[Diabetes-talk] help being blindisallrightbut being blindand diabetic is not good at all

Sally Maguire 1.sally at comcast.net
Tue Mar 18 01:20:37 UTC 2014 

It was called an Islet Cell Transplant that I had done at the University of California in San Francisco.  It was research funded by the Juvenile Diabetes Association.
One of the drugs, the rapamune began to harm my kidneys which is why they discontinued that one.  They are no longer doing these islet only transplants, but if you have had a kidney transplant, you are a good candidate as you are already taking the immune suppressants.  The islet cell transplant is not surgery.  They are just dripped through a catheter into the portal vein and there they remain in the liver doing their work.  
Pretty amazing little things!  

Thanks,

Sally


----- Original Message ----- 
From: "Fidano" <fidano at comcast.net>
To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
Sent: Monday, March 17, 2014 2:01 PM
Subject: Re: [Diabetes-talk] help being blindisallrightbut being blindand diabetic is not good at all


> Sally,
> If you wouldn't mind sharing.. Did you have the islet cells  done 
> exclusively or did you have a kindey transplant at the same time?
> Thanks and hope you get through this not feeling well quickly! Tamera
> 
> --------------------------------------------------
> From: "Sally Maguire" <1.sally at comcast.net>
> Sent: Monday, March 17, 2014 1:29 PM
> To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
> Subject: Re: [Diabetes-talk] help being blind isallrightbut being blindanddiabeticis not good at all
> 
>> Hi,
>>
>> Well, my transplant is failing, so I am back to taking insulin again.  No 
>> telling how fast or slowly these islet cells are dying off or failing, so 
>> taking insulin is a guess.
>>
>> I think the pens are far more accurate than I ever was with syringes.  I 
>> also read an article recently in Forecast that it is important that your 
>> insulin not go too deep.  You do not want it going into a muscle.  This is 
>> probably why the shorter needles.
>>
>> Yes, being blind and diabetic is HARD and I do not want it back!  Too bad. 
>> I don't get a choice!
>> I should just be very grateful for my reprieve of almost 5 years.  I am. 
>> I want it back!  I'm taking lots more immune suppressants with the hopes 
>> that the islet cells will begin working again.
>> The combination of high blood sugars and immune suppressants is making me 
>> feel sick.
>>
>> Thanks for letting me complain!
>>
>> Sally
>>
>> ----- Original Message ----- 
>> From: "Mike Freeman" <k7uij at panix.com>
>> To: "'Joy Stigile'" <joystigile at gmail.com>; "'Diabetes Talk for the 
>> Blind'" <diabetes-talk at nfbnet.org>
>> Sent: Sunday, March 16, 2014 2:47 PM
>> Subject: Re: [Diabetes-talk] help being blind is allrightbut being 
>> blindand diabetic is not good at all
>>
>>
>>>I understand. I run into it all the time with VoiceMate lovers.
>>>
>>> Mike
>>>
>>>
>>> -----Original Message-----
>>> From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf 
>>> Of
>>> Joy Stigile
>>> Sent: Sunday, March 16, 2014 12:18 PM
>>> To: Diabetes Talk for the Blind
>>> Subject: Re: [Diabetes-talk] help being blind is all rightbut being 
>>> blindand
>>> diabetic is not good at all
>>>
>>> Hi Mike,
>>>
>>> Some of us are just stuck with old likes and can't give up their Insulin
>>> vials.
>>>
>>> Warmly, Joy
>>>
>>>
>>> ----- Original Message -----
>>> From: "Mike Freeman" <k7uij at panix.com>
>>> To: "'Diabetes Talk for the Blind'" <diabetes-talk at nfbnet.org>
>>> Sent: Sunday, March 16, 2014 10:23 AM
>>> Subject: Re: [Diabetes-talk] help being blind is all rightbut being 
>>> blindand
>>> diabetic is not good at all
>>>
>>>
>>>> Bern:
>>>>
>>>> With respect: don't be so snooty! The demand for shorter needles comes
>>>> directly from patients. There's no bunch of omniscient Know-it-alls
>>>> that are making decrees about poor, defenseless diabetics. As with the
>>>> size of the special VoiceMate sound unit which contained an identifier
>>>> for Lilly insulin viles -- part of the reason it was so large -- it's
>>>> a case of "be careful what you wish for; you just might get it!". Most
>>>> people want shorter needles and while most of the consequences are
>>>> good (I don't have to pinch up the skin anymore before giving myself
>>>> an injection), it makes sense that there may be problems. Aside from
>>>> cost, why *anyone* uses viles anymore is beyond me.
>>>>
>>>> Cheers!
>>>>
>>>> Mike
>>>>
>>>>
>>>> -----Original Message-----
>>>> From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On
>>>> Behalf Of Bernadette Jacobs
>>>> Sent: Sunday, March 16, 2014 8:36 AM
>>>> To: Debbie Wunder; Diabetes Talk for the Blind
>>>> Subject: Re: [Diabetes-talk] help being blind is all rightbut being
>>>> blind and diabetic is not good at all
>>>>
>>>> Hey Gang:
>>>>
>>>> Hate to be the bearer of bad news.  But I think that if it isn't
>>>> already, the Count-A-Dose may be on its way out.  For one thing, many
>>>> of these outfits that make syringes are now making different plastic
>>>> casings for their syringes which, unfortunately, no longer fit
>>>> comfortably in the cradle of the Count-A-Dose.  If that isn't enough,
>>>> these find-and-dandy outfits have taken it upon themselves to shorten
>>>> the needle points from one-half inch to five-sixteenths inch so the
>>>> needle point no longer pierces the cork of the insulin vial.  They all
>>>> just assume that we patients want shorter needle points???  You know
>>>> what they say about assume.  "Assume makes an ass out of U-M-Me!!"
>>>> Bern
>>>>
>>>> What is ILA?
>>>>
>>>> Sent from my iPhone
>>>>
>>>>> On Mar 16, 2014, at 8:01 AM, "Debbie Wunder"
>>>>> <debbiewunder at centurytel.net>
>>>> wrote:
>>>>>
>>>>> You can purchase one through ILA. It has been a while, but I think I
>>>>> paid
>>>> between $60 and $85 for the one I have.
>>>>> ----- Original Message ----- From: "Mike Freeman" <k7uij at panix.com>
>>>>> To: "'Diabetes Talk for the Blind'" <diabetes-talk at nfbnet.org>
>>>>> Sent: Saturday, March 15, 2014 9:59 PM
>>>>> Subject: Re: [Diabetes-talk] help being blind is all rightbut being
>>>>> blind
>>>> and diabetic is not good at all
>>>>>
>>>>>
>>>>>> I got one at Wallgreen's a few years ago -- $60 or so, I think.
>>>>>>
>>>>>> Also, NFB's Independence Market (which you can get to from the NFB
>>>> website)
>>>>>> has talking BP systems.
>>>>>>
>>>>>> Mike Freeman
>>>>>>
>>>>>>
>>>>>> -----Original Message-----
>>>>>> From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On
>>>>>> Behalf
>>>> Of
>>>>>> sayegh.mary at gmail.com
>>>>>> Sent: Saturday, March 15, 2014 6:13 PM
>>>>>> To: Colleen Roth; Diabetes Talk for the Blind
>>>>>> Subject: Re: [Diabetes-talk] help being blind is all right but being
>>>> blind
>>>>>> and diabetic is not good at all
>>>>>>
>>>>>> Where can I get this talking blood pressure monitor and how much is 
>>>>>> it?
>>>>>> Mary
>>>>>>
>>>>>> Sent from my iPhone
>>>>>>
>>>>>>> On Mar 15, 2014, at 4:06 PM, Colleen Roth <n8tnv at att.net> wrote:
>>>>>>>
>>>>>>> Hi Mike,
>>>>>>> The Talking Blood Pressure Monitor my husband has is exactly the
>>>>>>> same as the doctor uses.
>>>>>>> As a matter of fact, ours is the newer version of the one in our
>>>> doctor's
>>>>>> office.
>>>>>>> Colleen Roth
>>>>>>> On Fri, 14 Mar 2014 15:28:25 -0700, Mike Freeman wrote:
>>>>>>>
>>>>>>>
>>>>>>>> I thought a CD came with the count-a-dose.
>>>>>>>>
>>>>>>>> As for BP machines, I'm not sure *any* home machine is as good as
>>>>>>>> that which one finds in a doctor's office.
>>>>>>>>
>>>>>>>> Mike
>>>>>>>>
>>>>>>>>
>>>>>>>> -----Original Message-----
>>>>>>>> From: Diabetes-talk [mailto:diabetes-talk-bounces at nfbnet.org] On
>>>>>>>> Behalf Of Fidano
>>>>>>>> Sent: Friday, March 14, 2014 2:58 PM
>>>>>>>> To: Diabetes Talk for the Blind
>>>>>>>> Subject: Re: [Diabetes-talk] help being blind is all right but
>>>>>>>> being blind and diabetic is not good at all
>>>>>>>>
>>>>>>>> I've not used the count a dose, but doesn't the NFB store  offer 
>>>>>>>> this?
>>>>>>>> thought maybe they would have  some  info available for using it
>>>>>>>> in Braille or electronic format?
>>>>>>>> But am curious about the BP cuff.. its audible? and Did she tell
>>>>>>>> you how well it worked compared to what she might use?..
>>>>>>>> Tamera
>>>>>>>>
>>>>>>>> --------------------------------------------------
>>>>>>>> From: "Dawn" <dlanting at bex.net>
>>>>>>>> Sent: Friday, March 14, 2014 1:08 PM
>>>>>>>> To: <diabetes-talk at nfbnet.org>
>>>>>>>> Subject: [Diabetes-talk] help being blind is all right but being
>>>>>>>> blind and adiabetic is not good at all
>>>>>>>>
>>>>>>>>> Hello  well I got a count a dose in the mail today  I had a
>>>>>>>>> visiting nurse out here to take my blood pressure with my new
>>>>>>>>> talking blood pressure cuff she showed me how to use it  but when
>>>>>>>>> it came to the count a dose she had no clue  the doctor had no
>>>>>>>>> clue it came with a disk  but it is one that my computer can not
>>>>>>>>> read  I take two different insulins  I take one hundred units
>>>>>>>>> twice aday of ythe Lantus then I take a short acting insulin
>>>>>>>>> three times a day  forty five units I can use the ccount a dose
>>>>>>>>> thing with that because it goes up to fifty units  but no one can
>>>>>>>>> tell me how to work it I have a friend draw up my needles  but I
>>>>>>>>> need to be able to do ythis myself I want to be independent  but
>>>>>>>>> it don't seem possible  I take a total of five shots a day  plus
>>>>>>>>> one more shot once a week the mmedicne  that works with insulin
>>>>>>>>> anyone have anyclue  what I am to do??? Thanks so much and have a
>>>>>>>>> great day
>>>>>>>>>
>>>>>>>>> _______________________________________________
>>>>>>>>> Diabetes-talk mailing list
>>>>>>>>> Diabetes-talk at nfbnet.org
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>>>>>>>>> Diabetes-talk:
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>>>>>>>>> %40
>>>>>>>>> co
>>>>>>>>> mcast.net
>>>>>>>>
>>>>>>>>
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>>>>>>>>
>>>>>>>>
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>>>>>>
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>>>>>>
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>>>>>
>>>>>
>>>>> _______________________________________________
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>>
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> 
> 
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