0:00:15 - Diana, The PKD Dietitian
Hello and welcome back to the PKD Dietitian Podcast. I'm Diana Bruin, an expert in PKD nutrition and all things kidney health. In today's episode, I am sharing five things that you need to know before getting pregnant with PKD. My goal is that you will understand any risks that are associated with PKD in pregnancy. Now, know this all pregnancies with chronic kidney disease, which includes PKD, are associated with a higher risk for complications. This includes any women with PKD who do have normal kidney function and perhaps no high blood pressure. Now, I'm not trying to scare you here. Today is all about awareness, being proactive and having a plan.
I get a lot of questions around family planning and pregnancy with PKD, and I am by no means an expert in fertility or pregnancy nutrition. Your decisions around family planning and to have kids or not are a very personal one, but what I want you to know is that, if you have been diagnosed with PKD and are considering getting pregnant, there are several important things that you should know before starting your journey to parenthood. Specifically, there are five things you need to know and think about before planning to get pregnant. It's all about awareness today folks Awareness, with the goal of supporting a healthy pregnancy and a healthy baby. The five things that I want you to know about and think about. I split them into two areas pre-pregnancy and then during pregnancy. I'm actually going to start with the two things I want you to know about during pregnancy. It will make more sense why in a moment. Number one I want you to know that they're going to monitor your blood pressure and your urine during your pregnancy. Women who have PKD and become pregnant do often require more frequent visits before they give birth and also additional monitoring of their kidney function. So be prepared that you'll likely have these extra appointments and labs outside of what's considered normal monitoring, because there are some medical risks and complications that are associated with pregnancy and PKD. You really want to be monitored closer, to be on top of any of these, really before they are a problem. I'm not saying that you will 100% have these complications. Really, what you want to be is aware, so that this monitoring can happen and you can have a healthy pregnancy plan made ahead of time with your medical team.
So here's what you need to know about monitoring blood pressure and urine during pregnancy. Blood pressure is something that they're likely going to monitor in the office at least once a month or according to your plan. It's also something that they will likely ask you to monitor at home, and the reason is because you can actually find high blood pressures and low blood pressures. It's very normal during the first and second trimesters to see a dip in blood pressure, so you might need a medication adjustment, potentially a reduction, because you want to avoid being low in blood pressure. That's called hypotensive. That can actually create some complications. Your doctor should give you a blood pressure goal for during pregnancy, and it's usually a little bit lower than what's recommended during pregnancy, and if you're a woman who does not have high blood pressure, there is a chance you could develop it during pregnancy.
The second part of what I want you to be aware of is they're going to look at your urine also. This is often done in office once a month or however your team plans to test it while you're pregnant. What they're actually looking at is two main things. They're looking if you have a UTI. They are more frequent during pregnancy and often they can have no symptoms, and that's something that they want to catch early and treat. But they're also looking for protein in your urine, either levels increasing or you having it where you didn't have it before. If your doctors don't have a plan to do this, it's worth discussing with them what the plan is.
The second thing I want you to know that they are going to be monitoring you for during pregnancy is something called preeclampsia. What preeclampsia is is essentially a condition that can happen during pregnancy, and there is a higher risk if you have PKD and are pregnant. Just want to clear up a little bit of terminology here. What is preeclampsia? It's essentially a group of signs and symptoms that can occur during pregnancy. These are the most common signs of symptoms is someone will develop high blood pressure, they'll have protein in their urine, they often have a headache that won't go away and some swelling in their hands and feet. This is a little bit harder to monitor during pregnancy with PKD, because you could have already had some of these things in place. So what they'll be monitoring is for any change in your baseline levels. Why are they monitoring you for preeclampsia? Well, it is the signs and symptoms that show up before someone develops eclampsia, and that is what we want to avoid at all costs, because eclampsia is when a pregnant woman has those signs and symptoms and then they potentially develop seizures or convulsions and can even go into a coma.
Now that you know the two main risk factors that they're going to be monitoring you for, let's get into what you can do before pregnancy. The number three thing that I want you to know about and consider is to meet with your nephrologist and OB. So if you are planning a family schedule, a check-in with your nephrology office and OB. If you haven't had an ultrasound or an MRI within one year, it's very highly recommended that you get one. Here's why they want to have a baseline look at your kidneys, something to compare it to during pregnancy. Perchance anything comes up that they need to know what's going on. But also, scheduling these checks-ins, you can have a more in-depth talk with both your doctor and your OB about your pre-pregnancy and pregnancy plan. Have a discussion around those risk factors that we just talked about and how they're going to monitor you. Also, you want to do a medication review with your doctors. I'll get into this one a little bit more in number five.
The fourth thing I want you to consider before getting pregnant with PKD is genetic counseling and potentially IVF and PGTM. It's always a good idea to meet with a genetics counselor. Learn more about PKD and inheritance and genetics, learn more about the percentages of chance that your children will have PKD and possibly even the type of PKD that you have. I also want you to know and to consider that IVF in vitro fertilization plus PGTM, which is where they only implant embryos that do not have PKD is an option available to the PKD community. What this allows is that you can have children that don't have PKD. You can end PKD in your line of the family tree.
I want to highlight here the PKD foundation. Their goal is to end PKD in the next generation of children and grandchildren. Ivf and PGTM can be expensive. They are a non-profit that helps with funding for these and funding for genetic testing. If you would like to know more about this, please reach out to them. I'll leave their contact information in the show notes, but also check out episode 37 of the PKD Dietitian Podcast. It's called Conceiving a PKD-Free Family. It's all about IVF and PGTM. I'll link that out for you too. And just a side note to all my PKD ladies out there who are on birth control please check it and see what type you are on With PKD. You want to avoid an estrogen-based birth control. Why? Because estrogen is linked with liver cyst and it's also associated with larger liver cyst.
Side Number five let's get back to medication. You want to do a med check with your doctor in that time before you get pregnant, because there are some medications that are often taken with PKD that are not safe during pregnancy. Some of them you need to come off of before you get pregnant. Some are recommended that you come off when you get a positive pregnancy test. Make sure to discuss all your current medications with your healthcare provider before trying to conceive. A plan can be made for what you will be switched to, for example, ace inhibitors and ARBs, which are blood pressure medications think lisinopril and losartan. These are not safe during pregnancy. Also, tolvaptin or genarcu. This hasn't been tested in pregnant or breastfeeding women. It may cause harm and the safety really hasn't been studied. Talk to your doctor about when you would need to stop tolvaptin or genarcu and make a plan for safe meds during your pregnancy. On a side note around meds, it's very common and recommended that low-dose aspirin is started during pregnancy. Usually it's around week 12, and this is preventative for the preeclampsia I mentioned earlier.
In summary, the five things that I want you to know about, consider and include in your plans before getting pregnant with PKD.
Number one and number two are during pregnancy, that is, be aware that they're going to monitor your blood pressure and your urine.
That relates to risk factors around high or low blood pressure and also looking for signs and symptoms of that preeclampsia. Number two is schedule an appointment with your nephrologist and your OB, make a pre-pregnancy and a pregnancy plan with them and talk about how they're going to monitor you and do a medication review. Number four this involves family planning and genetic counseling. Meet with a counselor, learn about your PKD, learn about what it looks like in passing it down to children and learn more about your opportunities to have PKD-free kiddos through IVF and PGTM. And number five you absolutely want to do a medication review because many of the common meds with PKD are not safe during pregnancy. Do me a favor If you know someone who has PKD, is considering starting a family and would benefit from this episode, send it to them. Share it with the PKD community so we can raise awareness and help shift to more proactive care for the PKD community. And until next episode, happy and healthy eating.
Transcribed by https://podium.page
