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 dialysis

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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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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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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The National Kidney Foundation of Michigan (NKFM) will gather friends and supporters at the MGM Grand Detroit—Grand Ballroom on December 3, 2011 for the 7th Annual Kidney Ball.  The event, which features the theme “Motown Magic” every year, will include a night of live music, great food, cocktails, and an after party, all making it the most fun charity event in metro Detroit. Last year’s Kidney Ball raised over $500,000 for the NKFM’s many programs and services that help more than 900,000 Michigan residents living with chronic kidney disease.

 

The spectacular evening, which attracts more than 700 of metro Detroit’s givers and shakers, will begin with cocktails at 6 p.m. and a fabulous dinner served at 7:30 p.m. There will also be an exciting live auction along with an expansive and unique silent auction.  Guests can also enjoy dancing and listening to the soulful sounds of the Jerry Ross Band after dinner.  Jim Vella, President of the Ford Fund, and Vivian Pickard, President of the GM Foundation, will serve as the Honorary Chairs of the 2011 Kidney Ball. Blanche Mack and Myra Moreland will be this year’s Event Chairs.

 

The evening wouldn’t be possible without the generous support of the Kidney Ball Presenting Sponsor, Meijer, as well as the many other sponsors and supporters of the event.“With so many challenges in our state things are not likely to get easier for people with kidney disease.

“Supporting the 2011 Kidney Ball can continue to help make their lives better,”
said Dan Carney, President and CEO of the NKFM. “We invite everyone to take a
step back into the Motown era and support an organization whose mission truly
is to make a difference.”

Tickets for the event are $250 per guest and can be purchased by calling the NKFM at 800-482-1455. More information about the event is available at www.kidneyball.org or you can get regular updates from the NKFM (including Kidney Ball updates) at www.facebook.com/KidneyMI.

 

The NKFM, voted “Best Managed Nonprofit” of 2003 by Crain’s
Detroit Business, and rated a 4-star charity by Charity Navigator, is a 501(c)3
nonprofit organization established in 1955. Since its inception, the NKFM has
led the fight against kidney disease and has increased awareness of the
critical need for organ and tissue donations. The mission of the National
Kidney Foundation of Michigan is to prevent kidney disease and improve the
quality of life for those living with it. The NKFM is widely known for
providing more programs and services to more people than any other region or state.

Motown Kidney Ball
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Hurricanes Irene and Katrina, terrorist attacks like 911, earthquakes and other disasters have us contemplating emergency preparedness.  What items would you pack up to move out of harm’s way? In the case of a sudden emergency, what items would you grab? Even if there is a fire in your home and you have a quick moment to grab one thing, what would it be?

If you wait to answer these questions when you need to, chances are you won’t grab the right things and you will regret that you didn’t think through these  uestions pre-need and not at-need.  For people with diabetes, organ transplants or other chronic conditions,  the question is critical and the first item is a given–medication,  items 2-10 may vary.

 On September 11, 2001, a good friend of mine was traveling from the Midwest to the West coast.  He called  from his layover in Minneapolis to tell me that the FAA was considering grounding all aircraft.  He had been recently diagnosed with Type 2 diabetes.  So as I listened to him complain about airport hotels and poor restaurant choices, my Type 1 brain immediately began to calculate what I would need. What concerned me was that since he had homes in both locations, he likely wasn’t carrying several days of medication. I interrupted his complaining and asked, “How much medication do you have”? He answered, “Oh, I don’t know.” I asked him to pull it out and count how many days worth of medicine he had.  I listened as he opened pill bottles and counted, and he was comfortable that he had at least a couple weeks of medication. Funny thing is that as he was counting pills, I was thinking of next steps if he didn’t have enough medication.  Time was critical because he would need to call his pharmacist (during business hours in another time zone) to transfer his prescriptions to a local pharmacy, in order to fill them.

Here’s a quick list of items to consider:

Quick Evacuation

 

  1.  Medication
  2.  Medication
  3.  Medication
  4.  Critical / Portable equipment

 

Hours to Evacuate or Move to a limited space in the home

  1. Everything from the quick evacuation, plus
  2. Medical supplies such as glucose tabs, glucometer & supplies
  3. Durable medical equipment (dialysis supplies, heart monitors, etc., breathing machines)
  4. Physician and pharmacy phone numbers
  5. CASH
  6. Water
  7. Non perishable food
  8. Flashlight
  9. Battery operated radio

 

Some of these items can be stored in
one location, so that only a few will need to be gathered in the case of an
emergency. No one wants to imagine such disaster, but it is better to be
prepared and not need it, than to need it and not be prepared.

 

 

 

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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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I’ve had juvenile diabetes for more than 32 years and so I have always had to figure out how to incorporate my diabetes monitoring into my busy schedule.   My schedule became even more complicated when my kidneys failed and I was on dialysis.  I was married, with a fifth grader and an automotive supplier executive.  I did peritoneal dialysis which required me to be connected to a machine which dialyzed me overnight and I did one exchange of fluid midday from work.  Because I kept my dialysis a secret from employees I usually tied up one of the phone lines and closed the door to my office so that it appeared that I was on a confidential call and no one would disturb me.

One day I needed to attend a meeting about a half hour away.  In order to get to the meeting on time, I wouldn’t be able to do my midday dialysis at the office.  Once I missed my midday exchange and felt awful, so I vowed never to miss dialysis again.  For a quick moment I thought, maybe I can’t do this.  Maybe it is too much to run a company while on dialysis.

This is where God helped me to think creatively so that I could attend the meeting and not miss dialysis.  I remembered that God created me to be a quick thinking and resourceful woman, and so from my office I gathered all of my dialysis supplies and fluid into a spare briefcase and put them into my car. In my office parking lot, I put on my surgical mask and washed my hands with the disinfectant wipe.  Carefully I uncoiled my dialysis hose implanted in my abdomen and connected it to the drainage bag that I put on the front passenger side floor (below my heart, so that gravity would cause the old fluid to drain out of my abdomen).  I laid my new fluid bag on the car dash to heat up from the sun and window defroster.  Once my old fluid finished draining, and at a red light, I moved the new bag of fluid from the dash and pinched it in my sunroof window (above my heart, so that gravity would cause it to drain into my abdomen).  I moved the clamp so that the fluid would start to drain.  After the bag was empty and at another red light, I washed my hands again, put on my mask and disconnected from the dialysis system.  I taped up my hose and buttoned up my pants.  I put everything into the trunk of my car and attended the meeting as scheduled and felt just fine.

What this experience reminds me is that no matter what people say or what may be going wrong, I am a child of God, created in His image.  He has shown me how to multitask and how to creatively work my way through problems and because of that, I can live victoriously—and so can everyone.

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