"Welcome to Type 1 Diabetes!" and Other Pregnancy Updates

"Welcome to Type 1 Diabetes!"

This is the sentence my endocrinologist told me today when I went in for my check-up. Up until now, my sugars have really made sense for the most part, but not anymore! Now my sugars will spike up after a meal and then plummet over a matter of 60 minutes or so. For example, yesterday afternoon I ate and took my normal amount of insulin only to find myself at 200 two hours after my meal (not the number you want to see), and then an hour later I was 60 with no signs of low blood sugar.

Apparently, this is what being a type 1 diabetic is like. Let me say, I'm glad I'm not a type 1 diabetic. I am SO frustrated with these sugars because I have no idea where they will be at any given time, and I'm not symptomatic when I'm low anymore. 

So we increased my bolus rate yet again, and I see her in two weeks to make sure that my sugars are still doing okay. She said overall I'm doing "phenomenally" which made me feel good, but I still hate seeing these high numbers!

31 weeks and starting to feel like my belly is starting to grow again

In other news, I'm 31 weeks tomorrow which means only 7 weeks remain until I meet my little girl. Where on EARTH did time go? I've been fighting the overwhelming fatigue of third trimester + cystic fibrosis. Most days all I want to do is sleep, and I usually indulge myself in this (I still do treatments, eat, and try to walk a bit). Surprisingly, I felt great yesterday (which also happened to be my husband's birthday) so I went to the store, did some cleaning, and made dinner.

Well that was a mistake.

I think I took all that awesome energy for granted because I started having Braxton Hicks every five minutes for about an hour before they finally went to every 10 minutes after drinking plenty of water and keeping my feet up. I had my doctor appointment today, and I noticed that if I'm on my feet (even today) more than ten minutes at a time then the contractions start coming back. Makes me a bit nervous, but I've got my high-risk OB appointment tomorrow so I will be sure to ask him about it.

I also have CF clinic tomorrow, and quite honestly I'm not expecting much as far as my lung function goes. I'm struggling now, but not in a "chest infection" way..just because baby is getting bigger and bigger.

So with all of that, I guess tomorrow is a big day which will help me (hopefully) feel better about these contractions. I'll be sure to update soon. 

CFRD appointment and Ultrasound

Today was an interesting day, that's for sure.

I had my endocrinologist appointment to discuss my CFRD (my regular doctor is back from maternity leave now, so I wanted to see her).  She was actually really happy with my numbers and said she wasn't concerned at all about getting them under control during pregnancy. We came to the conclusion that during pregnancy, I will be put on an insulin pump so that I don't have to worry about wanting to eat at anytime during the day.  But for now, I'm going to continue what I'm doing and add the most minimal amount of NPH (long lasting) insulin as possible at night time.  Hopefully this will help control my overnight high.

Then, she told me she had bad news.  She's leaving the hospital to move to Atlanta.  I promise you that I was almost in tears. I love this doctor and I feel like she really grasped CFRD and worked well with it, and now she's leaving.  She will put me back with the previous doctor (whom I didn't necessarily care for) at the end of November when she leaves. This was my last time seeing her...and I'm very saddened by this.  I'm sure it will all be fine, but once you build a rapport with a doctor, you hate to see them leave.

After that, I went to get an ultrasound done since my high-risk OB wanted a baseline to have on file.  I ended up having to have both types of ultrasound which is not the most pleasant experience.  Then, when the ultrasound tech had spent about 10 minutes on one area I asked her what was wrong.  The problem, she said, was that she couldn't find my right ovary.  Well after fully looking for 5 more minutes, it was determined that my right ovary was nowhere to be found on my right side.

The last ultrasound I had, due to a 5 cm ovarian cyst, showed that my right ovary was on the left side.  I told her that and she proceeded to look, but couldn't find it there either.  Instead, she saw multiple cysts in my left ovary.

So with that said, I'm not sure where my right ovary is or if it even exists in my body, and it looks like my left ovary is a little screwed up.  This could be why I'm not ovulating, and I have a feeling I might be visiting my high-risk OB or infertility a little sooner than expected.

CFRD is . . .

CFRD is way too confusing!

Let me begin by saying that cystic fibrosis was never an adjustment for me because it is all I have ever known. I was diagnosed at birth and I've always popped pills, inhaled drugs, and been beaten on (so dramatic sounding, isn't it?) by a person or a machine. It's just my normal routine - nothing odd about it.

Cystic Fibrosis Related Diabetes (CFRD) is a whole other ball game.  It has been, by far, the biggest adjustment in my life.  I have gone from eating whatever I want, to (wrongly) carb restricting myself, to finally starting insulin all while my sugars bounced any which way they wanted. 

With the start of insulin, my sugars have been great 2 hours after meals (usually 130 or below).  However, come three hours after, my sugars will rise to 160 or higher.  It's like my body digests so slowly that the insulin doesn't last long enough to cover my food.  But then come the following morning, I will eat breakfast, be 160 two hours after and 60 three hours after.  Needless to say, it's been a confusing juggling act. 

With my sugars acting like this and trying to start a family, it's obvious I needed to get in to my endocrinologist.  She, however, is on maternity leave, which meant seeing another doctor for the day.  No problem, right? Sure, if I had a normal case of diabetes, but unfortunately, I don't. . . .

Let's start by saying that our drive up to University of Chicago was easy and beautiful. It was a crisp Autumn morning, traffic was light, and we even found a parking spot. I had high hopes that I would get some answers at this appointment today, given our streak of good luck this morning.

View from the parking garage at U of C

Sadly, that was not the case.  Instead, I spent the first half hour of my 45 minute appointment explaining CFRD and how I have to just adjust for whatever I eat.  There's no 2000 calorie diet here and milkshakes are good for me.  I then proceeded to explain how CF effects digestion and the liver as these were both questions she had.  I understand that not every endocrinologist is a specialist in CFRD but it doesn't help your confidence level as a patient when you are explaining your disease to your doctor.

I'm actually used to this, as I'm sure other cysters and fibros are as well.  When you head into an emergency room or see a general practitioner, you become a teacher and the doctor becomes the student.  It's not done by choice, but it has saved my butt more than a few times. With this disease, you have to be your own advocate. That's for sure.

Anyway, after explaining all of this to her, she says, "I'm just not really sure what to do here." And I stare at her, like a deer in headlights.  A million thoughts are going through my head and most of them are similar to, "But you're a DOCTOR! I need your ADVICE!!"  She then proceeds to tell me that I'm on such little insulin she doesn't want to tweak it too much and while she thinks I may benefit from a long-lasting insulin, I also have lows so she doesn't necessarily want to put me on that. She then says, "I mean, I don't need your doctor coming back and I messed up her patient."

Again, more staring on my part.  I wish I could have offered some brilliant suggestions to her here, but I am so confused with my sugars that I have no idea what to even suggest.  So we just kind looked at each other, nodding heads, unsure of what to do in the awkward silence. 

She then adjusts her papers and goes, "Well let's get an A1C and go from there. I'll call you in a week or so with a plan."

Ok...well that was a waste of 6 hours, 10 dollars in parking, 5 dollars in gas, and a copay. I still have no idea what to do with my insulin and I feel stressed that I'm not able to get help with it either.  I'm sure glad I kept my appointment with my regular doctor in October...hopefully she'll be able to guide me in the right direction.

Gaining Weight. . .

Gaining Weight . . . slowly but surely!

For the first time that I can ever remember, I am weathering a sickness without losing weight!!!

Honestly, this is a huge success for me!! Every sickness I have had has been accompanied by a decent amount of weight loss, but not this time around!

In fact, last night as I jumped on the scale before my shower, I clocked in at 115.0 which is awesome because fully clothed I don't even normally clock in at that. I weighed myself after putting on PJs and I went up to 116.8!!!!  Sorry for all the exclamation marks but this is huge!

I went through one spurt of growth in college where my weight got up to around 120 but then dropped it quickly after realizing I was diabetic which led me to restrict carbs to stay off insulin.  Other than that, my weight has been an issue since the day I was born. 

I remember being in high school, 5'4" and weighing in at 97 pounds.  Now, in high school I was so concerned about my body image that I didn't tremendously worry about this weight. Even so, I was eating everything under the sun, just not putting on the weight. Now, if I drop below 105, I'm freaking out.  It's funny how perspective changes as you get older. 

So now, my height hasn't changed but my desire to gain (and keep) weight surely has. When we got back from our Disney vacation at the end of July, I was about 107 which was partly due to water loss while we were down there.  So from the beginning of August until the beginning of September, with the help of insulin and milkshakes, I have managed to put on about 8 pounds.  I'm beyond ecstatic!!

So today, as I head off with my family to an outdoor end-of-summer, beginning-of-fall festival, I will enjoy eating a deep-fried twinkie or deep-fried snickers bar to celebrate my gains :) I mean, it's only appropriate, after all! :)

My biggest pregnancy concern...

The title is a little misleading because I have a LOT of big pregnancy concerns.  Obviously, above all I want my baby to be healthy and there's a lot of concerns that go into this desire.

I obviously worry about my lungs and potential infections, but even more so right now is my diabetes. I'm worried about my sugars being too high/low for the baby and causing it harm.  I recently started the insulin so I'm still getting it slightly under control. I've started off only taking 3-4 units with a meal and eating really high-calorie meals since weight is such a problem for me. The problem is, with the insulin my sugars stay elevated for a few hours after dinner. So, I'm not sure what my endocrinologist will say about this. I don't see her until October now since she is on maternity leave. She had given us her blessing before having the baby but I feel like I'm missing a piece of my support system without seeing her recently.

Not sure if I should go see a different endocrin. in the mean time or just wait for her to get back...hmmm

Labor Day Weekend, Nausea, and Crazy Temps

Happy Sunday everyone!

I hope everyone is enjoying their three day holiday weekend! The hubby and I had a wonderful time up at Lake Geneva with our family, even though it was a very short trip.  I didn't, however, think we were going to ever make it up there between packing, loading the car, and the unfortunate incident about an hour into our trip.

When we pack for trips, my hubby always makes me go through a mental checklist as to ensure we have everything.  So I went through my checklist, four times in my head, confident I had everything we needed.  So we scurried out the door, put on some favorite tunes, and started singing loudly as we made our way to Lake Geneva. After making two wrong turns (courtesy of my poor directing skills and unfocused brain) we were finally headed in the right direction - still singing away and happy until . . . I realized I left my nebulizers at home.

Had I left a medication or an article of clothing or toiletries, we could always pick those up.  Instead, I leave one of the only things we can NOT get anywhere else.  So, an hour into our drive, we had to turn around and grab the nebulizers from the house. It wasn't terrible, but it meant missing dinner with our family which made us upset.

Other than that drama, the weekend was great and I even purchased some yummy caramel corn with pecans.

  Mmmm!!

Now onto pregnancy related things. My doctor made a strict deal with me. She was fine with our TTC as long as I gained 5 pounds. I am 4 pounds of the way there, thanks to the addition of insulin, which I did NOT want to start but realized I would have to use with a baby anyway so it seemed silly to put it off any longer. Up until this point, I had been managing my sugars with diet and keeping my A1C at 6.0 or around there which is great, except I wasn't putting on any weight. So now, in two months time I am up almost five pounds and enjoying foods like caramel corn and milkshakes, which I haven't enjoyed in a couple years.  Well, last night I had a scare with my new insulin program.

I took my insulin, prepared to sit down and have an awesome meal (Mac and cheese with a caramel apple..yes I love caramel).  All was good until I smelled the food and then felt like I couldn't take a bite or I would upchuck it everywhere! I ate slowly, feeling sick with every bite but I managed to get it down. It did, however, make me nervous about morning sickness with insulin. If I can't eat, or I throw up, then my sugars are going to bottom out. Definitely a question for my endocrinologist at my next appointment.

So, I was nervous but the nausea stayed at bay until today at lunch time. We got home and when I walked into the house, a certain smell triggered a wave of nausea again. My dear hubby thinks I'm crazy because he has a cold and can't smell anything. Well, it passed and we sat down to eat another big meal (more insulin) and sure enough, I thought it was all going to come up again.  Then, as soon as I smelled dinner tonight, I thought so again.

Now despite the fact that it's way too early for nausea, I was getting myself excited thinking it could be a pregnancy!! However, my BBTs (Basal Body Temps) haven't even indicated that I've ovulated yet this cycle. I had one day of higher temps and then it fell right back down to around 96.8 and has been hovering there for the last few days. So as much as I want to get my hopes up, it seems like it's just a stomach flu of some kind.

I'm thinking it's going to be awhile until I get my dear AF also because my BBTs are so low, even though I'm on day 28 of my cycle. It's irritating because now I don't know when I will be "late" or when to expect anything. This charting thing is harder than it sounds, that's for sure.  I guess the only thing to do is keep trying all the way until my temp spikes and hope this nausea goes away very soon because it sure is disrupting my days!

My CF Journey

I promised that I would further detail my CF mutations and journey - so here it is.

At birth, I had a few complications which led the doctors to test and ultimately diagnose me with cystic fibrosis.  I am so blessed for this early diagnosis because it meant I was on medications and being watched from day one. 

When I was first diagnosed, we were only aware of one mutation Delta508.  The other, at that point, was unknown and therefore I was re-genotyped last year.  We found out that my second mutation is also Delta508.  Why it didn't pick it up the first time, we don't know, but ultimately what that means is that I have the most common gene mutation out there.

I was hopsitalized once at age 5 with a sinus infection but nothing lung related.  Other than this minor hospitalization, I was a pretty normal kid for years.  I ran outside and played endlessly, loved school, loved reading, loved learning (Ok, so maybe I was never normal).  I did my nebulized treatments with few complaints until I reached the age of 14.  Suddenly, high school hit and I didn't want to be "abnormal."  So, the treatments were done sporadically - only when I felt I needed it or more realistically, when my parents made me do them. I firmly believe this is why, at 17, I found myself hospitalized with double pneumonia and bronchitis.  I ended up in the hospital for weeks and came home on a PICC line for 2 more weeks. 

You would think this would have been a huge wake-up call for me, right?  Well, in some ways it was and I did start doing my treatments more often, but due to my desired invincibility, I still was not 100% compliant with them.  At this time in my life, being 100% compliant meant doing my vest (a machine that helps loosen the mucous out of CF lungs by vibrating them) two times a day, nebulizing albuterol sulfate two times a day, and nebulizing pulmozyme one time a day.  Total treatment time was an hour a day.  I felt, at this young age, that was simply too much to do.  And when my post-PICC line PFTs were back up over 100%, I saw no reason to be completely compliant. 

By now, it should be clear that I've been blessed and God has been taking care of me day in and day out because I certainly wasn't taking care of myself.  This struggle continued into college where I still just wanted to feel normal.  My sophomore year of college, however, my relationship began with my now-husband, and suddenly everything changed.  We had been friends from freshman year on, but as soon as we started dating, I felt as if there was a purpose to my life - a reason to live, if you will. 

Instantly, I became more compliant.  I wasn't 100% compliant from the first date, but it wasn't long after that.  Now, I only miss a treatment if there is no choice (for example, if we are on the road for 12 hours at a time).  In fact, now, I keep trying to add more treatments or additional exercise to keep myself as healthy as possible.  It's a total shift from the way I was just six or seven years ago!  Unfortunately, my treatments aren't just an hour long anymore, but it's worth it in the end. 

In addition to my treatments, I also have to manage CFRD (cystic fibrosis related diabetes).  I recently have started on insulin to try and put weight on me to prepare my body for a pregnancy. My FEV1 (the indicator number of how well us CFers are doing) is 81-84% It's far from the 100% I used to have when I was younger, but it is still really good. The only way to keep it up this high is to continue with all my treatments.  With that being said, here is my typical day's schedule:

6:30 AM: Check sugars and eat high-calorie, high-fat breakfast (Can't just pour a bowl of cereal anymore...)
7:00 AM: Albuterol Sulfate nebulized, Hypertonic Saline nebulized, vest for 20 minutes
8:30 AM: Check sugars again and eat morning snack (which actually looks more like a lunch...)
9:00 AM: Do nasal irrigation rinse (These help tremendously with sinus pressure)
11:00 AM: Check sugars again and eat lunch
12:00 PM: Second treatment.  This time, vest by itself for 20 minutes
2:00 PM: Albuterol inhaler
2:05 PM: Checking sugars and eat if sugars are low
2:30 PM: Exercise for 30 minutes
5:30 PM: Check sugars, take insulin, eat large dinner (usually 1000-1200 calories)
7:00 PM: Second nasal irrigation rinse
8:00 PM: Third treatment.  This includes, albuterol sulfate nebulized, pulmozyme nebulized, and vest for 30 minutes.

This is my current schedule.  In another 20 days, I'll be back on Cayston which adds an additional 3 nebulizers a day (granted, these only take 2 minutes each). 

It's a lot to get in to a single day and if I get a cold or any illness, I add in a few more vest treatments.  While I do a lot of treatments, there are other CFers who do way more than I do every day.  I am blessed!