Friday, June 29, 2012

Politics and Diabetes

As many of you have read, the new Health Care law was upheld by the Supreme Court yesterday.  Although I am traditionally very conservative in my political opinions, primarily for national security purposes,  I cannot help but breath a major sigh of relief that the law is being upheld for the time being.

As it currently stands in the United States, insurance companies can refuse insurance coverage to any one with a "pre-existing condition." This means that if a patient demonstrates medical necessity for continuous coverage ($$$), many insurance companies will not provide coverage and therefore leave the cost of self-care entirely to the patient.  If you haven't picked up on the implication thus far, type 1 diabetes is considered to be one of these pre-existing conditions.

On one hand I completely understand why insurance companies would look at patients like me and want nothing to do with the cost of supplementing my pancreas...  Several months back I did an estimate on the out of pocket cost of operating my insulin pump, using test strips and regular (every 3 month) visits to the endocrinologist and I was shocked to learn that I could be spending up to $6000 per month just to stay healthy and ultimately alive.  I was at the pharmacy just last week refilling my test strips and the price per box of 50 test strips (lasts me five days or less) is $130 each... that racks up to $800 a month in test strips alone without insurance.

Fortunately, when I was diagnosed in January 2011 I already had full coverage under my HB's insurance provided by his employer and we are fortunate enough to have a high deductible plan which leaves us several thousand dollars of costs up front but free coverage after the deductible is met. Needless to say, we meet our deductible in under a month so that currently works out beautifully in our favor.

The problem comes in that if my husband were to change jobs for whatever reason without the new health care law fully implemented, I will be unable to get insurance through his new employer because of my diabetes.  Although I can currently thank God for the secure financial position He's placed my family in, the implications of non-coverage for the one member of the family requiring regular medical care significantly impacts the financial future we can provide for our children.  I can do without the fancy house, vacations and whatever other luxuries, but I can't accept that in the worst case scenario we'd be making choices like saving for GW and Baby to go to college OR refilling my artificial insulin.   Absolutely unacceptable.

Much still depends on the election this November on whether the bill will continue to move forward toward implementation in 2014 or not.  So, even as a registered Republican, for very personal reasons I'm casting my vote for Obama in the ardent hope that this discriminating exclusion of "pre-existing conditions" wont affect other people who find themselves in my unexpected position in the future.

(Plus, for whatever it is worth, this extremely security conscious American thinks Obama has actually done a better job than I expected in 2008 and I also think Michelle Obama is a miracle worker in fighting the epidemic of childhood obesity and type 2 diabetes).

Thursday, June 28, 2012

The Idoitic nature of diabetes and exercise.

One of the primary issues that I, personally, have with my diabetes is the fact that I lead an active lifestyle.  I expect that concept may be especially hard to wrap your head around for those of you who are more familiar with type 2 diabetes, however to those of us dealing with type 1 this irony is all the more frustrating.

Without the pregnancy factor, diabetes creates many issues for exercise because of the body's use of glucose for fuel.  When we exercise, our body burns whatever sugar is in our system to keep us moving and when it runs out of excess glucose it then turns to burning fat for fuel.  In a diabetic body, however, when the body runs out of glucose to burn and swaps to burning fat, the remaining active insulin in your system (which is working far more efficiently because of your exercise by the way) has nothing to counter-balance its effects. This means that you become hypoglycemic... I'm sure everyone has heard of someone or another passing out as a result of exercise, this is as a result of that imbalance of insulin to glucose-fuel.

That being said, prior to exercise a diabetic has to get their blood sugar up high enough (pre-pregnancy I'd ideally shoot for the 180s-190s) to counter balance this fuel usage and insulin efficiency.  I've found that if I get my sugars up high enough for a run that I can typically run about 2 miles before my sugars are back into the 70-80mg/dl range.  If I wish to run more than 2 miles (which I typically do), then I must ingest even more sugar.   When I ran my half marathon back in December I consumed four 12 oz water bottles of orange juice (12 oz of oj has roughly 57g carbs) - aka a ludicrous amount of sugar - in order to complete the 13.1 miles and my blood sugar still went low after the race was over (56 mg/dl).  Good thing they had food waiting for me, eh?

There is a huge community out there of type 1 athletes struggling with their blood sugar's impact on their individual sports.  Fortunately it is not a be-all, end-all problem and we each seem to come up with our own ways to balance insulin dependence and activity.  I've been quite inspired by several many of the endurance runners who blog about their experiences and the challenges they've faced... I'm hoping that I'll be able to step up and do a marathon at some point and join the ranks of the serious "insulin powered" runners.

Unfortunately, for the time being, I've been benched.  Exercise during pregnancy is already restricted to some extent (whether women listen to their OB's advice or not is another topic), but insulin dependence and pregnancy significantly restricts what exercise is safe.  There are two main factors I now must consider:

  1. To start with, as I mentioned previously, I cannot let my blood sugars get too high during pregnancy without running the risk of causing damage to the baby.  So instead of letting my sugars get up to 180 like I did before, I have to keep them at or under 120 mg/dl which means that hypoglycemia as a result of exercise is far more likely to happen and far more quick to happen than previously.  
  2. On top of that, I cannot let my heart rate go above 140 beats per minute or exercise for more than 30 minutes at any given time.  This is because the oxygen my heart and lungs require to function at higher heart rates would deprive the blood going to the baby of necessary oxygen which, worst case scenario, could a) deprive the baby of oxygen or b) cause the temperature of the womb to rise enough to cause the baby distress. 

Obviously, I feel that fetal distress and birth defects are worth skipping the extra mile of running or sit up, but that does come with a different set of knock on issues.  Like I said in my initial blog post, I've been struggling with the "fat girl" identity since high school and the concept of putting on weight (pregnancy-induced or not) is very uncomfortable for me.  According to my perinatologist,  I've put on an appropriate amount of weight so far, but with such an intense insulin usage I cannot control the excess weight gain as a result of my exercise restrictions... In order to get my sugars up high enough to work out, I typically must ingest about 130 calories of carbs (ie: 8 oz of milk or 5 starburst or 3 oz of soda, etc) and in the 30 minutes of approved exercise time I can typically burn only 160-200 calories due to the heart rate restrictions I must adhere to.  Anyone who can do basic math here can see that the number of calories ingested to number of calories burned don't tend to work out in favor of weight management.

HB argues with me that the action of exercise is worth the effort even if the purpose of exercise isn't achieved... I admittedly can see his point in terms of heart function and continued active lifestyle, however the frustration of balancing diabetes, pregnancy and exercise is enough to make any type 1 woman who is given a hard time about excess weight gain come to tears.  In any pregnancy - high risk or not - doctors recommend gaining between 25 and 35 lbs because that is all that is necessary for the baby, but more insulin means more glucose storage and more glucose storage means more fat and more fat means higher weight... not exactly an easy cycle to wrap one's head around.

I know that pregnancy is ephemeral and with the help of Sean T (by the way, I LOVE HIM) and a half marathon or two I'll be back in my original fighting shape after the baby is born.  Between now and then I'm not sure how I'm going to find a balance to the sick-cycle of insulin and weight gain, but I expect I'll have a few emotional break downs and extremely self-conscious moments about my weight.  I will need to keep reminding myself that "the baby comes first" (obviously) and that a more simple day of balancing "just" diabetes and exercise is at the end of the tunnel.

So I've made the announcement...

As of this past week, everyone who knows me personally should know that I am expecting baby number two.  My husband and I are very excited about this and can't wait to meet "Baby" (our name for him/her) later this year!  My due date is December 11, 2012.

The thing about this pregnancy, unlike the first one, is that this go around I am diabetic.  I can't tell you why or how my body's islet cells continued to function properly under the stress of pregnancy back in 2009, but the reality is I will never have a "normal pregnancy" again.  From here on out, all pregnancies I may have are considered to be "high risk" due to the elevated probability for birth defects and other complications caused by insulin dependence.

To be completely honest I've spent much of the past year and half since my diagnosis worrying about the implications of pre-existing diabetes to my subsequent pregnancies.  I've done quite a bit of extensive reading on the topic to arm myself with the knowledge necessary to make the most informed decisions about building our family and I feel like I've formed the best possible medical team I can for my location to help me get through it.  It still scares me to think that my body can harm the precious thing growing in me, but all I can do is be aware of my own actions and what they mean for the baby.

Comprehensively explaining the complex biological issue of diabetes in pregnancy is best left to the professionals, but for those who are curious the most basic implications are:

  • Poor blood sugar control (an HgA1C above 6.0) at the time of conception is likely to cause birth defects in the first trimester as this is the time when the baby's major organ systems (particularly the nervous and cardiovascular systems) are developing.
  • As the pregnancy goes on, the placenta acts as a sponge for insulin and makes the mother's body not only insulin dependent, but insulin resistant as well.  This means daily insulin requirements can double or even triple just to be able to control the body's glucose response to hormones and ingested carbohydrates. 
  • Poor blood sugar control in the second and third trimester causes the baby's body to increase insulin production and therefore the storage of glucose.  This means that the baby will be putting on extra weight to protect itself from hypoglycemia and can result in an overly large (10lb+) baby.  
While there are definitely factors of this short list that can be greatly expanded upon (what defects are probable, which tests are done, what all this means for delivery, etc), I will only be writing about what I experience in this pregnancy here rather than the laundry list of possibilities.  The take away from this list, however, should be that tight blood sugar control is CRUCIAL for the mother to have well before conception and during the pregnancy to ensure the best probable odds for her baby's safety.

That being said, my husband (HB) and I worked extensively with my medical team for five months prior to conception to get my blood sugars under tight control and to get all aspects of my medical profile up to best possible condition before adding the complication of pregnancy.  I got my HgA1C down to 5.2 (the best number I have had yet) and, God willing, that number reduces the risk of diabetes caused birth defects to normal pregnancy standards.  In order to maintain this reduction in risk, the doctors have given me a ceiling of 120 mg/dl or less for my 2 hour postprandial blood glucose readings... which FYI is wicked tight control.  So far, I'm doing pretty well by testing 10+ times a day and my numbers have been relatively consistent in the 65-120 mg/dl range with the occasional unexpected high reading.  I will say though, my insulin usage so far has gone from roughly 18 units a day to about 45 units a day... we'll see what my ratios and numbers are as the second trimester wears on and the placenta begins to work its oh-so-unappreciated-magic of insulin resistance.

One thing I am really enjoying about being diabetic at this point is that I get a sonogram almost every appt.  With GW (my son) I had four ultrasounds throughout the entire pregnancy, but at only 16 weeks along in this pregnancy I've already had four and expect two more in the next month or so.  By the third trimester I can expect bi-weekly sonograms and stress test to check in on the baby, so I know he/she is in good hands and I am thrilled that I get to see the development a bit more closely this go around.

The final thing that I think ought to be shared at this point (more to follow over the next several months of course) is that because of the third point listed above, the doctors will not be allowing me to deliver the baby after 39 weeks of gestation (first week of December).  This means that based on what they find with the ultrasounds in that final trimester, they will either schedule me to be induced or (if necessary) to have a c-section before the baby is full term.  Ideally the baby will stay put as long as possible, but we'll just have to wait and see what happens come November. (I am secretly hoping for a Thanksgiving baby, just don't tell the Doc on call for that day... ha).

 All for now.  I head to the doctor tomorrow again tomorrow, so I'll report back soon on how Baby is doing.

Wednesday, June 20, 2012

My diagnosis

In December 2010, amid finals for graduate school and extensive family drama I began to loose weight uncontrollably.  I'd been doing Sean T's Insanity work out program for about five weeks and thought that it was going exceptionally well, but the changes happening with my body started to seem like more than pure cardio...  I was drinking water by the gallon, using the bathroom every twenty minutes, eating whatever I could get my hands on and, quite literally, wasting away into thin nothingness.  

Don't get me wrong, I am constantly fighting to rid-myself of the fat-girl mindset that has gripped me ever since my overweight high school days.  Back then I weighted in around 200 lbs and for the past several years I have been - medically speaking - in range of my ideal weight and perhaps a bit low on the body mass index.  But when the scale began to read three to five pounds lower every day and my weight sank down to 115 lbs (ideal weight calculators say I shouldn't weigh less than 135 lbs) I knew something had to be wrong.   My husband and I even experimented to see if I could gain weight one Saturday night and I ate an extra large supreme pizza, half of a sheet cake and three pints of ice cream with ease... the next morning my weight was down four pounds.  So I put a call into the doctor Monday morning fearing the worst but wanting an answer.  

Let's get the embarrassment over with and
on my terms.  Me Summer 2002.

After the lab work was done and xrays were completed, my husband and I anxiously waited for a prognosis.  Eventually we heard back that my labs conclusively showed that I have diabetes.  Unfortunately, the initial doctor we saw wasn't well versed in the intricacies of the pancreas and he made the assumption that because of my age (24 at the time) I must be a type 2 diabetic.  He sent me home with a prescription for medication that would cause weight gain, a basic test kit (without showing me what to do with it) and a recommendation I take diabetes education classes the following month.  Ignorantly feeling relieved I didn't have anything "serious," I accepted the general diagnosis and went home. 

It wasn't until the next day that the pieces of information the doctor gave me seemed to ill-fit my situation. I'd been left completely clueless as to what being diabetic meant and questions began to overwhelm me...  My lifestyle is very active, I eat well and I am otherwise healthy, so how the heck can I be type 2? How do I use this test kit and what the heck do the results mean? What is it that I am not supposed to eat?  You want me to spend how much on 30-days worth of weight gain pills?!   Um, no. 

Instead of waiting the five weeks for the class I was told to take, I decided to call my God Mother in Colorado who - thank God - is a diabetes nurse educator and the mother of a type 1 diabetic.  Gingerly she walked me through, step by step, the process of checking my blood sugar... I pricked my finger, held the test strip to the blood and waited for the reading to appear on the screen.  But my first reading didn't come back as a number.  I told her I must have done it wrong and tried again.  It said the same thing.  

"What does it say, sweetie?" She asked. 

"It just says the letters 'HI'," I responded. 

"Honey, that means your sugars are high.  Find the instruction manual and tell me what ranges the kit reads to."

Not knowing what it meant to have her say that my sugars were "high" (yes, the doctor skipped over all of that information), I dug through the book until I found what she requested.  

"It says that it reads up to 460 mg/dl,"  I said. 

"Jaime, I don't mean to scare you, but you need to go to the hospital right away.  Don't eat anything, take your test kit and go there now.  Blood sugars that high are very dangerous and it sounds like they have been this high for a while, you need to get to the emergency room."

"Uh, okay..." 

Advising me to go to Georgetown University Hospital in Washington DC because of their national reputation in endocrinology, my husband and I packed up our son, cancelled our evening plans and went on our way.   

At the hospital I felt like I'd walked in with a gushing gun shot wound based on how quickly the staff responded to me saying "newly diagnosed diabetic" and "blood sugar over 460 mg/dl."  Within a few short minutes I was on a gurney, getting new labs, attached to an IV drip and officially diagnosed as a type 1 - NOT TYPE 2 - diabetic.  

Using unfamiliar phrases like "hemoglobin A1C of 11.6," "ketones," "hyperkalemia" and "diabetic ketoacidosis" to describe my situation, the doctors explained in no uncertain terms the severity of my situation and the probability my pending admission to the hospital would be to the ICU.  I quickly found out that if I hadn't come to the ER for treatment, I likely would have gone into multi-system organ failure within weeks and very possibly could have died as a result of the damage.  

Well that explains why my God Mother told me to go to the ER, eh?  

My stay at GTU Hospital lasted four days and it was in those 96 hours that I got a crash course on the impact diabetes would have on my life:   I learned that the islet cells in my pancreas were attacked by my immune system, but there is no way to know why... I learned I would be dependent on artificial insulin via injection or pump for the rest of my life...  I learned that I must count carbs to stay healthy and that nothing should enter my body without knowing its carb content...  I learned what it meant to test my blood sugars and that I'd need to do it at least 5 times a day, preferably more...  I learned what consequences my body may face if I don't take care of my diabetes...  needless to say, overwhelming and scary. 

It's been a year and a half now since I left the hospital and started to actually live life as a diabetic.  I'm on an insulin pump now and that makes life much easier than four-five injections a day, but even with the convenience of automated insulin-delivery I am still amazed by the pervasiveness of diabetes in my general existence.  It affects so much more than what and when I can eat... it impacts when, how and if I can exercise, what clothes I can wear and how I wear them, whether or not I can do simple tasks like drive a car or take a shower, and - most disheartening to me -  it impacts the safety of future pregnancies.   

For a die-hard foodie who loves to run and wants several many kids, talk about a one two punch to the pancreas!  

But such is life and, hypothetically, God only gives us what we can handle so I must trudge on and work on acceptance.  It's definitely not the end of the world, but life with diabetes is hard, it is complicated and it is often very misunderstood.  In the following blog posts I will be focusing on the challenges I face as a diabetic as they arise and we'll see where this takes us.  I'm hopeful that my rambling will help the people in my life understand my situation and help dispel the erroneous assumptions associated with this unavoidable, incurable disease. 

Thanks for reading!