I'm off the pump

[George]

In three weeks time is my next visit to my endo, and as I said earlier I'm using that as the marker for my decision to return to pump or stay on Levemir. I am starting to feel anxious about that decision and am struck by what a curious thing it is to feel that there is a need to decide.

The constant seems to be that my body is telling me that the pump is best but my mind wants the freedom of not being attached, even though ironically being attached gives me more freedom. Basically, I am totally in love with the idea of having no prosthetic. I am trying to take myself back to the time when I was afraid of starting the pump because of a fear of attachment and then once atttached realising how easy an unobtrusive it was. But I'm still resisting.

I think it may be best to force myself back onto the pump, and that may be the clarifying moment for me. I think it is common for people to just settle with things - especially us diabetics, "well this is just how life is going to be from now on". What gets lost in that mentality is that there actually are better options.

OK, I think that settles it. June 23rd it is.

[Anne]

Hi George,
I admire your determination through the many difficulties you are getting at the moment. I can relate to the feeling of life being chaotic as a way of life, almost a routine.

Maybe you can stay with Levemir until you feel you really want to go back on the pump? Your review next month might influence your decision, if your control was markedly better or worse on Levemir.

I took a year off pumping a few years ago, and one day decided to go back on a pump, I cannot explain why or why not, it just felt better then, especially as Lantus had just been put out on the market in UK and I experienced a flat profile insulin for the first time, very different from the 12-18 hours NPH I had used prior to pumping. Progressively I decided I wanted to go back on the pump, I think I may have tried different sets to make it feel new/better. Now I am back pumping but occasionally I take a day off, or a week, if I want to feel free from physical attachments (and wear that special black dress or sleep on/in the pool for hours).

I now feel that I have a choice of being attached to a pump or not, and don't mind it as much then.

Good luck with whatever decision you make on 23 June, and with everything else.

[Catapult]

I think it may be best to force myself back onto the pump, and that may be the clarifying moment for me......

OK, I think that settles it. June 23rd it is.

George> how did your visit to the Endo go? i've been waiting since June 23 to get your critical appraisal and learn of your decision to re-pump or not (and Sexy Bear has asked after you a few times too).

Did you notice any difference in A1c, eyes, kidneys? Sorry if it's a bit personal, general terms would suffice.

I hope that whatever choice you've decided to go with, you are happy.

Cat.

[George]

June 23 came and went, and my pump is still in my drawer.

I have been too busy lately to have space to think of anything else. In fact, I even forgot my June 23 date with an external medical prosthesis!

However I did go see my endo and that was great. Very useful appointment (in fact there'll be another post on that very topic). He offered me a few pens of Levemir (hard to say no to) and I told him I wasn't sure because I want to return to the pump so I'm not sure if I'll need it.

But my HbA1c was....6.4 so I was happy with that - much the same as when on the pump - which is a point in itself.

So I'm going to stay on Levemir for maybe another three months. My brain is still asking for the pump back but my body still wants the Levemir.

The thing that is clear for me now is that I definately find the pump much easier to use than MDII. I also am finding that its harder to keep account of how much insulin I have with me whereas the pump pretty much tells you directly how much you have.

My endo also asked me how much novorapid I am taking and I really have no idea because I don't eat set meals or carb serves. I apreciate that there are different perspectives on whether there is importance to this or not, but it bothered me nonetheless.

[Catapult]

But my HbA1c was....6.4 so I was happy with that - much the same as when on the pump - which is a point in itself.

NICE one! well done. it must have been so much harder to maintain good control on the MDI than the pump, so you have put in a huge effort.

i think i would find the calculations on MDI hard to go back to. i had to carry a cheat sheet with my meter to work out how many units for x grams of carb etc. (given that my ratio was 1u/4.4g, it wasn't easy to do it in my head).

glad you are going ok.

Cat.

[Nic.]

Hi George,

Congratulations on your 6.4... I have just reconected to my pump, having had about 3months free of it, for what sounds t\like the same reasons as yourself. But for no good reason, as part of a timing thing for a presentation I am doing on Pumps, I needed to work out how long it takes for a line change and all of that.

Well the long and the short of it is, I inserted the cannula and all that, and well haven't really thought of coming off my pump since.

I think for me the realization that I can have a break from it if I want has made a huge difference.

I am connected now to my pump with the idea of if it works great, if no so be it and I can go back to the MDII option. I have no expectations this time, and I think that has made all the difference.

Don't get me wrong, I still don't like the whole being connected thing. I think about leaving the pump behind and using MDII quite a bit of the time, but I am continuing at this stage.

I will just wait and see what happens.

At the moment you just need to take each day as it comes, and like Anne said

I now feel that I have a choice of being attached to a pump or not, and don't mind it as much then.

.

Nicola

[Jelli]

Hey george

Good on you for being "crazy" and taking a break from the pump. I use levermir and persoanlly think its awsesome. Im pretty much free of hypos and it is slowly released over 24 hrs. Definately give it a go, what do you have to loose? Good luck :)

jelli

[George]

I had a busy work day planned for Monday and I especially did not want to be bothering with injections - partly because I was going to be in a day long meeting with no privacy and didn't want my diabetes on display at all. So Saturday monrning I decided to try the pump out again. This was much sooner than I was expecting but I'm a big fan of spontaniety.

I had taken my Friday night Levemir no problems, skipped the 9am Levemir dose, and reconnected pump at about 12pm. I went back onto the exact same basals I was on before my 105 days of experiments with MDII. This worked fine for a few hours but then I started having major hypos so reduced my dose by 20% for the rest of the day - but still hypoed. Left it at a 20% reduced dose overnight and still woke up 1.8.

The next day I was fine, and today has been fine as well.

I spent most of Sunday wondering why I was back on the pump and had a fair bit of resentment as well. By the end of today I feel like I'm back on familiar pumping territory but it is taking me time to remember all the details, not that you forget much but many pump operations you end up literally being able to do with your eyes closed but I'm currently needing them wide open again.

I have no idea how much longer I'm going to stay on the pump and if I'm going to go back onto Levemir but I may give it at least two weeks on the pump before I decide the next step. I am still considering the untethered regime so I may give that a go next month.

Nic. I definately agree with you regarding satisfaction with having real choices now. In fact, if Levermir had come along before the pump I wonder if I would have gone on the pump at all. I now really strongly feel that these new long acting drugs are real competition for pumps.

[Catapult]

maybe you could do levemir for night time and pump for day time. you seem to dislike the tubing and pump mostly in bed and going for shower etc.

Cat.

[George]

maybe you could do levemir for night time and pump for day time. you seem to dislike the tubing and pump mostly in bed and going for shower etc.

Yeah, that's what I was thinking. The problem is that my life is massively unpredictable. Some days I wake at 6am, other days I wake at 2pm - regardless of weekday or weekend. I think for such a regimen you need to have more routine in your life.

I am trying to figure out ways of making that work for me.

When I was taking twice daily Levemir the morning and evening shots were really difficult to do on time and it was not uncommon for me to take them up to several hours late. That's another reason for the pump being so great, because you don't have to worry about missing or remembering shots.

[Filly]

George, Thank you so much for this posting (I am late but I needed to say it) If I may give you my $.02. I have been pumping for 2 months now, and I hate not being able to walk around naked, and it makes sex more complicated. BUT, when I go out at night, I LOVE that I can stay out all night till morning and not worry.

I remember being at a concert last summer, we got back stage, and invited to an after party, it was 2am, I HAD to go home a take my Lantus ( I was aready really late). Missed the party. I am still angry/lamenting. If I was on the pump, there would not be a question. I may have even become a roadie that night! Lantus killed my rock dreams

So I agree with you, it is a matter of flexibility.

[George]

Lantus killed my rock dreams

Sorry, but that is so funny; and a great way of simplifying the benefits of a pump. I laughed a lot after reading that - one of those knowing laughs of revelation.

Its been a week now back on the pump and I'm very clear now that the pump is the best. Yes you can quote me on that. But I am also clear that the pump is not suitable all the time and occassionally MDII may be a better option - but in the long run I want the pump.

I am especially clear now that the outcome of my experiment was that I have other options that good options when I need a break from the pump. And despite its drawbacks I feel that the pump is currently the treatment that will give me the best outcomes long term.

I feel the need to write "the end" or something like that now!?!?

[George]

I'm very clear now that the pump is the best. Yes you can quote me on that.

Oh no! I've changed my mind. Please don't quote me on that. The pump is amazing but as of yesterday I am back onto Lantus. Life has been really hectic and I moved into this new places that I am subrenting and I woke on Sunday morning from a big night out and desperately needed a shower and to change my infusion site. I removed the site and started the shower to discover no hot water. I was too dirty and had no swabs (never use them just put site in after shower) so didn't want to put a new site in so decided to revert to needles for a while.

I am pretty happy about this because I have kept my d a secret at my new job and have had to hide the pump....however a few people have noticed the device on my ankle and its getting harder to be discreet - so oddly, the needles are great for discretion.

I am only onto my second day back on injections and I am finding the adjustment a bit rough but managable. Not sure how long I will stay on them but I doubt it will be too long.

[Catapult]

I removed the site and started the shower to discover no hot water. I was too dirty and had no swabs (never use them just put site in after shower) so didn't want to put a new site in

he he. sorry to laugh. i would have just proceeded with a cold shower. failing that, boiling some water and thoroughly washing the local area where the site would be put in.

since i watched the announcer/comedienne to a play, before getting in a shower, i always check (1) there is water present (2) water is hot.

This comedienne had been on a long dusty road trip to get to a gig at a pub and she arrived 10 mins before she was due on stage, and she was also busting for a pee (i don't think she had polyuria/glycosuria, but you know how road trips can be). Feeling grungy, she wanted to shower immediately and quickly get on stage. Being a shower pee-er, she jumped in the shower cubicle and her bladder blissfully erupted as she reached for the water taps. No water. Pee all down her legs. She didn't say how the next few minutes were spent before getting on stage!

Lesson learnt for George and the comdienne: always check water status before peeing and removing infusion sites.

Cat.

PS Hope the Lantus is working well. Isn't it great that your brought it along? Good forethought.

[George]

Lesson learnt for George and the comdienne: always check water status before peeing and removing infusion sites.

Um...no... the actual lesson learnt was if you're going to invite a hottie back to your place check you have hot water before you shag all night. I was trying to be discrete in my first message but since you perverted it with urine I thought I might just clarify!

I realized I could have had a cold shower, or heated up some water etc. but I had someone with me and I was trying to appear sexy, stay in the right lighting - and all that.... you know how it goes? I could have discreetly put a new site in after a hot shower but the rigmorol of cold showers etc would have made things more awkward.

I think I was also a bit over the pump and wanted the diconnected-freedom of lantus again so it was a good excuse.

[Catapult]

Um...no... the actual lesson learnt was if you're going to invite a hottie back to your place check you have hot water before you shag all night. I was trying to be discrete in my first message

oh dear. i guess the cold water/no shower didn't add to the romance of the situation!

I think I was also a bit over the pump and wanted the diconnected-freedom of lantus again so it was a good excuse.

i can understand that. did you just pick up your lantus dose where you left off last time you were untethered? has the transition been smooth?

Cat.

[George]

Sorry, I meant to say Levemir, not Lantus.

I did just revert to my old doses but the transition has been really bumpy. The day I switched from pump to Levemir was easy enough to manage but the following days my BGLs have been all over the place - mostly high teens.

I am actually thinking about reverting back tomorrow. At this time I am reminded of how much simpler the pump is, easier to handle, easier to dose, and much harder to forget to take with you than an insulin pen - and for someone as forgetful as me that's one big bonus.

Also I don't yet have health insurance. In Geneva everyone must purchase health insurance and it is quite expensive. I went to a pharmacy to buy more pen needles but one box costs 50 Swiss Francs (the exchange rate with the $AU is almost exactly 1:1). It just felt wrong to be spending that much one box of pen needles so I decided not to, and I only have two left which I am just reusing to the death. I know I know.....

So if I can be bothered I think I will avert back to the pump tomorrow.

[George]

The most remarkable thing is that being back on the pump again has me wanting to say that the pump is the best, but my little Levemir experiment has me realizing that any insulin therapy is just one small part of the overall treatment.

I think that for me the pump is not the aswer to everything treatment wise. As I said earlier I like that I have options of switching between treatments depending on my moods and activities.

This time the trip back to the pump was because I am doing a lot more exercise and the pump makes that easier to manage. I have also recently taken up drinking and the pump is very easy to moderate doses after a boozy evening. Whereas with both those things I found Levemir complicated to figure out and get right.

Also my BGLs rose quite a bit when back on Levemir. I suspect its because I had to figure things out again and found that I could not quite substitute the same bolus doses I took for meals on the pump as needed for with Levemir.

Finally I also found it really inconvenient having to untuck my shirt everytime I needed a small dose of insulin. I know I could inject through the shirt but don't want to risk bleeding onto a business shirt when at work.

So that's it for now...but stay tuned...who knows what may be next... Actually next is to read over this whole post from the beginning which I have not done since I began it, so I may discover that I have just been repeating myself in these last posts from when I first switched to Levemir from the pump.

[Kate]

Really interesting (and surprising) to hear that you are able to switch between the two so easily George - thanks for the insights.

[Anne]

Kate,
it is not quite perfect, but I have taken holiday from pump to Lantus in the past too, to enjoy a week by the pool in the summer, and the occasional wedding when I wanted to wear pump-unfriendly dresses, but was told by my endo that it takes 3 days for things to stabilise on Lantus. Nevermind, I used bolus doses on Humalog pens and sort of my old Lantus dose, not quite the same as my total basal on pump, and it was not perfect but good enough for the short term. My aim was not bgl control but freedom. I eventually always go back to the pump thinking this is more accurate and flexible- except the dress code (I need a belt or some clothes with a strong waistline to carry it).

Interesting to see how you are doing with trials off the punp, George. Is Switzerland a good place to live? How did you settle there?

[Kate]

Anne -
For interest, I bought one of these years ago
http://www.uniaccs.com/thumbnail.asp?id=2&cid=54
and have worn it under very slinky clothes and is very comfortable and pump invisible.
K