Tuesday, May 15, 2007

The next big adventure

We are heading into a new adventure. I haven't blogged about it before because I didn't know if it was really going to happen, but I have had many assurances from more than one doctor that indeed, it is.

In 3 weeks, give or take, I will be giving birth to our second child. A baby girl.

The decision to have another child even after I was diagnosed with PKD was not one we took lightly. We read a lot, we prayed a lot, we asked a lot of questions. But both my husband and I felt it was the right thing to do, and, truly, miracle of miracles, we got pregnant after 4 years of disappointment. During those 4 years, I had 4 consecutive miscarriages, "second infertility", and variety of tests that inevitably came back normal, much to the puzzlement of the doctors. It wasn't until an unrelated problem sent me in for a back MRI did we discover the PKD (although my OB still isn't convinced the miscarriages were related).

When I discovered I was pregnant, I immediately told my primary care physician, who suggested I find some other doctor outside my immediate area to treat me. He even went so far as to suggest I relocate, temporarily, to the DC area, to be treated somewhere there, where they could handle such a special case. I settled for treatment with a perinatologist in the Richmond area who has had experience with patients with PKD. As it was, there are 9 perinatologists on staff, and only 3 felt comfortable taking my case.

I have loved my doctor, and she has taken no chances with me. The pregnancy has not been an easy one, and I have been on a variety of medications for a variety of reasons: progesterone to help guard against early miscarriage, phenergen to help with the vomiting (I get as sick as a dog when I'm pregnant), procardia to help with preterm labor, my high blood pressure, and risk of pre-eclampsia. I have also been on full bedrest for weeks at a time throughout these 9 months.

Last week I finally understood how truly difficult my OB thought this pregnancy was going to be when she said, as she listened to my baby's extremely happy heartbeat, "And there's my little miracle baby. I can't believe we're here."

My nephrologist has also been following me closely, watching my creatnine levels and protein in my urine, to make sure my kidneys are still functioning well enough for the two of us. Like my OB, she has been pleasantly surprised at the outcome, and is relatively optimistic that my kidneys could possibly handle another pregnancy.

My OB (and my husband) are less optimistic, and I have blogged before about the possibility of taking permanent measures to guard against future pregnancies.

As I think about all of this, one phrase my OB said keeps reverberating in my brain:

Progressive disease and pregnancy--they don't mix.

She has a point.

This will probably indeed be my last pregnancy, whether or not we decide to take permanent measures. But I'm grateful that we've gotten this far, and that we will be blessed with two children who, so far as we know, have perfectly healthy kidneys.

I'll keep you posted.


Julia said...

Heather, congratulations! How wonderful!

I know thinking this is/could be your last preganacy is hard (as least it was for me) but I think that awareness made the experience of having Quinn and her baby stage especially much sweeter. We decided to stop at two after both were dx with pkd.

So...enjoy the next few weeks. Best wishes for safe journey here for baby girl and for you as well!

stephanie said...

that is great news ,I am very happy for you and your family.

Anonymous said...

Heather, congrats! I too am pregnant with our second child and also have PKD. We were married 13 years and went through much to have a child and the current pregnancy. I feel God has lead us to having children, and they are miracles. There is not a day that I am not grateful. My health is ok and when I feel bad I think it could be worst. As a nurse I see many worst cases and keep going on with the help of God. Best wishes and may you continue to be blessed.

Loni said...

congratulations Heather!

I too have polycystic kidney disease and had a difficult pregnancy. I ended up delivering at 25 weeks due to pre-eclampsia.

Ever since my little girl was born, I thought that I would never be able to have another child. But your story has gave me hope that although another pregnancy will be difficult on me, it is possible.

Best of luck to you and your family

Heather O. said...


I hope your daughter was okay. 25 weeks is awfully little!

Pre-eclampsia has been my doctor's worry all along, and she has had me on bedrest and medication for high blood pressure for a while. Fortunately, we are past 37 weeks at this point, so I have high hopes for a very healthy delivery. We even have a date to induce, should I go that far. I've been seeing my OB every week for months now, and every time I go she keeps shaking her head, and saying things like, "I'd never thought we'd get here." At one point, a nurse said, "Why are you so surprised she's doing so well?" and my OB said, "This woman has kidneys the size of footballs! And she's been able to carry a baby full term--it's amazing!"

I think she's right. It is amazing, and quite miraculous. We are very grateful.

Anonymous said...

Hi Heather!!!
This is the first time I have read your story. I found it on google. If you don't mind letting me know how old you are. I am 21 and I found out I had PKD at 18. I have an aggresive family history and have had problems with chronic hypertension. I have a son who is 18 months old and I would like to have another. My first pregnancy was not too bad. The doctors had some problems keeping my blood pressure under control. Since wanting another baby I have had a miscarriage and a difficult time getting pregnant. My problem is that my husband does not want me to have another baby, he wants to adopt. He is scared of something happening to me. My nephrologist does not think I should have anymore kids either and if I do I do not have much time to do it in. In my heart I just cannont except that. I get so upset when I think about it. I feel like my time is running out. My mother had four kids and her only problem was she had toxemia with my brother. She did not have the problems I have at that time. I am just so confused and I am not really sure who to talk to about it. I figured this would be kinda cool because your opinions are not biased.

Anonymous said...

Heather....Congratulations on your second lil one!

Im 20 years old and im pregnant with my 2nd child too. with my first i had major problems. not much with high blood pressure but with getting sick all the time and i mean non stop.. I lost so much weight it wasn't funny. And i also had a problem with my liver failing. PKD runs in my family and my mom is 41 and it is starting to affect her bad so i decided to look some information up and i found your blog and i started to think maybe i could have pkd and thats why none of the doctors could tell me what is wrong with me. With this pregnancy i am on a pill called zonfran...and that has helped a lil but not a lot. So do you think i could have PKD...Should i got checked now or wait until after i have this one? Well please please help me out...

Anonymous said...

Congratulations! I have pkd, and was diagnosed as a child. I`m pregnant with bub number 4 and its starting to take its toll on one of my kidneys, having alot of pain. I`m hopeful it wont aggrivate the pregnancy and i`ll be seeing a specialist after bubs born. Good luck with everything!

Anonymous said...

Congratulations on your dreams come true. I wanted to post as this is the first I have found a place to write about PKD and PreEclampsia. I delivered at 32 weeks, induced, pre Eclampsia, PKD complications, etc. My beautiful baby girl is now 16 and was diagnosed with PKD at the age of 13. I am now devoting as much of my time as I can to finding a treatment and hopefully a cure for PKD.

I am going to this years Pre eclampsia Gala in New York and looking to get a table of 10 representing PKD. If any of you would like to join me in my effort please let me know.
The event is on Nov. 12th.
Event website is:

Anonymous said...

This site is great :) I am 35 now. I was diagnosed with PKD when I was 17. I had my first baby when I was 33. She was born at 29 weeks and she is perfectly fine. My husband and I want to try for # 2 but it is a little scary going into the 2 nd pregnancy. I developed HELLP Syndrome with Ava. My OB says I am at less risk fit HELLP with a second pregnancy. My kidney function right now is at 36%. I may have to start dialysis if I have another babe.

midlife in winston salem said...

Hi my name saran, i'am from N.C. was diagnosis in 2010 after my father came ill. We as a family never knew. My father had a transplant and my sister has the disease also, i was pregnant once in 2005 with twins and miscarried at 2months. i have never gotten pregnant again. i have now fallen in love and engaged and trying for year and 1/2. I have been told i have pkd at 38 and low eggs and low egg count. my kidney Dr said i need to give up on having a child because the baby will die or be born with birth defects, i cried for a week. i believe in god and it hard to understand why i have had all this hit me at once. i have been on femur and have done 4 iui with no success. i believe i am to be a mom , and what to know if anyone use fertility treatments and how due you cope with pkd. please email me at sdmason73@gmail.com
i would love to see if anyone else has used treatments and what they use dto get pregnant. i want give up on my dream!