So last Wednesday (20th April) was my 6 monthly clinic appointment for my diabetes. I was quite nervous about it. Not because I would be getting my Hba1c result, even though I was hoping that the Libre had continued to help me reduce it like last time but because I was going to mention an insulin pump, for the second time.
I asked about an insulin pump just over a year ago, January 2015. I was told that I was doing well on MDI (multiple daily injections) and that it wasn’t necessary. I was disappointed and thought that it could really help with a few issues. The following month I attended PWDC15 (I wrote a blog about it, you can read it here if you like). I spoke to several people who use insulin pumps, chatting about some of my experiences and being informed that an insulin pump could really benefit me. So I was all fired up to mention it again at my next clinic appointment. September came around really fast for my next appointment and I have to be honest I chickened out as nothing had really changed since January apart from now using a Libre flash glucose monitor. My Hba1c had improved hugely, in fact it was the best it had been in few years(50!!), and that & the Libre seemed to be the main focus of the appointment. So I kept me thoughts to myself.
I was disappointed with myself for backing out. I was still having issues with hypos, lots of them and no matter what I did I couldn’t seem to avoid them unless, of course, I wanted to run really high. Busyness in work changes day to day and I’ve no idea how things will be until they’re happening. Also, due to the Libre I was noticing that I was sleeping through hypos for quite some time. I do set an alarm to try and catch any but sometimes I’d checked about 30 minutes or so before one has started and I’ve gone back to sleep thinking everything is ok only to wake eventually to see by the graph that I’d slept through lows. I check BG, just to make sure it isn’t reading low because I’ve been laying on the sensor, and find out that I am low.
I was fortunate enough to be able to go to PWDC16 in February again this year (I wrote another blog). This year I attended a session about transitioning to a pump from MDI. I was able to ask lots of questions and share my experiences again. I also chatted to others individually about the same things. I was really encouraged to ask about a pump again as many thought it could be very beneficial. You know who you are, so thank you for helping me to realise I wasn’t being silly and helping to build my confidence up to ask again. Just before going to PWDC16 I had decided to start writing EVERYTHING down. Yes my Hba1c was much much better, things looked good but I knew just how hard I was working on it but still having lots of hypos and other issues that I felt I needed to be able to show at my next appointment to “back up” my reasons for a pump.
Anyway after all that background, lets get to this appointment. I arrived and checked in. I was beginning to feel quite anxious. Second thought, was I just anxious or hypo? Libre said 3.4->, and a blood reading was 4.3 mmol. So maybe it was just my BG level, I quickly ate a few Jelly Babies as I didn’t want to put the DSN or myself through the Hypo box situation again. There is also a previous blog that includes that bit, but I’m not going there again it was a little embarrassing for me. After a while I still had the anxious feeling but my BG was fine. Argh, I’m such a wimp sometimes.
After a while I was called through for the usual weigh in & water sample to be handed over. Then I was sent through to the next waiting room, as usual. Next I got called through to the next waiting area where you sit and wait to see the DSN and then the consultant/endocrinologist (endo for short).
When I went in it was the same DSN I’d seen the last few times and I knew I had to get around to mentioning the pump to her. I didn’t have any worries about saying it to her personally as she is really lovely, I was just nervous about mentioning it incase I was told it wasn’t necessary again.
The usual “chat”& questions started, how was I, my feet, any lumps etc? We looked at my Hba1c result which had dropped by 1 to 49mmol, 7.6% (eek, so pleased that I can prove to myself that the cost of the Libre is worth it).
She asked if I had any questions so I got my book out. I explained that I needed some help with a few things, hypos in particular. I had a few sticky note tabs attached to certain days so I could find them quickly. I also had photo’s of some Libre scans again to “back up” my notes and so she could see exactly what was happening and then refer to my notes to see what I had been doing. We spent some time looking between the pictures on my phone and the notes and chatting about possible solutions. It’s been a lot of work keeping the detailed notes but it was definitely worth it to be able to go through them with her. I explained that I also wanted to start exercise but I would need help as all I did with exercise was eat to fight off the hypos, defeating the purpose of exercise to loose weight. I admitted that I didn’t know how to deal with insulin and exercise. I was also slowly building the courage to ask if these issues could be helped with a pump. Eventually, I asked questions about a pump and my issues and with each question her answer was yes. We chatted about some of the things that a pump would offer, tbr’s, extended bolus etc, and a few other bits that the DOC chat about and some of the things I had learned about at the Nottingham conference in February, she was surprised at what I did already know about pumps (don’t get me wrong I obviously still have a lot to learn so get ready for lots of questions).
I asked my husband Allun to come in with me. Just as a bit of moral support and a prompt if forgot to ask things that I had previously chatted with him about that I wanted to talk/ask the DSN or Endo about. Next thing I knew he was telling the DSN about me and my life with diabetes from his different perspective. I got a little emotional and with much difficulty I managed to suppress the tears. I had no idea he’d bee paying so much attention. Diabetes really does effect everyone in the household and I hadn’t really realised before just how much. He supported me in my questions about a pump and finished what he was saying with “She is trying so hard to keep on top of her diabetes on MDI and struggling with these hypos, not knowing what each working day will bring either. I think it’s time she was given a chance and if a pump can help with this she needs to be referred. I just want my wife back” (me fighting back the tears here). She then asked me a few extra questions about hypo awareness and other things, and said that she thought a pump referral was necessary, and felt that a request would be approved. She excused herself and said she was going to have a word with my endo.
Looking at the clock I realised we had been in there a long time, way over half an hour. I felt guilty as I knew there were others in the waiting room. She came back in, I thanked her for her time and apologised for taking up so much of it. Her response, “Don’t apologise, that’s what we’re here for.”
Next my appointment with my endo. She confirmed what the DSN had talked to her about and that she agreed and she would refer me to the pump clinic!!! Yay, those annoyingly time consuming notes had been worth it. She was concerned that I was sleeping through the alarms on my device (Libre) at night, I explained that it was a flash glucose monitor, that it only read when I swiped my sensor, that it holds 8 hours of information and that it didn’t actually alarm. Her reply was that we may need to look at something that alarms (I’m presuming CGM) but first we need to see if a pump helps with the night time hypos. She was hugely pleased with my glucose improvement over the last 2 years and told me that she was very proud of my achievement, thats the first time I’ve heard that in 13 years since my diagnosis with type 1 diabetes (big pressure on myself to keep it up now, but to be honest I don’t want to go back to my previous numbers). We discussed insulin to carb ratio’s and she suggested some changes to try. She wanted to check my feet, my sensation is fine but she was concerned about the pressure points on the balls of my feet and heels for the future and recommended I use support insoles. Apparently I’ve got a good arch to my foot but I need something that’s going to support my arch and disperse the weight on my feet as I’m on my feet all day. She ended the appointment saying that unfortunately she wouldn’t see me again at this particular clinic as the pump clinic was in a different part of the hospital. Apparently I should hear from the pump clinic within weeks.
This was a particularly long appointment this time, but I left feeling excited, happy, nervous, glad that I had plucked up the courage to ask, relieved that I had taken “evidence” with me. I just need to wait to see if my request is approved now.
Thank you to the DOC & GBDoc for all your support and advice. I am very sure that should my request be approved I will have a lot more questions for you all.