Until The End… At Least

Yesterday, I had my monthly appointment with my endocrinologist. I always look forward to my meetings with him – he’s always on top of everything to do with my diabetes, knows what a data nerd I am, and he fully trusts my decisions about my diabetes as much as I trust him to help me make decisions when I can’t.

He also knows that before my pregnancy, I switched pumps within my arsenal pretty regularly. He never had a problem with it. We even laughed about the amount of “backups” I have, even though all but one are out of warranty. When I received the second t:slim replacement in April of 2013 and started using it in January/February of 2014 after the cartridge recall and continued with it for a year until it was replaced earlier this month, he was impressed that I stayed with one that long. Last week, when I finally had enough of the craziness from my third replacement, he was willing to try to help because up until then, he (and I) was under the impression that I had found “the pump”.

So, when I went in yesterday, I told them about going to my Minimed once again (for documentation purposes), but this time I showed him the Dexcom reports between the two. He was floored just as much as I had been. Just as I had thought all along, he would expect to see that if I had switched insulin brands, not simply insulin pumps – because essentially they all should work relatively the same at delivering the set amounts of insulin. But the difference I had shown worried him. He told me not to use t:slim for the remainder of my pregnancy, and to stick to Medtronic. I had told him my husband and I discussed it and we had already planned to do that anyway, but hearing that from him validated it. And, in all honesty, it shocked me. He’s always been one to trust what decisions I make and go along with what I want to try, with the exception of ONCE telling me “no” to a medication I wanted to try, and this time I had the same reaction. He had stepped in and told me not to use a pump. Part of me is in shock, but partly not. It once again reassures me that he’s allows me to do what I want with my diabetes management, as long as it is within reason, and staying on a pump that would potentially cause harm would not be within reason, and he stepped in.

I will have add to all of this, though, that I did receive a call from Tandem at 10pm about replacing my t:slim once again. Since it is in warranty, that’s what I expect them to do. I went through all of the common questions they ask for record purposes, and the representative documented my answers. The replacement t:slim will be here next week, however both following doctors orders and for my own sanity, I will not be using it until the end of my pregnancy – or a bit later once insulin needs become somewhat predictable again. I’ll already lose some of my brain cells and energy to taking care of a newborn, and I won’t want to add switching pumps into the mix. He documented also that I wouldn’t be using the replacement until after August/September, so I wouldn’t be able to give feedback until then – and to my surprise, he didn’t try to pressure me into trying it any earlier. That made me feel very comfortable. I am glad that they reached out and were willing to replace the t:slim without hassle this time. I’ve only had a couple of sub-par experiences with their tech support, and the rest of the time it’s been good, so it does help to know that they are listening.

So, out of everything that’s happened this month, I am thankful to have an awesome Endo that I fully trust and that I know truly cares, and to know that Tandem does care – even at 10pm at night.

Results Are In…

I always wait on pins and needles my A1c from my endo’s office. Since they do a blood draw to check other things as well, they don’t use one of those fancy-schmancy know-while-you’re-there machines.

Usually I check my Dexcom reading report for the past 3 months and see what the average is on that and most of the time, I can estimate my A1c myself within a few “points”. This time, it was just the same – I had an average of 141, so I estimated that I would fall right between 6.0 and 6.5 based on my lab’s scale… and I did.

a1c

6.3

Honestly, I was hoping for a bit lower, but I knew it probably wouldn’t be since I had a rough week earlier in the month with BG’s in the 300-400 range. But I’m super happy with it because it’s finally back in my personal sweet-spot area of where I like to maintain my A1c after a year of trying to get it back down.

Other things were checked as well, like my TSH and Vitamin D. As usual, TSH was in good range, so same dose of Synthroid as always. I have yet to get up the guts to ask him to run a full thyroid panel though. I really would like to know where the other levels are and also to get an answer to whether it is autoimmune or not (since I don’t have an enlarged thyroid, he won’t diagnose it as Hashimoto’s).

As for Vitamin D? Well, after having been on 12-week booster doses twice this year, he’s placing me on a maintenance dose as my levels are just barely meeting the minimum. My levels have never fallen into the “deficiency” range, but stayed between there and the “acceptable” range, so I guess you could say I’m Vitamin D insufficient.

So, that’s where we stand with all of that. Let the new 3 month countdown begin!

 

And as a sidenote: He was impressed with me for staying with the t:slim for as long as I have, and have stopped switching up so much. I told him how pleased I’ve been with it since the new cartridges, and how it seemed to have solved my problems I had with it before. Honestly, I can say that I’m a full-fledged through-and-through t:slim fan at heart. I’d probably cry if anything ever happened to it. #tslimpride

 

He Said No

This may not mean a lot to some, and some may have heard this before – quite often, even – from their endocrinologists. This is something I rarely hear from my endocrinologist – usually, if I ask about trying something new, he’s totally on board with it and sort of lets me do my own thing. I don’t think he’s ever told me specifially “no” to something I’ve asked about wanting to try (in regards to my diabetes, that is)… until yesterday.No

It was the weirdest feeling.

My hopes were sort of up that he would let me try Victoza along with my usual care plan to see if it could help “flatten” things out. I’ve seen a lot of good success stories from other Type 1’s who’ve used it and seen the graphs shared, so it had me intrigued so much more than the Symlin that I had tried before, for the simple fact that it was once a day, not at every meal. Plus, if it helped me curb my appetite, that would be even better.

But, when I asked about it, he told me no. He wouldn’t prescribe it because it’s mechanism isn’t approved for Type 1’s, whereas Symlin is simply replacing the hormone Amylin that the pancreas also no longer makes.

Part of me was upset. He’s never told me no. Hopes – gone. But then, part of me was overcome with happiness and satisfaction that he told me no, simply because it made me feel like we actually are a team and he’s not just going to give me anything I ask for. I almost wanted to hug him.

So, my quest continues for better control through things I’m learning about in Dr. Bernstein’s book and performing trial and error with what I have available to me now. (Though, I just have to interject here and say that my endo was VERY happy with my control over the past 2 weeks! And honestly, it’s not been terribly hard! But more on that stuff later.)

My Endo

The doctor-patient relationship is one that is very important to me. Not only do I like to have a doctor that I can trust, but one that is – even through all the years of his or her practice – still human. Not some big textbook-spewing robot who has medical degree after medical degree, but one who has tremendous love for what they do and the people they see on a daily basis.

My endocrinologist is one of these people. He has a passion for what he does, and it shows with every visit. Rarely do you find a doctor that is open-minded to new technologies, yet still keeps in mind the oldie-but-goodie tricks of the trade that work when the new stuff isn’t quite up to par. I know that when I go to see him, he’s going to look at my numbers and help me pin-point the problems, and make suggestions (and he even stresses the word “suggestions” when he’s writing stuff down!) as to what needs to be changed. He is also very open to hearing my opinion as to what I think needs to be done as well. He’s not a preacher-type that is all “Here, this is what’s going on and this is what you must do to fix it and you have to do what I say because I have the degree and you don’t”. He works with me.

While I was pregnant, they hired on a new endocrinologist in his office. One comment he made to me was that since he had followed me through the journey to get pregnant, he was going to stick with me throughout my pregnancy and be sure that my chart wasn’t transferred over to her, in hopes to avoid confusion. If anything were to happen, I have his cell phone number for emergency cases. He went above and beyond what I would expect any endocrinologist to do to help me have a perfect-as-diabetically-possible pregnancy. His dedication to my care throughout my pregnancy was outstanding. My fear now is that because I am no longer pregnant (thank the LORD!), he’ll allow my chart to be transferred.

Granted, I know I’m not giving the “new girl” a chance, but with me, the relationship and trust I have in my doctors has a direct impact on my care. When I was a teen and going to a pediatric endo, I didn’t see him, but rather his nurse practitioner. I LOVED her. She was more than just my medical caretaker, she was a honest-to-goodness friend to me. We talked about everything outside of diabetes in our appointments and usually only spent about five minutes discussing what to change in my treatment. She’s the one who talked me into going to diabetes camp when I was 15… the first time I had ever been away from my parents alone. If it weren’t for her being at the camp, I wouldn’t have gone. While under her care, I got my diabetes under control because she showed an honest care for me and my diabetes. She didn’t fuss or belittle me. It was because of her positive actions and care that I, in turn, cared and wanted to do my best for her, because she made me believe that I could do it. After she left, I was heartbroken. Literally… I cried for days… Begged her not to leave. (She was moving to Florida, so it wasn’t like I could just follow her across town to the “new” doctor’s office.) I felt as if I had no one else to “keep up the good work” for.

The nurse practitioner that replaced her was a joke. She was very rude and easily agitated and rarely gave encouragement. It was then that I went back to the way I was before and didn’t care about taking care of myself. I honestly didn’t see the point. It didn’t seem to matter if I were a dedicated diabetic and did everything right or if I didn’t care a lick – my numbers were bad, with no pattern, and she didn’t care to encourage me that it was going to be ok, that we’d figure it out – I wasn’t an easy-to-fix case. I guess because I, just as I am now, was an analyzer of the data being sent back to me from my meter, and if I didn’t agree with the adjustments or couldn’t get a clear answer as to their reason for their adjustments, I didn’t want to make their “recommended” change. The old practitioner understood this, and she worked with me. She would take the time to explain until she saw “the light bulb go off in my head” – because I’m not one to just trust them because they say so. After all, I’m the allowing this medicine that keeps me alive – but could kill me if dosed wrong –  to go into my system each and every day, and she understood where I was coming from if I didn’t “feel” right about the new changes. The new one? She didn’t care what I thought, she knew more than I did, and I was just being a non-compliant, hard-to-get-along-with patient.

My fear is that I’ll be dealt the hand I was dealt back then again. It took me almost 7 years to find a doctor that would, in my mind, come remotely close to being like my first nurse practitioner. My endo is such a wonderful doctor, and his manner of care has been just as good, if not better, than hers. I feel “at home” and safe with him. I don’t feel like just some stupid, non-compliant patient if my numbers aren’t great. He encourages me. Not just because he’s my doctor and is paid to do it, but because you can tell he’s the type that wants to. He genuinely cares about his patients.

He’s my team-leader. My coach. My friend.

I don’t want to give him up just yet.

17

17w2dSo, I’m 17 weeks (+2days) along now. BabyK has been moving up a little storm in there over the past week, but today he’s been quiet (I’m saying “he” only because saying “He/she” is a little weird and saying “It” just… well, doesn’t sound right). I will have to say though, music is beginning to be his favorite thing. I can sit back and sing, listen to music or even play the piano and he responds. Pretty cool, huh?

Of course, now that I know what he feels like when he moves, I get worried when I don’t feel him at his normal active time. I had to keep reminding myself Saturday and yesterday that it wasn’t my work week, so I wasn’t going to be sitting still at 10-11am for his little acrobatic movements to be felt. So I kept trying to make myself just sit in the quiet to feel him. Of course, it didn’t always work but I tried. I started to worry when I didn’t feel him this morning, but he’s right back at his little pokes now.

Later this week is my endo appointment Wednesday. It’s one that I’m kinda dreading and at the same time wanting to have because, like always, I’m scared he’ll fuss because of the highs (which he has never done since I’ve started seeing him – it’s just a phobia of mine) but I know it’s something we have got to get handled and quickly and for some reason I have not been able to successfully make my own adjustments that work. My timing for pre-bolusing is changing (some needing to be 30 minutes ahead, others needing to be only 15 minutes ahead), and I can tell my noon and supper-time IC ratios or basal rates might need to be changed as well because those are the times I’m really peaking, even though I’m coming back in range later. Lots of changes!

I will have to admit though. I am still kind of upset that the last A1c wasn’t lower. I know I shouldn’t beat myself up about it – heck, I try to encourage anyone with any A1c low or “high” by medical standards – but when it’s myself, I can’t shake it. Sans pregnancy, I’d probably be okay with it, but right now I’m just not. And I need to shake it off and get over it.

I did call today to find out pricing on the 3D/4D ultrasound from my OB’s office. Their office charges $200 and it’s not billed through insurance, so it would be out of pocket. On one hand, I would love to have it because it will be done at 28 weeks, which will be the half-way point between the upcoming ultrasound (in 21 days! woot!!) and baby delivery and it may ease my mind about how things are going and I’ll get to see what my little one looks like… and we’ll get to analyze the pictures like we did with my sister-in-law’s to see who the baby looks like more. On the other hand, that’s $200 that could go towards stocking up on things like diapers, wipes, baby wash, lotions, and powder. Not to mention to get the “fill-in” things that we don’t get at the baby showers. I’m torn… I mean, really. to the point of tears even (holy hormones, batman!). I rreeeealllly  want to see him moving around in there and see what his face looks like, but I also know that it would be smarter to save the money for the future (hello no maternity leave allowance! – one downside to working with a small business). It’s a big war between my heart and brain as to what I want and what we need. I guess if mine and Erik’s side work picks up, we may reconsider it, but the way it’s looking right now, I may just opt not to and save the money for those soon-to-be poopy diapers.

Endo and OJ

Yesterday afternoon, I made my second monthly trip to see my endo, Dr. C. I have found from the late appointments, you don’t have to wait as long, so I may start getting late afternoon appointments instead of early morning. I sat down, snapped a picture for George’s Waiting group on flickr, and within just a couple of minutes I was called back to the lab.

I sat in the little blue chair and started pulling up my sleeve when the lab tech stopped me. “No no, we don’t need to do a blood draw today. Just a finger poke.” Wow. I think that’s the first time in years I haven’t had to get my blood drawn in years! I kinda laughed at the mere fact that all he wanted was a finger poke… something I could have done myself and told them the number. But then again, I guess you do have people who fudge, so it’s best not to let them fight it and check. What’s another poke right? She got the one-time-use poker out and ready, stuck it to my finger and said “Ouch” as she pressed the button. I had to laugh. She kinda looked at me and I said “Sorry, it just doesn’t hurt anymore. I’m used to it.” She said “Oh, I’d be jumping anyway…. you’d better be chewing that gum harder.” “(me) I’m sorry, what?” (her) “I said you’d better be chewing that gum a little harder.” and she showed me the meter. 59. She offered me sweet tea and the nurse went to weigh me. (Which I’m still 10 pounds less than I was pre-pregnancy, so at least I’m maintaining now and not losing anymore.)

We went to the patient room and the nurse started getting all my info down from my pump. This wasn’t my normal nurse. The usual nurse had gone home sick, so I had someone else. Someone who didn’t know how to operate my pump. At one point, she had it in the temp basal setting about to turn my basal down. So, I offered to help and we got her to the right menus. Granted, I know they usually like to do it themselves so they can document that they read it themselves, but sometimes it’s okay if they don’t know how to use my medical equipment to ask me to show them. I mean, I do use it on a daily basis, ya know? Anywho, the lab tech walked in with a glass of orange juice (since they were out of sweet tea) for me to drink while waiting on the doctor.

OJ at the endo'sThe nurse finished her notes and I waited on the doctor. I was aaaalmost finished when the doctor walked in. He came in with his usual bubbly self and shut the door behind him and then he saw it. The glass of orange juice. “Ahhh, the glass of orange juice. We’ve hit a low I see.”, while grinning from ear to ear.  See, that attitude about him is what I love. Granted, it was kinda embarrassing to have a cheekful of orange juice for his first view of me for the day, but oh well. (He had a phone call and stepped out, so I snapped a picture.)

We went over a few things discussed some worries, talked about video games (yeah, my appointments aren’t all about diabetes), changed a few rates and his main concern was that by now, most women are seeing hard-to-treat frequent highs. I’m still seeing lows… lots of them. So, once a week, I’ll still be sending in blood sugars and also calling if there’s an immediate concern. I asked if the lows were affecting the baby, and I mentioned what my OB had said (that he was okay with the 50’s) and he said the lows were okay as far as the baby was concerned, but not me. He didn’t want loss of balance or control that could hurt me or the baby in anyway, and that’s his main concern with the lows – the potential to get physically hurt.

So, the jist of the appointment was this…. keep glucose tabs or juice with me at all times until we get the lows under control, make sure I have a glucagon kit and that Erik knows how to use it, and keep up the good work with my control. All in all, he summed it up in one statement and another one of his smiles:

“Don’t worry. You’re doing an outstanding job”.