pump appointment with consultant

[himtoo]

Hi there pumpers
brief intro on this topic

diabetic Type 1 for 42 years 11 months
novorapid and lantus
A1c's over the last 5 years between 5.7% and 6.1%
impaired hypo awareness hence put forward for a pump by my endocrinologist august 2014

appt with DSN to determine suitability / commitment oct 2014
5 appts with dietician from december 2014 to february 2015 -- approved for carb counting
first appointment with pump endo on july 17, 2015

so my question is this -- After what seems to me a lengthy wait for this appointment what can I expect ?

more questions about my suitability ? a quick chat and be offered a next appt to get things moving ?
getting told the waiting list is still 2 years ??

getting quite nervous and just wondering if others have any insight into this "first appointment" with pump consultant

thanks for reading

 

[Riri]

Sorry can't help out as my DSN suggested/approved my pump and some 5 months later I was hooked up so never had the additional referrals you speak of. Someone will be along soon I'm sure that know what you can expect from your 'pump endo'. Again we have no such doctor just a general endocrinologist who sees all Diabetics patients and those with other endo conditions.

 

[dancer]

Hi there pumpers
brief intro on this topic

diabetic Type 1 for 42 years 11 months
novorapid and lantus
A1c's over the last 5 years between 5.7% and 6.1%
impaired hypo awareness hence put forward for a pump by my endocrinologist august 2014

appt with DSN to determine suitability / commitment oct 2014
5 appts with dietician from december 2014 to february 2015 -- approved for carb counting
first appointment with pump endo on july 17, 2015

so my question is this -- After what seems to me a lengthy wait for this appointment what can I expect ?

more questions about my suitability ? a quick chat and be offered a next appt to get things moving ?
getting told the waiting list is still 2 years ??

getting quite nervous and just wondering if others have any insight into this "first appointment" with pump consultant

thanks for reading

I presume it depends where you are. When I saw the pump consultant, he agreed the pump was for me and said it was a matter of funding. He told me I was top of the list and as soon as they had funding they'd get in touch. I think it was about 6 months later I got my first pump.

 

[noblehead]

The meeting will likely be to discuss your pump options @himtoo and to see if your ready for making the change over, I wouldn't worry too much about the waiting times if you've been approved since August 2014, just be sure to ask the Endo any questions or concerns you may have about pumping insulin.

Good luck Paul and hope all goes well

 

[yingtong]

Good Luck,himtoo,it has changed my life as I have no Hypo awareness at all.I am still in my early stages with my pump but are certainly getting there.

 

[ann34+]

Hi there pumpers
brief intro on this topic

diabetic Type 1 for 42 years 11 months
novorapid and lantus
A1c's over the last 5 years between 5.7% and 6.1%
impaired hypo awareness hence put forward for a pump by my endocrinologist august 2014

appt with DSN to determine suitability / commitment oct 2014
5 appts with dietician from december 2014 to february 2015 -- approved for carb counting
first appointment with pump endo on july 17, 2015

so my question is this -- After what seems to me a lengthy wait for this appointment what can I expect ?

more questions about my suitability ? a quick chat and be offered a next appt to get things moving ?
getting told the waiting list is still 2 years ??

getting quite nervous and just wondering if others have any insight into this "first appointment" with pump consultant

thanks for reading

Hi, you say you were 'put forward' for the pump last year. Not sure if this means approved. The only problem you may have is your HbA1c may be seen as too low and you may be asked to raise it to 7.0%, or to try to get to at least over 6.5%, in the hope of avoiding any unnoticed hypos. And then possibly restoring some awareness. This may have already been advised, and you may not have been able to raise it, i don't know about policy in other hospitals, ... But if you are put on the pump almost certainly you will be trained and told to do all you can to get up to 7%.,PS. although this figure may seem a bit high in my experience it is a really good idea, and it has a lot of research behind it. It may not be possible without the pump because of the hypo unawareness, but, once on the pump you will find it probably is, .hope things go well.

 

[himtoo]

Hi @ann34+
my endocrinologist put me forward or proposed me -- basically i think he wrote a letter to the pump team asking me to be considered for a pump on the NICE guideline basis that my awareness is impaired.

raising my A1c seems a daunting idea to be honest - i spend all my time trying to keep it low

 

[yingtong]

himtoo I was asked by my Endo to raise mine 3 years ago and it worst 3 month I can remember,I hate high blood/glucose levels but there was no improvement in my hypo awareness.After being on insulin for over 52 years it can be a unavoidable problem to loose hypo awareness,hence I have been on a pump for 6 weeks and also received funding for a CGM,this was thanks to a lot of work by my Endo and DSN.

 

[himtoo]

@yingtong
you hit the nail on head big time here -- I hate high bloods too -- we get hammered into us to stay in the ranges 4-7 and no more than 10 2 hours post meal
if this were a manufacturing process and looked at by statistical analysis -- they would soon tweak everything to get the process 100% right

but as we are human and suffer from lapses by living our lives too we seem to catch it for being high ( i am never high for long - correction doses are the order of the day ) or for being too low -- which i would prefer as the downstream consequences seem less ominous than the high end

and there doesn't seem to be an understanding of just how long 52 or 43 years is ( you and me time served )

 

[noblehead]

@himtoo @yingtong

I know you both have the book Pumping Insulin, have a read of Chapter 20 (page 231) where Walsh mentions strategies to prevent and reverse hypo unawareness, it will be of particular interest to you @yingtong as he recommends using a CGM.

 

[yingtong]

Thanks noblehead,I have read this and once I get really settled with the pump I will give it a go.Yes himtoo I have just flicked through my records for the past 12 years(to lazy to connect the other hard drive to back further)my hb1ac's have never been over 5.6,I tend to get quite ill once over 10, so i tend to aim low which I can manage.i have never been hospitalised for a hypo but in my very early days I had 3or 4 bad experiences with DKA which I was not prepared to repeat.I am very lucky,my Endo is carry out research in Hypoglycaemia and is a American.

 

[ann34+]

Hi @ann34+
my endocrinologist put me forward or proposed me -- basically i think he wrote a letter to the pump team asking me to be considered for a pump on the NICE guideline basis that my awareness is impaired.

raising my A1c seems a daunting idea to be honest - i spend all my time trying to keep it low

I think it all depends on the individual - in the beginning it may have been daunting for me - but I had already been gradually raising mine, as hypos or hypo unawareness was seriously affecting me, so I saw no problem with following what my consultant suggested - hypos, even so called milder ones, could affect me for days., due to the fact i was unaware of the early symptoms, and i realise now (though not at the time) that i was living with an continuous background of fear, and periods where my brain was not functioning 100%. Obviously this was contributing to my lower, so called "good" HbA1cs. Despite this i did not qualify for a pump. I do not think so much was known about how blood glucoses could alter in a day. I had only spent approx 30 years trying to keep in range.
Then events made more hypos very dangerous for me, and potentially very expensive for the health and social services, and, though even this still did not qualify me automatically, the issue was looked at again, it still took years more. Perhaps it is easier now.
Re HbA1c, as far as i understand it, looking at long term trials there may, for some, be better outcomes in keeping about 6.5% to 7%. possibly due to dangers in hypos themselves, and in what too much insulin may do to blood vessels, and unknown other factors. There are, for me, massive quality of life improvements. I wish i had been able to have had a pump before. Re some higher blood glucoses, maybe the ideal would be even blood glucoses, but I have compromised. I do not use the same insulin any day, nothing can work out what is needed as so many factors are relevant, and i am very insulin sensitive. 7% seems to be what i am to aim at, and when i am occasionally over this my consultant beams and congratulates me even though i would like to be lower! Hope things work out at your appointment.
P.S in my case i am pretty sure unnoticed hypos and more hunger at times were upsetting stomach acid balance - i got off meds i had been on for years on the pump,

 

[himtoo]

update to this thread
had my appointment with the pump endo and hooray -- i am approved fully for pump
DSN is aiming for a pump start last week of september
decided on the Omnipod
quite excited but it doesn't really seem real yet..............

 

[noblehead]

Excellent news Paul

 

[-Artemis-]

Yay!

 

[CarbsRok]

update to this thread
had my appointment with the pump endo and hooray -- i am approved fully for pump
DSN is aiming for a pump start last week of september
decided on the Omnipod
quite excited but it doesn't really seem real yet..............

Really pleased for you.

 

[yingtong]

Congratulations and good luck.

 

[Gaz-M]

great to hear

 

[himtoo]

punp appointment arrived in the post yesterday --- september 29th at 9:30am

DSN said she will be sending pump direct to my house in time to bring with me to appointment.

 

[CarbsRok]

punp appointment arrived in the post yesterday --- september 29th at 9:30am

DSN said she will be sending pump direct to my house in time to bring with me to appointment.

Fantastic, I hope you take pump out of packaging and have a play with it before you are set up to go. Learn how to do things with the pump so you can take on board what you are being told at your apt IE be proactive.