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 Organ Transplant

Vita Redita (Life Restored) Gala, Silent & Live Auctions Support UM Transplant Center.

Join us at the 10thannual Vita Redita Gala Dinner & Auction in support of the University of Michigan Transplant Center.

 

We have some very exciting things planned for the evening; including a chance to win a one of a kind diamond, custom made jewelry, a flight on a B-17 Bomber, Suite tickets to the Michigan Homecoming game, premium wine and more.

 

We still have seats available. Please consider inviting your friends and family to join you for this fun filled evening supporting a great cause.

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Normalcy

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Camp Michitanki 2012

 

During my seven months of peritoneal dialysis, my very complicated regimen of being connected to a machine all night, waking up to a routine of blood sugar testing, taking insulin, weighing myself and recording it in my log book, became overwhelming quickly. I look back on it now and recall how tedious and time consuming it was to manage my availability of dialysis fluid, calculate my requirements with a system of month-end dialysis fluid inventory, ordering a shipment with enough boxes of each fluid strength and accepting the monthly shipments of fluid from a truck driver who wheeled in  +/-20 boxes of fluid from his 18-wheel semi truck. I can only imagine what my neighbors thought when a big semi truck entered our cul-de-sac at 7 in the morning to make 3-4 trips with a dolly full of boxes, to bring them into my house.

I longed to have my normal life back. And then, normal meant life with diabetes, but not dialysis. My kidney transplant made me feel free and completely rejuvenated. My later pancreas transplant made me feel something I don’t ever remember feeling–life without insulin, testing and dietary restrictions.

If I had this kind of euphoria from my transplants as an adult, imagine how a child feels after being transplanted. All kids ever want is to be is like their friends. They want to dress like their friends, wear their hair like them, talk like them, eat what they eat, go where they go . . . And so it is not surprising that kids living with organ transplants need that sense of normalcy even more than other kids. And that is why the University of Michigan Transplant Center has created Camp Michitanki, a place where kids living with organ transplants can do camp activities like all of their friends, in the safe environment and under the watchful eye of transplant doctors and nurses.

You can support Camp Michitanki and enjoy a fabulous experience at the BIG HOUSE–Michigan Stadium Jack Roth suites, by attending the University of Michigan Transplant Center’s Vita Redita black tie gala and charity auction. The event is called the Vita Redita because it is Latin for Life Restored!

If you would like to attend the event, become a sponsor, or donate by providing an auction item, please contact the Events Director, Melissa Swain at (734) 232-0594. In the meantime, read more about Camp Michitanki in the Detroit Free Press http://www.freep.com/article/20120705/NEWS05/207050461/Transplant-camp-lets-kids-be-kids?odyssey=tab|topnews|text|FRONTPAGE

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This was really an event for sociologists to study. Last week my husband and I attended a UM Transplant Center fundraiser at Zingerman’s Roadhouse in Ann Arbor. As usual, Chef Alex whipped up an amazing meal that helped to fund Camp Michitanki, a summer camp for kids living with an organ transplant. The dinner was great, the live auction was fun, but to observe such concentration and skill given to delivering plated food and beverage was something to see.

Only my husband, and his propensity to return to his roots as a researcher, would notice how these surgeons brought their surgical skills to the restaurant. As we sipped our wine before the meal, Steve pointed out how one surgeon wanted to clear empty appetizer dishes from the table from everyone at the same time rather than make several trips. Steve said “Look at him” as he impatiently waited for the man to finish his last bite. “They’ve got to be efficient with their work”, Steve said about the surgeons.

I had to catch myself as one of the surgeon/waiters asked me if I’d like more wine. I almost replied, “Well do you think I should”? “Sure” I told him.

Alas, the meal was over and dessert had been served. Again Steve pointed out surgeon/waiters with empty trays walking aimlessly around the room looking for something to do. “They need to do something. They need to cut something–they don’t know what to do”. We laughed as it really was cute.

Watching these very intense, extremely bright and hard working lifesavers hold back their arrogance (and Steve says there is no one more arrogant than a surgeon) and humble themselves to serve food to others was quite a sight.

We joke about the arrogance of a surgeon, but which one of you would undergo anesthesia with an unsure surgeon placing a scalpel on your abdomen? Give me the most arrogant, the Leaders and Best!

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Managing a chronic illness like diabetes is more an issue of behavioral change than it is a medical treatment. Sure for insulin dependent diabetics, management requires not only learning to administer the injection, but how to manipulate the doses. But the majority of diabetes management involves understanding how various foods and exercise affects blood sugar levels, and learning to orchestrate a routine that keeps a relative flat line of glucose levels within the normal range

The same is true of living on dialysis or transplant living. Other than being compliant with the doctor’s orders, most of the activity while on dialysis or maintaining a healthy transplant, involves a behavioral change.

Many times, dietary restrictions like low sodium, low fat, low glycemic, means that people need to learn to eat and cook differently. Often times this means a change not only for the person afflicted with the chronic condition, but the entire family. For instance, my husband has a condition unrelated to diabetes or transplant that requires him to eat a low sodium diet. Since I prepare about 99.99% of the meals in our house, that means that after a life of no sugar and low carbohydrate diets, I now add to our meals, low sodium! But it doesn’t work if I prepare his meals separately. In a world of processed foods with lots of added salt, eating low sodium is healthy for everyone.

Since a lot of chronic conditions are aided and best managed by lifestyle changes and establishing a routine, I’ve started a health coaching practice which works is concert with your doctor’s care plan. Once your doctor has prescribed the necessary activities, I work with the patient to develop a regimen that makes those changes fall in concert with your current life.

Perhaps the busiest and most difficult to manage time in my life was when I was a dialysis patient. I was CEO of a manufacturing company, married with a son in elementary school. My job was an hour away from my son’s school. He played soccer and went Kumon twice a week after school. Peritoneal dialysis required that I did one midday exchange and connected to a Cycler at night to perform the dialysis as I slept. My diabetes required glucose monitoring four times a day and insulin injections twice a day. Because dialysis can cause the blood pressure to fluctuate to dangerous levels, I also needed to monitor my weight daily and blood pressure several times a day.  At that time I was sodium restricted as well as on a diabetic diet, and so the best way to control sodium and sugar was to prepare meals myself. As a busy wife, mother and CEO, that was more than a notion, but necessary and therefore not impossible.

All of those requirements—medical, occupational and familial could be summarized like this:

  • Eating out had to be a rare treat

  • I needed diabetic and dialysis medication and testing supplies handy at home and at work

  • In order to cook healthy meals and eat at reasonable times, I had to have them prepped to the point of spending an hour to finalize them for dinner.

  • In order to attend my son’s sporting events and participate in the snack schedule or take him to Kumon even when I would normally work late, meant I had to have business resources at home (computer, fax, printer, binding equipment, presentation folders, etc.).

When I finally got my Ultimate Multitasking Routine in swing, this is how it ran…typically.

  • My workday began at 5:30 am in order to disconnect from my cycler, do all of my testing (weight, glucose, blood pressure), take my insulin plan and prep dinner, prepare lunches for everyone to take to school or work, prepare a light breakfast, and if necessary complete any last minute items for work.

  • Our routine was that my husband usually took my son to school and I usually picked him up from school. As they left, I dressed and left for work. My commute was about 45 minutes which allowed me time to clear voicemail and not walk into any surprises.

  • I kept a three drawer plastic storage cabinet under my desk to store a glucometer, testing supplies, dialysis fluid, blood pressure cuff and supplies, an extra pair of pantyhose and nail polish remover—for other emergencies. The key to being compliant with doctor’s orders is to make the process easy to do and have all of the necessary items available. So at midday, I was ready to test and do my midday dialysis exchange. I kept my stock of dialysis fluid replenished by loading up the car on Sunday night and bringing it into the office each Monday morning.

  • If my son had an after school activity, I would also load up the car the night before with the team snack or whatever was necessary so that I could leave work, pick him up from school and be ready with whatever supplies.

  • Because dinner had been prepped that morning, it was usually within an hour of being done, if not crock pot ready. While completing dinner, I supervised my son while doing homework and was available for questions.

  • In the evening, I completed bedtime testing, took medications, and finished any job related work and prepared for the next day.

 

While of course, things didn’t always work out this smoothly, it was my home base, and when things like illness or other family functions got in the way of this routine, I knew where to return.

I would like to help others with chronic conditions to develop the routine that works best for them to be compliant to their doctors orders and live healthy lives without making overwhelming changes to their current lifestyle.

FOR MORE INFORMATION ON HEALTH COACHING, click on the Health Coaching Tab above.

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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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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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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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