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 kidney disease

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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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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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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Mycophenalate

Some medications have side effects and long term implications despite their immediate relief or prevention of more major illnesses.  Transplant immunosuppressant drugs, despite their protective measures for the organs, are particularly hard on the body.
When an organ, such as a liver, kidney, or a heart is transplanted from one person into another, the immune system of the recipient triggers the same response against the new organ it would have to any foreign material, setting off a chain of events that can damage the transplanted organ. This process is called rejection and it can occur rapidly (acute rejection), or over a long period of time (chronic rejection). Rejection can occur despite close matching of the donated organ and the transplant patient. Immunosuppressant drugs greatly decrease the risks of rejection, protecting the new organ and preserving its function. These drugs act by blocking the immune system so that it is less likely to react against the transplanted organ. A wide variety of drugs are available to achieve this aim but work in different ways to reduce the risk of rejection.
Some of the side effects include:

Transplant Drug

Side Effect

Mycophenalate

Anxiety; back pain; constipation; cough; diarrhea; dizziness; headache; loss of appetite; mild stomach pain; mild tiredness or weakness; nausea; tremor; trouble sleeping; upset stomach; vomiting.

Tacromulis

Infections, difficulty sleeping, shaking, usually of the hands, headache, high blood pressure (hypertension), diarrhea, constipation, nausea, vomiting, skin reactions, sweating, hair loss, raised blood sugar level, raised cholesterol, changes in normal levels of levels of potassium, sodium, magnesium, # of blood cells, shortness of breath, appetite and weight changes, muscle or joint pain, anxiety, agitation, confusion, depression, dizziness numb sensations, seizures, heart problems, kidney problems, liver problems, ulceration or bleeding.

While Mycophenalate (CellCept) and Tacromulis (Prograph) can cause more immediate and temporary side effects that can be treated with changes in diet, activity or temporary relief medications, Prednisone has more significant long term effects.
Over the next three weeks we will take a look at the long term effects of Prednisone: Cataracts, Osteoporosis, and Cholesterol.
(Sources: Encyclopedia.com, Medscape Today, WebMD, Net Doctor.)
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From the time I was a child, my brother and I always grew up with a dog. At one point, we had several dogs: one purchased and we took in several strays. And so, when you grow up with a dog as a part of your family, you tend to continue to have a dog as a part of your family.

Santa brought my son a Rottweiler / German Sheppard or Collie (or maybe both) mix rescue from the Humane Society for Christmas. I’ve always preferred rescues to pure bread dogs because they somehow seem to have that character of appreciation and unconditional love for sparing their lives.  So Lizzie is the dog my son has grown up with and she now is the center of attention since our son is away in college.

WhenLizzie began to shed this summer, I thought it odd, but was more concerned with all the hair on our carpet and getting it up than the reason why she was shedding. When she began to get slower and have some difficulty getting up, I thought it was joint or arthritis issues, even though she was only 8 years old (56 in dog years) . The herbal fix of glucosamine and chondroitin didn’t seem to work, so I took her to the vet. He gave her a trial sample of a prescription arthritis drug to see if she perked up. Indeed she seemed to perk up and so I bought the full prescription.

Then she began to have black tar-like looking stools, which indicated she was bleeding internally. The veterinarian said that it was likely the arthritis medicine causing an ulcer and that I should discontinue it. I did of course, and her weakness worsened. Not only that but she really became lethargic and didn’t have much energy at all.

Well, I can remember being anemic during kidney failure (because my kidneys were chewing up my red blood cells) and how tired I was. So I attributed her tiredness to being anemic.  But her symptoms continued to worsen and she stopped eating and shortly stopped drinking. The vet drew blood work and instructed me to get some water into her body by using a turkey baster to squeeze into her mouth, and he should have answers from the blood work in the morning.

When I called the vet, I couldn’t believe my ears–Lizzie is in kidney failure. Kidney failure? What? My first thought was, well, we’ll have to start dialysis until we can find a donor dog who is a tissue matches, right? Wrong said the vet, while there is a doggy dialysis machine at Michigan State, it is used for puppies who are poisened from drinking windshield washer solvent or something, or ate a bottle of Tylenol. They don’t make appointments for regular sessions.

Ok, so the possibilities came immediately to mind and not the probabilities. Even if she could have made appointments for dialysis, could I have really driven an hour each way and waited while she dialyzed? And the cost! I could have just heard my husband talking screaming about the $45 donation to the Humane
Society for the dog with the balloon payment in eight years.

The vet explained to me that the best starting treatment for dogs in kidney failure is hydration therapy. She would receive ongoing hydration packs regularly which has worked for some dogs for up to 2 years. So Lizzie spent two days in the hospital receiving IV fluids while I contemplated becoming a part time nurse to
my dog–my dog who has loved me unconditionally for eight years–I can do this.

When I called to check on her (it’s not a good idea to visit because they become confused why you came and didn’t take them home.) the vet said that each day brought a little more interest in food. When the vet rechecked her blood work, her BUN, potassium and sodium were within the normal canine range–her kidney function was restored!  Ecstatic with the news, I next asked, so what is wrong with her? What caused her kidneys to shut down? More extensive blood work diagnosed that Lizzie has Addison’s disease. As they say, hind sight is 20/20–the hair loss, the weight loss (10 lbs in a month), weakness and loss of appetite were classic symptoms.

Addison’s disease, a condition former president John F. Kennedy had, is controlled by Prednisone and a shot of Cortisol every 25 days. I can handle giving her a daily 5 mg pill of Prednisone hidden in a finger full of peanut butter. The near monthly shot costing about a hundred bucks a pop may turn into a shot from
one of my old insulin syringes–if I can purchase a vial of the cortisol.

After one shot of Cortisol and a little more than a week of Prednisone, I’m happy to report that Lizzie is better than new.

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Brandie Ivy lived on dialysis and has been listed for a kidney transplant for more than 9 years.  During that time she she attended college and married the love of her life. 

This young marriage has always had to consider the constraints of dialysis–hours of time each day, devoted simply to dialysis, nephrology dietary restrictrictions,  constant testing, fluid restrictions, registering with  doctors and a transplant center in the area they planned to travel to that she would be in the area, packing dialysis supplies, . . . and the list continued. 

 

 

On August 12, 2011 all of

that changed!!!!!!!!!!

 

Brandy received her long awaited kidney transplant! Now she and her (not so new, but I bet the relationship will feel new) husband will live a life that they only dreamed of!

The blessing and miracle of organ transplant is not just a medical one. In fact it is a very complicated medical miracle and spiritual experience.  Think about it, the organ that once grew in someone else’s body is surgically implanted and now functions in another person’s body. It is a medical miracle that only Christ can guide.

As you can imagine, transplant is a very expensive procedure, there are the costs associated with procuring the organ, preparing the organ for transplant, administration of the transplant process, the actual transplant procedure and post operative care which continues for life.

Insurance pays for most of the expenses, however there is a significant portion left unpaid that the transplant recipient has to bare, including an anti rejection drug regimen or the rest of this young woman’s life.

That is why on Saturday, September 24, 2011 at Tabernacle Missionary Baptist Church there will be a fundraiser and I will be the keynote speaker.  Brandy asks that I bring a message that teaches the importance of organ donation, particularly in the African American community.  We will use our examples of life restored through organ transplantation to encourage others to become organ donors.

Tabernacle Missionary Baptist Church is located at  2080 W. Grand Blvd. Detroit, MI 48210.  Tickets for this event are $30 and can be purchased by calling 313 598 2537 and the tickets will be delivered. Checks can be made payable to Brandie Ivy. You may also purchase tickets  through paypal.com by using the email address brandieivy@gmail.com.

I hope you will come out and support

this courageous young woman.

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Join walkers from all over the state of Michigan to support the National Kidney Foundation in its quest to advocate for patients in all stages of chronic kidney disease.

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