Pregnancy and CKD **Update**

[Lovebelle]

I have not been on here in a little while. Mainly because I didnt even know how to begin to share this with the group. But given recent post on Contraceptives and CKD I figured, why not bite the bullet. I posted in the past my experience of birth control failing and my becoming pregnant while having ESRF. In that scenario after much anxiety and heartache, nature took its course and I had a missed misscarriage and ended up having a D&C. After that I was especially diligent with doctors about birth control and even though I do not have children, I in no way wanted to be in that position again at this stage in my life and figured when the time is right (after transplant) maybe I can try to be a mom.

Well doctors and I came up with a birth control plan that we figured would be affective, plus me and significant other also used condoms to be extra safe. Last month I went to the doctor due to extreme constipation, which I attributed to peritoneal dialysis. Before sending me for a CT scan they did a routine pregnancy test and to my horror, I am pregnant once again. This is bizarre to me, Ive always had infertility issues in my life, plus issues that kidney failure places on a woman, not to mention using birth control and here I am again, pregnant.

I had to make a choice, and I chose to continue with the pregnancy. I know this has been a heated debate in the past on this site...putting a child's and mother's life at risk. But at the point I found out I already had viable pregnancy and a living being with a strong heartbeat, terminating was not an option. Im terrifed though. While I know women have done this before in my condition, there are really not enough articles or resources available to guide us through it. Im lucky in that my healthcare team in unbelievably suportive. But I know the risks and I cant take it lightly. I really didnt want to be pregnant under these circumstances, but sometimes the path you intended is not the path life takes you.

I just really wanted to share with all of you. Maybe someone can guide me to resources I can go over. Or maybe someone can just offer up a prayer for me and my developing baby. Either way, thanks for hearing me out.

****UPDATE**** May 5th, 2012

Hey all!
I have not been on here in a while to update you on things. So far everything is going much better than expected with my pregnancy. I am in my 6th month (24th week) and the baby is doing remarkably well. I found out a couple weeks ago that I am having a girl!!! I think I never really allowed myself to get my hopes up or really come to terms with being pregnant until I found out it was a girl and that she is doing well. Then when I actually started to feel fetal movement, It really hit me that I am really going to be a mom!

Pregnancy certain has not come without hardships. I started Home Hemodialysis in March and while I wish I could say I love it, I have to admit I really hate it. I get so much anxiety when it comes to needle sticks because we really have a hard time with the stupid button holes. Plus when we use sharps I tend to infiltrate which is so frustrating! But in terms of my health and numbers I couldnt be more pleased and my nephrologist is really shocked at how awesome everything looks. My blood pressure has been controlled really well and my labs are all where they are supposed to be. I feel like a star pupil...lol. 
My Nephrologist did mention the other week that he would like to write up a case study on me since pregnancy and CKD are not really all that common. I have been placed on bedrest for the remainder of the pregnancy though because I was having an issue with my cervix shortening prematurely and they are concerned about preterm labor. But since being placed on bedrest things have improved. So here I am.

So anyway, just wanted to keep you all posted and hoepfully in the next few months I will have a bouncing baby girl August cant come soon enough!!!


****UPDATE July 2, 2012******

Hi Everyone!

Well I have made it to my 3rd and final trimester!! I am now 32 weeks and I feel so blessed to have made it this far.  My doctors have not released me from bedrest and it seems as though I will have to remain so until I deliver. Now that I am further along I can definitely feel the toll on my body. I feel my body working really hard to keep up and currently the biggest challenge is blood pressure control and I developed Gestational diabetes. Luckily the diabetes I can control with changing my diet. With my blood pressure I am trying to challenge myself a bit more during dialysis and take off more fluid. But sometimes that makes me feel really lousy and the leg cramps can be intense.

My baby seems to be doing well so far. I get weekly biophysical scans which have all been normal. She seems to be active, heart rate normal, and she is developing as she should. The one concern is her growth is falling behind a bit. This is has been the one obvious consequence of being pregnant with CKD. At my last scan she was measuring about 3 weeks behind. But my doctors assured me this is typical in women with chronic Hypertension and kidney failure. My doctors estimate that they will deliver her early, so if all goes well she will be here in another month!

My biggest anxiety, other than having a healthy baby, is how to manage after she is here. Pregnancy itself has been challenging and hard. But then I think how is the world will I be able to manage a newborn, dialysis and work. I also think about when I am called for a transplant in the future. What if something happens? But I guess I can only take things one day at a time and hope things work out for the best.

[Lillupie]

Im just curious, what caused your kidney failure? We thought I was pregnant recently because of a missed peroid, but Im also on birth control. My nephrologist didnt totally seem concerned 100%. It was more like "you will end up on hemo on a daily basis eventually". I think it is because of my health on dialysis. I have lupus, but have been in remission for 13 years without any symptoms, and I only take the renal vitamin, a stool softner, and hectorol, and a birth control pill for my hormone levels. I dont even take blood pressure medications.
 With that being said, I suspose I could be worse off if indeed I were pregnant. But thank God IM NOT!
 Depends on who your doctor is and how much experience he has with someone on dialysis and pregnant. My transplant neph told me that I could have a child on dialysis. I would be considered even more high risk then if I werent on dialysis.
Apprently at our hemo clinic a woman had 3 babies on dialysis.

 Im sorry to go on a tangent about myself. I think it is doable, or so I have been told. I think it is a lot harder then if you werent on dialysis.
keep us informed of how everything goes. I would be curious. I have thought about because I do want atleast one more child in my life and have no idea if and when I will get a transplant.
Lisa

[MooseMom]

  to you.  This shouldn't be a "heated debate", so please do not worry about being judged or chastised.  You are right...sometimes life takes you to places that you'd never predict.

I have read stories on various renal blogs about managing a pregnant patient on dialysis, and the general consensus is that it CAN be done if the woman has frequent dialysis.  I confess that I've not heard of pregnancy and PD; the cases I have read about were all about women on inclinic hemo who were dialyzed every day throughout their pregnancy.  I've looked over at the Renal Fellow Network, and here is a link to all of their blog entries on pregnancy and dialysis:

http://renalfellow.blogspot.com/search/label/pregnancy%20and%20renal%20disease

I googled "Pregnancy+dialysis" and looked at a few results, and while I didn't read them all very thoroughly, the common denominator seems to be intensive dialysis improves outcomes.

I know that this must be a very emotional time for you, but I do want to offer both my congratulations and my prayers.  We have seen many miracles here on IHD, and I think it is about time for another one!  How far along are you, if you don't mind me asking?  I hope you will post often about this experience, and if there is anything we can do for you, please don't hesitate to post. 

 

[Traveller1947]

God bless you and your little one, Lovebelle! 

[jeannea]

I wish you the very best. This can't be easy. I hope you have a healthy baby.

[Lovebelle]

Sorry I have not responded in a week. I have been moving and finally have cable/internet turned on.

Lillupie...My Kidney failure was caused by FSGS, and I also have had a history of hypertension since I was 19. My hypertension was very difficult to control over the years and they think now its because of the underlying FSGS. My blood pressure is controlled now that I am on dialysis. I often wonder though, if this will continue after transplant.

I had another OB visit yesterday and everything looked great and I am extremely thankful. Interestingly I have made it into my second trimester and am now 13wks 2 days. I have not had any weight gain so far, and my "peeing" function has been very active. I have been talking to my PD nurse about my therapy because with my increased output from voiding and the amount of fluid being pulled from PD, I am too dry. I have some serious cramping going on in my legs and feet. I am thankful though that my kidneys have sort of been keeping up with the increased blood flow by making more urine though. I start Home Hemo training on March 5th and Im kind of nervous about it. I never did like Hemodialysis, but maybe doing it at home wont be so bad.

Thanks for the support though. I am glad I kind of have somewhere I can talk about Kidney stuff and people relate.

[MooseMom]

Thank you for making the effort to keep us up to date, and congrats for making it to 13 weeks!  That's good news!

I hope you don't mind me asking...why are you switching from PD to hemo?  Does pregnancy make it more difficult to do PD, especially as the baby grows?  I have no idea, so I know these questions must seem silly.  If you ARE switching to hemo, doing it at home should give you good dialysis, and I'm eager to know how it works out for you.

   Good luck!

[Lovebelle]

I think there are limited studies on doing PD during pregnancy. But part of the reason I will be switching is that we think the further along I get the more uncomfortable it will be during the dwell phase. I cant imagine being 8 months pregnant and trying to hold onto over 2 Liters of solution. As it is I get uncomfortable if I eat to close to bedtime. Another reason is, The perinatologist (high risk OB) is concerned with my high creatinine levels. Naturally my levels will always be high, but on PD creatinine levels tend to be even higher. On hemo creatinine levels do decrease, although still not in the normal range. For example when I was on hemodialysis my creatinin levels were typically between 4-5. But on PD they are regularly around 10, but my clearances are good.  So the theory is, the better the environment in the body, the better chances of baby surviving.

If I could get away with doing PD throughout the entire pregnancy, I definitely would though.

[MooseMom]

Yes, it did occur to me that being 8 months pregnant AND having a belly full of dialysate might be problematic.  I didn't know about the higher creatinine levels you get on PD, though.  Thanks for that information; that's interesting.

[bette1]

Good Luck!  One of the patients at my former unit had a baby while on Hemo.  She had to go in for treatment every day toward the end of her pregnancy but the pregnancy came out well and now she has a 12 year old little girl.

[Whinny]

I was in a similar situation and through much thought and prayer chose to go the opposite route then you.  I do not regret it but I do wonder sometimes what would have happened. I already have one child and the thought of me possibly dieing and leaving him by choosing to stay pregnant was not something I could live with at the time.

I wish you the best in this and I hope you have a wonderful healthy baby! Having a good support network is so important I am glad they didn't just tell you "No way!" 

[Rain]

Congratulations :-)

I wish you the best and please updates us on IHD.  We will always be here for you.

[Lovebelle]

Update in original message

[MaryD]

That is wonderful news indeed.

Bed rest doesn't sound very exciting, but the baby girl at the end of it should make it bearable.  I am very happy for you!

[MooseMom]

Lovebelle, this is the most wonderful news, and I couldn't be happier for you.  I am sorry that home hemo has not been the tea party we'd all like to think it would be, but if this is the only way to help ensure that you are going to have a beautiful, healthy baby in a few more months, I am glad this option is there for you.

I think it's a wonderful idea for your case to be written up.  You will not be the only other woman ever to find herself in this position, so your experience will be invaluable.  If your neph does write it up, I hope he will make sure it is available online so that we can all read it.

In thinking more about your situation, I have a general question.  More dialysis in indicated for pregnant dialysis patients.  In the US, the only way most patients can get more dialysis is to do it at home, with the relatively rare exception of those who have access to inclinic nocturnal hemo.  But what if you, for whatever reason, can't do dialysis at home?  Would most clinics accomodate a pregnant patient and allow her to have more treatments in clinic if her neph writes a prescription for it?  How would that work re Medicare/insurance?  Anyone know?

Lovebelle, congrats again!  I hope all continues to go well.  Since you will be spending so much time on bedrest, you'll have no excuse for not giving us more updates.  LOL!

[Lovebelle]

Thanks Yes bedrest is a complete drag! I feel like my brain is turning to ooze from watching so much tv. I never thought I would miss work so much!

Moosemom...my assumption is that if your physician/caseworker can provide documented proof that more dialysis is medically neccessary then I would think the insurance company would authorize more dialysis. It was also my understanding that in the event home hemo did not work out, doing dialysis in center would also be the alternative (just not as aggressive as you typically might doing it 3 days a week).  It was a balance between cleaning the blood effectively without being too aggressive. So my flow rates are relatively low so it doesnt take too much blood from the placenta too quickly.

Back to insurance...I know when I was getting authorized for home hemo my nurse came accross some research showing that more dialysis (over 20hrs a week) increased the rate of infant survival over 80%. She provided this information to my insurance company when trying to get authorization for me to do dialysis 7days a week. I guess it all boils down to medical neccessity.

[jeannea]

Great update! I hope things continue to go well and you have a healthy girl. The bedrest must be tough but worth it. Thanks for the update.

[Lovebelle]

Update above

[MaryD]

Hang in there - one day at a time indeed.  I'm sure she will catch up with her three weeks 'behind' when she arrives.

This is such wonderful news! 

[lainiepop]

Just seen this thread. Congratulations on your pregnancy So glad to hear you & baby are doing well.

How far do they hope to get you before you deliver? I had a baby girl a year ago yesterday at 35wks i wasn't on dialysis bvt close to needing it. She weighed only 3Lbs Ir but needed no medical assistance & Was home after only a week in hospital. She's just turned 1 & Is almost walking & saying a Few Words she only weighsl6LbS but eats mure than her 4 yr old brother So am Sure your Lo will be fine even ift  iny! Have thy  said  how  big  they think she is? They estimated Elena at 3lbs1O  So wire pretty accuratl ,

Anyway good Luck with  rest  of  pregnancy do update us!X

[amanda100wilson]

Well, what grest news.  I can't imagine anyone judging you especially since this was nature's choice to make you a mom.  HAve the doctors considered you doing nocturnal to possibly improve outcomes further, since this would be even longer dialysis and thereby mimicking normal kidney function even more closely?

Is staying at home with your baby after pregnancy?  Dialysis, work and a baby do seem an awful lot to cope with?  My son was 2.5 when I went back onto dialysis and I will admit that it was hard work and I was a stay-at home mom.  It's probably the toddler age that will be more of a challenge than when they are a baby.  Sorry that I can't offer more advice but I am so excited for you.  Please,please keep us informed.  How about a daily blog on here?

[MooseMom]

Please,please keep us informed.  How about a daily blog on here?

Oh, I love this idea!  What better way to pass the time than to start and keep up with a daily IHD blog!  LOL!  Think about it!  I'm sorry, but these updates are just too rare.  I need more information, nosey parker that I am.   

[MooseMom]

Has anyone heard anything from Lovebelle?