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-   -   Type 1 Diabetic w/ Insulin Pump (https://www.cruisersforum.com/forums/f131/type-1-diabetic-w-insulin-pump-237103.html)

E185640 17-07-2020 07:38

Type 1 Diabetic w/ Insulin Pump
 
Hey Guys. New to the forum and looking for some salty wisdom from any fellow Diabetics.

I am a 40 year Type 1 diabetic (diagnosed at 6 yrs old and know no different way to live) that uses an insulin pump + CGM. I have never let T1 get in my way of exploring and being active....bicycle racing, triathlon, motorcycling, scuba, sailing, etc. i have always approached exploration and adventure with a backup plan and exit strategy.

My wife and I have been discussing doing a circumnavigation. Any fellow T1 diabetics or T1 diabetics on insulin pumps out there?

How are you managing supplies (insulin, Bg strips, CGM, pump supplies)?

What is your back-up plan?

Many thanks for the thoughts and knowledge.

roverhi 17-07-2020 10:45

Re: Type 1 Diabetic w/ Insulin Pump
 
I'm a type II on insulin for 20 years but using pens. Did a solo TransPac a few years ago. Didn't need refrigeration to store the insulin pens for that passage. Longer term cruising would probably require refrigeration though insulin keeps for long time without it. Did a 45 day trial in Hawaii temp's with Humalog, short term insulin, Pens at room temp and had no problems with insulin degrading. Recently switched to Toujeo, long term insulin, and they actually don't recommend refrigeration once you start using the pen. They claim the Toujeo pens will go longer than 60 days at room temperature. Both insulin's need refrigeration for long term storage, however. A small portable refrigerator strictly to store the insulin might be a possible solution to long term sailing that wouldn't be a too severe drain on the batteries.

How does the pump work in measuring blood glucose levels to know how much insulin to dispense?? Recently started using the Free Style remote sensor glucose testing system. Really nice not to have to poke my fingers and get a reading with a swipe of the iPhone at any time. Does the pump have it's own remote sensor??

This probably doesn't help you much but wanted but some of the things I've done to live with diabetes on a boat.

atoll 17-07-2020 11:17

Re: Type 1 Diabetic w/ Insulin Pump
 
you would probably want to have a back up pump in case of failure and carry enough insulin and supplies for a year at least,and maybe have a plan in place for a resupply from home if someone flys out for a visit.

finding insulin has never been a problem,as diabetics are everywhere,but most 3rd world countries you can only find insulin in 30 and 50ml vials and administer with u100 1cc syringes.

pens are becoming more common with refillable 3ml/u100 vials like actrapid ,nova rapid,levermir,lantus etc

be sure also to have a few glucagon kits and make sure your partner knows how to mix and administer.

anti nausea tablets,dextrose and oral rehydration solution are good to have in the event that you cannot hold down food.

also bear in mind sleep patterns,meal times can get very out of sync so slower acting insulins can give a better control with fewer hypos than a normal regime of faster acting insulin injections,though with a pump you should be able to adjust accordingly.

i find uht milk and orange juice in 1 liter bricks are usefull for energy/carb boosts if you you don't have time to eat when making sail changes in rough weather etc.

E185640 17-07-2020 11:29

Re: Type 1 Diabetic w/ Insulin Pump
 
Appreciate the insights!

Roverhi, to answer your questions...

I currently use a Tandem Pump w/ a Dexcom G6 CGM. The CGM transmits directly to the pump, uses a BG control algorithm (developed by Univ of Virginia), and turns off or adds BASAL rate insulin. BOLUS insulin is given as you would expect based on carb counting. Sensors last for 10 days, then get replaced. Canula's connect the pump to your abs. They are replaced every 2-3 days. Only HUMALOG or NOVALOG U100 are used in the pumps. However, you can reset the pump for U40 insulin is one cannot obtain U100 (but all settings/rates have to changed due to the concentration change).

A back-up pump is a good thought and possibility. I would simply buy out-of-pocket (~$5,000-10,000). My typical back-up now are syringes and short acting insulin..think scuba diving. I would still want that back-up. Agree GLUCAGON is a necessity, and probably a flight-out emergency policy if the $h1T hits the fan.

Sail Away Mom 18-07-2020 09:26

Re: Type 1 Diabetic w/ Insulin Pump
 
Hello Fellow T1D!
I have been T1D 45 years, and am on the Omni Pod Insulin Pump.
I am still waiting for my Dexcom G-6. I have also never let myT1D get in the way of my hobbies or travels abroad. Another option instead of a backup pump and is far easier to carry are Lantus Pens (or a similar long acting insulin) and your Humalog which you are currently taking. Make sure you have the correct dosage before the pump fails. Any Endo can figure out the dosage for you.
In the event of a hypo Glucose tablets or hard candies. I do carry juice boxes for a quick fix of a hypo as well. As far as refrigeration of insulin my sailboat has an icebox which I use,however, a portable electric cooler which runs on either AC/DC. works well too.
I wish You and Your Wife a Safe passage, Enjoy your Adventure!
😁

sepharad 18-07-2020 09:42

Re: Type 1 Diabetic w/ Insulin Pump
 
In Portugal, supplies are a fraction of the cost. To citizens, they are free. So what this means in Practical terms is: every form of insulin I take, paying FULL RETAIL without insurance, is a fraction.

A thirty day supply of Humalog Quickpen 200 cost $1200 at Costco (last time I was in the USA), if you have no insurance. That Same drug, same box, same manufacturer is €79 at any pharmacy in Portugal. While travelling in france I forgot my liraglitazone pen (victoza) I walked in, they sold me a box of pens for something like $30. God knows what uninsured retail is in the US. I would guess a box of 2 could be hundreds of dollars.

Even uninsured, supplies will be cheaper ,virtually anywhere outside of the US. that is industrialized and moderately modern. Get your doc to write 1 year prescriptions for everything including your devices. No, American insurers wont honor them one year out, but it makes refilling in foreign lands a hell of a lot easier.

Seeing an endocrinologist here in Europe WITHOUT insurance is 50 euros, not $400 like the US. In third world countries a medical visit is even cheaper but like supplies, can be hard to find except in big cities.

1) BIG BUT here...the problem is availability, small poor countries may not have the products you need. Ecuador had a much more limited range of meds.

2) Gotta keep insulin and other meds refrigerated.

I am adding this as an afterthought. If you hit western Europe, and there are any medical devices or medications you have been wanting, but your INSURANCE company won't provide them because they are cheap. Just cough up the cash and go to an endocrinologist here and at a fraction of the cost they will set you up.

alansmith 18-07-2020 12:06

Re: Type 1 Diabetic w/ Insulin Pump
 
You can get anything you want in Mexico for a pittance of what you would pay in America.

Cylon60 18-07-2020 12:25

Re: Type 1 Diabetic w/ Insulin Pump
 
Hey there fellow Type 1 using CGM..


Bravo for taking on sailing.. Let me say that the Pump & CGM has been a great improvement in the management of my diabetes and certainly is a game changer in long distance sailing..


What is below in this post is a personal opinion, not medical advice and based on my own experience as a type 1 pump/CGM user.. See your medic for an expert opinion..


So lessons learnt from taking 'sailing trips' as a Type 1 with Pumps/CGM.......


Supplies - I travel with 1.5 times the supplies typically needed when I am close to my local pharmacy and can drop in to get some. This is because there is no pharmacy off shore and you will have errors and failed recharges of the pump and new CGM sensors for many reasons including you losing your position applying the tech when the boat pitches and rolls unexpectedly.. heat.... assume you will have problems with all the kit that are mitigated by using a fresh set of consumables..

Backup - Pens with a regular testing kit are my full system back up.. Again 1.5 times the stock typically needed and a full replacement supply to the pump... if it goes an hour out on a trip leaving a place that doesn't carry that version you are fecked.. ;-)


Make, model etc.. - Assume that where you are traveling in won't have the make or model of your supplies.. In some of the less well off places they will have basic insulin.. CGM and Pumps are latest tech and more than likely they wont have your setup or any version in those places unfortunately


Training - Train your main on board medic in the pump and CGM and the rest of the crew if they will work it if you are ill.. On a recent transat there were 3 of us. 2 Type 1s with CGMs.. When the other Type 1 got ill I was able to refer to the CGM and check her blood sugar level without needing to wake her up which helped her to recover. I could also see if she was going too low and wake her up to give her food. CGM is a game changer for sailors care and well being.



Practical stuff...



In humid climates I've found the adhesive strips for securing the CGM sensors fail or don't last as long as they would in colder climates. You will use up a lot of these to keep the Sensor on you. Sensors seem to give more errors when being setup in warm climates hence the need for extra stock..



I've found that the insulin goes off if not refrigerated. So if you are carry that stock of Pens and vials keep an eye on them when the fridge is being shuffled for the next dinner.... Educate the crew to look after the container and the emergency shots.


Meter - I use a lanyard with a pouch to hang the pump off my shoulder but across my chest so I can unzip and do a quick look see for my sugar level. I do not use it on a belt on my hip or under the arm. Snug against my sternum protects it and enables full movement even in hairy situations.. It also wont obstruct the life jacket activation or cause a painful pressure against the body..


Keep an eye to the pump getting too hot in your clothing as it has temperature performance ranges. Test strips are in my opinion to be questioned in hot climates.... if you think the test result looks off to how you feel then test a few times..


Being straight about it ....managing your diabetes at sea is a challenge no more so when you have precision medical devices such as CGM and pumps involved. They are a great help but healthy criticism of the insights they provide is needed..



You need to practice a method for recharging the pump, test, replacing your sensor in difficult situations..



A salty environment is no friend to ICs so keep the devices dry and well protected..



If you are hypo unaware be aware. Set the alarm level at it highest so you will wake up or someone will hear it above the roar of the weather..



I am really pleased to hear the philosophy explained here of not letting diabetes get in the way of leading a full life.. Once I got over the shock and denial of having diabetes in my mid 30s it was this approach that allowed me to make a good run at life..

Last idea.. I setup a private battery isolated from the service and engine battery with its own cigarette lighter connection.. This was done to ensure a pvt. medical power supply on the boat.. I had a friend who had sleep apnia (not spelt right) who needed to use a breathing machine when sleeping on a recent crossing.. He plugged it into the connection and slept like a baby for his 4 hours.. the battery would recharge on the boat systems and be ready to go for the next time..


Fair winds and if you want to chat 121 please pvt. message me..

Cylon60..

E185640 18-07-2020 13:48

Re: Type 1 Diabetic w/ Insulin Pump
 
My goodness....I just don't know what to say...

I can barely contain my excitement of knowing fellow T1's are out on the seas, living the life they choose. I have tremendous respect for you all, and thank you immensely.

Thank you for the advice of supply access and cost. That is very helpful in the planning process.

As for pump location. Interesting advice on placing your pump near your sternum. I use a similar technique while playing hockey to avoid taking a check and damaging the hardware. Worked like a charm.

I am concerned about the salty environment effects on the pump itself. BG meters are a dime a dozen and can be replaced easily (or multiples purchased and carried). Getting a pump replaced due to salt water ingress could be a PITA.

I wonder if your pouch idea can provide saltwater protect of any kind? Or, if anyone has had a pump failure due to saltwater (need to check the IP rating)?

Again, thank you all for the advice and encouragement.

johnn33 18-07-2020 16:27

Re: Type 1 Diabetic w/ Insulin Pump
 
Hi
I am 75 and have been using Insulin since 1982 as a type 1 diabetic. In the UK all supplies are free of charge under the National Health System if you are registered. I use preloaded pens from Novo Nordisk https://www.novonordisk.com/ and the simple finger prick and blood test stick. Any person other than the user can learn to do this, even if they do not speak English, and the devices have audible clicks and touch sensitive surfaces for the visually impaired. They will survive stowage in your grab bag as you enter the liferaft. The well known late sailor and author Adlard Coles started to use insulin during WW2.
Very impressed with your success with pump and the monitoring/control.
John

johnn33 19-07-2020 02:44

Re: Type 1 Diabetic w/ Insulin Pump
 
In the UK, Aquapac sell a waterproof insulin pump case part code SKU 158A here https://aquapac.net/shop/waterproof-...lin-pump-case/ but they ask you to contact them to confrim fit and compatibility with your device. Imperial College London have done some medical checks which can be read on this page.


Also, I could not locate this product on their USA website; the closest seems to be https://aquapacusa.com/shop/waterpro...ough-case-548/

Perhaps the US webmaster can get you one if you so wish?
John

johnn33 19-07-2020 03:23

Re: Type 1 Diabetic w/ Insulin Pump
 
Hi to Sepherad
This perhaps may be of interest
https://www.uclh.nhs.uk/News/Pages/E...chsataxia.aspx
John

Cylon60 19-07-2020 13:07

Re: Type 1 Diabetic w/ Insulin Pump
 
Hi,


this is great finding other diabetics getting on with things and hearing how they deal with the challenges.. Perhaps a recurring thread would be a good idea??


On the query re the pump getting wet....



The pump I use is rated to an IPX.. standard which specifies the depth to which it can be immersed without being compromised.. Same for the sensor and transmitter..



Personally, I take it off if I go in the water.


I've looked at some sealed options both for this.. iPads and mobile phones as well as cameras. There is always a risk no matter how thorough you are in sealing the pocket in my opinion.


Wearing the pump under layers of clothing protected it well enough for example in very stormy conditions I've been in.. including on an immersing bow in a F8 manually furling a jib after the furling line broke...and sweating didn't compromise it...



If I have to go in a life raft my pens and meter(s) are coming.. I wouldn't rely on the pump, vials etc..


On the cost of drugs and consumables certainly the info re Portugal and Spain is correct.. One vial of tabs I get costs €50 in Ireland and €3.40 in the Canaries..


On another note.. My BnG plotter takes inputs from wireless devices and across the boat network.. I've often wondered would it be possible to interface the pump with it to show the BG level..


It would save having to dig it out when on the helm.. ;-)

E185640 20-07-2020 07:46

Re: Type 1 Diabetic w/ Insulin Pump
 
Cylon60,

Great advice. Thank you!

My Tandem pump is IPX7 as well (3ft for 30minutes.....Meh...better than nuthin'). I do like the case idea from one of the previous posts. I have reached out to the company in the UK to see if they would sell me one. I suspect the FDA or US legal system will get in the way. Will let you know when I get a reply.

My pump does have blue tooth capability. I actually monitor my G levels on an Apple iWatch and my iPhone. However, as a medical device controlled by US FDA certification, linking any blue tooth device is locked down. I would love to be able to show the data on a chart plotter. I may need to put my engineering hat on and see if there is a way to mirror the transmission.

johnn33 20-07-2020 07:58

Re: Type 1 Diabetic w/ Insulin Pump
 
Hi to E185640
Perhaps I could buy the Aquapac you would like and despatch to you by Royal Mail? However, please do check with them beforehand if it will be suitable for your pump, and/or any other device .
John


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