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 published by Jacquie Lewis-Kemp

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News reports surrounding the death of former Microsoft co-founder Steve Jobs revealed that he underwent a liver transplant two months ago. According to a CNN report, “Livers are a scarce resource. In any given year, only about one-third of the people on the national transplant waiting list receive one, and as of late June, more than 16,000 people were on the list.

Yet it sometimes seems that celebrities in need end up at the front of the line when they need a transplant, and people often assume they get preferential treatment. (Rumors about special treatment circulated after baseball player Mickey Mantle’s liver transplant in 1995, for example.) Health.com: The real gift of life: How medical donations help.

The truth is more complicated. No one can actually buy an organ in the United States (legally, that is). But getting a liver transplant, it turns out, is a lot like getting into college. Once you’re on the waiting list, your chances of getting off it depend largely on your personal circumstances — how sick you are and whether you are a good donor match. But getting on the list in the first place — or on more than one list, as the case may be — requires resources and know-how that most people don’t have.

Can some people ‘cut the line’?

There are 127 centers in the U.S. that perform liver transplants. If you need an organ transplant, your doctor will refer you to one of these centers, where you will be evaluated, given a score based on the severity of illness, and placed on the center’s waiting list, if you are indeed a candidate for transplant.

The center’s waiting list feeds into a national database managed by the United Network for Organ Sharing (UNOS), a nonprofit organization that contracts with the federal government to manage the nation’s organ transplant system.”

A Somewhat Similar Local Story

 

Richard DeVos, the founder of Grand Rapids based Amway Corp. and one of the country’s richest men, received a heart transplant operation at the age of 71.  DeVos owns the Orlando Magic basketball team and is listed at #60 on Forbes Magazine Richest Americans, estimating his wealth at $5 billion.

According to a 1997 Detroit Free Press article, “DeVos waited five months for his new heart — half the average time a person in Michigan waits for a heart transplant. He went to London after checking out his U.S. options and concluding that ‘his chance of qualifying for a heart transplant in the United States was about zero,’ said a close associate. The associate asked not to be named, citing the DeVos family’s preference for privacy in the last year as word grew that DeVos was seeking out medical centers worldwide that specialized in heart transplants.

‘Money didn’t buy him a heart in America,’ the associate said. DeVos had ssembled a medical team, headed by his Grand Rapids cardiologist, Dr. Luis Tomatis, to check out options for a heart transplant, here and abroad. ‘The strong conclusion was that London was his best chance,’ the associate said.

‘It is unusual for a 71-year-old man to be placed on the heart transplant list in the United States,’ said Dr. Keith Aaronson, associate professor of internal medicine at the University of Michigan Medical Center.

Non-U.S. citizens are eligible for U.S. organs, but UNOS, the monitoring agency, limits a center’s procedures for nonresidents to no more than 5 percent. In the United States, money only gets people so far. They can be listed at more than one U.S. transplant program per region, but must be evaluated by each program. Transplant surgery costs $122,601, according to one 1994 study. But costs may be double that if a person is hospitalized prior to surgery.

Wealthy people may travel around the country looking for centers to take them, Aaronson said. ‘That’s the extent, in the U.S., that money would do anything for you. But you can’t buy a heart. If you try and corrupt the system, you’d have to corrupt a whole lot of people.’”

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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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Andrea Boccelli

Did you know that Andrea Bocelli is blind? You know Bocelli, the opera singer known as the fourth tenor and disciple of Lucciano Pavaratti. I didn’t know that, and just the other day I watched the PBS fundraiser that featured Tony Bennett’s Duets II CD and Bocelli is one of the vocal collaborators. No, I’m no opera buff, but I enjoy classical music while writing and like to understand the music.

To listen to Bocelli’s classically trained voice is romantic bliss, even as my fingers type along the keyboard. It doesn’t surprise me that he is blind however, for there have been several other great singers and musicians who are blind—Stevie Wonder, Diane Shuur, Ray Charles, Jose Feliciano just to name a few. It’s just that when a person perfects their craft, you imagine that they used all of their resources to achieve it. How does one understand beauty without sight?

Therein lies the complexity of perfection. Perhaps it is not the quantity of resources or specific resources that reach perfection, but the desire to reach perfection.

I don’t believe it ends with music and blindness. Chronic illness does lots of things to us—makes us tired, susceptible to other illnesses and infection which create another list of problems in addition to the ones we already deal with on a daily basis. It can appear to be a downward spiral if we don’t keep that saying in mind, “When one door closes, another opens”. Bocelli can’t read music and so he overcompensates by listening. In other words, because kidney failure or a heart condition forces you to change direction, it doesn’t mean that you cannot perfect another craft; maybe even something that you really wanted, rather than what you’ve been doing.

So how do you make that transition from the closed to the open door? Here are some suggestions

  1. 1.     Recall what some of the things you’ve always wanted to do are, but somehow never got around to them. Perhaps school took you in a different direction—accounting instead of guitar; maybe the man (or woman) of your dreams came along and instead of pursuing your dream, you were pursued; maybe starting a family got in the way of the perfect career. Think back to what got you up without an alarm clock.

 

  1. 2.     What do you enjoy doing most? Optimally we are already living the dream! Maybe you have already made a career of what you love most. And if you have, great, figure out how to do it in harmony with the medical deficits that you may now have. But if you weren’t living the dream, really reach back and imagine what makes you most happy.

 

  1. 3.     What do you need this new venture to do? Is it a hobby or a job? If you are already independently wealthy, perhaps you don’t need to make what you love earn a living. And even in that case, a hobby that you love and can perfect is important to self worth. We all need a project, or something that adds to our value. But if you are one of the 99% of us, and need that project to also earn a living, then you need a plan for that to happen.

 

 

  1. 4.     How can you make money doing it? Explore all the ways people earn a living doing what you love to do. Imagine yourself doing it and what you would need in the way of support, materials, time and routine.

 

  1. 5.     Finally, say it out loud so that others will hold you accountable, practice and perfect it!

 

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Perhaps one of the most difficult aspects of chronic kidney disease is the diet.  After you get past figuring out how you will schedule dialysis and what you need to do in order to have energy and strength, you find that diet plays a large role in making that happen.

Salt Restriction

It is common knowledge that too much salt isn’t good for you. However for dialysis patients high, sodium foods impact a dialysis patient immediately. Already plagued with water retention, something as simple as a slice of pizza or a bag of potato chips can cause dialysis patients severe ankle swelling or swelling in the abdomen causing shortness of breath.
Excess sodium also causes blood pressure to rise and cause headaches, mental dullness and a loss of energy. At its worse, hypertension (high blood pressure) can incite cardiac complications.

Phosphorus Restrictions

Who ever thought that potatoes would be something restricted on a diet? But they are a very special case when it comes to kidney disease. The kidneys filter waste from the blood and it is expelled through the urine. When your kidneys don’t function properly, one of the chemicals that don’t get filtered is phosphorus. Doctors prescribe phosphorus binders which make it so that phosphorus can be cleared in the stool rather than urine. However, the best option is to limit consumption of high phosphorus foods like nuts, organ meats, chocolate, cola drinks and beer.

Potassium Restrictions

An orange on the restricted list? For the same reason that phosphorus builds up in the blood stream for dialysis patients, potassium also builds up in the blood stream. Excess potassium can cause problems such as weakness, muscle cramps, tiredness, irregular heartbeat and, worst of all, heart attack. Potassium is found mostly in fruits, vegetables and dairy products. Certain fruits and vegetables are very high in potassium while others are lower. However, eating a large amount of a low-potassium food can cause potassium to add up to dangerous levels. Be aware that most foods contain some potassium — meat, poultry, bread, pasta — so it can add up. Butter, margarine and oils are the only foods that are potassium free.
Refer to the charts below from DaVita Dialysis, as simple reminders of which foods should be restricted and some suggested alternatives.

High potassium

High phosphorus

Double jeopardy —High potassium and high phosphorus

Fruits

Meat

Milk

Vegetables

Poultry

Dairy products

Fish and seafood

Nuts and seeds

Wild game

Chocolate

Eggs

Whole grain products

Dried beans and peas

Check the list below to see if you are eating any of the double jeopardy foods on the left. Using some of the alternatives listed on the right will help improve your chances of keeping potassium and phosphorus under control.

Double Jeopardy Foods (High Potassium & High Phosphorus)

Alternatives

Cheese

Vegan rella cheese, low-fat cottage cheese, sprinkle of parmesan cheese (use very small amounts of extra sharp cheeses for the maximum flavor)

Chocolate

Desserts made with lemon or apple, white cake, rice-crispy treats

Cream Soup

Broth-based soups made with pureed vegetables or make soups with Mocha Mix® nondairy creamer or Rich’s Coffee Rich®

Dried beans and peas

Green beans, wax beans

Ice Cream

Mocha Mix® frozen dessert, sorbet, sherbet, popsicles

Milk

Mocha Mix® nondairy creamer, Coffeemate®, Rich’s Coffee Rich®, Rice Dream® original, unenriched rice beverage

Nuts

Low-salt snack foods including pretzels,tortilla chips, popcorn, crackers, Sun Chips®

Peanut butter

Low-fat cream cheese, jam or fruit spread

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African Americans are disproportionately affected by diabetes and hypertension which make up more than 2/3 of all cases of kidney failure. Understand these risks and take charge of your lifestyle to prevent kidney disease.

Further, share what you’ve learned with family, friends, your neighborhood and your congegation.

 

 

 

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Yoga Poses

I used to lead a very sedentary life of writing and blogging, walking from my computer to the refrigerator, with the occasional walk to the garage door to let my dog have at it within the Invisible Fence. That’s it Lizzy, exercise yourself! How much lazier can you get, when you don’t even walk the dog.

 

 

My diabetes has always kept me with pretty good eating habits, so I sought to exercise more to lose weight, strengthen my upper body and gain a better range of motion. A good friend (ok, the ring bearer from my wedding—boy am I old!) is a personal trainer, so I signed my husband and I up to work out with him 3 days a week. We did well for about six months, but we didn’t lose much weight. Indeed I felt stronger, and my upper body strength and stamina was improving. My husband’s stamina improved as well, but his schedule seemed to get in the way and he eventually quit and I was traveling out of the way to meet him there and he no longer went, so I quit.

Well, I stopped the personal training sessions, but I continued to do the routines he outlined for us at home. I even bought a stair stepper to maintain an everyday exercise commitment. But again, no weight loss—felt well, but no weight loss.

A fellow author and registered nurse who lost over 80 pounds offered a weight loss e-course that I signed up for. Although I knew I was eating relatively healthy, there were some key components that I was missing, which hindered my weight loss. Shelita Williams (www.shelitawilliams.com), through her e-course helped me to do 3 key things that lead to a 10 lb weight loss over six weeks: 1) Calculating the daily caloric requirements we need to exist; and targeting a 500 calorie reduction through a combination of diet and exercise; 2) Keeping a journal of everything I ate, exercise I did, water intake (not a real issue for me because of my transplant water requirements); and 3) Operating within the tips she offered throughout the sessions like, the green smoothie meal replacement or fast to shrink our stomachs in order to reduce cravings; don’t eat anything for two hours before bed (I cut off eating at 7pm, regardless of the time I turn in.

This helped me to lose 10 pounds, however maintaining interest in daily exercise has been a challenge. But I continue to search for that perfect complement. I recently bought a Groupon for 10 yoga class sessions. I’ve been twice and I love it. Not only is it a good workout, but in just two sessions I can feel myself more limber and strong. Those sets of planks Corey started in my personal training sessions gave me a heads up for this yoga thing. But I miss the cardiovascular workout from Corey (coreyalfordfitness@yahoo.com). In a perfect world I could do yoga 3 days a week and train with Corey 3 days a week and like God, rest on the 7th. Maybe I will try easing into that schedule.

I wasn’t proud of where I was, and I know that exercise (even if you are the perfect weight) is important to maintaining good glucose control, circulation and bone density—all key for diabetics and transplant patients.

The key is not to give up, but to keep trying until you reach your health and fitness goal and can maintain it!

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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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Soul Food has been the blame for Type 2 diabetes and uncontrolled Type 1 diabetes for years.  One of the reasons that it has not been quickly eliminated from the diet of African Americans is because of the social role these foods have played throughout history.  Much like the movie “Soul Food”, the Sunday Diner and family contribution to its preparation is what has historically kept families together.  Therefore for the sake of the African American family, we must find a way to uphold this ritual and at the same time reverse the effects it has on diabetes and heart disease.

Many of the foods are in fact healthy and nutrient filled at the start.  It is often the preparation styles that rid the foods of their cancer fighting and sometimes blood pressure lowering nutrients.  Adding excess salt and fat also cause some dishes to be unhealthy. With a few slight changes, soul food can become not just good to you, but good for you.

Low-Sodium Selections

Traditional soul food is high in sodium or salt. Replace
table salt with sea salt. This type of salt has a strong flavor, and you won’t
need to use too much of it to get the flavor you desire. Select foods that say
“reduced” or “low-sodium” on the labels. Include dried or fresh herbs and spices
in your favorite soul food recipes to add flavor without adding
salt.

 

Low-Fat Diet Options

Traditional soul foods can be high in unhealthy fat,
such as saturated and trans fat. Soulfoodandsoutherncooking.com suggests
replacing traditional soul food ham hock with smoked turkey and using turkey
bacon instead of pork bacon. Breading and frying meat and poultry are typical
soul food preparations. Select a lean cut of beef or skinless chicken breast,
which are low in saturated fat. Coat the protein with flour, egg wash and
crushed-up corn-flake cereal. You can add your favorite seasonings such as sea
salt or dried herbs. Spray a cookie sheet with a nonstick spray and bake the
meat until done. This cooking method cuts out the fat from battering and
frying.

Balanced Carbohydrate and Veggie Options

Soul foods include starchy vegetables such as corn,
potatoes and peas. You can still enjoy these foods while having diabetes, but
you need to balance them with some nonstarchy vegetables. Enjoy steamed green
leafy vegetables alongside your starchy veggies. Prepare collard greens, spinach
or kale in a hot saute pan with a splash of red wine vinegar. Drizzle the cooked
greens with heart-healthy olive oil, and sprinkle with sea salt to finish.
Black-eyed peas are a staple of soul food. Pair these simple carbohydrates with
complex carbohydrates such as brown or wild rice. Simple carbs break down
quickly and may cause a spike in your blood sugar. Pairing them with complex
carbs may help to stabilize your blood sugar since foods with complex carbs take
longer to break down.

Replacements in Baked Goods

When baking biscuits or cornbread, replace fatty
buttermilk with a reduced-fat milk. Whipped cream is a delicious addition to
homemade apple pie. Replace half the heavy whipping cream with reduced-fat milk
to shave some fat. Use 1 percent or skim milk in recipes that traditionally call
for whole milk.

Different Fats and Oils

Fill your diet with heart-healthy fats, such as
monounsaturated, polyunsaturated and omega fatty acids. Use healthy oils such as
olive, vegetable and corn oil in your cooking. Replace butter with margarine.
Include some nuts that are high in monounsaturated fats, such as almonds,
cashews and walnuts.

Read more: http://www.livestrong.com/article/328360-soul-food-diet-for-diabetics/#ixzz1lf3mTmIx

 

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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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