Diabetes Advocate Kim Hislop: An Inspiration Even During Kidney Failure
One of many beloved friends in the Diabetes Online Community was longtime type 1 advocate Kim Hislop, from New Hampshire. She was a DiabetesMine Patient Voices winner at one time, just after she'd received a kidney transplant from her mother-in-law in late 2013. The 30-something New Englander was diagnosed with T1D in the late 1990s as a teenager, and would go on to be an inspiration and true friend for so many within our DOC -- even in the face of several diabetes complications, including retinopathy and kidney failure.
Through it all, Kim kept an inspirational outlook and was determined even in her final weeks to continue traveling the world as she'd always done. Personally, I met Kim at the Diabetes UnConference and knew her online, as well as sharing a passion for The Walking Dead TV show. I was just a fan of the show, while she took it to another level with a deeper fandom, taking part in regular visits to the Walker Stalker Con event and a zombie-themed cruise.
All of that helped her stay happy, meeting with celebrities and even inspiring others to become organ donors.
In her final months before passing in June 2019, Kim was kind enough to share her journey, in hopes that her story could help motivate possible donors and help others cope, especially anyone touched by diabetes.
An Interview with Kim Hislop During Kidney Month
Hi Kim, as always, can we start with your diagnosis story?
KH) I was diagnosed in 1997, at the age of 15, during a sports physical. The nurse came into the exam room and asked if I could give another urine sample because the first showed high sugar. After testing the second sample they asked that I do a fasting blood test the next morning. At the time, my family and I thought maybe I would just need to change my diet and activity level.
A few hours after I went for the blood test, my doctor's office called and said they had set up an appointment with an endocrinologist for me the following day. Again, no one seemed too concerned. As soon as I entered the exam room at the endo's office a nurse gave me a shot. My parents asked what was happening and the doctor simply said, "You don't know? Kim has type 1 diabetes." I am the only one in my family with type 1, though both my paternal and maternal grandfathers were type 2.
Did you embrace your diabetes from the start, or go through that denial and rebellion phase like many teens do?
Since my diagnosis, I have participated in many fundraisers for diabetes research and programs. But I struggled, a lot, during the first 12 years living with it. Due to what we call "deniabetes," I suffer from most complications. Once I took back control of my life, I teamed up with a CDE and was asked to speak to pharmacy students at Massachusetts College of Pharmacy on the patient's perspective on the complications of diabetes. The success of that lecture has led to other opportunities to speak at several CE courses for NP's, Nurses, and Pharmacists. I was also the Northern New England JDRF branch's Fund A Cure speaker in 2011. I also had a kidney transplant in 2013 and now advocate for people signing up to be organ donors.
Can you talk about that kidney transplant experience?
I ended up with renal failure and needed a new kidney to survive, or else I would've been on kidney dialysis. My transplant was on December 17, 2013, and it was my mother-in-law who donated her kidney to me (which made the TV news!). From the very beginning, she was the only person who went through the process to be evaluated for a match, and she was a match and was healthy and able to donate. That typically doesn't happen; you see all these stats about all the people who are waiting for transplants and how so few transplant surgeries actually happen... so it's crazy that this person, my mother-in-law, said they'd do it and it worked out. I don't think I'll truly ever really understand how lucky I am!
What about the transplant process itself? Was that scary?
The actual surgery itself went well for me, and the kidney function has been amazing. I struggled after the surgery, mostly because of the medications, and was in the hospital five or six times after that for a total of 30 days after surgery just for all the medication issues. The meds are very harsh on your system. But by the following summer, I had started to feel more normal and the function was great. Better than I'd been in a long time.
But then in 2017, I started experiencing problems and went into kidney rejection. That damaged my transplanted kidney, and led to kidney failure and dialysis. I started dialysis in March 2018. That treatment was so hard to go through.
It's tough to imagine living on dialysis and the toll it must take...
I tried to put on a brave face. The truth is... I've been tired. I’m still surrendering to the notion that I am sick. I push myself so much because the truth is I am afraid that there will come a time that I can no longer do the things I love, but it is taking a toll mentally and physically on me. Most days I feel positive but there are days I feel the hope slipping from my hands. I think it is just part of this journey.
I don't want to be depressing, it’s just been a really tough year. I always try to be glass half-full. If anything, I want people to learn that life is amazing -- even with complications. And I’m not done living.
Despite all of the complications and struggles you've endured through the years, you have traveled quite a bit across the globe... where have your adventures taken you?
Boy, I've been traveling since high school and all through my life, and can't even count how many places I've gone -- Russia, Greece, Austria, Switzerland, Africa, the Caribbean... so many places. I'm thinking about 20 different countries. I love experiencing other cultures and seeing whatever I can. I'm an adrenaline junkie, really I am. Now that I've had the transplant, I haven't been able to travel overseas and I feel like I'm going through withdrawal.
That picture of me with a cheetah was in Numidia, on the West Coast of Africa in January 2013. What prompted that was the news the summer before that I was going into kidney failure, and the best course of action was going to be a transplant. My aunt had been sailing around the world for years and was in Africa at that point, and so I looked at my husband and said, "That's where I want to go." So for two weeks, I was there. I got to pet a cheetah, after we went to a place that is like a cheetah farm and a man had three he'd domesticated and were living in his backyard. We paid $20 to camp there and got to pet the adult cheetah, and watch him eat.
I also absolutely love dolphins and have been swimming with them in a couple of locations, and got to kiss one in the Dominican Republic.
Overall, my diabetes has not stopped me from traveling, even though yes I do take extra precautions.
You've also been pretty active within The Walking Dead fans' "zombie community"... Can you talk more about that?
Yes, that has changed my life. I have my own little family there. Some of the best moments have been the Walker Stalker Cruise, which is where you get to go on a cruise along with some of the celebrities who've been on The Walking Dead show, and the show-themed conventions that happen around the country. Through these experiences I've had a chance to meet so many people, including actors Norman Reedus (who plays the character Daryl) and Jeffrey Dean Morgan (who plays Negan). One highlight recently was getting to meet James Frazier, who started a themed podcast and puts on the Walker Con conferences, and thank him in person for this incredible event that has changed my life. Some of my awesome cruise family have told me they're going to be tested to see if they match to provide a donor kidney.
I also have a friend who is a special effects make-up artist, and she did my makeup to look like a walker... and I got a photo with Jeffrey Dean Morgan! I had him autograph it, "Half your kidneys belong to Kim" -- which is a fun spin from the show referencing a key line where half of characters' stuff belongs to Negan. It's all truly amazing.
With everything you've gone through, it sounds like you've certainly found your advocacy voice...
I tend to be very judging of myself and when it comes to the complications I've gone through. But I want to be more inspirational, and I really believe you have to have a positive outlook. Are you going to crawl into a hole and not live your life? No, absolutely not. I'm really proud that I've managed to turn my life around and managed to take care of myself with all these complications. It's super important to talk about complications, to know that you don't have to blame yourself and feel guilty because of complications.
In honor of Kidney Month in March: For those interested in learning more about how you can help with kidney and organ donation, here's the federal government's Organ Donation and Transplantation site. You can also register online to become an organ donor, as well as check the box to do so at your local DMV branch office where you live.
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Originally published at DiabetesMine on March 26, 2019