Welcome back to our periodic Partner Follies series here at the 'Mine, in which we feature guest posts by spouses, partners and loved ones of PWDs (people with diabetes), sharing their POVs on having diabetes in their lives.
Please welcome Steve Johnson in Indiana, who's been dating a longtime type 1 for the past seven years. His girlfriend was diagnosed more than three decades ago, and early this year she took a chance on trying Afrezza inhaled insulin. That has turned out to be life-changing, Steve says, and we're excited to hear the couple's #RealWorldAfrezza story here today.
A #RealWorldAfrezza Guest Post by Steve Johnson
My girlfriend Magaly was diagnosed at age 10 with type 1 diabetes, experiencing all the frequent symptoms you hear about -- constant thirst, frequent urination, weight loss, and lethargy. Her memories of the event have become clouded over the years, and the life of a diabetic has become so ingrained in her psyche she doesn’t remember much of a pre-diabetic life.
We met seven years ago on Match.com, something we used to hide with stories of a meeting orchestrated by friends of friends. Until our friends met our friends and it didn’t make sense anymore.
I am a cancer biologist and she is a claims manager at Anthem in Indianapolis. We worked across the street from one another for more than 10 years but it required technology to bring us together. To be honest, I probably wouldn’t have had the nerve to talk to her if we had met several times during the course of those 10 years.
Once we started dating, I became aware of her diabetes very early on in our relationship because she used an insulin pump, and I was aware of what a pump was from a diabetic friend of mine. Looking back I realize she was reluctant, and perhaps even embarrassed, to tell me she was diabetic even though it wasn’t her fault in any way. She was embarrassed by the pump in times of intimacy, but I wasn’t the least concerned by it. As a scientist I naïvely believed it wasn’t a big deal, and that the wonders of science had conquered this terrible disease and diabetics lived normal lives thanks to those wonders of modern medicine.
Over the course of our first few years together, I became aware of just how challenging the life of a diabetic is. I saw her change her pump site so many times (every three days) that I am sure I could do the entire process myself, as complicated as it seemed at first. I became acutely aware of the signs and symptoms of low blood sugar -- clammy cold sweats, and high blood sugars with lethargy and dazed distant eyes. Anyone living with a diabetic for any time has experienced those scary lows where their eyes become distant, dark and scary. For me, these events were far enough apart that I would forget the exact procedure for injecting her with a glucose shot in the event of an emergency, and I would always ask for a refresher course the next day on the procedure.
I would say over our seven years together we would have roughly two scary events like this per year with her last such event being the scariest by far.
I rolled over in the night to pull her close and realized she was in a pool of sweat, and I woke her with some effort to encourage her to get some orange juice. When she got out of bed her eyes were so dark and her face so gaunt and pale that it literally shook me to my core and I realized for the first time just how dangerous these event truly are. Her blood sugar that night dropped to 38 and I will never forget it.
Magaly is one of those people who does all the right things. She works hard, takes care of her family and friends, and is counted on at work to meet her obligations successfully.
Out of naivety, when she would casually mention her endo visits and her A1Cs of 7.5, 7.8, 8.0, I just thought this was normal and she was doing well. I would ask her what her doctor said and she would say he told her she could do better, but again I thought this was all very normal and she was doing great. It wasn’t until I started to explore new diabetic treatment options that I really began to educate myself on the long-term prospects for diabetics, and understand that A1C’s of 7.5-8.0 were in fact causing her long-term damage that would show itself in the years to come.
We have never been anything resembling activists regarding diabetes. In fact, Magaly will tell you that the last thing she wants to do is both deal with diabetes all day and then talk about it at night. I have heard her many times say with some exhaustion that she just wished it would go away and she could take a diabetes vacation.
For many years I was very reluctant to chime in or to look for opportunities to be helpful or proactive in the Diabetes Community believing that it really wasn’t my place. Only recently, have I both found a cause I believe in and understood that I am in fact a true part of this D-community.
During the course of my search for better treatments, I became aware of a fascinating man named Alfred Mann and a new type of inhaled insulin that he spent more than a decade developing, called Afrezza. He recently passed but was, without doubt, one of the great geniuses of our time. Among his accomplishments: he invented the cochlear implant and the pace maker, and founded the insulin pump company Minimed that was eventually acquired by Medtronic.
Now, in my opinion, his greatest advancement in insulin therapy since recombinant technology (insulin of the 80s) was utilized to produce human insulin on a massive scale.
As a scientist I was instantly intrigued by the unique properties of this new insulin and became excited to introduce Magaly to this treatment as a way to improve her health.
She tried Afrezza and has been using it during the past 10 months. Her A1C’s have improved greatly -- 7.4, 6.9, 7.0 -- and we hope to be able to use it into the future.
Recently I have successfully convinced Magaly to begin using a CGM monitor (with great effort) to improve her A1Cs even further. I say with great effort because she really disliked her pump and being tethered to it 24/7. After experiencing the freedom of being pump-free she was reluctant to go on the CGM. Now, I am almost obsessed with watching her blood sugar levels on my phone and texting her to suggest that she may need to correct before she gets out of range.
I’m convinced that this treatment (Afrezza + Tresiba + Dexcom CGM) has the potential to change the lives of PWDs.
I have become her voice in the Diabetes Community relaying her experience with this treatment, selfishly to ensure her health by trying to ensure the survival of Afrezza as a product, but also because I truly believe that any diabetic I influence to start this treatment will live a longer, happier, healthier life.
Often, I post her results and experiences on Twitter and recently began to relay these experiences on TuDiabetes. I look for opportunities to help others transitioning to Afrezza to do so successfully.
We received a lot of help from other people with diabetes online when we transitioned. Seeing first-hand the amazing effect Afrezza has had on Magaly’s treatment, I am often confused and infuriated with the reluctance of doctors to prescribe Afrezza and insurance companies to cover it.
In the 10 months since Magaly has been on Afrezza, she’s not had one scary low!
We no longer keep OJ in the refrigerator, and to be honest I don’t even know at this point where her glucagon shot is. Her time in range is amazing, and we can see that now on her CGM all the time! Without a doubt, her quality of life is greatly improved. Not only has she not had one scary low since starting Afrezza, she has not had one insulin roller-coaster day, which used to happen to her frequently on regular insulins, and her A1C has dropped almost 1 full percentage point.
As everyone with diabetes knows, each person with diabetes is different and one size never fits all. Often one size fits in the morning, but doesn’t at night. Personally, we think Afrezza is a great choice and anyone considering it should reach out and ask to at least try it out.
We are passionate about this product and believe it has the potential to change the diabetes landscape, and prevent so much suffering at the hands of this difficult disease.
Currently, Magaly is having probably her best year as a PWD since her honeymoon year. She has grown accustomed to her CGM and is happy she is using it. We are amazed at how much we have learned about her blood sugar and the way her body responds. With Afrezza she is able to quickly correct any high she may have, and has had some amazing days with nearly complete time in range, 70-150. We learned that she has a tendency to spike after breakfast and we never knew it. We are now successfully combating this peak, which is great. Her CGM has also revealed that she has a tendency to drift low at night, so we’re switching to a basal dose in the morning rather than at night to see if we can tackle that.
Another interesting, but not surprising finding, is that when we are out with friends socially she needs to be much more aggressive with her Afrezza. When we are out people don’t ever even ask about Afrezza and they must just think it’s an asthma inhaler. Even our friends seem not to even notice when she takes it.
For the first time since I have known Magaly, she is excited about the control she has and optimistic about a long and healthy future. She can monitor her BG in real time and easily stack her dose without worrying about fighting a low for hours on end, or waiting for hours to bring down a high.
We are excited about our future together and all the plans and dreams we have together. With her improved health we are positive we will get to do everything we want for many years to come, and believe it or not, she recently said she can’t wait to see what her next A1C is going to be!
Thanks for sharing your story, Steve! It's wonderful to hear how Afrezza's been working for Magaly and the potential it may have for other PWDs.