Kidney Probs

[Christina McCurdy]

On Tuesday, April 12, i went to the doctor about my diabetes (have had Type I for 19 years) and this is the first time i have seen him since i had my son, who is now about to be 8 months old.  He checked my urine (did a 24 hour catch, if any of you know about that?) and said i have kidney problems.  He said i should not even think about getting pregnant again, but that he wont say "never again" just yet.  I am 23 years old and my husband is 29, and we have only one son, so we are devistated.  Dr said that within 5-10 years, 15 if i am lucky, i will be on dialysis.  Do any of you have any information on this?  I have looked into kidney transplants and being put on dialysis while i went through a second pregnancy, but it does not look good.  I am really upset and scared, cause my son will only be at most 15 when i would go on dialysis, and people usually only live 10 years or so on dialysis...he would be 25 when i died and i would never see my grandchildren.  I have been really really upset about this, and i need prayers and whatever else you can tell me.  We have only been married a year and a half, got pregnant 3 months into marriage, son was 10 weeks preemie and now we find this out.  Our marriage is going through the loops, so please pray for us and send me any stories you might have to give us encouragementor information.. Thanks so much to all of you!!

[JDRF-Team-wak]

I am not a physician but the mom of a type 1 and the daughter of a type 2 diabetic.  I have been in a similar situation that looked grim when I was diagnosed with cancer a few weeks after my daughter was diagnosed with diabetes. She was 5 ˝ at the time.  I was devastated when I was told that I had cancer. My daughter needed me and my being ill or dying was not an option. I immediately went for a second and third opinion with specialists for my type of cancer.  I did my research on the internet and in the library.  I did the same for my daughter when she was diagnosed, I got a second opinion and found an endocrinologist that had the same beliefs as my husband and I do.
I was lucky that I live near NYC and found a doctor that was sensitive to my needs and my family’s.  It has been 4 years and    my daughter h as her diabetes under control, and I have been cancer free, and healthy.  Who knows where I would be if I had not done my research and gone for the other opinions.
You need to be an advocate for your self and your family.  I would not take one doctors opinion, I would get several opinions till you find the doctor that can help you reach your needs.  You can contact your insurance company for specialists in kidney functions in your area.
I would also suggest counseling might help you and your husband get this rough time as emotions are running high along with the stress of a toddler.
I will keep you in my thoughts. Please check back and let us know how you are doing.

[JDRF-Team-LRS]

Do take heart with WAK's advice.  I'm also not a physician, but a long time diabetic.  I've had Type 1 for over 35 years and am healthy; it is likely taht you can be, too.

Was your lab work evaluated by an endocrinologist or a "general physician"?  An endo specializes in diabetes and sees a lot of kidney damage or kidney disease issues and can distinguish between them.  Kidney damage could be serious; OTOH it can also be similar to "knee damage" when we fall & scrape our knees.  We might be sore for a while & we might get a bruise or a scab, but the knee still does its intended function.  

Are you taking any blood pressure medicine?  A diabetes specialist almost always encourages us DMers to consider taking an ACE inhibitor even with normal BP, because this class of BP meds has been shown to offer kidney protection.  You didn't mention this in your msg, and that got methinking that perhaps you're not (yet)being followed by a specialist.

Considering another pregnancy is something to discuss with your endo and a team of high-risk pregnancy specialists.  They can discuss your unique situation and options.  I hope you can also consider adoption as a way to expand your family.  

Finally, if you have serious kidney disease, dialysis may be one course of action and kidney/pancreas transplant may be another.  As WAK suggests, as you move thru the scary first days & weeks of hearing your doc's initial words, begin to become an expert on all these matters -- visit bookstores, reputable websites, and -- importantly -- seek 2nd or 3rd medical opinions from practitioners at the best facilities you can get to.

Here's a good website on kidney issues... who knows?  There may be clinical trials going on for some new treatments in your area.  Good luck ... and may youhave many thousands of days to help your daughter grow up.

http://www.niddk.nih.gov/

[Christina McCurdy]

Thanks for your posts.  I am on HCTZ for fluid and Altace (ACE inhibitor) for BP.  I did a 24 hour urine catch and that is where he found the "protein."  One thing i did not understand is that...I have been spilling protein since i was still seeing my pediatric endo, when i was 15...23 now.  And the endo acted as if it was a new occurance?  I wanted to ask him had it gotten worse, or is it the same for that reason.  He has given me questionable advice before.  My OB said i did not need to have another baby, but he works with my mom(mammographer), so i think that was more to cover his head than to help me in the long run.  My husband and I did see a high risk OB that specializes in diabetes, and he said I should be fine to have another pregnancy, but that was b4 the "discovery" of the protein. i dont know if he knew about it or not at the time?  I had not had the most recent urine test at that time, that was right after i had my son.  I have been crying and crying and i am one of those that was raised not to cry for any reason.  In your opinion, should i wait til i see the nephrologist before i do anything like having a tubal ligation?

[JDRF-Team-LRS]

In your situation, I would ask my endo for the printed lab reports from "this" visit as well as the history of reports that he has.  Bring those with you to a nephrologist.

If I were feeling as emotional as you are, I would avoid making all important and potentially irreversible decisions.  Having a tubal is a decision that should be evaluated when you & your hubby are in a position to think thru the whole issue.  In the short term, since you have conflicting info on the current risks to you & your potential baby, it is reasonable to avoid getting pregnant.

For those of us with no children "of our own," it may be easier to see the treasure you already have.  I can certainly relate to the yearning for a child and yet I have come to understand that my stepdaughter is *my* treasure ... and that others would yearn for the relationship that we have, too.  

I can hear your pain and can't say anything to diminish it.  If you find that you're really stuck in this dark, scared, depressing mood, however, you might consider finding a good counselor to help you sort out the many emotions & issues.  Keep in touch, okay?