Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Thursday, October 16, 2008

The New Piece of the Pie

I’ve kind of been going back and forth as to whether or not I should share my latest news, or not, but I guess here goes. I am 12w3d pregnant, and so far so good. Outside of some severe morning sickness (which has now gone on its merry way) I’ve been okay!

For those that don’t know (most do), my pregnancy is high risk. I have type 1 diabetes (for 17 years), gastroparesis (delayed gastric emptying, problems with my vagus nerve in my stomach), hypoglycemic unawareness (I don’t feel my low blood sugars), degenerative disc disease, and spondylosis (arthritis in my spinal canal and subsequent narrowing).

I have two children, ages 8 and 5. I am also newly married, on July 2 of this year. I am 30 years old.

Bob and I decided to try and have children right away, immediately after we got married. He doesn’t have any biological children, although he calls my two his own. Our reasoning to try right away is because I am 30 and have had diabetes for 17 years. It is known (and I was cautioned) by my doctors that if I started to have kidney problems or eye problems, those conditions typically accelerate during pregnancy which would mean that my personal health risk (and the baby’s risk) would be much higher if I had those diabetes complications. I consulted with all my doctors, had my meds changed around, worked on my blood sugars, and got the okay to be pregnant. I had my kidneys and eyes checked and both were great. Since I have been diabetic for so long, I felt like it was only a matter of time before I had kidney or eye complications so I figured the sooner I have this child, the better.

So my husband and I got pregnant, IMMEDIATELY (like the very first week we tried!)

I have bi-weekly appointments with my endocrinologist and at my most recent appointment with my endocrinologist she told me that although before the pregnancy I did not have noticeable issues with my kidneys she now believes I have stage 2 diabetic nephropathy (There are 5 stages, the final being End Stage Renal Disease). As stated before, this condition typically accelerates during pregnancy, so I can expect my kidney situation to worsen throughout the pregnancy. However, after I give birth, my kidneys should return to the health they are at currently, which is easily treatable with medication that cannot be taken during pregnancy because it causes birth defects.

Almost all women with nephropathy develop pre-eclampsia and 90% deliver before 34 weeks gestation. 70% or more of women with diabetic nephropathy deliver via c-section.

I am sad, sad, sad. I just feel like we did all we could to ensure this pregnancy was as healthy as possible. We changed my meds around. I see the doctor constantly. I’m under constant stress health-wise, and although I knew this would be hard, it felt like I could do it. This throws an entire new wrench into the whole pregnancy. Not to mention aside from that I am dealing with the diagnosis of a new life-long eventually life threatening condition. (I know, over-dramatization! My mom has taken meds for her kidneys for over 10 years with no progression, but still!)

The day after I received my diagnosis I went and bought diamond earrings. True to form, I’ve been wearing my diamond earrings and a beautiful diamond heart necklace my mother in law gave me because it just seems the jewels lift my heart and mind. It sounds silly, but the sadness I feel is intense. I am 30. I feel young, not kidney disease material! That may not be rational, but I don’t feel very rational. I feel cheated of health.

I know my chances of returning to almost normal kidney function after I deliver is very high, and I am thankful that as of right now my blood pressure is normal. Knowing these things, however, does not stop up my sadness. I can’t turn back now. However cliché this is, I feel as though I am on a train that has no stops, a direct shot straight to wherever I am going, and wherever that takes me (us) I sincerely hope that the end result is a baby with health enough to survive.

6 comments:

Scott K. Johnson said...

Hey Sarah, that sucks and feeling the intense sadness is totally expected and understood.

That doesn't make it any easier.

We're all pulling for you out here, and if you and/or the family need a local T1'er to chat with, I'm here.

Hang in there.

Lyrehca said...

Hi--I'd been wondering what was up with you.

First of all, it is never silly to wear diamonds every day. Particularly diamond earrings. You do whatever you need to do.

Second, I'm sorry to read about your kidney issues, and it is understandable that you're grieving about feeling cheated of health. Dealing with a new complication can be like dealing with being diagnosed with diabetes all over again. I hope the feelings of sadness abate as soon as you feel ready for it.

A few questions--how is the baby actually doing? Strong heartbeats? Good nuchal fold readings (or is it too early for that?) Has there been any indication that the baby might have medical concerns, other than possibly (you could be in that ten percent!) coming before 34 weeks? And in more familiar news, how are your sugars doing?

Feel free to ignore my questions if you're not up for it.

Good luck with everything. As you write, it will be hard, but you *can* do it.

Particularly while wearing some dazzling jewelry.

Flmgodog said...

Sarah-
So glad you posted so we all know how you are doing. I keep checking to see if you have updated.
I am sorry to hear about the extra stress with the kidney issues. I too had kidney stuff going on while pregnant (but I knew about mine before). Hopefully you will be fine and the baby will be great. Just means you have to work a little harder at this pregnancy (like diabetes and your other things aren't enough).

Lot of us out here willing and able to listen anytime you need to vent!

I truly wish you much luck. I know how hard it can be.

MileMasterSarah said...

thanks for the kind comments! I am feeling much better today :)

how is the baby actually doing?

The baby thus far is doing really well! The baby is right on schedule for size and has a heart rate of 166bpm. I am not having a nuchal scan. I elected to not have most screenings, other than a level 2 ultrasound which is not optional anyhow.

How are your sugars doing?
I have been struggling with my gastroparesis but I am doing better than I was the first month of pregnancy. They aren't perfect, and neither I nor my doctor anticipate my a1c's to be in the 5's at any point in this pregnancy. However, we are shooting to have it at 6. Currently it is 7.5. We are working really hard at controlling sugars, and finding new ways and things to eat that don't cause discomfort or wild swings.

Minnesota Nice said...

Oh gosh Sarah. Major suckage.
Glad you reported that you're feeling better.
I hatehatehatehate diabetes.

BTW - you were married on my birthday. How cool is that?

uwan said...

I am very sad to read your articles....I hope your condition will be okay soon....