Re: PAI Blood Glucose Testing Guideline

[Guest guest]

Karyn and all,

I've been in the hospital again and just got home today so I'm way behind on

my e-mail and will probably have to delete most. Anyway, I saw this one you

sent and although I've only skimmed it, I just wanted to reinforce the

importance of your suggestion. Just today in the hospital on their patient

channel, there was a really good show on diabetes. It was saying that most

people actually have type 2 diabetes for about 10 years prior to it being

diagnosed by having an elevated fasting blood sugar. They said that many people

already have damage done to their body (mostly eyes, kidneys, or heart) from

uncontrolled diabetes before they are diagnosed. By the way, even though it's

now been over 18 months since I was diagnosed with type II diabetes, I have

never had a fasting blood sugar higher than about 140.

As those of us who have diabetes know, the symptoms are often vague or even

non-existent in the beginning. In my case, I began having problems with my

blood sugar going low 3 months after the return of my acute panc attacks. Now,

I am a very intelligent woman. I have very close friend with serious type I

diabetes. My mother has type II diabetes, even though she has never been

overweight and is so physically active she amazes all of us. For the most part

her diabetes is mild and is controlled with diet and exercise -most likely

because her weight is good and she's so active. My daughter's grandmother died

from diabetes that started off as type II. She had a heart attack and bypass

surgery in her early 40's. She was diagnosed with diabetes after her heart

surgery. This was back in the late 70's, so personal blood sugar monitors

weren't available (as far as I know). We didn't know it at the time, but I feel

sure she'd had diabetes for many years prior to her diagnosis and it was

probably at least partially responsible for her heart problems. She had 8

children and the last 4 were very large babies, with the largest weighing almost

13 lbs at birth! Anyway, she was poor, didn't drive, and really didn't have the

income to eat the way she was supposed to eat. She would often run out of her

medication and go a week or so without getting it refilled because she either

didn't have a way to get to the store or she didn't have the $1.00 or so that

medicaid charged for prescriptions back then. Never mind that many of her kids

or kids-in-law would have been happy to get her meds, but she wouldn't tell us

she was out or that she didn't have the money to get it, 'because she didn't

want to bother us'! For many years, she didn't do a good job of monitoring or

controlling her diabetes. I was only 16 when I married her son (my first

husband) and knew nothing about diabetes. I was the one (at only 18 years old)

to get all the info from her doctors and getting her approved for SSI after her

heart attack because the doctors said she absolutely could not work on a job any

longer. Had I known the importance of monitoring her blood sugar closer and

realized the harm that she was doing to her body, I feel pretty sure I could

have persuaded her to take it more seriously. I was the 'apple of her eye' even

though I was her daughter-in-law and she and I were very close. I'm not blaming

myself because I was just a kid, but I do wish I'd understood the long term

consequences of uncontrolled diabetes. Her son and I divorced in 1988, but I

still kept in touch with her to some degree and we had a loving relationship til

she died. She lost the lower half of one leg due to an infection in the early

90's when she was in her mid 50's. I didn't get to see her as often as I'd have

liked after and I divorced. I was in college, raising my daughter, then

re-married and began my career working for the department of the army. I still

tried to pop in from time to time since I worked only a few minutes from where

she lived. However, my life was busy and I lived in the next town, about 45

mintues away.

Anyway, according to (my ex and Nikki's dad) and his sisters and

brothers, their mother really did take the diabetes seriously after she lost her

leg. She took the loss of the leg in stride and never complained about it

However, I think it was kind of a situation of too little, too late. She got an

infection in her toe on her remaining foot. She was doing her best to take care

of it do everything the doctors told her to do. I don't think even the doctors

realized how bad the infection was until they got her in the hospital. Gangrene

set in and she was gone in a matter of days after they put her in the hospital.

This was around 1995 and I think she was about 60.

Back to my diabetes. The first indication was when my mom and I had gone to

B'ham (100 miles away) for a doctor's appt. I suddenly felt very cold, then

clammy, dizzy, nauseated - just really weird. My mother told me it sounded like

my blood sugar had bottomed out. She didn't have her glucose monitor, so we

couldn't check it. However, she gave me some jelly beans and soon I felt fine.

She wanted me to bring her monitor home with me so that I could check if I had

another episode. I insisted I was fine and it was no big deal. The very next

morning, I had another episode. This time, I called my mom to bring my monitor.

I had eaten a little something by the time she got there and was actually

feeling fine. My blood sugar was in the 50's, so there's really no way of

knowing how low it had been. I then relented to borrowing my mother's monitor

until I could get test strips for mine. I'd had a blood sugar monitor for a

while because my mother was forever on my case and wanted me to check my blood

sugar if I sneezed! Anyway, this was just another case of my mother being right!

Thankfully, I did listen to her. I soon found that if I went more than two

hours without eating, my blood sugar dropped to around 40 to 70. As long as I

ate every two hours (while awake) I did okay - well, once some of the members of

PAI told me that eating jelly beans or something with only sugar was not the

best thing for an episode of low blood sugar. I think it was Kimber who told me

I would do better with something that had a mix of protein and cards. Because

I'd had the gastric bypass and I can't eat the quantity of food that a dietician

might recommend for a 'normal' patient, I chose to meet with a nutritionist who

was very familar with gastric bypass patients. He told me what I needed to

strive for with my meals and snacks - as most of you know, you need a mix of

protein, carbs, and just a little fat. Eating the way the nutritionist told me

and making sure I ate every two hours helped tremendously. For a couple of

months, I just had trouble with my blood sugar going low. However, it soon

began going high and as time went on - the highest high blood sugar crept higher

and higher. Sill, it has never been to a really critical high blood sugar. I

think the highest ever was just over 300 and the majority of the time, it only

goes up no higher than 200, even when it does go up. I am still controlling it

with just diet except when I am in the hospital with a panc flare. I usually

have to be given insulin when I'm in the hospital. However, this time, I made it

through the hospital stay with no insulinl

My panc attacks began in January 2000, about 18 months after I had my

gallbladder removed. Actually, I also feel pretty sure I'd been having mini

panc attacks for about 3 or 4 years prior to first 'documented' attack. After a

year of problems, things got much better. However, I now realize I was still

having mini attacks even when I was just doing my best to ignore the pain in my

gut. I had close to a two year reprieve with no major attacks. Again, I was

still having what I now know were probably mini panc attacks. In July 2002, I

had an attack that was no doubt acute panc (as evidenced by an elevated amylase,

lipase, and liver enzymes. It was October 2002 when the low blood sugar

problems began and by December 2002, I was having episodes of elevated blood

sugar. I had NO idea that diabetes could make you feel so crappy! When I'd

have fluctuations in my blood sugar, it just made me feel tired, crazed.

However, because I had talked with the nutritionist, I just became more devoted

to eating as I knew I should and things got better. In January 2003, I was

diagnosed with type II diabetes on my first visit to the endocrinologist. This

was despite the fact that I was at my lowest weight since I was about 16 or 17

and was no longer at all overweight! He told me to continue doing what I was

doing and to incorporate exercise (not doing so good in that dept.). He told me

he really wanted to keep me off meds for diabetes since I have liver disease and

the meds for diabetes are hard on your liver. He also told me that he felt sure

that the diabetes was from the repeat attacks of acute panc despite the obvious

hereditary risk since my mom has type II diabetes. However, it really didn't

matter what has caused the diabetes. We just need to deal with it and keep it

under control.

Well, again I've written a book. However, I just wanted to emphasize the

importance of being in control of one's own health. Personally, I think even

people without cp should periodically check their blood sugar and not just a

once or twice a year fasting morning blood test. I think anyone with cp should

have their own blood sugar monitor and test once or twice a week or any time

you're having symptoms.

Oh, I thought I was odd because my problems started off with only having

episodes of low blood sugar and no high. However, when I met with a diabetes

education counselor (after being diagnosed officially with type II diabetes),

she told me that diabetes almost always starts with episodes of just low blood

sugar before it progresses to episodes of high blood sugar. She said that most

people just don't know they are having low blood sugar so they totally miss the

symptoms.

My sis-in-law has congestive heart failure. She's had two heart bypasses

and more cardiac caths than I can count. She first had an episode of high blood

sugar when in the hospital with fluid overload because of the congestive heart

failure. I think it was around 240. I begged her to go ahead and get a monitor

and start checking her blood sugar periodically. This woman was a nurse and at

one time was a nursing instructor at a local college. She now owns her own

successful insurance business. She refused to get a blood sugar monitor and

insisted it was just a fluke that the blood sugar was high. About 3 months

later, she had a fasting blood sugar at the doctor's office that was over 300.

He immediately put her on oral meds. I again begged her to please get a monitor

and watch it closely. She refused and said that she couldn't stand the thoughts

of being diagnosed with another illness. I certainly understand that, but

diabetes is not something to stick your head in the sand with. She did finally

get a monitor a few weeks later. The very first time she check her blood sugar

with the monitor, it was over 500. She and I both assumed she might have gotten

a faulty monitor. I told her to go to the pharmacy and have them give her a

different monitor. She said she felt fine and would do that in the morning.

She did and it was again over 500 with a different monitor. The pharmacist even

called the monitor company to make sure they'd done the testing correctly and

that the monitor wasn't defective. She then called her primary care doc and of

course he told her to get her butt in there. Her blood sugar was again over 500

in his office, so needless to say she was put in the hospital. She's been

battling her blood sugar for several months with various oral meds and diet.

She's lost about 30-40 lbs and seemed to be doing everything right. The

internal med doc switched her to insulin and they still couldn't get the blood

sugar under control. She went to a new (and wonderful) endo and through working

with him, a dietician, and buying an exercise bike, she's finally getting the

blood sugar under control. The first HBA1C the internal med doc did on her was

over 10, so it was obvious her blood sugar had been going dangerously high for

some time. It doesn't do much good to think about as we cannot turn back time.

However, I just wonder how long she's actually been a diabetic and how much of

an impact the diabetes had on the major damage to her heart. To make matters

worse, she has lost 3 very close friends to a combination of diabetes and heart

failure just in the last 3 to 4 months. She had her first heart attack and

bypass when she was about 50. She's now 60 years old. She still works full

time and leads a pretty active life - as far as entertaining and socializing

goes. I admire her because there's no way I could continue working with the

health problems she has. However, she says she absolutely loves her job, so I

think the job may help prolong her life. She and I have talked about the

reality that she probably will never see 70 and even seeing 65 is rather iffy.

She and I can talk about this reality. I love her but she is my sis-in-law and

not my sis so I can be a little more objective about the reality that her life

span has definitely been shortened. My husband and his other sis won't let her

even talk about the possibility of her death.

I would never say this to her, but I will forever wonder if the diabetes had

been diagnosed 10 years ago, if some of the damage to her heart could have been

prevented.

If this e-mail makes even one person get their head out of the sand and be aware

of the possibility that they have diabetes, then my time will have been well

spent.

Take care all,

Alabama

[Guest guest]

,

You wrote, " If this e-mail makes even one person aware of the

possibility that they have diabetes, then my time will have been

well spent. "

I understand the sentiment. Amen. And, thank you for your efforts,

hard work, dedication, support, and love. It is about one person

helping another person to help another person. If that goal is

achieved, then I should say that it was a day well lived.

When we care for others, our bodies can only be in a healing state.

So, I am sure you will continue to improve, too.

Karyn , RN

Exec. Director, PAI