Archive for the ‘endo visits’ Category

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Worst patient ever

October 4, 2010

Last week, I came home to a large white envelope sitting on our doorstep. I looked at the mailing label, which had my full legal name. Whoa, I thought, this must be important. The return address confirmed it: Rady Children’s Hospital in San Diego.

My medical records from diagnosis through high school were in this envelope.

Requesting my records had always been at the back of my mind, but I was never sure that they were still there (since a lot of hospitals destroy old patient records after 7 years or so). Finally, Chris urged me to get them, saying it couldn’t hurt to try– but he also said, “But don’t get your hopes up, just in case they’re gone.” I called Children’s Hospital and talked to a cheerful lady in the Records department. Imagine my excitement when she said, “We don’t destroy records.” HOLY SMOKES!

So now, here they are, after having traveled across the country. It’s a thick packet, about 100 pages, of my [very bumpy] journey with type 1 diabetes. There were things in there I already knew (such as my bg at diagnosis: 327), but the things that interested me the most were the clinic notes.

Those were really hard to read. I saw myself go from a totally compliant 9-year-old girl to a monstrous teenager who didn’t give a shit about good control. Hey, other teens did drugs, drank at parties, had unprotected sex…me, I fudged my blood sugars. I keep telling myself it could have been worse. :P

I found all my lab values and made a timeline:

07/08/1993 – 14.8 (a little over a month after diagnosis; I have no record of getting an A1c taken at diagnosis, so this is the closest one)
02/24/1994 – 11.8
05/19/1994 – 7.5
08/11/1994 – 8.9
09/15/1995 – 7.6
12/14/1995 – 8.5
05/24/1996 – 8.3
08/30/1996 – 7.8
11/22/1996 – 7.9
02/28/1997 – 8.3
09/19/1997 – 6.5
01/30/1998 – 6.4
08/07/1998 – 7.7
04/23/1999 – 9.9
08/27/1999 – 8.2
03/17/2000 – 9.8
06/09/2000 – 9.4
10/27/2000 – 11.8
06/01/2001 – 9.9

Seriously, WTF was I thinking? 11.8?! I fluctuated so much during my teen years…maybe it was a reflection of my raging hormones?

And on the WTF front, I thought I was being so slick testing a billion times the nights before my endo’s appointments, changing the date and time on my meter with each test (Mom and Dad, if you’re reading this…remember, I was 16!!!). I wasn’t fooling anybody: “She certainly has a marked discrepancy between her home glucose testing and her A1c values. What is quite remarkable in looking at her home glucose values is that there is very little deviation of her glucose readings around the average value at any particular time of day. This is quite unusual to see such a small spread between the highest and lowest numbers even on someone who is taking multiple daily injections. I would be a little suspect as to the validity of all these measurements.” AY!

My other favorite comment was: “We do not have any log books today, as Faye reports that she ran out of log books since it has been such a long time since her last visit.” Right, because I couldn’t buy a notebook myself, or even better, use a piece of paper?

Perhaps one comment that kind of struck me as weird (now, at least) was from the dietitian. I remember not being too fond of her; I guess the feeling was mutual: “She has had difficulty with compliance issues and is not maintaining as tight a control as we know she is capable of.” It’s funny because now, I think I’m pretty compliant, and working harder to get my A1c as low and stable as possible.

It was interesting looking back at the first 8 years of being diabetic. Even though Chris was the one who encouraged me to get my records, I’m a little hesitant to let him read them…I’m ashamed at what the last few years held. He said, “It’s okay. You were a teenager. The important thing is that you realized the importance of good control, and you’re doing a good job now.” :) I was glad he said that, because honestly, I was starting to feel like I was the worst patient ever at Children’s Hospital!

To end this post, here’s a picture of me at my First Communion, about a month before I was diagnosed (also the skinniest I’ve ever been in my life):

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Retinopathy and a good A1C

September 14, 2010

About six months ago, my optometrist found a cotton-wool spot in my eye and advised me to see a retina specialist. I slightly freaked out, but Dr. P assured me that it was harmless and it was a very common side-effect with those who have had diabetes for as long as I have. (I use the term “side-effect” rather than “complication” because it’s not quite a complication yet, but I’m hoping it won’t get to that.)

I asked my boss if he knew anyone, and he referred me to Dr. B. Dr. B specializes in the retina, and more specifically, he specializes in diabetic retinopathy. My first appointment with him absolutely freaked me out– he said he wasn’t worried about the retinopathy (“It’s normal for someone who’s had diabetes for 17 years”) but saw something else he was more concerned about. He told me to go upstairs to see Dr. T, a neuro-ophthalmologist, right away.

At this point, I was starting to have a panic attack. WTF was going on with my eyes?? You never get referred to another specialist that quickly unless something is wrong.

Turns out the nerves in my eyes are swollen. Dr. T said she couldn’t be sure if it was just how I was born or if it was truly a problem, so she scheduled me for an MRI (those things are freaky as hell, btw). The results ended up being that everything was fine, that’s how my nerves really look. Fat nerves, I guess.

Fast forward to yesterday, to my six-month follow up with Dr. B. He didn’t seem to agree with Dr. T’s assessment of the MRI scans. Then he said, “There is a little bit of hemorrhaging, but it’s hard to tell if it’s because of the diabetes, or because of your nerves.” He called it a pseudo tumor…and of course all I heard was TUMOR.

“Wait, what?! I have a tumor?!”

He assured me that it wasn’t a real tumor; that’s why they called it a pseudo tumor. And I thought, “Holy crap, can you call it something else?!”

Dr. B said that, at my next appointment with Dr. T, I needed to have a talk with her to see what was going on, what’s in the future, and what I should be doing.

So here’s my dilemma. One doctor says I’m okay; another says I’m not. One doctor is telling me that it’s hard to tell what’s going on with my eyes because of another problem. The other one is saying I’m fine. Who do I believe?

I saw my endo today and gave her an update on yesterday’s events and a quick recap of what happened six months ago. She agreed that the two conflicting opinions was a little strange, but everything seems okay otherwise. I don’t have floaters, or random flashes of light, or blurriness (aside from the blurriness due to my craptacular vision).

She also mentioned a study that I found kind of ironic: if a person goes from a high A1C and suddenly goes to a good one, it actually makes retinopathy worse. Makes no sense, but it is what it is. I told her that prior to going on the OmniPod, my A1C was in the mid 8’s. Six months after I switched, my A1C was 6.9, then it dropped to 6.5, hung out at 6.2 for a few months, and my most recent one is 6.1.

We’ll keep monitoring it. I’m hoping this really isn’t a serious issue, as both ophthalmologists are looking out for different things, but it’s really bugging me that two experts have conflicting assessments. Maybe I need to get a third opinion?

That being said, my endo visit today was a LOT better. My labs are good, my A1C is great (I’m still pushing for under 6, but hey, I’ll take 6.1), and everything is going well on the Ping. I do have a lot to work on in terms of getting in shape and losing weight before it’s time to think about a baby (and piling more weight on my body), so Lord help me with that. For some reason I think it’s easier to work on a stable A1C than it is to lose weight! O_o

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Endo visit, spring 2010

June 13, 2010

I paid my endo a visit this past Friday, and the visit went well as usual. We did some tweaking to my basal rates, since I’ve been experiencing this weird spike around 9am and drops around 4pm. I joked and said I go high in the morning from the stress of going to work and low in the afternoon because I’m about to leave work.

So far, so good on the basal changes. Yesterday was just a strange day in general, with my blood sugar bouncing all over the place for no apparent reason. I bolused and drank juice more times than I care to count. Felt like I was chasing a crazy toddler all day and night.

On the A1C front, I’m not sure how I’ll be doing this time around. The last one I posted had me at 6.5, but that was a while ago. Since then I hit the magical 6.0, but in March of this year I was up at 6.2. Bummer, but my doc said I’m doing well. Looking at CGM graphs always freaks me out because of those unexplainable spikes, but hopefully everything will even out.

To end on a happier note, here’s a picture of two things that make me happy: diet Snapple and the DexCom. :)

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Endo Visits

September 17, 2009

Today, I had my quarterly appointment with my amazing endocrinologist, Dr. Carrie Burns (of the Penn Rodebaugh Diabetes Center). I was excited to show her my CGM results and Kevin spreadsheet. We ended up tweaking some basal rates to tighten up control. Okay, not exactly rocket science, but it was good being able to see what was needed when, rather than playing a guessing game.

I also got my blood drawn for the good ol’ A1C. Side note: the lab tech was good; it only took her one poke! I’m curious to see what my A1C is like; since the last visit with Dr. Burns, we’ve worked on cutting out the crazy lows. I’m fully expecting it to go up (I had a 6.9 last time), but she said “I’d rather have you at a stable 7.2 than a crazy 6.9 any day.” Ditto! Now to work on the postprandial spikes.

We also touched on the topic of preparing for pregnancy, as the CGM is my first step in all this. Thankfully, Chris and I have three years before all this, but it’s never too early to prepare. I need to start tightening up (and I mean REALLY tightening up; none of this “holy crap my bg is 268 an hour after a meal, but let me to do a super bolus and be low an hour later”).

Oh, and here’s an interesting twist in my Ping vs. OmniPod decision: an hour before my appointment, I had a few units left in my pod and decided to change it. Well, it errored out during priming…with 200 units in there! UGH. That’s the second time in less than a month that happened. Again, I don’t mind losing a pod, as Insulet is very good at replacing them, but losing that much insulin hurts. Dr. Burns was on board with my switching over to the Ping, so hopefully that paperwork will get rolling very soon.

All in all, I love visiting my endo. I never feel judged, no matter how whack my numbers have been. That kind of doctor-patient relationship is priceless.