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50 Year Journey with Diabetes

By Karrie Hawbaker

Public Relations Manager

Posted:  2/27/2014 4:00 PM

Tags:

Kitty Castellini has more than 50 years of experience with diabetes. In 2004, she underwent a pancreas transplant. Nine years later in 2013, Kitty’s transplanted pancreas failed and her type 1 diabetes returned. She shares her lifelong story of diabetes with you today.

“Sugar Diabetes,” yes, that’s what it was called in 1963. I was actually diagnosed by curiosity. My older sister became very sick, and was diagnosed with “sugar diabetes”. The endocrinologist asked my parents about testing my older brother and me for type 1 diabetes. November 22, 1963, at the young age of 2 ½, I was diagnosed as well.

Being so young, I was clueless to what diabetes was. The tool for managing diabetes back then was testing your urine for sugar. At the age of 5, I was doing just that. My Mom had taped several charts on the bathroom wall for us. One chart was for recording our sugar levels, and the other was for recording our ketone levels. If our sugar levels were above three, we would test for ketones. My parents taught us at a young age how to be responsible for managing our diabetes.

In October 1984, I gave birth to a beautiful healthy baby girl. At this time, I had diabetes for twenty-one years. I told myself I will outshine diabetes at all cost, and went on to have a very wonderful career.

In 2000, my eyes started to bother me, and I was diagnosed with severe proliferative diabetic retinopathy! I started many eye operation treatments, beginning with laser surgery. I started researching how I could save my precious eye sight. While researching, I learned about the insulin pump. Oh yes, I wanted one. After researching, I started on a MiniMed 504 insulin pump. This insulin pump was the coolest thing I had ever seen, and I wore it proudly.

August 2001, I was cleaning up dinner, and started to scream. I had just lost my eye sight in my one eye. By morning, I was completely blind in both eyes! I remember crying and being very upset. Here I am, 38 years of living with type 1 diabetes, and I’m totally blind. I hated diabetes and what it had taken from me. I decided at that moment that it was not going to win! I was going to beat diabetes; it was not going to get the best of me.

For the next two years, I underwent approximately 30 major eye surgeries. My life had changed. I lost my career, and became dependent on my family. I went to school for the blind and visually impaired, and learned how to live a different life. My family was my strongest support. I would not take no for an answer; I was determined to beat diabetes. As I slowly regained some vision, I started to develop several other complications from diabetes, including gastroparesis and hypoglycemia unawareness.

August 2004, I underwent a pancreas transplant. There was no guarantee this would work. Diabetes had now taken so much from me and made me so sick, that on the day of my transplant, I could barely walk. My husband pretty much carried me into the hospital. Preparing for my transplant, as I put on the hospital gown, it was time to remove my good ole MiniMed 504 insulin pump. As I removed my pump from its worn leather case, a tear ran down my cheek. I gave my pump a kiss, thanked the insulin for keeping me alive, and handed my pump to my husband. That pump is now packed away in my cedar chest. Before going to the hospital, my daughter asked me to make sure I brought it home. She said she wanted it, as it was a part of me for the past four years. We learned at that moment how much that insulin pump had meant not just to me, but my entire family.

In 2007, I became a professional broadcaster and hosted a live weekly radio program on diabetes. I was going to give back by bringing awareness to diabetes and educate on the complications and how to prolong and prevent them. Diabetes Living Today® was born. Sadly, I became ill in 2012, and slowly began deteriorating. I was seeing my transplant team to no avail. April 2013, I became bed ridden, and was diagnosed with CMV, a virus that almost cost me my life. I lost my transplanted pancreas. By July 2013, my c-peptide was well below .05. The pancreas was no longer working, and my type 1 diabetes had returned.

Since my type 1 diabetes returned, it was time for me to go back on an insulin pump. Insulin pumps are much more advanced than they were years ago. In October 2013, Medtronic released their new MiniMed 530G system. My endocrinologist and I decided this was the best pump on the market that would meet my needs. In December 2013, I started on my new insulin pump and CGM.

Since starting on the MiniMed 530G with Enlite, my diabetes has become easier to manage, allowing me to stay in a target range of 90 – 140. The Enlite sensor and support from my start up team, who have worked with me in many areas, has helped me to stay in this target range. Additionally, I am now eating healthier, feeling better, and still determined to not let diabetes get the best of me.

Important Safety Information
Medtronic Diabetes insulin infusion pumps, continuous glucose monitoring systems and associated components are limited to sale by or on the order of a physician and should only be used under the direction of a healthcare professional familiar with the risks associated with the use of these systems. MiniMed 530G with Enlite is intended for the delivery of insulin and continuous glucose monitoring for the management of diabetes mellitus by persons 16 years of age or older who require insulin.

Pump therapy is not recommended for people who are unwilling or unable to perform a minimum of four blood glucose tests per day. Insulin pumps use rapid-acting insulin. If your insulin delivery is interrupted for any reason, you must be prepared to replace the missed insulin immediately.

The information provided by CGM systems is intended to supplement, not replace, blood glucose information obtained using a home glucose meter. A confirmatory fingerstick is required prior to making adjustments to diabetes therapy. MiniMed 530G with Enlite is not intended to be used directly for preventing or treating hypoglycemia but to suspend insulin delivery when the user is unable to respond to the Threshold Suspend alarm and take measures to prevent or treat hypoglycemia themselves.

Please visit www.medtronicdiabetes.com/importantsafetyinformation for more details.

Comments

Shirley Hamilton

Posted on Fri Feb 28 00:46:30 GMT 2014

Kitty, it is so good to know that there are others who have passed the 50 years with diabetes mark. I was 28 months old in December of 1957 when I was diagnosed with Type 1. That means that I've been diabetic for 56 years! I too remember the bad old days of Testape, Clinitest and surgical steel needles with glass syringes. I didn't get my first glucose monitor until 1984 and it was the size of small tablet computer but about 3 inches thick!

I also have retinopathy and have had many laser surgeries, but none for over 20 years. I still have full sight, but there is some resident scar tissue. A small price to pay for still being able to SEE. I also had a quad bypass 16 1/2 years ago, also a complication of the diabetes. But I did have 2 beautiful children, a boy and a girl, without complications, who are both in their mid 30s now, both happily married with children of their own

I've been on the insulin pump for a little over 5 years now with great results after many years of 5 injections a day. Just this past January I started with the MiniMed 530G system with the Enlite sensor and like it a lot. I would never go back to multiple injections as this gives me so much control over what is happening.

Thanks for sharing your story and for fighting to conquer diabetes and all the bad things it throws at you. You sound like me, just too stubborn to let it win! Keep up the good work and good attitude.

Donna

Posted on Fri Feb 28 01:59:20 GMT 2014

Thanks for sharing! I am 50 and have been t1d for 28 years. Blessed health is my hope for you!

Rick Mims

Posted on Fri Feb 28 16:31:14 GMT 2014

I too have been a T1 going on 56 years. Now 60 and have only had a few problems with my eyes and still have 20/20 vision. Never really took good care of myself in early years, but did take my shots everyday.
Have been on an insulin pump going on 5 years and now have the 530G system. It's nice to see at a glance where my BG is and can be an aggravation with Low Alerts. For me, trying to keep your BG in a normal range and still having an active life, exercise and work, I find myself struggling with going low often. Thanks for your story fighting diabetes. I have lost a brother to diabetes, and have 4 more siblings battling with it.
I know a cure would be nice, and I would love to try and enjoy getting up every morning not having to check my BG, count Carbs, take Insulin, and repeat this process 3 more times a day before falling to sleep.

Rick

Joel

Posted on Fri Feb 28 17:06:15 GMT 2014

Thank you for sharing your experience with us, Rick. I am very sorry to hear about the loss of your brother, and the frequent lows you experience. Please let me know if you’d like me to connect you with a member of my team to see if we can help.

Myra Shoub

Posted on Fri Mar 07 13:08:17 GMT 2014

I was diagnosed in 1978, after feeling terrible since autumn 1977. I started on the Minimed 502C in August 1985, even before the pump was marketed and distributed on the East Coast. An employee on vacation trained me and I trained some of the staff at New York Hospital! Except for 4 years, I have worn a Minimed / Medtronic ever since. I have been wearing a pump longer than I lived without one. This is longer than my best D-friend (who I convinced to get a pump the same year), because she passed away from complications this year. I feel grateful I am walkin' and talkin'. Thanks to pumpie.

Joel

Posted on Fri Mar 07 16:26:56 GMT 2014

Hi Myra. Thank you for sharing your story with us, and putting your trust in us for all these years. I am sorry to hear about your friend passing, but happy to hear you are doing well on insulin pump therapy.

randy

Posted on Sat Mar 15 07:26:57 GMT 2014

I would like to be able to get on the newest pump but have been told medicare want pay for the new est pump and sense I am blind and live bymy self I know the new pump would keep mefrom going to low in the early morning, no matter what you do it will either be high or low. the new pump would have kept me out of er 6 months ago. I have been told so many different stories that don't know who to belive.one says if doctor says I need it then they will and then the pump guy says I want ever get it.
I have ried to get other insurance but seems I can not get tht either, when they ask questions like have you had a heart attack.or you will have to wait till you reach 65 to try again.how was a blind guy to know that he missed the first time around sense they said oh you had to apply 60 days after you got disabled.makes me so mad, when I do things in my location to help others by given my time for emergency e-comm a non paying job that can't get paid for.and member of a Rescue squad for over 25 years that is also non paying.
I work the radio to help out.
some one please give me a straight answer
Randy

Joel

Posted on Mon Mar 17 17:55:56 GMT 2014

Thank you for reaching out to us, Randy. I will have someone from my team contact you. Please keep in mind that successful operation of insulin infusion pumps and/or continuous glucose monitoring systems requires adequate vision and hearing to recognize alerts and alarms. For more information, please visit www.medtronicdiabetes.com/importantsafetyinformation.

Scott K. Johnson

Posted on Mon Mar 31 06:38:51 GMT 2014

Thanks for sharing your story, Kitty!

Charlotte

Posted on Mon Jun 16 20:47:29 GMT 2014

Thank you, Kitty, for sharing your story.
I'm just a 45 year T1D person, and I long for a cure. Became totally blind after I'd been diabetic for about 15 years, when I was in my mid-twenties. Since then, I've worked hard to have good control. I've worked for over twenty years, had several dogs helping me around, and take bazillions of blood sugars and shots.
So why haven't the insulin pump companies figured out how to add a simple boice over command program? Clearly the technology exists. Take a note from the Apple primer. Every single iPhone...straight out of the box...has an accessibility feature that can be set on or off. Not on a "special" phone. On every phone.
And that's for something that doesn't save lives and protect people from dangerous low and high blood sugars.
Come on, folks! Let me have a tool that will extend my life to 75 years of T1D and beyond...in good shape from great blood sugar control!
Please...pretty please.
Charlotte
p.s. More than 20% of the diabetics responding here have been totally blind. I just counted those who mentioned that they had the disease. 2 out of 6, I think. Hmmm...33%. Wonder if there's a market for a voice synthesized IP / CGM system for diabetics with vision impairment?

Joel

Posted on Mon Jun 16 22:30:43 GMT 2014

Thank you for sharing your story and suggestions with us, Charlotte. We hear you and understand your concerns. At Medtronic, we’re committed to improving our products and services to better serve all those who might be able to benefit from the therapies we offer. However, due to regulations I’m not allowed to comment on any future products but I’ll be sure to pass your feedback along to our product development teams. If there is anything else I can do for you don’t hesitate to let me know here or email me at loopblog@medtronic.com.

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