36 yrs. old type 1 for 27 yrs. healthy and worried!

[TammyV]

I am 36 year old mother of 3 sons, I have type 1 diabetes for 27 years I have read most of the post and can answer a lot of the questions because I have lived with it for over 27 years of my life. I am heathy by most means, I have been on an insulin pump for over 8 years. I have lost several family members due to type 1 diabetes over the years and at 36 I am very concerned. I lost my aunt whom was in her early 40's slowly, she was blind on dialisis and falling apart, it was a horrible death. My 12 year old nephew died, he was a diabetic of 7 years when we lost him. He was very healthy & very much in control, he had got the pump 6 months prior Long story short, he changed his pump prior to going to bed one night and the site had come out under the sticker and he was unaware, it was horrible! And a 22 year old died after removing his pump before surfing and drowned while in the water due to hyperglycemia. This is a very serious desease that I do not take for granted. As normal as I wanted to be all these years I had to realise how different my body works. I worry everyday about the children with pumps, my nephews glucose motiter did not recognize his blood sugar was over 1800 it read 256 and he was spilling no ketotones. It has not been an easy road, I feel my body changing, even know my diabetes are in complete control, I have not been perfect but I have always been a good diabetic. I would love to answer any questions anyone has but I would also really enjoy talking to anyone who is a type 1 diabetic for as many years as myself or longer. My childhood doctor gave me 30 yrs.

[JDRF-Team-wak]

I am not a physician, but the mom of a type one diabetic, on the pump.  I realize that being on the pump is sometimes scary, but they’re few key things you need to do when on the pump.   The first is have a doctor that is pro pump and willing to help you regulate your basal and carbs so that you have good A1C.  Most of the newer pumps are so smart; they do the math for you.  The other is that you need to be aware that when on the pump you need to check often, my daughter checks her blood between 6-10 times a days. If she is out of target, she checks for air bubbles and ketones.  Even if she has trace ketones, she has extra fluids; we treat it seriously so that there are few problems.  Ketoacidosis is very serious as you already know.    You need to be proactive against it.

The other is you need to check that your meter is working properly.  We have used several meters and for a while my daughter was using 2 because she liked one and I liked the other.  One day she used both every time and it seems that one was not as accurate as the other.  I would check with your doctor and see which one he/ she recommends.

[quatlox]

Hi,  I have been a diabetic for 34 years.  I am now 48.  I have never heard of someones BS going as high as your nephews 1800,  WoW!  I didn't think you could die of a HIGH BS, I just thought that bad control would give you BIG problems in the future like your Aunt (sorry to hear about her and her problems with diabeties).

I never really watched or took my BS until last year, Yes, I lived for 33 years as a diabetic and never checked my sugars.  I just always ate right and took good care of myself and did tons of vitamins and herbs.  I now check my BS no less than 4 times a day and I am on the same dose of insulin that I have been on before I checked my BS, only I do a sliding scale now.  I guess I was doing something right.

The main reason I check my BS is because of the LOWS.  I am scared to death that I will go low and no one will be there to help me.  In my case a LOW will Kill me Today, but a HIGH will only make me lose time at the end of my life and maybe make my life a torment like your Aunt's which I don't want either.  Thats why I take lots of vitamins and herbs to help my health and watch my diet.  I have been doing vitamins and herbs since I was 12 years old and I really think it has helped a lot, as I am healthier than most of my friends that have NO problems.

I would take good care of yourself, eat right take vitamins and herbs, exercise and always check your Blood Sugars on a regular basis.  You should be all right, but remember stress will make your BS go up and I have a feeling that all of this worrying you are doing is giving you a lot of stress.

Sorry I have no magical answers, but live as best as you can and you should live to a good old age.

Bob

[TammyV]

It thrills me to talk to someone with type 1 that has had it longer than I. I have a question for you, are you on a pump? My nephew was on a pump like I am. The pump is filled with Humalog which works right now, so being without it all night and half the next day was why his sugars were so high. My nephew John was sick but coherent so when his monitor read 256, we thought he had the flu and so did the ER until blood was drawn, over 1800. Let me tell you I was with him every minute and it was a horrible death and laying in an ER slowly dying and not one doctor helping him. My sister donated his organs but they were all septic from his sugars being so high. My pump scares me! I fealt so normal before my pump and I recently asked my doctor to put me back on shots but he told me no. Every diabetic I hear of dying besides my family members were on pumps. My aunt slowly went down hill, she was not on a pump but never took care of herself and as a child I remember saying I would never be like her. I am over weight (I am extremely body consience) like 40lbs and can not get it off no matter what excercise or strict diet I do. I want to be around for my children but as healthy as I am I am scared.

[JDRF Team SGG]

I have had type 1 diabetes for 37 years... I am now 49 and healthy. No complications, no beginnings of complications. I use a combination of Lantus and Novalog, and because my a1c numbers are great, it has not been suggested that I change this for a pump. I believe that both pumps and the "poor man's pump" as the Lantus/Novalog or Humalog combination has been called, offer great control. But the real key to good control without highs OR lows is in testing. And this means using a glucometer even if the pump is doing tests as well. At least every now and then, it probably is wise to use a glucometer to just double-check the reading on the pump. If you really are afraid of the pump, but your doctor is not willing to work with you, try another doctor. I do know of the occasional person who uses a pump for a while but then opts for one reason or another to go back to shots. This should be the patient's choice as long as he or she can test often and adjust the numbers in order to maintain good control.

Most people do love their pumps, though. And most people find that their a1c numbers go down closer to normal with a pump rather than with shots. I hope more people who use pumps will post here to encourage you.

But in the long run, if you live in fear and the encouragement from other pump users does not allay your fears, you may want to get another doctor's opinion about whether the pump is truly the best solution for you. Quality of life is important. I am able to easily maintain an a1c that never changes from 6.1 ever since starting on the Lantus, so it is possible to keep good control without a pump.

Pumps make it easier, though, and you should carefully weigh your fears vs. the control you can acheive with or without the pump before making any decision. Some diabetics actually switch back and forth from shots to pump, depending on activity or whether they are sick, etc. I personally have not heard of any other deaths that were due to pumps, although I have heard of infusions getting blocked. Even when wearing a pump, it is very important to check it often and if you start to feel funny in any way, check the pump FIRST before assuming that you have a virus. I am so sorry for the losses in your family -- your whole family must be devastated. I wish you a long and healthy life.

[GenX Diabetic]

I have been diabetic since I was 4. I was a youth counselor at a camp for diabetics when I was younger and it was a great teaching tool for understanding my response to humulin and exercise. I personally used Humalog for a period of 2 years and must say it nearly killed me. The ups and downs were physically devastating and caused me to have to constantly check blood sugars (eight times a day) and if there was any deviation in caloric intake or exercise, or if I had to work a little late, I would get ill. The doctors though they were panic attacks, because by the time I would get to the hospital my blood sugars would be ~400. (glucagon dump from the liver) so they increased my Humalog dosage, which caused the problem to become more severe. I reached a very critical point where I felt like I was having near unconscious moments, gained weight (had to eat more to combat dips in BS) and thought I was dying. Being a scientist I finally took matters into my own hands. I stopped using Humalog and just bought Humulin at the drug store (Warning!not recommended unless you've been trained) and got my sugars back to a normal, stable level minimizing the standard deviation. It took my a couple of years to recover, but the moment I made the change back, I felt normal again. It ruined my career due to my inability to control the Humalog induced fluctuations due to normal life situations. Go to a meeting and lunch is late, no problem now. Go out to eat and eat a little extra. Don't have to worry until later, still NPH in the system. Feeling great after 36 years as a diabetic. (still playing baseball as a matter of fact). Remember,if your Doctor isn't diabetic, they don't know what it feels like to be diabetic.