Hey Baby, Hey Baby, HEY!
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It’s not every woman’s dream or ambition to have a child or children. I’ve always known that I would like to have children of my own someday.
At a young age, I remember crying in my father’s arms after being told that I’d probably never be able to have children. That was when they told me that they wanted to put me on a drug called cyclophosphamide, which is pretty much, in my opinion, similar to a chemotherapy drug.
I went on that drug only a couple of times and each time it never agreed with me. It gave me seizures when I received it intravenously. It made my bladder bleed when I took it orally. Since I was never on it for a long period of time, I’m assuming that I don’t have to worry about that too much.
So, putting that aside, what about all of my other risk factors? I have Lupus AND kidney failure.
First, the kidney part. I remember a point in time where doctors said you should NEVER get pregnant while on dialysis. Well, there’s a lady in my dialysis unit who has had several children while on dialysis. When I say several…i mean like 4 or 5! I have to ask her if she every miscarried since I’m not too sure about that.
When you couple that with Lupus, I know it’s important that you cannot be in the middle of a “flare”, and you also have to be in remission for at least 6 months before attempting pregnancy. I’ve heard some conflicting stories about the probability of your child getting Lupus if you have it. Some people say there’s a high chance, others say there isn’t. The opinion I’m going to stick with is one that I saw on http://www.lupus.org/ which said that there is less than a 5% chance of passing Lupus down to your children.
I’m not really on a mission to go out and get pregnant right NOW, as my preference is to be happily married before having a child. If there is anyone with Lupus who has had a child or children, I invite them to comment on my journal or email me and tell me how it went! 🙂
i had lupus when i was 22 years old. that was six years ago. been in and out of the hospital for 2 years. 2005, luckily i feel a bit stronger. my joint pains disappeared and i was able to walk normally. 2005, my boyfriend and I decided to get married, 2006, i got pregnant although my doctor said its too risky. i took the chance to be a mother. i kept on praying and guess what ? my daughter is now 17 months old. normal and healthy.
thank you for sharing that! That is such a blessing, and it gives me great hope for the future!
I was diagnosed with lupus when I was 27. My main symptoms were skin rashes, joint pain & fatigue. I also developed some other auto-immune diseases — sjogrens and raynauds — which somehow led to a bout of Non-Hodgkins lymphoma in the salivary glad. Anyhow after I had surgery & radiation treatment, I was given the go ahead to try to have a baby. I now have an amazing 10 month old son. He developed a lupus rash on his body when he was 3 months old which lasted for a few months BUT he does not have lupus. Basically, he developed the rash because the rash symptom was passed on to him through my breastmilk. Once his own immune system kicked in (after 4 months), the rash started to go away. I still have to take him to a rheumatologist at Sick Kids hosp. every 6 months but that’s it. all this to say, it is DEFINITELY possible. God is good!
We had a baby while on home hemodialysis. My wife had 3 failed kidney transplants and has been on and off dialysis since she was 13. She is 26 now. Her childhood doctors, like yours, told her that she would probably not have any children. We had a baby girl in April at 36 weeks gestation and she is fine. She has a 50% chance of having an genetic issue with her bladder that may or may not lead to VUR which caused my wife’s kidney loss. If you ever are pregnant and on dialysis, your first problem will be finding out you are pregnant, because morning sickness and a bad dialysis day feel the same. If you are still doing your own dialysis set your own dry weight. Keep a daily weight gain chart and graph a trendline using Excel. You should have a pretty linear gain after 14 weeks. Your blood pressure may indicate if your weight is too low or high.Monitor your fluids and keep your ultrafiltration rate below 0.8 L/hr. Do dialysis 7 days a week for around 3-4 hours each day for about 24 hours a week or at least until your PRE-BUN is less than 50 and your post BUN is normal. We found skip days to be scary and reckless after the 1st trimester and decided to go 7 days/week. You have so much weight to pull off after a skip day and that makes the dry weight calculation hard and the ultrafiltration rate high, not to mention your BUN is too high. If we had to do it again, we would push for nocturnal home hemo every night. Don’t worry about Heparin and pregnancy. They give Heparin to some women to stop miscarriages.You will need massive amounts of Epogen. We did 40,000 units twice a week. Do blood labs weekly to check your BUN and hemoglobin. I don’t know if there is a lupus related blood number you should keep an eye on, but you should figure that out with your doctor. Don’t worry about phosphorus and potassium and binders. Eat healthy things needed to make a baby. Babies have bones. They need calcium and phosphorus. Doing dialysis for over 20 hours a week is about as close to having a kidney as you can get. Blood test reference ranges for pregnant women are not very well known or established. Don’t be alarmed if some lab number is out of range and it is supposed to be that way for “normal” pregnancies. Stay out of the hospital as long as possible if you feel comfortable doing so and go full term or at least 34 weeks. If they “force” you into a hospital, make sure you have some input into your dry weight. Don’t let them induce you unless there are some pretty good reasons and it is past 34 or 35 weeks. Some doctors will brag about some baby they saved at 28 weeks, that’s great, but you don’t want to risk that if you don’t have too. A few hundred extra or less milliliters can stress your baby’s placenta. Fluid is fluid and it will go into and out of the placenta. You will need weekly ultrasounds in your third trimester to make sure there is not too much or too little fluid in the placenta. The relationship between this fluid and how well you manage your dry weight hasn’t really been studied. Some doctors are trying to use some one size fits all weight gain chart. Go by the new IOM guidelines that are based on your BMI.You will need several NST’s (non stress tests) to monitor the baby’s heartbeat and your contractions. My wife had to have a c-section after she had a catheter exchange that got infected. The biggest clue that the baby needed to come out NOW was the NST. The baby was in distress. We had a home NST machine too. I highly recommend getting one as you may have to rely on it to decide when to go to the hospital. Most dialysis mothers don’t have the luxury of waiting to go into labor to have the baby. It will probably be a medical decision based on the NST readout.Read as many medical journal articles as you can. You would be amazed at how little experience is out there. What you will find is a direct correlation between hours per week on dialysis and the length of the pregnancy.Sorry if this is long. I probably should have my own blog! 😉 Good luck with whatever you do. We thought about adopting children before we married. I always had faith we could make a baby, and we did.