>>MODERATOR: Hello everyone, and welcome to today’s webinar, Kidneys and Women’s Health. Before we get started, I’d like to go over a few items so you know how to participate in today’s event. You have joined the presentation listening using your computer speaker system by default. If you would prefer to join over the telephone, select the arrow next to the mute or unmute icon on the bottom of the zoom screen, select leave audio, and then select phone call and follow the prompt to dial in. You will have the opportunity to submit text questions to today’s presenters by typing your questions into the questions pane of the control panel. You may send in your questions at any time during the presentation. We will collect these and address then during the Q&A session at the end of today’s presentation. Today’s webinar is being recorded, and you will receive your follow-up email within 24 hours with a link to view the recording. The theme of today’s webinar is Kidneys and Women’s Health. Living with chronic kidney disease presents its own challenges and issues. Additionally, there are several unique issues that women face when dealing with kidney disease, such as fertility, sexuality and pregnancy, and the impact on their kidney health. I would now like to introduce today’s speakers. Dr. Michelle is the medical lead for the Kidney Disease and Pregnancy Clinic, and is the Director of both the divisions Nephrology and Obstetrics Medicine at Sunnybrook Health Services Centre. Her research program includes studies in glomerular-based disease as well as pregnancy-related kidney. Dr. Michelle is currently the Ontario Renal Network medical lead for glomerulonephritis and specialty clinics. And also, Matti Youd is a professor at Georgian College who teaches, sometimes unwillingly, students to improve their communication skills. In her spare time, she likes dabbling in creative projects like leather working and textile arts, doing yoga and playing outside. Matti was diagnosed with FSGS in her early 20s, received a kidney transplant in her late 20s, lost the transplant in her early 30s, and has since become on home hemodialysis for three years. Her latest creative project was something she has wanted to do for a very long time; grow a baby from scratch. She had a beautiful baby boy last June, and he is the best thing she has ever made. And now, Dr. Michelle
>>MICHELLE: Hello. I hope everybody can hear me all right. Welcome to this webinar. I’m delighted to be here to speak to you all today. And we’re going to be largely talking about pregnancy and kidney disease, but there are so many steps that go into having a healthy pregnancy, and it’s so important to women for women to understand all portions of sort of their reproductive health, everything from contraception when that’s most appropriate, to fertility. And we’re going to cover everything off a little bit today, and then we’ll be able to answer more specific questions for individuals. So why are we doing this webinar? For most of you, many of you may know this, but March 8th is World Kidney Day. And World Kidney Day is a day for global awareness. It was established in 2006, and it tries to bring awareness to patients with kidney disease, patients living with chronic kidney disease all over the globe. It is actually celebrated internationally. And this year it happens to also just fall happenstance on International Women’s Day. So therefore the theme is really appropriate in that this year it’s all about women and their kidneys. And the slogan is Include, Value and Empower. And what that means to me is we really need to include women in chronic kidney disease research. We need to value their special healthcare needs, and women do have very special healthcare needs. And we need to give them the data to empower them to make informed healthcare decisions. And you’re going to hear from one of our patients who had to make such an informed decision today, so that should bring it home to you and make this talk a little bit more real. So what are we going to talk about today for pregnancy and kidney disease? Well this is meant to be a webinar of hope, so the first and most important factor is that it is possible for women with chronic kidney disease to deliver a healthy baby, but it can’t be in isolation from your nephrologists. There are special precautions that must be taken, and pregnancy does need to be a planned affair. Your nephrologist knows you and can help you make a decision that is based on your own personal healthcare needs. Many medications need to be adjusted prior to pregnancy. And we’ll talk a bit superficially about what some of these things are, just so you have a general understanding of them. And sometimes consultation with a high-risk obstetrical gynaecologist is also helpful to help you plan a successful pregnancy. So these are sort of the topics I want to just touch on today. I want to talk about the importance of contraception and the importance of planning, because pregnancy is fine just so long as it’s a planned affair. We’ll talk a little bit about fertility and sexual concerns. Many young women do have infertility concerns and have been exposed to medications in their past that may have been an issue, and we can discuss this. We’ll talk how pregnancy can affect you, or specifically your kidneys, and how your kidney disease can therefore affect your baby. Women are at very different stages of a journey in to when they decide to have a pregnancy. Kidney disease, as you know, can begin with mild renal insufficiency and over many years can become more advanced. And even some women may actually be on dialysis or have a transplant. So we want to touch on every aspect of sort of potential times to have a baby. So let’s talk a bit briefly about contraception. One of the things that’s so important for young women to understand is that unplanned pregnancies in women with chronic kidney disease need to be avoided, because there are risks to mom from an unplanned pregnancy. Mom can lose kidney function, and there’s adverse pregnancy outcomes. The most notable is when blood pressure increases in the third trimester of pregnancy, and that’s called preeclampsia. And that can further impact mom’s kidney disease and cardiovascular disease later on in life. And there’s risk to baby. Many of the drugs that we use to treat kidney disease are not compatible with pregnancy. Drugs for blood pressure, enalapril, Atacand, all the drugs that end with il and end with and tend to be not compatible with pregnancy. And those need to be switched out before or in the early stages of pregnancy. Mycophenolate Mofetil, Cellcept, it goes by a number of names; it also is not compatible with a pregnancy. But there are options that I’ll review with you today, that can be switched over to allow you to have a healthy pregnancy. Babies can be preterm, and that then risks baby for future diseases. Babies that are preterm are higher risk for hypertension, they’re higher risk for cardiovascular disease, and they’re a higher risk later on in their adult life for chronic kidney disease. So by making sure that we have healthy women and healthy pregnancies we will also have healthy babies, and we’ll sort of end the cycle of illness. And that’s why it’s so important to make sure your pregnancies are planned. So the choice of contraception is very important. Making the appropriate choice is a bit complex, and it often does require collaboration between your nephrologists, a gynaecologist or your family practitioner, but there are options. Now we’re not going to review all the options in detail, but know that there’s a variety of different ones, and what’s right for you can be chosen by your healthcare providers, all right. This is something that you can refer to later, and these are some of the things that a kidney doctor will take into consideration. Barrier methods and condoms; they’re fairly safe for your kidneys, but they do fail as an option for contraception. A variety of the hormonal contraceptive agents can raise blood pressure or rise proteinuria, so again we want to be very careful using them. There’s various patches and Mirena IUDs and copper IUDs. These are all options as well. And again, if you have a discussion with your respective healthcare provider, they can help you choose the right contraceptive method. If you’re not having any more children, then more more permanent methods like tubal ligation or even vasectomy can be considered, because again, we never want to be in the position where we have an unplanned pregnancy in a woman with CKD. Many women worry about fertility, and there’s a few factors to know about fertility. So one of the most powerful things that decreases fertility unfortunately is age. And it is common to wait on pregnancies longer and longer, just from the societal perspective of why we wait. So fertility does start to decline after the age of 30. There are medications that you may have been exposed to because you had kidney disease that might also damage your ovarian reserve. And the most notably one is cyclophosphamide. But again, if you were exposed to cyclophosphamide at a young age you shouldn’t necessarily panic, because it really does depend on when the exposure happened. The younger you were the less likely there is to be ovarian damage. It completely matters what dose you received, and now we use lower and lower doses in more recent years. And it matters what route you got it, and women are more commonly given an IV route for their medication. Those would all result in less infertility from a drug like this. Unfortunately, kidney disease also impacts fertility. And as your kidney disease becomes more advance, you may find that your menstrual cycles become irregular. You might not have the ability then to become pregnant with very advanced CKD. And we know this isn’t a permanent situation though, because it will reverse after transplantation or even on more intensive dialysis, where women who previously were not getting pregnant were now able to have a baby. So there’s reasons to be concerned about fertility, and probably the best thing is, again, to be referred to a fertility expert. And we do that quite readily, for example, in Toronto we work with a number of fertility clinics who have helped women for years with chronic kidney disease have pregnancies. So sexual dysfunction is something that is often not that comfortably discussed with your nephrologists, but you should feel okay discussing this. And you should realize that you’re not alone. So CKD is sometimes not the most sexy thing to have. And this is one study that was done in women with fairly early stage CKD, so they didn’t really have advanced illnesses yet, but they had more sexual dysfunction than their male counterparts at the exact same level of kidney function. It didn’t matter as much for men, but it was much more stressful for young women to have chronic kidney disease. And it probably is in part because you have to worry about later having children and all the other things that are part of your life. So depression scores are higher in young women, so please do reach out to your healthcare provider if you’re having any feelings with respect to sexual dysfunction. Women on dialysis, there are studies that show that 84% actually report sexual dysfunction when they look at various markers of the female sexual index function. And if you look why women are sort of having sexual dysfunction on dialysis, they don’t feel as robust, their physical functioning feels less, they may have bodily pain, lower vitality, and again, higher scores of depression. We’ve recently actually started in the GTA a peer support group. And we’re finding that peer-to-peer support is a very powerful sort of mechanism for young women to reach out to each other, and support each other through what can be a difficult time. And it shouldn’t be too surprising why there is issues with sexual dysfunction in women with chronic kidney disease. Many of the meds we use have a lot of side effects and cosmetic ones. These are just stockpile images of young people exposed to prednisone or the calcineurin inhibitors. Prednisone can cause acne or rounding of your face. It can cause really difficult stretch marks. The calcineurin inhibitors, cyclosporine, tacrolimus, they can increase hair growth, they can cause gum hyperplasia. And I’ve seen these side effects in all young women, you know many young women that I’ve treated. And again, if you’re developing some of these very difficult side effects, it’s important again to reach out to your nephrologists to discuss what other options there are for treating your kidney disease. Once on dialysis, there’s anemia, fatigue, depression. Some of the blood pressure pills can also make you feel very tired. And again, we have access for dialysis that can affect your body image. So don’t feel alone with these feelings, but please reach out to your healthcare provider to review these concerns, because they’re just as important as that of your kidney disease. So as we take that as a background, with fertility, contraception and sexual dysfunction, let’s talk about a woman who’s approaching the desire now to have her family. There are lots of things that we have to consider, and you and your doctor have to discuss them all very carefully because they can affect the success of a pregnancy. So your age matters. The older you are when you decide to have your children the more side effects and the more complications you will potentially bring to the pregnancy. As I already mentioned, past and current medications; some could have affected your fertility in the past, others need to be changed so that it is safe for your baby to move forward. Your stage of kidney disease matters, and I’m going to show you that in terms of both your outcome and your baby’s outcome. So if it’s possible to have your children at an earlier stage CKD, when you have less kidney damage, that’s typically the safer time to have children. The amount of protein in your urine can be a factor. There are some diseases where it can be quite excessive, and that can put you at risk in the pregnancy. High blood pressure is an independent risk that needs to be controlled. And other health conditions that you might bring to the table. Diabetes, increased weight, lupus for example, vasculitis, systemic illnesses, these are things that all bring risk to a pregnancy. But it doesn’t mean that it can’t happen. These things all just need to be managed and understood in advance. So pregnancy counselling has to be quite individualized. And getting optimized for pregnancy actually takes time, so it’s also okay to think about it a number of years before you’re even ready to go ahead, because there may be a number of changes that need to be made. I think one woman took me 10 years to get her ready for pregnancy, but now she has a beautiful baby girl. So how can pregnancy affect you? So depending on your type of kidney disease, your disease can flare if you’re in remission. But many diseases I can’t tell you what is the likelihood of a flare. Diseases like FSGS, IgA nephropathy, membranous nephropathy, unfortunately there’s inadequate data in the literature to tell us what the risk of a flare is. There’s really only enough data in lupus and diseases like vasculitis where we know if the disease is poorly controlled prior to a pregnancy, the risk of flare is quite high. But if the disease is well controlled prior to the pregnancy, pregnancy outcomes can be excellent. Your proteinuria will often go up with pregnancy if you’re in a partial remission. Sometimes that can be significant, other times it’s less so and it just needs to be monitored. Kidney function can deteriorate during pregnancy, and I’ll share with you the likelihood of that depending on your level of CKD in a moment. And blood pressure can become more difficult to control. And the goal is stabilization prior to pregnancy, to manage your protein, your blood pressure, all with pregnancy-safe immunosuppression and blood pressure medications, to prepare you properly for a pregnancy. So when you get pregnant your kidneys have to work twice as hard to support you and your baby, and that is what we call a physiological or a high-stress state for your kidneys. They actually hyper-filter; they actually clean your blood even more aggressively than they do when you’re not pregnant. So that extra stress on your kidneys can cause loss of kidney function, and that’s something that you’re warned by your nephrologists that you could lose kidney function. But I’d like you to look at this and just look that if you’re at Stage 1, meaning you still have pretty preserved kidney function, your chance of losing kidney function is less than 10%. And even if you have quite advanced kidney disease, Stage 4 and 5, you don’t have 100% chance of losing kidney function; you have approximately a 20% chance of losing kidney function. Now these rates can be higher because they also depend on the amount of protein in your urine, how well controlled your blood pressure is. So again, this risk factor for you needs to be very individualized. And I recommend that you go see a nephrologist who specializes in this area, and can work your risks out on a very individual basis. But if you’re planning your life cycle, sometimes it’s better to have your children a bit earlier, when you still have more preserved kidney function, than waiting to too far along. Nephrotic syndrome is when you have severe protein loss into your urine, and that can result in a lot of swelling, and that can result in low albumin levels. And women who have nephrotic syndrome know what it means. It does not affect your baby per se, but puts mom though at risk for more uncomfortable edema because we have less options to treat it in pregnancy. We use compression stockings and we have to be more careful with diuretics. And it puts you at risk for clotting, but that also can be managed in a pregnancy with injectable blood thinners. So that, if it does happen in pregnancy, though difficult, does not mean it cannot be managed. So how can chronic kidney disease now affect your baby? And often mothers are much more worried about their babies than they are about themselves. We don’t really know the rates of miscarriage just because you have CKD. We’re not sure if they’re any different than the general population. But miscarriage in the general population is not rare. It does happen. Pregnancy complications are common in all forms of kidney disease, and they include preeclampsia which we already talked about for mom. If it happens earlier in a pregnancy, that could result in a preterm delivery and a smaller baby. And all this is going to be modified by your degree of renal dysfunction, your level of proteinuria, your blood pressure and other medical conditions, including diabetes, obesity, lupus, vasculitis, as already mentioned. So the importance of individualized counselling again becomes extremely important. Just like you saw at the various stages of CKD, the risks for baby can go up quite significantly with more advanced CKD. And you can so though – the numbers are quite small – but we do know more women with more advanced CKD have smaller babies and earlier deliveries. And of course that can impact your baby as well. So pregnancy needs planning; you need to manage your kidney disease before a pregnancy attempt. You need to lower your proteinuria, and I’ll discuss that, about what the options are. Your blood pressure needs to be managed. And all other conditions like diabetes and your weight should all be optimized. Once pregnant there’s preventative strategies to protect you and your baby, and you’ll likely be put on a low dose of Aspirin. If you don’t eat enough calcium and vitamin D you may be supplemented, and we will make sure that you are on prenatal vitamins. So immunosuppression options that are safe in pregnancy? Prednisone – there’s perhaps some association with preterm birth but if it needs to be given in pregnancy it can be done so safely. Imuran or azathioprine, cyclosporine and tacrolimus. Cyclosporine and tacrolimus may be associated with higher blood pressure so we do watch women on these drugs very carefully. But there are options that can be utilized for immunosuppression if you need to be on it during pregnancy. The ones you can’t be on is Mycophenolate or Cellcept, cyclophosphamide or Cytoxan. And there’s a number of ones where we don’t really know the long-term effects on baby, and that would include Rituximab, abatacept and some of the other newer drugs that are coming out to treat kidney disease. Again, you should discuss the drugs you’re on with your nephrologists. In terms of treating blood pressure, there’s a number of safe medications; methyldopa, labetalol, nifedipine, hydralazine, Norvasc, amlodipine. These are all likely safe in pregnancy. The ones again that have to come off during a pregnancy are blockers of the rennin angiotensin system, so drugs like Altace or ramipril, enalapril or Vasotec, Atacand. There’s a large number of these medications, and they should be stopped either before you start to try a pregnancy, or your nephrologist may ask you to stop it in the first trimester. In diseases where I don’t have immunological options to keep proteinuria in check, and this would include diabetes or perhaps just kidney scarring, I will often recommend we stop in the first trimester of pregnancy. This is something that needs to be balanced between you and your nephrologists carefully. Breast-feeding is actually encouraged in all women, including those with kidney disease. The immunosuppression options that we use in pregnancy, and the blood pressure options that we use in pregnancy are all compatible with breast feeding. And in fact, in breast feeding some of the drugs that we’re taking off in pregnancy, select blockers of the rennin angiotensin system, Vasotec or enalapril, is again safe. So we could start to treat your proteinuria immediately postpartum again. Now some women aren’t able to have a baby when they’re still in the earlier stages of CKD. And we have many young women who have advanced to endstage CKD during their reproductive age. Now that doesn’t mean though that women with endstage kidney disease cannot have children. And dialysis and pregnancy is happening more often. Years ago the nephrologist would have actively probably discouraged women from having a baby on dialysis, but you know in the last number of years we’re becoming more and more comfortable with the idea that babies can happen on dialysis. And there’s actually quite a number now that have delivered across Canada, young women having babies on dialysis. The key element of having a successful pregnancy on dialysis is a lot of dialysis. So we know that if we intensify your dialysis and clear the toxins that build because you have kidney failure, it number one improves your chance of conception on dialysis, it improves live birth rates, and it benefits your baby. And this is a study that we did some years ago that shows you about the number of hours sort of necessary. You can see the first one is the live birth rate, it goes up. And once we get over 36 hours of dialysis the live birth rate is actually 85%, which is really quite excellent. Baby’s weight goes up and baby’s gestational age also goes up as we intensify dialysis. So in Toronto we use a minimum of 36 hours per week. You may need less though, if in fact you still have a lot of residual kidney function. So again, it’s a very individualized treatment decision. The management is complicated. We have a lot of people involved in a pregnancy on dialysis. As a nephrologist, I’m watching your laboratory valuations very, very carefully. I work with a high-risk obstetrician who knows how to watch all aspects of your care. We always involve a neonatologist in the event that the baby is born early. It’s a complex management and they can’t do it everywhere in the world, but we certainly can do it well in Canada. So usually our prescription is six to eight hours per day. Residual kidney function matters. If you do have a lot of urine output, a lot of kidney function you may not need that much. Your nephrologist or myself would be watching how much fluid we take off you, your electrolytes, your anemia, your diet. You’re usually going to need higher doses of Eprex and iron. And your obstetrician is going to very carefully watch your baby. We find that the first trimester’s something that needs to be panicked about. Again, you’ve got to work with an obstetrician that knows how to actually assess for things like Down’s syndrome. There’s other tests that we can use. They will then do very careful ultrasound screening to watch everything from your cervix to the baby’s anatomy, and to make sure your placenta is healthy. So it is a difficult pregnancy. It really is a full-time job for mom, and Matti will tell you more about it when she speaks in a few minutes. Transplantation is another time to have your child. Some women choose to wait after transplantation. Transplantation typically does restore fertility, and pregnancy planning can start approximately one year post transplant. And it’s all the same principles of counselling and optimization, getting you on safe meds, controlling your blood pressure, controlling diabetes if you have any. I have a lot of young women who book their appointment with me exactly one year to the date post transplantation and we begin the process to prepare for pregnancy. The live birth rates in the large registries – these are not Canadian birth rates – are a little bit lower than what I showed you on dialysis. But again, this is not Canadian data. As a rule we do extremely well. We have an excellent live birth rate. It’s not different than our dialysis patients in Canada. Babies are a little bit smaller and a little bit more preterm. And again, preeclampsia does still happen after transplantation, so all the same preventative strategies are really important. So in summary, pregnancy is possible with CKD, but you need to work with a team of dedicated healthcare professionals to make it a safe reality for both you and your baby. Our job is to really help you find the safest window of opportunity for pregnancy along your journey with CKD. And I’m going to now turn this over to Matti, who is one of the young women who’s recently gone through this first hand.
>>MATTI: Hi, my name is Matti and I’m 34 years old, and I’m going to tell you my story. When I was growing up I didn’t know what career wanted, but I knew that I wanted to be a mom. I loved children and couldn’t wait to have a house full of them. On my first date with the man that would become my husband, I made it clear that I wanted at least six kids. We still got married in 2006. About one and a half years into our marriage I started suffering from migraines and pitting edema. About one and a half years into our marriage I started suffering from migraines and pitting edema. Six weeks later, after having gained 70 pounds of fluid retention, I was diagnosed with an autoimmune disease that targets kidney tissue called FSGS, focal glomerulosclerosis. My clothes didn’t fit. I had to buy lace-up shoes and put them on while I was still in bed, otherwise my feet would be too swollen to fit. In the following four years, the disease completely destroyed my kidneys. I was incredibly tired, sick and swollen. It was a fabulous way to spend my first years of marriage. I was put on immune system suppressants, developed moon face from the prednisone, dabbled in depression, got close to a partial remission once, but after four Years, my kidneys were failing. That was the first time I started to die. My doctors told me that I would either need to go on dialysis or get a transplant to survive. My husband didn’t even think twice about volunteering to be a live donor. In fact, he even looked forward to it. He wanted to be the one to save my life. It felt strange to be dying but know I wasn’t going to die. I had spent four years of facing every day feeling as though I was climbing up a very steep mountain, and this transplant was going to give me a free pass to the top. Against the odds, my husband was a tissue match and in 2012 a pre-emptive transplant was scheduled at St. Paul’s Hospital in Vancouver, where we were living. I felt like I was cheating my fate. That kidney was going to be my cure, to give me back everything I had lost; my energy, my youth. The Vancouver Province featured our transplant on the front page of their Sunday edition. They came to the hospital on the day of the transplant, interviewed us on camera and took photos of the procedure. Our friends made us surgery shirts. Mine said “I have man parts”, and my husband’s shirt said “Ask me about my missing organ”. It seemed too good to be true, that there was a way to fix me. The doctors mentioned the risk of recurrence, and I set my sights on a 60% chance the transplant would work. When I came out from under sedation after the transplant, I was exhausted, but felt ready to face the long healthy life that awaited me on the other side of recovery. Within four days of the transplant however, the disease recurred. I hadn’t yet even healed from the surgery. I was even sicker after the surgery than before and very depressed because my one shot at getting better had been amiss. I was out of options. I struggled for two years with the transplant. I don’t remember much about that time. My most prominent memories include intense cramps, pervasive fatigue and spending the whole day lying in bed or on the couch. We moved to Ontario where my family lived because we needed more community support. By the end of the transplant two-year stint my body was giving up again. I was sleeping about 20 hours a day, had no appetite, was anemic and had dwindled to a shadow of who I had once been. That was the second time I started to die. I was too sick to care for myself, dress myself or even walk on my own, and was severely underweight. My doctors had mentioned dialysis before, but for some reason my motto was death before dialysis. I refused to even consider dialysis as an option. I had heard hearsay that most people die on dialysis within five to 10 years, and I saw it as a dragged out death sentence. I claimed I preferred to die on my own terms, whatever that meant. Then, when my transplant finally failed seven years after initially getting sick, I was out of options. I had to choose between dialysis and death, and I realized I was not ready to give up yet. My doctors at Toronto General introduced me to the concept of home haemodialysis. The nurses showed me the machine they would train me on, told me about how it would be installed in my home, and how I could dialyze while I slept. It was daunting and terrifying, especially after I watched a video of cannulation on YouTube. I thought there was no way I could do that to myself. I trained on a machine for three months at Toronto General, and then they installed the machine in my house. Through dialysis I received the gift of life for the second time. I now have no kidney function. I do nocturnal dialysis eight hours a night, five to six nights a week. Since starting dialysis, I am doing more than surviving; I am thriving. I’ve gained 45 pounds of luscious curves, and I’m able to work and enjoy social encounters. I call my machine Edward. If any of you are Twilight fans you would get it. Dialysis wasn’t easy at first. It still isn’t easy. In fact, it really sucks. Some days I have fits and I pout and cry about having to spend an hour in the evenings setting up, putting needles in my arm, about not being able to travel or not having peers who can relate to what I’m going through. But I’m also incredibly grateful for dialysis. It has given me my life back. After six months of being on dialysis, I felt like I was finally gaining interest in the world outside of simply trying to survive. During my illness I could never remember how old I was, because it felt like I had stopped living. My default age was 24, because that was the last time I had felt like myself. After starting dialysis, I had to get to know myself all over again as an adult in my 30s. Most days now I feel like each day is a gift. I feel such awe and pleasure at being alive. I’m under no grand illusions that dialysis isn’t hard, however this is my lot in life and I have to live with it, so I’m trying to make the best of it. I still have moments when I feel like a sick person, but overall I have a wonderful life where in the morning I get off my machine and face each day as a new adventure, and don’t have to think about plugging again until the evening. Since being diagnosed, my doctor had told me I was not healthy enough to be pregnant. My friends were having kids. They were pregnant together. And then they were in a different life stage, one that I desperately wanted to relate to. It was heartbreaking for me. I was happy for my friends, but inside I raged at the injustice. Why me? I had to harden myself to my desire for kids, or else I would end up crying every time I saw or talked about a baby. It was devastating to be the one who couldn’t have kids, the one who sat alone while my friends rocked their babies. For nine years I had to deny that part of myself that so yearned to have a house full of children. One year into dialysis I was healthy enough to try for a baby. I got pregnant within six months of trying. My pregnancy was hard for the first six months. I wasn’t nauseous, but I had headaches that lasted the whole day for about four days a week. On the plus side, I didn’t pee so other pregnant women were jealous of my situation. Being pregnant also introduced a new stress to dialyzing. I used to weigh myself in the morning and the evening, and program the machine to remove the fluid I had gained throughout the day. I had to guess how much baby weight I was gaining and add it to the equation. If I took off too much fluid, I could affect the placenta pressure, and if I didn’t take off enough my blood pressure could be too high. For so long I was told I couldn’t have children, that sometimes I would forget I was pregnant and then feel bewildered and amazed that I was actually growing a tiny human in my belly. I suffered a few complications towards the end of the pregnancy. My blood pressure was really high and there was a fear of preeclampsia at week 34. I was cleared of that diagnosis and sent home from the hospital. My doctor, Dr. Michelle, was planning to induce me at week 37. I think my baby got wind of it and decided to come out on his own a day before the induction. Aside from having to dialyze during labour because my blood pressure was so high, it was a relatively smooth delivery. I gave birth to a beautiful baby boy, we call him Malachy. He was smaller than anticipated at 5 pounds 3 ounces, and had a few health concerns that landed him in the NICU for eight days. By the time we got him out of the hospital, I felt we were re-enacting an Ikea commercial. I’m pretty sure I yelled “Start the car” as we ran towards the parking lot. We thought we had survived the worst of it, and we just go home and start to enjoy our baby. We were home for two days, and then while setting up for dialysis one night I was chatting with my husband. He tells me I just stopped talking and my gaze drifted to the corner. I then started to convulse. I had two seizures that night. I was rushed to my local hospital, then to Toronto General. That was on Thursday. Saturday morning I became aware of my surroundings. I was in the ICU and had no memory of the past three days. Worst of all, I hadn’t seen my baby and would have to wait an additional three days before being cleared to see him. That was torture. When we were finally home again, I kept on expecting something else to go wrong. I still haven’t lost that fear. Things seem too good to be true, and I have come to expect things to go wrong in my life. My son just turned nine months and he is a healthy, happy boy. Because I’m attached to my machine at night, I co-sleep with Malaki. It makes it possible to breastfeed him at night. It was easier than I thought at first to sleep with tubes coming out of one arm and to have the baby sleeping beside me. Now that he is getting more active and curious, he has started taking interest in the tubes and in my machine. It’s getting more complicated but is still doable. I never expected to be grateful for dialysis. It isn’t the end of the world like I thought it would be. It gave me back my life. It nursed me back to health. My machine and I have a very complicated relationship where we demand so much from each other. Edward demands complete devotion. Fifty to 60 hours a week of spending time together. He doesn’t let me travel or go away for more than a night, but in return he lets me live every day like I’m not sick, and even helped me fulfil my dream of being a mom. Some moments when I am away from him, I actually forget that I have a chronic illness. I remember my life six years ago. My transplant had just failed, I was tired and swollen with edema, and it felt like I had nothing to celebrate. Today I’m sharing a story of triumph, and no longer even consider myself sick anymore. I live a very fulfilling life and have a beautiful baby boy. I am dependent on a machine of course, but I am not sick. I have so much to celebrate, so much to look forward to. I’ve always resisted the saying that everything happens for a reason. There was no growing or learning in my sickness. There was only day after day of fighting for life. There was only survival. Now that I am past the stage of simply surviving, I’m learning to build dialysis into my identity as a woman, wife, mom and friend. I still refuse to believe there was a purpose to my sickness, but I’m ready to forge meaning out of the struggle and incorporate what happened to me and to who I am. I choose to see my life as whole, not broken. I choose to see my life on dialysis as beautiful and strive to make it so. When I was struggling with my chronic illness and in a dark place, I didn’t want to think of what my future looked like. Now I look forward to my future with my husband and child. I know better than to think that there won’t be bumps and turns, but I have so much to live for and so I’m going to give it all I have.I cannot end this talk without thanking my husband for his unconditional strength, love and support. He has been with me and has (sometimes literally) carried me through every step of the journey, and I am so, so grateful for him. And that’s the end of my talk. >>MICHELLE: If there’s anybody who’s not crying we can entertain questions.
>>MODERATOR: Thank you Michelle and Matti. We are now going to begin answering questions that were submitted in today’s presentation. As a reminder, you can still submit your questions through the questions pane in your attendee control panel. Our first question, can a man who is on dialysis who has had a kidney transplant father a child?
>>MICHELLE: Yes, yes. So men that are on dialysis and have had kidney transplants can father a child. There’s a bit of a controversial literature on whether they could be on Cellcept, but there’s actually no good evidence in the literature to suggest that they can’t be. So it’s the same as sort of for a woman; fertility does decline after a certain age. There’s a variety of reasons why men also may be infertile. And if pregnancy is not coming readily, then it’s important to also be assessed by a fertility clinic, be it a man or be it a woman. >>MODERATOR: Thank you, Dr. Michelle. Our next question, are there any changes to the kidney diet or different nutrition needs during pregnancy on dialysis?
>>MICHELLE: So, on dialysis actually, because we are dialyzing you so intensively, you tend to be able to eat what you want. And there’s even times we might be pushing you to eat more or certain things that were previously restricted to you. And that’s because of the intensiveness of the dialysis, that you will have a less restricted diet. Again, a nutritionist is usually part of your care team, and it’s important to meet with her to make sure you’re getting all the appropriate nutrition that you need during pregnancy. >>MODERATOR: Thank you Dr. Michelle. Our next question, how can I build my confidence around self image and sexuality? >>MICHELLE: Oh, that’s a hard one. Maybe Matti you’re better to answer that than me. >>MATTI: Wow. For me it was really important to not see my life as broken, not to see my sexuality as broken. And I did struggle, especially when I was on medication, with not caring about sex or feeling sexy or anything, and that was a struggle. But when I was well, there was a lot of self talk about how – I would tell myself that I am not a sick person. I am a person with a sickness. And I really tried not to… It was a fine balance between not letting the sickness define my life but incorporating it in a healthy way, so also being honest with what I was going through with my husband, and telling him what I was feeling when I was feeling it. I felt like talking about it helped. It was very embarrassing sometimes to talk about what I was going through, but after I would talk about it I would feel better. >>MODERATOR: Thank you Matti. This next question is really on a similar theme; how can I manage the lack of desire or fatigue because of kidney disease? And how should I talk to my partner about this? >>MICHELLE: I imagine honestly. You should talk to your physician. I know sometimes it’s hard to speak to your nephrologist, but there sometimes are medications that could be impacting it or making it worse. If you’re on dialysis, that’s a very difficult discussion sometimes to have if you’re in a dialysis unit, so you may need to request a separate meeting with your kidney doctor. And they may need to involve other healthcare professionals if it’s not in their sort of area of expertise. And then in terms of talking to your partner, I’ll let Matti sort of answer that. But do review it with your physician to ensure there’s no reversible factors that can be addressed. >>MATTI: I feel like having a sense of humour was really an integral part of dealing with this process. It seemed a bit irreverent, but my husband and I joked about all the things that were going wrong with my life a lot. And being able to laugh about things eased the tension, and it made it easier to talk with him about what I was feeling. Can I get that question one more time? >>MODERATOR: Certainly, the whole question was how can I manage the lack of desire or fatigue because of kidney disease? And how should I talk to my partner about this? >>MATTI: Right. And there were times where sex wasn’t, just wasn’t an option because I was just surviving and sex was not on my radar at all. And my husband was very understanding about that. I’m very grateful that he was. And then when I did have a bit of extra energy, I would try – I would just do everything I could to try to get it done. But yeah, it was not easy. It was a struggle.
>>MODERATOR: Thank you Matti. We do have more questions, and just a reminder, you can actually type your questions into the questions box and I can submit them to our presenters today. Our next question are, any tips on breast-feeding with dialysis access?
>>MATTI: Ok, so>>MICHELLE: Tell them what you did to your bed. Tell them how you built your bed.
>>MATTI: Okay. Well I did have trouble with breast-feeding at first. My milk took six days to come in, which I think is quite a bit longer than normal. So I was producing colostrum for the first six days, but my actual milk didn’t come in. And so I was worried that it wouldn’t come in, but it did. One thing that I thought I had to do was drink much more water, because all the breast-feeding women that I had known just drank water all the time. And so I didn’t realize that I was actually putting on water weight because of all this water that I was drinking. And really, I’ve found that it has not been necessary for breast-feeding. I still have a restricted fluid; I cannot drink a lot of fluid and my breast-feeding, I can breast-feed fine now. So we did rebuild our bed. We built an extension at the head of the bed with much more room at the top, with a little cove for the baby so that he can be above our blankets. So we make sure to sleep very safely with him in our bed. And so I breast-feed while I’m on dialysis at night. The baby’s on one side, my access is on the other. So the machine is on my left side and my access is on the left side, and the baby’s on the right side. And so sometimes it’s a weird circus act to move him with just one arm, but it’s been much easier than I thought it would be.
>>MICHELLE: Yeah, and if there’s issues with breast milk production, that’s not unique to women with kidney disease by the way. Many women have issues. If you’re on dialysis then perhaps the amount of fluid we’re taking off needs to be adjusted. If you’re not on dialysis it could be some of the similar medications can be used as well. Often they’ll use s ome herbals like fenugreek or domperidone. These are also options; you just need to discuss it again with your kidney doctor to make sure they’re safe for you.
>>MODERATOR: Thank you. Our next question, there was a mention of more hours of dialysis are better if I’m trying to conceive. How should I talk to my healthcare team about increasing my hours?
>>MICHELLE: Yeah, so again, it’s important just to sort of have a very direct conversation with your nephrologist. Now if you’re in, for example, just a regular dialysis centre, sometimes that’s a barrier to increase your hours. And it’s hard to know exactly how much of an increase you need to improve your fertility. So sometimes that’s more readily done when you do home dialysis, because you can easily increase your own hours of dialysis. Alternatively though, if it has to be done in centre, we have done that with other women. And it doesn’t hurt to have a fertility expert watching as you’re doing it, because there’s measurements we can do to see if more dialysis is impacting your ovulation and so forth. So again, discussing with your nephrologist who may need to direct you into the hands of a fertility expert is how we’ve done it here previously. >>MODERATOR: Thank you Dr. Michelle. Our next question, sorry, this might have been communicated before I got here, but can you be pregnant and still on dialysis? And the second part is, does this treatment become more aggressive? >>MICHELLE: Yeah, so again, we believe that you need more intense… You can become pregnant on dialysis, but it isn’t easy. You do have to dialyze yourself quite intensively to have a good pregnancy outcome. Again, that depends on how much kidney function that you might have left. So if you do still have some kidney function you may not need as much dialysis, but if you don’t then you’re typically going to need quite a significant increase in your dialysis during pregnancy. For women with no real residual kidney function, our recommendation is minimum 36 hours sort of per week. That’s a little bit of a convenience number, because for some women we’re actually delivering that in in-centre haemodialysis units. So it’s sort of like you’re there for almost four full shifts. So women have come at different times, for example, depending on their life and their lifestyle. Sometimes we can have women come to different centres, depending on when they were working and when they were at home. So there’s a variety of different ways to get the intensity of dialysis increased. And again, it’s a matter of discussing it with your kidney doctor.
>>MODERATOR: Thank you Dr. Michelle. And our next question is, is there any data available that shows a comparison of pregnancy outcomes with transplant versus the general population? >>MICHELLE: Yeah. So the stuff that I showed you on one of the slides was from the three large registries. So one’s from Australia, one’s from UK and one’s from the U.S. So actually live birth rates are lower with transplantation sort of than the general population, and rates of preeclampsia and pregnancy complications are higher. So transplant patients can have up to a 25 to 30% risk of preeclampsia. So again, it’s very important to be carefully monitored by your team, because there are preventative strategies that can be done. But a very careful obstetrician that’s watching your baby’s growth and your placental function is critical in pregnancy transplant recipients. So the risks are higher however they are still manageable. >>MODERATOR: Thank you Dr. Michelle. And that’s all the questions we have for now. I’d like to finally introduce Lydia Lauder, the National Director of Programs and Public Policy at The Kidney Foundation of Canada, to say a few words. Lydia? >>LYDIA: Thank you, Tracy. I just wanted to say that we were extremely fortunate to have such wonderful presenters in Dr. Michelle and Matti. And Matti, I just really wanted to thank you for your honesty and sharing your story with us. I don’t think there was a dry eye in the house, and you know, I think we were all snuffling a little bit. So we just appreciate your braveness and heartfeltness, and just that sense of warmth that you’re able to portray. And Dr. Michelle, thank you so much for your knowledge and sharing it. And you know you truly gave us a webinar of hope, and we’re extremely grateful for that. And also, I just wanted to say that the Foundation’s very proud to bring you this webinar, and we invite you to go to our website for any past or upcoming webinars in the future. And it’s just been an absolute pleasure to have our presenters here today, and also to Tracy for assisting us with this webinar today.
>>MODERATOR: And thank you, and thank you everyone for attending today’s webinar, Kidneys and Women’s Health. Within the next 24 hours you’re going to receive an email with a survey on this presentation, and we would appreciate if you could complete that and provide your feedback. You’re also going to receive within the follow-up email a link to a recording of today’s webinar. And on behalf of The Kidney Foundation of Canada and our presenters, thank you for joining us today and have a great rest of your day.