America, in a statement.

The Facebook feature allows users to share their decision to be an organ donor on the website. More than 100,000 did that by Tuesday night, according to Facebook, which is working with Fleming’s group to encourage Facebook users to also officially register as donors with their state.

A link on the site connects to online donor registries. At least 22,000 people had followed that link as of Wednesday afternoon. Information from 22 states indicates that a third or more of them filled out the form to register, said Donate Life America spokeswoman Aisha Michel.

California – where Facebook is headquartered – reported startling results. About 70 people register online as organ donors each day. But in the 24 hours after Zuckerberg’s announcement, about 3,900 signed up.

“We’re just thankful we have this opportunity to bring more people into the process,” said Bryan Stewart, a spokesman for OneLegacy, which coordinates transplants in the Los Angeles area.

“We’re looking forward to seeing how long this activity lasts, and at what level,” he added.

Facebook, a social network site founded in 2004, has 526 million daily users around the world. It was Facebook’s idea to add the option, after Zuckerberg took a personal interest in the issue, Michel said. The feature is available in the U.S. and the United Kingdom.

As with some personal information on Facebook, organ donor status can be kept private or shared publicly or only with friends.

More than 114,000 Americans are currently on waiting lists for transplants of kidneys, livers, hearts and other organs, according to United Network for Organ Sharing (UNOS), the organization that runs the nation’s transplant system. More than 6,600 died last year waiting for an organ.

According to UNOS, 43 percent of adults in the U.S. are registered as donors. Organs can only be used though under certain circumstances, such as when someone dies from a major head injury and a ventilator can keep the organs viable. Less than 1 percent of U.S. deaths annually are under such circumstances. And sometimes the opportunity is lost because family members didn’t know about the person’s wishes on organ donation.

The Facebook feature “is a unique opportunity for people to make their decision known,” UNOS Executive Director Walter Graham, said on a statement.

Most people register as organ donors when they get a driver’s licenses, but about 2 percent sign up through online registries. Both represent legal consent for adults. For children who want to be donors, parental consent is still required.

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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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Chronic diseases or conditions like diabetes, multiple sclerosis, hypoglycemia, asthma, kidney disease, hypertension, heart disease and transplant living all require a regimen that requires strict adherence. Not following these regimens or staying within the guidelines can cause serious problems, long term complications or even sudden death. Almost all of these conditions require a special diet or dietary restrictions.  Some of them can be controlled with diet alone. Others also require medicines and test procedures.

This can seem overwhelming for someone first diagnosed with a chronic illness, and it can continue if the patient doesn’t develop a regimen to accommodate the medicine schedule, the dietary restrictions and timing, and exercise requirements. The restrictions that a chronic condition requires can feel overwhelmingly restrictive, but consider the alternative. If a diabetic doesn’t develop a regimen to consistently take medication, follow a low glycemic diet with the prescribed carbohydrate restrictions and exercise as suggested, then blood sugars can dip too low and cause a severe hypoglycemic reaction resulting in loss of consciousness or even death. Other chronic conditions can result in similar serious conditions as well as sudden death.  This is why a regimen to prevent these severe reactions is important.

How do you manage diabetes? How do you eat an elephant? One bite at a time!

In other words, you break down what needs to happen and put it up against your usual daily schedule.

  1. 1. List the things that must be done for proper management of your condition. In the case of diabetes, you would list your dietary requirements and restrictions, your medicine doses and times, your test and exercise requirements/suggestions.

  2. 2. List your normal daily activities and job travel and/or timing requirements. For instance if you work 8am until 5pm, and you travel 10%  of the time, typically Tuesday through Friday.

  3. 3. Now blend the lists by figuring out what the breakfast requirements translate into as far as a meal; what you will eat for lunch (whether purchased at a restaurant or packed in a  brown bag lunch) and how you will complete dinner requirements. When you will test and if you will gets some midday exercise walking outside or to lunch.

  4. 4. You should also write down when you will test during these hours and at home.

  5. 5. Finally look over the list of requirements and make sure that you determine what supplies you need to make this regimen work. For instance, if carrying blood testing supplies and the machine is not convenient, then you might want to consider keeping an  extra set at work in a locker or in your desk. If that means keeping medicine at work as well, make sure to consider the storage requirements of the medication. For instance, insulin doesn’t need to be refrigerated; however it shouldn’t be kept in direct sunlight either.

  6. 6. Schedule time for exercise so that it is not an afterthought that is not done regularly.

The key is to make sure that what your condition requires, you make available and convenient so that it is easy to be compliant to your doctor’s orders.

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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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Kidney Transplant

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Kidney Transplant

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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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Kidney Transplant

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On our parents' balcony before Jacquie's wedding

I can hardly believe that it has been 11 years.  Eleven years since my little brother donated his left kidney to me so that I might live.  In eleven years you would think that I would be pretty used to saying that, but it still brings the same tears to my eyes just writing it.

You know Jeff has never known a big sister without diabetes–taking a shot is what she did everyday, a couple times a day.  But slowing down because of illness is not what he was used to either and I think that is why he stepped up to become the big brother (despite our ages) and save my life.

I had lunch with my husband, mother and brother Jeff to tell them that the doctor recommended that I begin dialysis.  Because I was running my dad’s business at the time, Jeff asked, “What will you do?” I told him I wasn’t sure, perhaps I’d have to find a job.  Jeff piped up with a proclamation that no one expected nor could we proove would be possible.  Jeff said that he would give me a kidney.

We knew that we were the same blood type, but tissue type is another hurdle.  Nevertheless, my hero, my little brother was willing to undergo serious, complicated surgery to save his sister’s life.  And his wife supported his decision.

While all this is serious stuff–we had a ball making light of the process.   From doctors testing us to qualify us for transplant “from the rooter to the tooter”, to Jeff’s journey in the hospital from his room across the hall, to my room with foly catheter in tow and having to remind the newbie nurse that neither he nor the lead in the catheter were as long as the distance between them, so she should slow down.

I will forever be grateful to my little brother.

God bless and keep you Jeff. Much love,

Jac

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