Days like today

On days like today I have a difficult time thinking of things to blog about.

I get up in the morning and take my meds – it’s just routine. I don’t take time to think about why I’m taking them or what it means. I don’t even consider checking my blood sugar. I get up, I go to work, and I kind of take my health for granted. On days like today life is mundane, and there isn’t a whole lot going on in the portion of my brain that thinks about diabetes, doctors, and islet cell transplants. It doesn’t make for exciting blog post, but I have to admit that I sort of like days like today. Being free of managing diabetes is, after all, the main point of this journey, isn’t it?

Amy
-Insulin free since 2006

How having my islet transplant saved me from cancer.

When I had my transplant, I had a hematoma (bleeding) on my liver. I’m often reluctant to write about it because I don’t want people considering an islet transplant to reconsider based on just my story. I’d do it all over again, but I’m going to be honest here. It hurt. It hurt a lot, and as far as I know it wasn’t even a very large hematoma. It was just pushing on things that, well, hurt. It made taking a deep breath difficult, and I joked that every time I ate and my stomach expanded, my liver hurt. I was also anemic. I had a blood transfusion, a CT-scan and a bunch of ultrasounds to monitor it, but not much else needed to be done.  It just needed time to heal.  I was in the hospital for a week and then my partner and I stayed in the Chicago area for a few weeks before going home.

In 2006,  I was living in an apartment that had plenty of electrical outlets in the hallway, but not enough in any other room so we frequently charged electronics in the hallway. A few weeks after I got home I was walking down said hallway when an electrical cord reached out, wrapped itself around my ankle and tripped me. Of course it happened that way. I was totally paying attention to my surroundings. You can believe me because when I landed, I landed directly on my liver. I didn’t try to stop myself, I didn’t curl up and try to protect my already sore abdomen,  and I didn’t do anything to prevent injury. Nope. I just fell flat forward. I was relieved that I didn’t hit anything hard with my face, but I re-injured my liver. A few days later I was back in Chicago for a routine clinic visit (yeah, dummy here didn’t bother telling anyone I fell) and I was readmitted to the hospital. I don’t remember the exact number but my hemoglobin level was close to 5. (Normal for a female of my size is around 12.)

Just a side note – when you’re in the hospital and you’re pacing the floor because you’re bored, but “Your hemoglobin level is 5, get back in bed!,” nurses will FREAK out.

While I was admitted, I had multiple abdominal CT scans. During one of the scans they unintentionally scanned my chest and part of my neck. A few weeks after I got home, I was asked to come back for an ultrasound and needle biopsy of my thyroid. A nodule had been found on it, and it was uncertain what kind. The needle biopsy was also inconclusive, so it was decided that my thyroid should be removed. I had already had half removed 15 years before due to a benign tumor. I assumed the results would be the same.

When I had my thyroid gland removed and biopsied, there was a benign tumor. There was also a small amount of cancer.  My entire thyroid was now gone so there was no need for further treatment.  Since then I’ve have regular blood work and neck ultrasounds to make sure it hasn’t returned. I was diagnosed and cured all in one day.

Maybe my liver hematoma experience wasn’t fun, but as a result I think I might have one of the easiest cancer stories ever.

-Amy
Insulin free since 2006

Let me tell you a secret.

I haven’t told many people this. Honestly, I think maybe one or two people know. The reason I haven’t said anything is because even I think it’s a bit odd. For the first six months or so after I had my islet cell transplant, I slept with my insulin pump. It wasn’t connected. I didn’t have insulin in it, or even a battery, but there it was tucked under my pillow like a security blanket. I think that’s exactly what it was.

I had my pump with me 24/7 for four years before my transplant. It went everywhere I went. I never took a break. I rarely disconnected it for more than an hour. It was a part of me, so when I no longer needed it I didn’t know how to wrap my brain around the fact that it was gone. If someone said to you, “You don’t need your lungs anymore,” I’m pretty sure you’d think, “Wait, yes! I do need those to survive!”  Well, I’d been told for 25 years that I needed external insulin to survive and my pump was the thing that provided it. I was not prepared to lose that piece of myself that identified as a pump wearing, insulin dependent, type 1 diabetic.

I appreciate not needing insulin. Right after my transplant, I felt happy because I didn’t need my pump, but it took me some time to get used to not feeling chronically ill. Once I adjusted to the immune suppression meds and felt well again, I didn’t know how to be normal. You see, I didn’t know what normal felt like physically or emotionally. For a while, things were a bit confusing for me. I never expected to feel an emotional loss for a disease I desperately wanted to get rid of for as long as I could remember. Diabetes and all the emotions that came with being a diabetic had been so familiar to me for so long time that I didn’t know how to let it go. Eventually, I got used to not worrying when my next low or high blood sugar was going to hit me over the head. I realized that feeling thirsty might mean that I needed a drink of water and not a few units of insulin. I had to be told more than once that even normal people get low blood sugar if they go out and exercise without eating. In short, I had to relearn what normal felt like. It was difficult to accept that normal was a part of my life now.

So after about six months of sleeping with it under my pillow, I put my pump in a small box of mementos that I’ve kept from my childhood, and I moved on. I know it’s still there, and I guess that’s good. Someday, if I ever need insulin again, I’ll take it out and look at it before ordering one that’s not 14+ years old. Even though I don’t think I’ll use it again, I doubt I’ll get rid of it. I keep it now not because it feels like a security blanket, but because it symbolizes a part of who I am and serves as a reminder of how far I’ve come.

-Amy
Insulin free since 2006

Normal tastes great!

Today, for breakfast, I had a giant fruit smoothie.  It had two bananas, a plum, a handful of grapes, a handful of black cherries and orange juice. To say it was high carb would be putting it mildly. I never would have eaten anything with that much fruit in it in one sitting before my transplant. I checked my blood sugar two hours later and it was 86. It still amazes me. I don’t think I’ll ever be one of those people who takes normal glucose control for granted. I will forever be grateful to everyone who helped “functionally cure” me from my type 1 diabetes.

To all the scientists, doctors and donors who helped me – thank you from the bottom of my liver. You’re the best!

-Amy
Insulin-free since 2006

How my islet transplant affected my vision loss

At age 25, I had diabetes for 15 years. In the 90’s staying on your parents’ medical insurance after college wasn’t an option, so I went a few years without medical insurance.  To say it was difficult is an understatement. I was working but uninsured. My employer provided insurance but back then if you had a pre-existing condition they could say you weren’t insurable, so I went without insurance. Nph and Regular insulin were both available over the counter so I used those. I didn’t have blood work done, and I didn’t go to the doctor. When I finally got a job with a company large enough to offer me medical insurance, I found a primary care physician, went to an endocrinologist and saw an ophthalmologist. He told me I had the beginning stages of retinopathy and cataracts. I was told they’d watch it, but nothing needed to be done yet.  By the end of that year it had gone from something that needed to be watched to proliferative diabetic retinopathy. I started having periodic laser surgeries to control it’s progression.

One morning, after having already had multiple laser surgeries, I woke up and couldn’t see out of my left eye. A blood vessel had broken and bled inside my eye partially blocking light and images from getting to the retina. A few months later, one blood vessel broke in my right eye. It was decided that I need to have a vitrectomy to remove the blood. The blood, part of the vitreous, and some scar tissue that had built up on my retina were removed from my left eye. The blood in my right eye was left to reabsorb on it own, and for the most part it did.

Over five years I had 23 eye surgeries. Two years later, I had cataract removal, one more laser surgery and then I was diagnosed with glaucoma. When I had my last laser surgery, I decided I was done. With each laser surgery I had, my eyes became more sensitive and it took longer to recover. My vision was continuing to get worse even with treatment and tight blood sugar control. I didn’t want to go through any more surgeries. I decided that I could live with low vision if it progressed to that point.

When I found the Chicago Diabetes Project and the islet transplant program at University of Illinois Hospital & Health Sciences Systems in Chicago, I wasn’t thinking about my vision. I had hypogylcemia unawareness and that was my biggest concern. Since I had my transplant though, my vision has stabilized. I won’t regain what was lost but it hasn’t gotten worse. The swelling in my retinas, which is common with retinopathy, is now gone.   The cataract in my right eye hasn’t gotten worse and neither has my glaucoma. In my 20’s I was told I’d most likely be blind by the time I was 40. I’m now 46 years old. I’ve got blind spots and I have a 90 degree field of vision when most people have 180, but most people I meet have no idea that I’ve had any vision loss. I can see, and I appreciate that so much.  Sometimes, it’s the things you don’t think about that sometimes impact you the most.

-Amy
Insulin-free since 2006

Summers without insulin

I’ve spent my entire life living in Michigan.  If you live near the great lakes then you’re never far from a river or a beach, and in Michigan you’re never far from a park with camping or woods with trails to hike.  Spending time outside is what has always defined summer for me.  I love the sun and the heat. I even like the ridiculous humidity we get here, but the things I like about summer can also be a source of frustration for people who take insulin.  It’s something you learn to deal with.

Having functional islets made me realize how much you learn to adapt when you’re on insulin and need to take it with you.  I started making a list of things I appreciate about having functional islets in summer, not all of them are heat-related.  Many of them apply to winter activities too, but summer is my favorite time of year, so for me, that’s when it applies most.

Here are my top 6:

  1. I no longer have a backpack full of medical supplies and snacks I bring with me to the beach, or hiking.  Well, I probably bring snacks, but I don’t HAVE to!
  2. I don’t need to bring ice packs along to keep insulin and pumps cool.
  3. There’s no more worrying about connecting and disconnecting an insulin pump every time I go swimming , and where do I leave this $5,000 piece of medical equipment while I’m out there?
  4. I don’t have to test my blood sugars every hour to make sure the extra activity hasn’t sent my blood sugar low.
  5. There is no more sweating until my infusion set doesn’t stick and needs to be changed or using duct tape as a last resort to make it last a few hours longer.
  6. My favorite is no longer feeling sick and exhausted from dehydrated because I’ve been out in the sun and my blood sugar is higher than it should be. That didn’t always happen, but when it did, it wasn’t fun.

I could go on all day, but I won’t because even with the added prep needed before my transplant,  I liked being outside in summer. I realized how much more I was going to enjoy it that first year after my transplant, when my partner and I got lost hiking in the woods and we didn’t have to worry about anything but finding our way home.

There are so many things to appreciate about being insulin free and I am so grateful for all the private donations that the Chicago Diabetes Project raises. Without these donations my transplant would not have been possible – right now the transplant procedures through the clinical trials and its research are fully funded by money the CDP raises. (So please support them!)

It’s usually the little things the average person doesn’t need to think about that I appreciate the most.

Amy
-Insulin free since 2006

Because Dads are important in this fight too!

dad and daughter charcoa2

Dad and Daughter, charcoal on paper

In 1983, I was in 8th grade. That year science was focused mostly on physiology, anatomy and disease which meant eventually we came to a point where my science teacher talked about diabetes.  I think it was one of the most infuriating days in my academic career. My teacher pointed me out to the entire class and told them that the reason I had diabetes was because my mother fed me too much sugar when I was younger. He told them not to eat candy or they would get it too. When I disagreed with him, he countered with something along the lines of “Well, if your mother didn’t then you must have been sneaking it.”   When I told him that the kind of diabetes I had was autoimmune he brushed it off and said it was too complicated to get into those details. Then he proceeded to tell the class that they shouldn’t let me eat candy around them. I was horrified, embarrassed and livid.

I told my mom about it when I got home from school.  She very calmly told me that some people will always remain ignorant no matter what you say. Because she was so angry at the time, that was all she said to me about it while I stomped off to my room to be a typical furious teenager.

The next day, I was called out of a different class to go down to the principal’s office.  When I got there, I could see the principal, my science teacher, and my dad behind the glass wall of the office. I thought “Oh no, I’m in trouble for sassing the teacher.”  When the door opened, I heard my dad with his teeth clenched speaking in his  “You’re in so much trouble that I can’t even look at you” voice, and then he started yelling at my science teacher.  Dad was great at the wind-up when he scolded us kids – it started out with quiet fury, with just a hint of calm behind it and when he was done yelling at you, you wanted him to go back to the scary fury with which he started out. I was glad I wasn’t on the receiving end of it that day, but in all honesty, I kind of felt bad for my teacher too.

The result of that meeting was that my teacher apologized to me for singling me out, and I was told I could give a report on the differences between Type 1 and Type 2 diabetes in science class. I also learned that day that my dad was one of my biggest assets when it came to some of the things in the outside world that kids with diabetes need to battle.

Dad only showed up two other times to school when it came to defending my diabetic honor. Those were equally as embarrassing and horrifyingly awkward because I was a kid.  As an adult, I now appreciate that he stood up for me when I couldn’t. He was also the best at giving insulin shots when I asked him to, and he never once told me that I couldn’t do something because of my diabetes. These things are priceless, even if you don’t appreciate them until you’re an adult.

So in my Mother’s Day post I wrote about how my mom taught me to never stop learning, and never give up.  My dad – he taught me to stand up for myself. When you have a chronic illness sometimes it can be one of the hardest things to do when you’re faced with people that don’t understand the disease. It goes back to those questions people ask me time and time again about why I had my transplant. I’ll be standing for my decision to do this no matter what life throws at me.  I have to thank my dad for teaching me how to do that.

-Amy
Insulin free since 2006