Frustration with Diabetes

By MrsHunter10 Latest Reply 2010-07-15 09:37:55 -0500
Started 2010-07-14 12:17:38 -0500

Hey everyone…I'm new to this site and so far I'm truly enjoying reading all the discussions that have been posted. I've gotten some great tools to use so far!

I just wanted to share my story and see if anyone has had anything similar happen to them.

In March of 2004, I gave birth to my second child. Overall, the pregnancy was somewhat normal. I had some high blood pressure, was on bed rest and my son was born a month early (it was planned, due to my 1st child being born early).

When my son was 8 weeks old, I started having awful pains in my lower back that radiated into my left side. I was doubled over in pain on my bathroom floor and couldn't get up. I was taken to the ER and the doctors there weren't really sure what was going on. I was quickly transferred to the ICU and had a million tests done. Within 32 hours, I was in critical condition.

I found out that I had gall stones that were blocking the bile duct in the pancreas. The bile had backed up so severely that it was eating away at my pancreas.

To make a long story short, I had surgery to remove my gall bladder and the majority (90%) of my pancreas. I was hospitalized for 3 months and it took me 6 months to recover at home.

During my hospitalization, I was on a constant insulin drip. My sugars were all over the place. Now mind you, I had no history of diabetes prior to this. I was 21 at the time and I'm 27 now.

After I got home and got rehab'd (I had thrown a blood clot in the hospital, so I had to learn how to walk again), I was told that I would always be a diabetic. I went 3 years with NO MEDS, my body had apparently adjusted to me not having all of my pancreas. Then one day, I passed out at work.
My doctor claimed it was Type 2 diabetes and put me on Metformin and Januvia. Wow, what a waste that was. The meds didn't work…why?…because I wasn't a Type 2 diabetic.

I found a new specialist and he put me on the Humalog Insulin pens. I also discovered that my Vitamins D and A were dangerously low and that my C-Peptide level (the panel that determines how much insulin your pancreas produces) was at a 0.02%. The normal readings on this is 0.5-1.0%.

But only after 4 months did the pens stop working. My blood sugars were anywhere between 200 and 450. My specialist didn't believe in insulin pumps (he is very old fashioned) and refused to recommend me for getting one.
So, I found another specialist that would. It took 3 months just for my insurance company to approve the pump medically necessary.

The pump is working ok so far. It has it's ups and downs. I'm on the Medtronic MiniMed 723 (I believe it's the newest one out). It's extremely hard for me some days to account for my carbs. Some days, I count the exact number of carbs and I'm still crashing with a blood sugar of 52 or 48. I tried using the dual wave and square wave bolus options, but my blood sugars are not where they should be. My A1C has gone from 10.5 to 8 in a matter of 3 months, so my doctor is happy, but I'm not.

There are some days where I have a low-fat, no carb meal and my blood sugar is 250. It's beyond frustration. I've checked into getting a pancreas transplant but I'm not a candidate for the surgery because my A1C is too high. They told me to get on the pump and get my sugars controlled, then they could help me.
But the whole transplant issue is a huge, huge debate. There are so many pros and cons, that I can't wrap my mind around it.

My biggest fear and concern is this…I'm 27 years old. I'm married and we have a 6 yr old and a 7 yr old. How do I face the fact that I will be attached to an insulin pump the rest of my life, dealing with blood sugars going up and down? How do I deal with the fact that I'm already having complications with my circulatory system (My legs swell if I'm on my feet for more than 2 hours)?
If I have the transplant, there's no guarantee that I will be able to get off the insulin. The transplant only lasts 4-7 years. How do I deal with the fact that my kidneys will most likely fail?
I don't want my children to grow up without their mom. I am so afraid that diabetes is going to take my life before I'm ready to go.
How does one person deal with all this?

8 replies

MrsHunter10 2010-07-15 09:37:55 -0500 Report

Thank you for sharing. It is very hard for me to picture my future right now. My father passed away in 2007 to a heart attack. He had Type 2 diabetes and had 95% blockage in 5 of his arteries. He was only 52. It scares me immensely that I'm already having circulatory problems…I don't want to end up like him. Although he didn't take care of himself. He took meds and insulin but still thought he could eat whatever he wanted…his A1C was 13 before he died.

Graylin Bee
Graylin Bee 2010-07-14 20:56:02 -0500 Report

One person does it one day, one hour, and even one minute at a time. You're strong. You've researched.You're trying to learn as much as you can.
I had a freind who often woried that her husband's pancreatic cancer would return and he would not live to see their children graduate from school. She died suddenly frrom a stroke when the kids were 6,9 and 11. We can learn all the statistics. We might know what the odds are, or the per centages. But we don't know the future.
What we think we know about the future can change. In Jan I was learning I had a condition that contributed to my father's death. He had venous stasis for many years. He had chronic leg ulcers and constant pain. I believed that was my future. Betweeen his diagnosis and mine medicine had made great strides in treating venous reflux and venous stasis. My odds of leading a more active and less painful life are much better. Also my father was less compliant with his treatment in the earlier stages. I face the fact of having to comply with my Drs. orders to wear compression stockings any time I am sitting or standing. Even though vein ablation has helped imensely, if I try to sit, stand, or walk without the stockings on with in a few minutes my legs begin to swell and hurt.
Also in Jan I learned I have diabetes. Sometimes, like you, I find it hard to handle the fear. There are so many what ifs.
Vein abalation surgery that has helped me involves technology that is only 5-10 yrs old. What if I develop another problem in 5-10 years. Who knows what technologies will be available by then.

MAYS 2010-07-14 16:51:31 -0500 Report

Welcome to Diabetic Connect !
We had a discussion here pertaining to pancreatic transplants, I am having trouble locating the article at this time, but this may interest you:

Organ transplants are much more serious, and complicated than most people can ever imagine, and it's not for every one.


MrsHunter10 2010-07-15 09:33:11 -0500 Report

Thanks Mays…I've looked into Islet Cell Transplants, but considering that I don't have a pancreas to transplant these cells onto, it's not a good option for me. I'm hoping technology goes far with diabetic research and meds, etc. I'm sure I'm not the only one that is struggling with this!

RAYT721 2010-07-14 16:35:04 -0500 Report

Wow… it's rather hard to answer your questions without a medical degree and even with one, as you've already learned. It's good that you have a supportive new doctor. He is the one you really need to put your trust in as far as the medical side of the issues. On the emotional side, we can provide alot of support but you may wish to look into counseling for steady ongoing support for the fears you have. You have been through alot and perhaps there is still more to go through. Prayer may not help but it can't hurt!

MrsHunter10 2010-07-15 09:28:05 -0500 Report

Thank you so much. I do trust my doctor and I know he'll guide me down the right road. I do need to look into counseling for the emotional part.