One is Enough
Welcome to "One Is Enough," a podcast brought to you by the National Kidney Registry. Hosted by two individuals closely tied to the world of kidney donation— one a living donor and the other a grateful recipient— this podcast serves as your ultimate guide to the complex landscape of living kidney donation in the U.S.
One is Enough
Ep.8 - Navigating Parenthood Post-Transplant with Dr. Nicole Ali
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Can kidney transplant recipients have children? For years, female kidney transplant recipients were strongly discouraged from becoming pregnant. With recent medical advances, that has changed, and under the right conditions, kidney transplant recipients can have normal, full-term pregnancies. Join transplant recipient Samantha Hil, co-host Michael Lollo, and special guest Dr. Nicole Ali, medical director of kidney and pancreas transplantation at NYU, as they discuss fertility, transplantation, and the medical advancements that have significantly improved the outlook for transplant recipients in their family planning journeys.
Fertility and Pregnancy in Transplantation
Speaker 1Welcome to today's episode of the One is Enough NKR podcast . My name is Samantha Hill and I am the marketing director here at the NKR , as well as a living kidney donor recipient .
Speaker 2And my name is Michael Lado . I'm the Chief Strategy Officer and a living kidney donor .
Speaker 1And today we are talking about what Mike .
Speaker 2Well , this is a topic that is not so familiar to me , although I do have three children . I did not get pregnant . My wife did , so this podcast is more geared towards women , I think , but Samantha still wanted me on here . I'm not quite sure why , but I guess we'll figure it out as we go along .
Speaker 1So today we are talking about fertility and pregnancy in transplantation , and so this is something that is very near and dear to my heart , because this really impacted me especially , and when I was transplanted back in the Stone Ages , as I always like to say the idea of a transplant patient getting pregnant and having a child were just like the most astounding idea in the world . It was not something that you did Because of the medication at the time this was 16 years ago and the state of the transplant industry . You didn't do that . It was a very , very bad idea . They in fact told me and Mike might want to cut this out because he usually hates it when I say this but when I was 12 years old , they told me the worst decision I could ever make would be to get pregnant , and if I ever did , the best thing for me to do would be to terminate pregnancy . And so I always grew up thinking , ok , well , that's just never going to happen , so I'll adopt and move on with my life , so in walks , or rather so .
Speaker 1Then I aged out of the pediatric transplantation system . My nephrologist retired . In fact , my pediatric nephrologist , valerie Johnson , who was absolutely epic at Cornell , loved her dearly . She retired and so I needed to find an adult nephrologist . I was 20 at the time and I bounced around to a couple different centers , a couple different doctors , before finally , full disclosure , ending up with our guest for the day , dr Nicole Ali at NYU , who I have loved ever since , and this actually came out of my first interaction with her . So my first appointment with her about two summers ago was just a regular old checkup and I get to know you kind of thing . I mean , my kidney was fine , so there wasn't much we had to do . But we were going through the regular questions of do you smoke , do you drink , et cetera , et cetera , the regular , normal intake questions for a new patient . And one of those questions was are you pregnant , do you plan on becoming pregnant ? Because I'm a female .
Speaker 2So it was just normal Boy , dr Ali , got personal right away .
Speaker 1Oh yeah , again , just the regular intake questions . But I said , well , wait a minute Before you leave . What if I had said yes to any of those ? And at the time I was painfully single , so there was no chance that that was actually going to happen or going to be said yes to . But I just wanted to know , because it had been 16 years , so maybe there was some change there had to have been .
Speaker 1It was 16 years and she said , oh well , sit down , because things have changed . And I told her what I was told when I was 12 years old and she was like oh no , no , no , no , no , no . Things are very different now and I'm going to have her actually answer what she said . But that's kind of the basis of why we're doing this episode , because it was so different from what I had been told and that's part of why we're doing one is enough to get correct , current information out into the world and normalize the conversations around transplantation , both in the process of donation but also living your life post transplant , both as a patient and donor .
Speaker 2So what do you say to all that , dr Ali ?
Speaker 1Yeah , so I'm going to just go ahead and introduce Dr Ali from NYU . She is the medical director of the kidney transplant program over there . She's again my nephrologist , and just one of the best transplant nephrologists on this planet , I think , but I'm incredibly biased .
Speaker 2I will second that she is absolutely amazing .
Speaker 1Yeah , she is also on our medical board and is a great help and friend to the NKR .
Speaker 2So how did you have time to even do this podcast with all that stuff ?
Speaker 3That's why we're doing it at this hour .
Speaker 1Yeah , it's 2am . Just you know I'm kidding . So is there any other title that you want to add ?
Speaker 3No , I mean , I love being a transplant nephrologist . I'm the director of outreach for the NYU Transplant Program and the medical director of the Kidney and Pancreas Program , and you know , one of the things that I think is most enjoyable about being a transplant nephrologist is getting people back to whatever their life they wanted before they ended up with kidney disease . And so , mike it's funny that you said I was getting personal it's actually a standard question that I ask every you know , young woman that I see , whether for after transplant care or before transplant , because I do think a lot of people don't realize that you can go on and truly have a normal life in all ways after transplant . You know , pregnancy on dialysis is really tough and has not great outcomes , and so for someone trying to go through a pregnancy on dialysis they have to do double the amount of dialysis that another person does . So they do dialysis six days a week and longer sessions . So six days a week , at least four up to five hours a session .
Speaker 3And even with that kind of dialysis , still the baby doesn't develop as well and so many pregnancies on dialysis still result in either really early term pregnancies in the 20s of weeks of gestation , with months in the ICU , or don't ever , unfortunately , actualize to having a real little baby to take home . But with transplant that is a very different world . With transplantation , after waiting the appropriate time to make sure that you've gotten through the first year of transplant , not had rejections , and with the right medication adjustments , patients have normal pregnancies , go on to full term pregnancies , don't you know , babies are delivered and don't always end up in the ICU . Really go home and be like whatever it would have been had kidney disease never crept into your life .
Speaker 2So , dr Ali , samantha mentioned that you're a nephrologist . Yes , yeah . So I have to be honest . Until I donated my kidney , I had no idea what a nephrologist did . I had no idea what they were . I literally I don't even know if I heard the word nephrologist prior to my kidney
Pregnancy in Transplant Patients and Nephrologists
Speaker 2donation coach . So can you explain for the other Michael Lallos out there that don't know what a nephrologist is ? What is a nephrologist ?
Speaker 3So a nephrologist is a kidney disease specialist . You know a nephrologist do everything related to kidney disease , such as high blood pressure management . You know anything that causes new problems with the kidneys . So your kidneys are the organs that are responsible for cleaning your blood and making urine , and so we manage all of that . And then we've got a subset of nephrologists that do transplant nephrology , which is taking care of patients who have a kidney transplant or any other type of transplant .
Speaker 2Excellent . Thank you , because I'm sure there are other people who are listening that have no idea what a nephrologist is . Like I didn't know back in 2018 . Now I'm a little bit more versed in what a nephrologist is , but I appreciate the explanation .
Speaker 1So what was the state of transplantation about , you know , 10 , 15 years ago in terms of pregnancy , when I was , when I was told what I was told that makes my cringe , you know was that kind of the only option ? Was it like , all right , adopt or bust ?
Speaker 3back then I mean there was much less data available about the success of pregnancies and how to really support someone through their transplant journey as well as their pregnancy journey . The main concern when we talk about pregnancy and transplant is that the immunosuppressant medications that we use , commonly celsapt or myphordic . That medication is toxic during the developmental stages of the pregnancy and so in the first trimester , when pregnancy is really developing and the fetus is developing , many birth defects develop at that point if someone gets pregnant on those medications . So in order to have a baby without the risk of birth defects , you have to come off that medication and unfortunately , when you come off of that and onto the weaker immunosuppression , imurand , which is also called azothioprine , you do risk rejection , and the collaborative data that was available in terms of how to do that conversion and how to support someone successfully and what everyone else was doing wasn't really all in one place .
Speaker 3There is an organization that used to be called the National Pregnancy Registry . They are now called the Transplant Registry Transplant Pregnancy Registry International . They were established originally in 1991 and then renamed in 2016 . And they really collect the vast majority of data about patients who go on to have transplant both men and women all across all organs , so kidney , of course , being the largest organ , but liver , heart , lungs . What kind of immunosuppression patients were taking ? What are the success rates ? What's the rejection rate ? Have people lost their kidney ? Even some data now on IVF and , most recently , new immunosuppressions have been introduced to the market , in particular one called BellataCEP , and there's not very much data on the safety and pregnancy . However , they have the little data that's out there , and so this pregnancy registry becoming much more accessible over the last 10 years has helped all of transplantation be able to get educated themselves about how to help their patients through pregnancy successfully , and as we all collaborate and share our data with that registry , we continue to learn and improve our care .
Speaker 1So it's not that the transplant impacts your fertility , it's that the medications impact the safety of the transplant .
Speaker 3Correct . In fact transplantation improves your fertility . So having kidney disease and the uremic toxins that build up in the body from kidney disease , these things called middle molecules , that we don't really have a way to report on a lab , but a surrogate for that , is the BUN right . When people's BUNs are high because they're in kidney failure , they've got a lot of toxins building up . Those toxins actually suppress fertility . So for some young women , when they have kidney failure they may lose their cycle . Their cycles become irregular , they may not ovulate on a regular cycle , and so fertility actually decreases .
Speaker 3With kidney disease in women , transplantation clears you of all those toxins , and so for many young women after their transplant they get their cycle back for the first time . It may be irregular in the beginning , but then it gets regular , and so their fertility actually increases and improves . And that's why , for the first year , we counsel people to really be attentive to contraceptive use , because while a lot of patients come in thinking that their fertility is actually decreased , in fact their fertility is increased , wow . And so those first few months or a year after the transplant you're actually quite fertile . And so we do recommend that for patients who are on celsa and mycophenolate , that not only do they use one , but actually use two forms of contraceptive , so one of those being a barrier contraceptive , so condoms , and then one being whatever other method you use , whether it's an IUD , birth control pills , birth control injections , patches , those sort of things and that's to try to really prevent pregnancy , while on mycophenolate agents .
Speaker 2So I'm assuming it's fair to say that if you're a female who has had a transplant , you should be consulting with your transplant team or nephrologist before you decide to attempt to have a family . Is that accurate ?
Speaker 3Absolutely so . My recommendations are you wait till the one year mark . At the one year mark , that's when you've passed a year of immunosuppression without any rejection , without any recurrence of disease in the kidney . So for some people they have a kidney disease that can recur in the transplant , such as FSGS or IGA or lupus . So you've gotten past that period and then you've also gotten to a stable point in terms of your immunosuppression needs and you're further away from the rejection risk . Of course , the rejection risk is never zero , but you're now at a point where , if you haven't had rejection for a year , you've been good with your medications . We can start this conversation .
Speaker 3The other things that are predictive of success during a transplant pregnancy is having well-controlled blood pressure before starting the pregnancy and then having little protein or no protein spilling into the urine . If you have more than one gram of protein in the urine , it indicates that there's already some sort of damage to the transplant kidney , and during a pregnancy that can get worse . Wow . And then having a creatinine ideally less than 1.5 , so that the best kidney function possible to go into the transplant . So those are sort of the parameters More than a year from transplant , creatinine less than 1.5 , well-controlled blood pressure , stable immunosuppression regimen and no protein or less than a gram of protein .
Speaker 2You mentioned before about people who are on dialysis and pregnant . How is that ? Can you go into more detail on how that's handled ? Because the first I've ever even thought about that that someone could a female could be on dialysis . Obviously , I know they could be on dialysis , but being on dialysis and then also being pregnant was not even something that came into my mind . So if you can expand on that , that's really interesting .
Pregnancy and Transplantation
Speaker 3This is a very important topic because it surprised me , samantha , with you , that , as informed as you are and connected as you are to transplantation , that you didn't know that you could go on to have healthy , normal pregnancies .
Speaker 3And it really took me time to kind of figure out why that was and to realize that , while I always talked to my young women about pregnancies and the success of pregnancies , that there may be patients out there who were told that pregnancies are not successful and that pregnancies are risky . And in fact , when I joined NYU , even some of my colleagues who , of course , were not female , were saying that maybe pregnancy is a really risky thing . Now , as a team , we all have grown now to manage pregnancies , but it certainly is something that , yeah , there may be some misperceptions and there's certainly hesitation , I think , when someone doesn't have a lot of experience managing patients through pregnancies that are transplant candidates , because it is complicated and I certainly tell my patients you know we're getting pregnant together , it's going to be the three of us , we're going to be really close for the next nine months , but you're not sharing in the college costs , right ?
Speaker 3Not no . I draw the line at college costs and at diapers . Diapers is a sort of a second to the power .
Speaker 2So I was going to say to the man that that's a bargain . I put out a PSA . If you're a patient , a transplant patient , you get pregnant at NYU . Dr Ali shares in diaper changing and college costs .
Speaker 3Oh no , I did my share of diaper changing , diaper buying formula , sleepless nights , all of that . We are only together in this for the first eight to nine months , that's funny .
Speaker 1Well , it was funny because I always went to my nephrology appointments and the reason I was so lacking in knowledge was because I always went to my nephrology appointments with my with either my parents or at least my father , because usually it was like , okay , somebody on our medical board is my nephrologist , and so it's like it's not just my nephrology appointment , it's also , you know , dad getting to see his body and talk about the latest medical board stuff or the latest swap failure stuff . And you know , it was never just my appointment . And with Dr Ali , you know , it was like , okay , dad , I love you back off , this is my nephrologist now , you know .
Speaker 2I'm out of the room .
Speaker 1You know you're not coming with me this time , it's just going to be the two of us . I'm in my mid 20s now . I think I was 25 when I first started seeing Dr Ali , but or 24 . But and you know , I was like okay . Well , now that I'm not completely and utterly embarrassed about asking about this sort of thing in front of my dad , I'm going to ask her because she brought it up .
Speaker 2So I think you've overcome that , because now you're on a podcast talking about it .
Speaker 1So you definitely don't know what podcasts are .
Speaker 2He's never going to listen to this . You could say whatever you want , he will never listen to this .
Speaker 3Well , this part of the question . I haven't . I haven't listened to a podcast myself . I'm working on it . It's on my list of things to learn . One of my younger surgeons is . He calls . He's my junior mentor , he says because he teaches me the electronic things how to make my phone work properly , and so I'll add this to his list to explain to me how do I listen to podcasts .
Speaker 2Well , I think your first podcast should be . One is enough .
Speaker 3It will be .
Speaker 2Okay , agreed .
Speaker 3It's amazing the things that we don't think of from the patient perspective . You know , the little things that you're told that end up changing all the decisions and all the pathways that you think are open or end up being closed for you . So I hope that this gets to reach patients to know that pregnancy is an option . You know , for Mike , you're asking about the success rate of the pregnancies for patients who are on dialysis and unfortunately , less than 30% of pregnancies on dialysis actually result in a successful live birth . Wow , that a lot of them and before 20 weeks of pregnancy , compared to transplant , where the success rate is almost 80% .
Speaker 2Wow .
Speaker 3And in kidney transplant it's even higher than that . So you know , transplantation really affords with planning the access to having healthy pregnancies both for mom and for the baby .
Speaker 2Wow , now I don't . Well , this is a pause here Because I don't know when to interject on this . So I'd submit that if you have additional questions with this . But I'm going to segue into . Okay , I'm going to say at some point I have to segue into donors , yeah .
Speaker 1Yeah , because that is a common question too .
Speaker 2Well , I don't know , so I don't . You want to finish ? Do we want to finish ?
Speaker 1Yeah , so let's finish this bit and then we'll go into the donor stuff , because the donor stuff is quick , I mean the donor stuff is like wait a certain amount of time and then you're fine .
Speaker 2So from my understanding .
Speaker 1It's like basically wait X amount of days and then go have fun is from what my understanding is . But so you know one of the other things that I wanted to potentially discuss , and it goes back to the idea of you know your fertility being increased . So you said it doesn't impact your fertility , impacts the health of pregnancy . So in that case , you know , is there a difference in success or necessary use of IVF ?
Speaker 3IVF after transport . Yes , so it depends on the type . So for patients who are doing IVF where they are going to carry the baby through the pregnancy , they do have to be off cell sept and that's because you know . If you're carrying the fetus during that first and second trimester while organs are developing , that's when birth defects happen .
Speaker 1We do keep patients off , and what kind of birth defects ?
Speaker 3Good question . So a lot of them are facial defects that happen on cell sept . So cleft palate , you know , eye socket and ear deformities and jaw deformities .
Speaker 2Wow , Okay , so , which is like where I'm like my mind is going . You're saying that the patient or the recipient needs to be off these medicines . Right , go off the immunosuppressive drugs or on this other immunosuppressive drug that is a lesser dose but that is causing probably damage to the kidney that they have , right , no ?
Speaker 3Because if you stop immunosuppressive drugs .
Speaker 2That's a problem , right , Right .
Speaker 3So you can't stop the immunosuppression , you switch them out .
Speaker 3So , of all the immunosuppressants that patients are on , the one that causes a problem is cell sept or microventilate , which is also the other brand of it is myphoric , so that's the one Takralymus cyclosporine , we think Bellata sept , prednisone , those are all okay and those we don't touch , we continue those . The cell sept , which that class of medication , is the one that has to be stopped . That is switched to a medication called imurran , which is also called azothioprine , and you continue that for about two months before attempting pregnancy .
Speaker 2That was my next question . Yeah , so they need to be off that medicine for two months for it to get out of their system .
Speaker 3Exactly so you allow it to wash out of the system . But also what you're doing in that time is giving the immune system time to decide if it's going to react against the kidney . So in that two months you're watching the patient closely and watching their creatinine closely so that if you end up having a rejection , you have the ability to pick up on that rejection before the pregnancy actually starts and you can potentially reverse course , do kidney biopsies , treat rejection and then , unfortunately , you're waiting another year before you try again , because once you have a rejection you have to go back on cell set . So the two month period between changing medication and then waiting to start attempting pregnancy is really a trial period for washing the medication out and to seeing how your immune system decides to react . Then , once you're actually pregnant , the first trimester is pretty stable in terms of the immunosuppression , but in the beginning of the second trimester the baby's liver actually starts to metabolize or chew up the tachrylimus or cyclosporine whichever drug you're on gets affected by the fetal liver , and so at that point you need to monitor the immunosuppression levels very closely , because tachrylimus , for example , can drop very low and patients could have rejections during pregnancy .
Speaker 3But it's not always easy to detect because naturally creatinine should go down during a pregnancy and so in transplant patients it simply may stay the same , it may just not go down . And so you know something is going on if the creatinine is the same or slightly going up . But unfortunately at that point you're in the middle of a pregnancy and so your ability to treat rejection , and sometimes even diagnose rejection , is limited . So really try to give some time before conception to try to allow the immune system to show you is it going to start to act up or is it going to be okay with the dose of amyran .
Speaker 1And if something does come up , how early can you successfully have that child and then go on all of your immunosuppressants ? What does post birth look like from that standpoint ? Because obviously you have to go back on . But what about breastfeeding and all of that stuff ?
Speaker 3Good question . So I work very closely with a high risk OB team and I would recommend that for any transplant patient who's pursuing pregnancy , that you need a transplant nephrologist and you need a high risk maternal fetal medicine team that are coordinating and able to talk to each other very readily and that's best in the same hospital , right ? Because there will come a point where you're going to have to ask exactly that question . Not all pregnancies will make it to 40 weeks . In fact , most transplant pregnancies make it into the middle of the third trimester but are delivered somewhere in that period , so after the baby's lungs have been developed and it's safe for a pregnancy , but still not at 40 weeks . So I tell my patients who are pregnant a couple of things . One plan the baby shower early . No , baby showers should be after 30 weeks , they should all be before . So we have time to get through the baby shower before the baby shower 20 weeks , that'll be fine .
Speaker 1You're barely showing , but it'll be fine in the pictures .
Speaker 3And then the follow up is really intense . By the time you get to a year after transplant you're probably down to doing once a month blood and you're back to your routines and working . But then during the pregnancy , in the second trimester , we go back to weekly blood work . And the weekly blood work is because we have to monitor the immunosuppression levels so closely and we're also monitoring the urine to see if there's any protein developing in the urine and then also monitoring your blood pressure to make sure your blood pressure isn't going up , because those are the early signs of something called preeclampsia which may happen towards the end of the second , beginning of third trimester . If you develop preeclampsia , then between the transplant nephrologist and the high risk OB team and yourself and your partner , we have to decide at what point do we hospitalized you to be monitored ? At what point do we think the baby is well enough to be delivered in order to prevent any further complications with mom ?
Speaker 3Preeclampsia early on is simply a little bit of blood pressure going up and we can control that with additional blood pressure medications . But when it progresses to more protein in the urine and then the creatinine going up and then the blood pressure being harder to control . Then it goes into what we call eclampsia , which can then result in seizures . So we at that point really need to try to make sure that we are stopping the progression of this preeclampsia to eclampsia pathway , and so for many of my patients they've been delivered about 34 and a half weeks . I had one patient who made it to 40 weeks , but most of my other patients that I've had about 15 patients get pregnant and deliver successful , healthy babies .
Speaker 3And what time span In about the last 10 years that I've been practicing in back in New York . I was in Jersey before that , which is a good number of pregnancies . It certainly keeps me stressed .
Speaker 2That's awesome .
Speaker 1That's fantastic and is bed rest a part of the ?
Speaker 3equation ? Not necessarily . I mean only if there is an issue in the pregnancy which is probably not related to the transplant and is one piece . But pregnancies have their own list of complications and things that can happen , like how the placenta implants into the uterus that could end up with some complications . So if any of those type things happen then the OB has to manage through those and sometimes somebody might end up with bed rest for an obstetric issue .
Speaker 3But transplant wise , my patients have all continued to work , continue to do what they're doing in their normal lives , but with a very strong commitment to doing blood work every week . Seeing the high risk will be one week , seeing me the other week . We alternate checking their blood pressure at home every day , letting us know if the swelling is getting worse or the blood pressure is getting more uncontrolled , because those are all the early signs that something isn't going right . And then we need to come to the hospital right away and make sure that we can check out labs and blood pressures and stabilize what we need to stabilize and then make those decisions about delivery .
Speaker 1So delivery , is there any difference ? Or is it C-section better because of kidney placement or Uh-huh ? So , Ryan , can you ?
Speaker 3start . Good question . So here at NYU our OB team does coordinate C-sections to make sure a transplant surgeon is around , but in fact it's not really needed . The kidney transplant is not in the same plane as the uterus . There's been . We always have a transplant surgeon in the operating room or in the hospital . They're usually there , you know , standing in the corner watching the C-section . They're not really needed but it is more comfortable to have them there . You know , we've had one of my patients who had her kidney transplant was midline , so it was in the middle because it was like her repeat transplant , I think her third , and for that we really wanted our transplant surgeon there just in case anything happened . But they're in such different locations and the OBs are so extremely skilled at sections but not all patients have a C-section . Most of my patients actually go on to natural labor and have been able to deliver , you know , vaginally , as would be usual .
Speaker 1Wow , interesting .
Medications and Breastfeeding for Transplant Patients
Speaker 1And then , once the baby is born , how does breastfeeding work and all of that .
Speaker 3Great question . So the data ? I assume you have to go back to your meds right , yeah , I mean .
Speaker 3I tried to make this decision with the mom because I think everyone sort of has a different preference in terms of breastfeeding versus going back on their medications .
Speaker 3There is not a great body of literature about breastfeeding and the mycophenolate agents , so there is some thought that the mycophenolate medication could get into the breast milk and therefore you're feeding the baby some immunosuppression . But we don't have great data on that and probably the patients who want to breastfeed may choose to stay off of cell sept , stay off of myphoric , but on the flip side , for some patients they want to get back on their immunosuppression as soon as possible . What was really important was getting through the pregnancy and then preserving their kidney function and making sure we get back to where they need to be , and so some people do choose not to breastfeed and go back on their mycophenolate agents . I did have one of my patients in Jersey actually happened to be an OBGYN nurse and so she had the most extensive review of breastfeeding literature and had the best experience and she chose to breastfeed and go back on her mycophenolate . Oh , interesting .
Speaker 3And the baby is just fine , and so I think that's a body of literature that we need more data on and more information . But I talked to the patient about risk benefit , what we know , all the things that we don't know , and then make a decision together and then formula versus breastfeeding .
Speaker 1Yeah , apparently , or both . And then what about ? And this is getting more into the lifestyle of a patient , and you are not a patient , but so maybe you can speak to it as a clinician , but not necessarily as lived experience . But what about those early months when you're immunizing the child and doing all of that ? I mean you're immunosuppressed yourself . What does that look like ?
Speaker 3So I think after a baby is born is really hectic , and moms are sort of naturally the ones to take on everything . However , they really need to rely on their partners and their family support system to help , because they also have to go back to taking care of themselves as well , eating while hydrating . I remember those first few weeks getting home from the hospital . I had two pretty complicated pregnancies , and so it is hectic and trying to remember to eat and drink and take care of yourself , while also taking care of the baby and changing diapers and not sleeping and trying to remember who you fed and did you feed yourself to .
Speaker 3And oh , did you take your pills and then you have to add medications to that right .
Speaker 3Did you take yourselves up today to take your tacrolima ?
Speaker 3And so I encourage my patients to remember that they need to focus on them and they need to be okay with taking help from the family and the spouses .
Speaker 3And one thing I forgot to say in the beginning when we meet the one year mark and a patient wants to pursue pregnancy , I actually set up an hour counseling session with them , separate from the visit , where all we talk about is pregnancy , and we talk about pregnancy with them and whomever is going to be their support person or spouse , because I think it's important that their spouse also understand the process and what we're doing and the commitment that's needed to support my patient , and I've never had a single patient and spouse say , no , I'm not coming , or I'm coming alone .
Speaker 3It's really a very informative session and it gives an opportunity for everyone to ask questions about things that I don't even think about adding as the clinician , and so that's versus having a good support system and defining what that is , and not everyone does traditional pregnancies , but you have to have a support system , whether that's mom or auntie to help you . There's going to be someone there that you have to rely on For the vaccination . So certain vaccines are live vaccines , right , that's kind of what I was getting at .
Speaker 3The live vaccines
Transplant Recommendations and Donor Implications
Speaker 3. We do recommend that the transplant immunosuppressed person tries to avoid changing diapers , and for about three weeks .
Speaker 1So wait a minute . As a transplant patient mom , you have a legitimate excuse to make dad change the diapers . Yeah , I just want this in writing . Can I get this in writing somehow ?
Speaker 2That's awesome . I love that .
Speaker 1This is fantastic news for me .
Speaker 3The live virus from the vaccines is shed through the stool , the GI tract and also through the nasal passages .
Speaker 2Oh my gosh , it's going to be tough and they're pooping and stuff's coming out of their nose passively , so that's not good .
Speaker 3Exactly . I mean , the little little ones aren't so sniffly , but they're definitely pooping and so you do have to be careful with the diaper changes . If they're sick , then certainly also trying to . Now that we all wear masks , sometimes wearing a mask is not so terrible if the baby's really close . It helps protect the baby from germs , it helps protect you from germs as well . So certainly in those situations you can wear a mask . But the biggest one is really trying to avoid diaper changes and making sure you ask the pediatrician which is a live vaccine ? Is there a non-live version that would be just as effective for your baby ? And if not , then yes , you should vaccinate in , you know , if that's in line with what you think . And I encourage vaccination , but with some precaution to mom or to the immunospressed individual .
Speaker 2So a serious question if your spouse is not around , is the precaution just a mask or , like I'm really being serious , should you ? Change the baby with like gloves , like well . So what if you had to do it ? What would be the best you have ?
Speaker 3to do it alone If you had to . Yeah , I mean , a mask helps for the respiratory secretions and for the diaper gloves and then hand washing after definitely would keep you safe . But the first preference is have someone else change Of course , Because moms don't get breaks for much , you know .
Speaker 1That's the preference for me Now we're really focusing on female patients here . Is there anything for the male patients , you know ? Is there any impact to sperm motility ? Is there any impact to them during this , besides , obviously , the post transplantation or the post birth ? You know , vaccines and whatnot ?
Speaker 3Yeah . So for men who are fathering children , the cell-sep mycophenolate myphortic issue is not an issue . It is only in the fetal development . It is not a problem for sperm . So I've had some patients , some male patients , tell me that they were told they have to come off . They do not need to come off . There is no birth defect issue . They can father pregnancies just fine from day one . There is a medication class called the MTOR inhibitors , so that's rapamune , serolimus , evrolimus . Those medications that class can decrease sperm count and motility . And so for patients who are men and are trying to , you know , create a pregnancy with their spouse but are having problems if they're on those medications they should definitely have their sperm check . It is reversible . When they come off of those medications the sperm count does go back up and they're able to go through with natural pregnancies .
Speaker 2No , that's fantastic . That is great information .
Speaker 1So switching gears a little bit . You know it's not as big of a piece of your life , dr Ali , but I know Mike has gotten some questions on this throughout his mentoring program days as a donor , what is involved with donation and pregnancy ?
Speaker 2So , dr Ali , one of the reasons why , of course , we got to always bring it back to the donor . That's where I go . Samantha always goes to the patient , that's why we're such a great team .
Speaker 1Yeah , that's why we do this together . We have one patient , one donor . Everything turns out equal
Pregnancy and Donation for Female Donors
Speaker 1in the end .
Speaker 2But I just when you start listening to podcasts , you will listen to the episode where we had Megan Morant , who is a WWE personality , and when she just recently donated , and she only had two questions for her nephrologist and the two questions were can I run marathons , because she's a marathon runner . And the next question was can I get pregnant after donation ? And she said on the podcast that if her nephrologist said no , that she couldn't get pregnant , it would really give her pause and she would have had to figure it like maybe she would have had the family first and then decide to donate . So , like Samantha said , I think it's probably not as involved , if you will , as a disperse patient . I loved hearing all that . It was great information . So what about for a donor , a female donor ? Can she get pregnant ?
Speaker 3Yes , so donors can definitely get pregnant . There's no impact on fertility . The one thing that we do counsel donors on is the risk of preeclampsia , which again is high blood pressure during the pregnancy , which is increased with just one kidney . It's not very high to begin with , but it's slightly increased from the general population , and so , to try to minimize the risk of preeclampsia developing , we do advise patients to wait at least six months after donation , preferably a year , in order to get pregnant , because by that point you're now one kidney that's left will have accommodated for , you know , uncompensated for the loss of the others . So your kidney function has stabilized , your blood pressure has stabilized , all of the things , and so you're in a better state , rather than adding stress to then a surgery that you just had a month ago . Now , full disclosure I've had patients accidentally get pregnant one month after donating , went on to have perfectly healthy , normal , no preeclampsia pregnancies , but it did stress me out a little , it's not recommended .
Speaker 3No , you don't stress your doctor out , that's the key there Did increase my blood pressure a little bit , until you know , nine months later , when she delivered and was healthy . So we do recommend some waiting time just to allow the body , to you know , recover from the donation and then have a healthy pregnancy going forward .
Speaker 2So that's it . That's the donor segment . We're done , it's that simple .
Speaker 3That's the donor segment . Yeah , Wait six months to a year .
Speaker 2Obviously , you know . Consult with your nephrologist and have your baby .
Speaker 3Yeah , I mean , I tell , I remind my patients that if they do get pregnant in the future , at whatever point that is , give us a call so that we're aware , and then also to remind their OB that they have one kidney , so that you know blood pressure is being monitored and protein is being monitored a little bit more closely than if they were not a kidney donor but have had no issues with any of the pregnancies . And it's important to know , though , that there is a slightly increased risk of preeclampsia , which is why you should be , you know , really monitoring yourself during pregnancy and male donors .
Speaker 3No issue for male donors . They can just keep on doing it normally . Yeah , exactly Awesome .
Speaker 2This is a ton of great information .
Speaker 1Yeah , and this is why I was so excited about this , because this one feels this episode feels the most scientific of all of our recordings so far . Sure , I think it's really where I was hoping to take this podcast . I really hope Dr Ali will come back , because she is a specialist in like a thousand other things and a thousand other trials and my view is always on the cutting edge . So I hope we can have her back .
Speaker 2But I think that she will be invited again and gladly accept . Absolutely , dr Ali .
Speaker 3Absolutely . I'm here for whatever reason Not to put you on the spot , but no , I love this and I appreciate you doing this because I think you're reaching an audience that we don't always reach in our visits and spreading very valuable information about transplantation , which sometimes we don't always think of talking about some of these topics , and so I applaud what you're doing and I'm definitely supportive and whatever you need from me , I'm here .
Speaker 2Samantha , we got that on tape .
Speaker 1Yes , we did , and .
Speaker 1I will be using that in my visits to her . But , yeah , this is like I said , this is what I really wanted to get out of this podcast because , you know , part of it was to normalize the conversation around donation and transplantation , but the other half of it is also getting the correct information out there and dispelling the myths and beliefs of yesteryear and the wrong facts of Google Doctor and all of that stuff , because we at the NKR are really very fortunate in that we work with over 100 of the top transplant centers in the country and we have great relationships with them , thank God , and we have access to all of these experts who know this stuff but aren't necessarily in the public domain getting asked these questions .
Speaker 2So Dr Ali is probably not going to say anything when I say what I'm about to say , but she said something early that stuck with me . You mentioned , Samantha , that we are partners with slightly over 100 transplant centers . But there's over 250 transplant centers in the United States and I think every transplant center has excellent intentions . But I do think in my experience that , depending on what transplant center you go to , you may get advice . You may get certain advice . My personal feeling I don't know about Dr Ali if she'll comment I always say to donors or even to patients get a second opinion If something doesn't feel right . If you're not sure about that answer , go to a different transplant center , Go to a different nephrologist and see . Like Samantha is a great example , she was given some information . I know it was a long time ago and the information was different , but she was given information and that is sort of contradictory to what we've learned today . So it's completely contradictory .
Speaker 1It said you cannot have children .
Speaker 2We just learned we can . I was trying to be nice , Samantha . I was trying to be nice .
Speaker 1Like I said , it was 16 years ago . The field was much different . I mean , non-seruital immunosuppressant protocols were just entering the market , so it was a completely different show . It's a completely different scene medication-wise . It makes sense that that was the information back then , but the fact is that information changes and that's again one of the reasons that we have this podcast is to send that information out there and do it in a timely manner .
Seeking Multiple Medical Opinions
Speaker 2I'm happy there are many Dr Ali's in the world . We have the best Dr Ali here on the podcast today but there are excellent nephrologists and excellent transplant teams throughout the United States and , like I said , I strongly encourage people to seek other advice if they're not getting the answer that they , or they're not getting an answer at all the Senate that they're at .
Speaker 1Absolutely so . Before we close this out , first of all I just want to thank Dr Ali again so much for not only being a wonderful nephrologist for me , but also for joining us tonight on this podcast , and for to NYU for again being a wonderful transplant center to me but also being a great transplant center , a great friend to the NKR and letting her join us on this podcast . We cannot do this without great partners like NYU .
Speaker 2Absolutely .
Speaker 1Dr Ali , is there anything you want to add to the transplant community at large before we close this ?
Speaker 3down . Thank you so much for having me , and I think of transplantation as getting back to the life that you wanted if you'd never had kidney disease . And if there is a question that you have or something that seems to be a barrier , like Mike said , ask another question , ask another opinion and see if we can get you back to where we wanted you to be .
Speaker 2You can learn more about the podcast by visiting kidneyregistryorg Slash 1 . When you're there , you can sign up to be on our email list so that you'll be the first to know when we drop a new episode . And , trust me , you want to be the first to know .