Abstract
Pregnancy is an important goal for many women with CKD or kidney failure, but important barriers exist, particularly as CKD stage progresses. Women with advanced CKD often have a limited fertility window and may miss their opportunity for a pregnancy if advised to defer until after kidney transplantation. Pregnancy rates in women with advanced kidney failure or receiving dialysis remain low, and despite the improved outcomes in recent years, these pregnancies remain high risk for both mother and baby with high rates of preterm birth due to both maternal and fetal complications. However, with increased experience and advances in models of care, this paradigm may be changing. Intensive hemodialysis regimens have been shown to improve both fertility and live birth rates. Increasing dialysis intensity and individualizing dialysis prescription to residual renal function, to achieve highly efficient clearances, has resulted in improved live birth rates, longer gestations, and higher birth weights. Intensive hemodialysis regimens, particularly nocturnal and home-based dialysis, are therefore a potential option for women with kidney failure desiring pregnancy. Global initiatives for the promotion and uptake of home-based dialysis are gaining momentum and may have advantages in this unique patient population. In this article, we review the epidemiology and outcomes of pregnancy in hemodialysis and peritoneal dialysis recipients. We discuss the role home-based therapies may play in helping women achieve more successful pregnancies and outline the principles and practicalities of management of dialysis in pregnancy with a focus on delivery of home modalities. The experience and perspectives of a patient are also shared.
Keywords: ESKD, hemodialysis, patient self-assessment, patient-centered care, peritoneal dialysis, women's health
Introduction
The World Health Organization considers reproductive freedom to be a human right, defined as an “individual's ability to decide freely and responsibly the number, spacing, and timing of their children and to have the information and means to do so, as well as the right to attain the highest standard of sexual and reproductive health.”1 Women with advanced CKD and kidney failure should be afforded the same opportunity to plan their families yet are frequently counseled about reproductive options too late in their disease course or advised to defer pregnancy until after kidney transplantation, which may occur beyond their child-bearing window. Lack of physician experience in managing pregnant women on dialysis may influence clinician support for pregnancy and outweigh a woman's desire to conceive. In a recent cross-border survey of Canadian and American nephrologists, <40% of the surveyed physicians felt very comfortable managing a pregnancy on dialysis, citing the need for more educational resources.2
Despite the associated risks, there has been a shift toward acceptance of pregnancy on dialysis among patients and health care providers alike, and it has become increasingly likely that nephrologists will face this clinical scenario.3 Nephrologists, therefore, should have the skills and knowledge to counsel patients, informed by an understanding of outcomes and ethical issues.4 Furthermore, dialysis availability and capacity are variable across the globe, and significant dialysis capacity constraints may also limit equitable access for women with kidney failure of reproductive age who may desire a pregnancy. Global initiatives that promote home dialysis may be an opportunity to improve access to more intensive regimens for those who desire future pregnancy or have already conceived, as demonstrated in the patient perspective (Figure 1).5
Figure 1.
Frieda.
Fertility in Advanced CKD and Kidney Failure
Owing to dysregulation of the hypothalamic–pituitary–gonadal axis,6 amenorrhea, oligomenorrhea, infertility,6–8 and sexual dysfunction9,10 are highly prevalent in women with kidney failure. In a survey of 76 hemodialysis-dependent women, aged 55 years or younger, only 42% reported a regular menstrual cycle compared with 75% before commencing dialysis.8 In addition, only 50% were sexually active, of whom 36% used birth control pills and 13% had birth control discussions with their treating nephrologist.8 Initiation of effective dialysis and correction of anemia may improve fertility and ovulation, with potential for unexpected pregnancy. However, women with CKD who fail to conceive within 6 months of regular unprotected intercourse should be considered for fertility assessment.
Pregnancy and Birth Rates in Women Receiving Dialysis
Data regarding pregnancy rates are limited by heterogenous cohorts, poor capture of early pregnancy loss, and therefore a focus on birth rather than pregnancy rates. For example, data from the Australia and New Zealand Dialysis and Transplant Registry, including all births from 1991 to 2013, revealed 31 dialysis-dependent mothers gave birth to 37 babies of which only five occurred on peritoneal dialysis (PD).11 Birth rates were significantly higher in the more recent eras (2001–2013) compared with earlier eras (1991–2000) but remained much lower compared with both nonrenal patients (91% lower) and transplanted women (73% lower).11 Encouragingly, a recent systematic review, including 14 studies between 2010 and 2020 of 2364 dialysis-dependent women and 2754 pregnancies, also noted higher pregnancy rates among dialysis-dependent women over the past decade.12
Despite the overall rise of pregnancy rates in dialysis recipients, the likelihood of pregnancy is influenced by ethnicity (higher in non-White women), kidney failure etiology (lowest in diabetes), and dialysis modality.11,13 Studies have repeatedly demonstrated an approximately 50% lower conception rate for PD, compared with hemodialysis recipients.13 The reasons for this discrepancy are unclear but may reflect the effects of hypertonic dialyzate or adhesions from previous peritonitis potentially impairing ovum passage.
Home hemodialysis is associated with positive outcomes, including improved solute clearance, BP control, and quality of life,5 driven by the increase in dialysis time that is possible (even daily). Intensified dialysis is associated with less sex hormone dysregulation14 and, therefore, improved fertility rates. In a small case series, amenorrheic women aged younger than 40 years experienced a return of menses on increasing dialysis duration from 16.5 to 28.5 hours per week.14 Increasing dialysis duration from 12 to 36 hours per week was associated with improved fertility and a conception rate as high as 15.6% in women on nocturnal home dialysis relative to the historically lower rates noted on conventional hemodialysis.15 Therefore, intensive hemodialysis, at home if feasible, remains an important strategy for increasing the likelihood of pregnancy. The effects of intensifying PD prescriptions on fertility, however, remain unknown.
Maternal and Fetal Outcomes in Women with Kidney Failure
Maternal–fetal outcomes in dialyzed women have improved over time. Live birth rates of exceeding 75% have been noted since the 1990s16–18 compared with rates as low as 23% in the 1980s.19 In well-resourced nations, pregnancy outcomes have improved due to better antenatal and perinatal care; optimization of dialysis intensity on the basis of residual renal clearance16,20,21; treatment of maternal comorbidities especially hypertension, diabetes, and anemia; attention to adequate nutrition22; aspirin use for mitigating preeclampsia, and a multidisciplinary team approach.23 Uncontrolled maternal hypertension, which is a critical driver of preterm birth, was almost universal in initial reports from the 1980s.19 By 2010 and beyond, hypertension prevalence improved to 7.7% and preeclampsia to 11.9%, while anemia was encountered in only 3.9% of patients.12 However, preterm birth remains the main complication in all studies at 82.8% (range 50%–100%).12 Other adverse outcomes include intrauterine growth restriction (5.9%) and small for gestational age (SGA; 18.9%), while the rate of polyhydramnios has improved to 17.7% compared with historical rates of 32%,12,24 likely reflecting the impact of the practice change targeting urea by intensifying hemodialysis delivery. However, studies in this systematic review were heavily weighted to women receiving hemodialysis (92.6%) of variable duration (14–43 hours, 2–6 sessions per week), while outcomes for home hemodialysis recipients were not specified.12
The lower incidence of pregnancy on PD12,13,25 has led to a much less robust evidence base, restricted to small case series or individual case reports (Table 1). Although the first reported pregnancy was successful with delivery at 33 weeks of gestation,51 later reports suggested worse outcomes versus hemodialysis recipients with lower fetal survival rates (33.3% versus 78.6%),26 as well as significantly higher rates of SGA (67% versus 31%, P = 0.015) among 574 pregnancies on dialysis (51 pregnancies on PD and 523 on hemodialysis).58 Complications unique to PD include abdominal discomfort, catheter drainage difficulties, polyhydramnios, and bloody dialyzate.27,52 Preterm delivery, premature rupture of membranes, and stillbirth have also been documented to occur secondary to acute peritonitis.59 Nevertheless, successful pregnancy outcomes in women on PD have been reported. Cases using a hybrid of hemodialysis and PD60,61 or initial PD and switch to hemodialysis later in pregnancy62 have also both been described with successful outcomes.
Table 1.
Summary of published cases of peritoneal dialysis in pregnancy
| Era | Papers | Cases | Prescription | Fill Volumes | Live Births, n (%) | Gestational Age, wk, Mean (Range), Live Births Only | Birthweight, g, Mean (SD), Live Births Only | Complications |
|---|---|---|---|---|---|---|---|---|
| Preconception continuous ambulatory PD | ||||||||
| 1983–2018 | 1626–41 | 27 | 3–6 exchanges daily; majority of cases had 4–5 exchanges |
Majority of cases 1.5–2 L Rarely <1.5 L |
19 (70) | 35.2 (27.5–39) | 1602.8 (627.4) | Hemoperitoneum —6 Peritonitis—3 |
| Preconception automated PD | ||||||||
| 1992–2018 | 942–50 | 9 | Majority 8–18 L/daily 1–3 manual daytime exchanges One patient on machine 24 h/d after 30 wk |
Majority of cases 750 ml–2 L Frequently <1.5 L |
9 (100) | 34.2 (32–37) | 1641.6 (432.6) | Catheter displacement—1 Hemoperitoneum—2 Pain—2 Peritonitis—1 |
| PD initiated in pregnancy | ||||||||
| 1983–2012 | 926,31,51–57 | 16 | Commenced at 10–29 wk gestation (mean 17.7 wk) All CAPD; one case then changed to APD 3–6 exchanges daily, majority 4–5 exchanges |
Majority of cases 1.5–2 L One case—1.2 L |
14/16 (87.5) | 34.4 (24-38) Includes one baby born at 24 wk |
1962.0 (697.3) Includes one baby born at 470 g |
Peritonitis—4 Exit site infection—1 |
APD, automated peritoneal dialysis; CAPD, continuous ambulatory peritoneal dialysis; PD, peritoneal dialysis.
Residual Kidney Function, Dialysis Dose, and Pregnancy Outcomes—Rationale for Home Hemodialysis Modalities
Residual kidney function is an important parameter when considering pregnancy management and outcomes. Higher live birth rates have been reported in women starting dialysis after pregnancy compared with established dialysis-dependent women, 80% versus 50% in the Belgian registry63 and 91% versus 63% using the Australia and New Zealand Dialysis and Transplant registry data,21 reflecting the higher eGFR at dialysis commencement due to residual function. Therefore, in women with no residual renal function, intensive dialysis becomes a crucial element for improving pregnancy outcomes, and home-based therapy more readily allows for dialysis intensification. Improvement in birth weight63 and gestational age64 has been observed with intensive dialysis.
The Toronto program first reported six women receiving nocturnal home hemodialysis with higher weekly dialysis time (36±10 hours preconception and 48±5 hours during pregnancy) leading to mean gestational age of 36.2±3 weeks and mean birth weight of 2417.5±657 g.15 Subsequently, the Toronto Pregnancy and Kidney Disease (PreKid) Clinic and Registry (22 pregnancies between 2000 and 2013) was directly compared with the American Registry for Pregnancy in Dialysis (ARPD) cohort (70 pregnancies between 1990 and 2011).16 The Canadian model of care relies largely on home-based nocturnal hemodialysis. Canadian patients received more dialysis (43±6 versus 17±5 h/wk) with higher live birth rates (85.7% for PreKid versus 61.4% for ARPD cohorts, P = 0.038). The improved outcomes were even more pronounced among established dialysis recipients (82% versus 53%, P = 0.028). A dose–response association between dialysis intensity and pregnancy outcomes emerged with live birth rates of 48% in women receiving <20 hours of hemodialysis, 75% with 21–36 hours, and 85% with >36 hours per week (P = 0.027). Furthermore, longer gestational age with a mean of 36 versus 27 weeks (PreKid versus ARPD cohort, respectively; P = 0.002) and higher infant birth weight was noted in the intensively dialyzed women.16 These observations provided much needed evidence promoting a shift to intensive dialysis in women without residual kidney function.
A 2016 meta-analysis of 681 pregnancies in 647 women, which included the Canadian home dialysis cohort, further quantified the relationship between time on dialysis and pregnancy outcomes. Longer weekly dialysis times were clearly associated with lower rates of preterm delivery and SGA babies.58 In most of these studies, however, a facility-based dialysis model was used, which places enormous pressure on already stretched dialysis resources and may even raise ethical questions about resource allocation. This will remain a challenge and potential barrier to optimal care for women in many regions.
Managing Hemodialysis in Pregnancy
Dialysis during pregnancy is an intensive and complex treatment that requires careful counseling, support from a multidisciplinary team including nephrology, high-risk obstetrics (OB), neonatology, nursing, pharmacists, and dietitians along with psychological support. Individualized care is required based on patient health status and literacy, current or preferred dialysis modality, residual kidney function, geographical location, cultural and socioeconomic factors, and patient preferences. Where hemodialysis (facility or home-based) is recommended, accessibility is also dependent on each jurisdictions' availability of infrastructure and resources. In most women, hemodialysis will be the preferred option in pregnancy. Home-based hemodialysis may assist in delivering intensified dialysis but is more feasible in centers that have well-established home dialysis or nocturnal dialysis programs. There are numerous elements to consider when prescribing hemodialysis in pregnancy, but there are no existing clinical trials evaluating hemodialysis regimens and very little evidence beyond case reports in PD; therefore, consensus opinion on the basis of observational evidence drives practice recommendations (Table 2).3,23,65–67
Table 2.
Home dialysis prescription and management recommendations during pregnancy
| Home hemodialysis | |
| • Individualize frequency of clinical review and prescription alteration, at minimum every 1–2 wk • Consider telehealth and remote monitoring opportunities • Consider scheduled in-center treatment to provide respite and to review clinical progress • Increase hemodialysis duration up to 36 hours per week (5–7 sessions/wk) with consideration of residual renal function • Minimum weekly predialysis biochemistry, aim for predialysis urea <12.5–15 mmol/L • New, unrecycled, high biocompatible membranes are recommended • Low blood flow 250–300 ml/min and low efficiency dialysis to support hemodynamic stability • Heparin anticoagulation can be used • Vascular access—use locally and patient preferred access options; catheters are low risk; arteriovenous fistulae can be created and used in pregnancy where there is clinical preference and expertise | |
| Dialyzate composition | |
| Sodium | 137–140 mmol/L |
| Potassium | 2–3 mmol/L |
| Calcium | Increase to 1.5–1.75 mmol/L to avoid hypocalcemia |
| Bicarbonate | 25–35 mmol/L |
| Phosphate | May require addition of phosphate to dialyzate |
| PD | |
| • Individualize frequency of in-person clinical review, at minimum every 2 wk • Consider telehealth and remote monitoring opportunities • Evaluate residual kidney function regularly • Evaluate transport status at the start of pregnancy • Continue predialysis prescription; increase exchanges and maintain fill volumes • Use low glucose dialyzate to maintain low UF and support volume status • Kt/V is not validated in pregnancy. Monitor maternal urea—aim for <12.5–15 mmol/L. Rising urea should precipitate consideration of adding or switching to hemodialysis • Third trimester: monitor for abdominal discomfort and adjust dwell volumes; consider tidal exchanges (85% volume) for abdominal discomfort | |
| Nutrition | |
| • Specialist nutritional input and monitoring • Maintain protein intake and caloric support • Multivitamin supplementation for water soluble vitamins | |
| BP and fluid management | |
| • UF should be cautiously individualized to avoid hemodynamic instability. Aim to increase dry weight by 300–500 mg weekly in second and third trimesters • Target BP of 120/70–140/90 mmHg with cautious titration of dry weight accordingly and avoidance of hypotensive episodes • Use standard locally pregnancy-safe antihypertensives according to local practice and availability • Angiotensin converting enzyme inhibitors and angiotensin 2 receptor antagonists should be discontinued if actively trying to conceive or stopped at conception in unplanned pregnancies | |
| Calcium and phosphate levels | |
| • Encourage increased dietary phosphate, given increased frequency of dialysis • Oral or dialyzate Phosphate supplementation may be required • Non–calcium-based phosphate binders should be discontinued in pregnancy • 1,25 dihydroxyvitamin D (calcitriol) is recommended if vitamin deficiency or primary hyperparathyroidism is present | |
| Anemia management | |
| • Aim for hemoglobin target 100–110 mg/L and hematocrit 30%–35%; increase ESA dose accordingly. Typically, a minimum increase of 50% of usual ESA dose will be required • Maintain transferrin saturation above 20% with oral and/or IV iron supplementation • Consider the impact of blood transfusion on future transplantation/HLA sensitization | |
| Obstetrical care | |
| • Beware potential for false positive first trimester screening for Down's syndrome • Commence low dose aspirin (100–150 mg daily) from 10 to 14 wk • US assessment for cervical incompetence and cerclage if needed • Comprehensive anatomy scan (18–20 wk) • Regular measurements of growth • Placental ultrasound to assess placental length, thickness, and placental cord insertion along with uterine and umbilical artery Doppler's to quantify pulsatility indices (∼22 wk) • Assessment for superimposed preeclampsia should be considered with new or progressive hypertension >140/90 mm Hg or further organ involvement • Measure PlGF and/or (sFlt-1) to PlGF ratio as tool for preeclampsia diagnosis between 24 and 36 wk gestation, where available • NICU consultation • Mg sulfate—consider lower doses with close follow-up of levels • Fetal monitoring during dialysis is not usually required and the utility should be carefully considered as it may cause undue iatrogenic delivery | |
Table 2 recommendations have been drawn from expert experience and published best practice recommendations and clinical practice guidelines.3,23,65–67 ESA, erythrocyte stimulating agent; NICU, neonatal intensive care unit; PD, peritoneal dialysis; PlGF, placental growth factor; sFlt-1, soluble fms-like tyrosine kinase 1; UF, ultrafiltration.
Dialysis regimens should focus on maintaining the maternal circulating volume required for pregnancy with the ultrafiltration (UF) prescription adapted as pregnancy progresses.68 Maternal residual function, weight gain, and blood volume expansion should be re-evaluated regularly to avoid detrimental placental blood flow disruption from hypotension.68 In home dialysis patients, daily remote nursing check-ins are often required to guide machine set-up of a daily UF target.
Dialysis vascular access choice is driven largely by local practices and patient preference. Arteriovenous fistulas have been successfully created in pregnancy and may minimize dialysis catheter use, although catheter-related complications are also very uncommon.69 Anticoagulation with either unfractionated heparin or low-molecular-weight heparin is deemed safe and can be used to maintain dialysis circuit patency.
Pregnant women receiving dialysis require increased caloric support of an estimated 35 kcal/kg in addition to standard pregnancy caloric requirements for each trimester.70 An increase in protein intake of 1.2–1.8 g/kg per day of pregestational weight is also recommended.70 Folic acid (1 mg/d) and water soluble vitamins are required from the first trimester. Supplementation of potassium, calcium, and phosphate may be required with intensive dialysis.
Anemia is common in pregnant women on hemodialysis, and iron deficiency is linked to increased perinatal mortality; therefore, all women should receive iron supplementation (oral or parental). Pregnancy is a state of relative erythropoietin resistance, requiring an average 50% increase in erythropoietin-stimulating agents to achieve a target hemoglobin of 110 g/L.68
PD Prescription in Pregnancy
Women already receiving PD may be supported to remain on PD particularly in the first and second trimesters. If there is a strong patient desire, geographical or social need for home-based therapy and good residual function, PD can be continued throughout pregnancy. In health care settings where hemodialysis capacity is significantly constrained, cost and capacity considerations may influence the choice of PD over hemodialysis. In women commencing dialysis during pregnancy, PD has been rarely used but does remain an option (Table 1).
PD in pregnancy has the potential advantage of increased hemodynamic stability compared with hemodialysis, with daily UF, stable metabolic milieu, and prolonged preservation of residual renal function.61,71,72 Maintenance of residual renal function is pivotal to uremic clearance and in turn favorable to pregnancy outcomes. However, progressive loss of peritoneal space and mechanical catheter pressure from an enlarging uterus through pregnancy can cause inadequate surface area for exchanges, leading to dialysis inadequacy and further complications.71 As such, a major management focus for women receiving PD in pregnancy is how long during pregnancy PD can be maintained before performing hybrid treatment or switching fully to hemodialysis.60–62 In most published cases reports, switching from PD to hemodialysis is due to urea rise or difficulty tolerating large volumes.
Decreased dialysis clearance can be overcome with increased exchanges and reduced dwell volumes, particularly in the third trimester.72 In continuous ambulatory PD, the frequency of exchanges can be increased (4–6 exchanges), while maintaining volume at 1.5–2 L per exchange.67,71 Similar strategies can be applied for automated PD, with prescription tailored to increase total time, total volume, and cycles with smaller dwell volumes.42,67,71 Tidal regimes with automated PD can also be used to alleviate the third trimester concerns of slower drain times and pain.42,67 The traditional markers of Kt/V and peritoneal creatinine clearance have not been formally validated in pregnancy.67 Several recent case reports have achieved a Kt/V of 1.9–5; however, residual renal function is also an important contributor to clearance.28,60,71
Our recommended approach to PD in pregnancy is also presented in Table 2. We support an individualized approach to optimize efficiency on the basis of close and routine assessment of fluid status, residual renal function, and accumulation of uremic metabolites with similar considerations for the management of electrolyte abnormalities, nutrition, and anemia, as required in hemodialysis. A predialysis urea of 12–15 mmol/L is a proposed target extrapolated from hemodialysis practice recommendations.66
Obstetrical Management
Close collaboration with OB, Maternal Fetal Medicine, and Neonatology is essential as most babies will require care in the neonatal intensive care unit. Although most of the women we care for on home-based modalities can be managed in their community, travel for specialized OB care is required.
The first trimester screens for Down syndrome and trisomy 18 involve measurement of maternal serum beta human chorionic gonadotropin, maternal serum pregnancy-associated plasma protein-A, and an ultrasound measurement of nuchal translucency between 9 and 13 weeks of gestation. Both serum markers can be elevated in dialysis patients; beta human chorionic gonadotropin is inversely correlated with creatinine clearance.73 Pregnancy-associated plasma protein-A levels can be augmented by the intravenous administration of heparin.74 As a result, positive screens occur, requiring fetal chromosomal analysis (karyotyping) by chorionic villus sampling or amniocentesis. Fetal cell-free DNA may be a noninvasive option, but presently, there are no data to guide its use in this population. A comprehensive anatomy scan between 18 and 20 weeks further screens for anomalies.
Increased rates of cervical insufficiency have been documented in patients on intensified hemodialysis regimens, requiring frequent ultrasound surveillance to determine need for a cerclage.16 Weekly ultrasounds after 26 weeks of gestation are recommended to follow fetal wellbeing and estimated weight as well as amniotic fluid levels. A decreased amniotic fluid index may indicate overaggressive UF, requiring readjustment of the target weight. Conversely, an increased amniotic fluid index or polyhydramnios may demand increased UF or assessment of dialysis efficiency to target lower predialysis urea levels.
A placental ultrasound to assess placental length, thickness, and placental cord insertion along with uterine and umbilical artery Doppler's to quantify pulsatility indices is performed in some centers after 22 weeks of gestation and then every other week. Abnormal pulsatility indices along with fetal growth restriction can point toward the development of preeclampsia. More recently, placental biomarkers, including the soluble fms-like tyrosine kinase 1 to placental growth factor ratio, have been used to help diagnose preeclampsia.75,76,77 Although there are no data specific to the kidney failure population, low-dose aspirin is typically prescribed for preeclampsia prevention.78 Since preeclampsia is common, magnesium sulfate may be used for fetal or maternal neuroprotection. As it is excreted by the kidneys, dose reductions and close monitoring are required to prevent toxicity.
Advantages and Challenges of Delivering Home Hemodialysis and PD in Pregnant Women
Home-based therapies are less commonly used in the care of pregnant dialysis recipients but have distinct advantages. Intensified home hemodialysis is a well-established tool for improving fertility and pregnancy outcomes. Furthermore, it can allow women autonomy in their care, especially for women living remote from incenter units. Although training women for a home-based therapy ahead of or during pregnancy has challenges, it is certainly achievable for select women.
The adoption of home-based dialysis during pregnancy may be hindered by lack of clinician confidence and experience, patient concerns about the complexity of self-management, concerns about clinical stability, and preference to manage women in dialysis units with greater clinical oversight. Common challenges of both PD and home hemodialysis include technical factors (managing dialysis access, including self-cannulation and machine set-up), center-related factors (the availability of home programs and quality of training) and patient-related factors (health literacy, confidence, and coping).79
The future development of home-based dialysis as an option in pregnancy requires leadership from clinician champions, development of comprehensive home dialysis training programs, delivery of timely and individualized assessment and planning for pregnancy, creation of patient and clinician peer support networks, and enhancement of obstetric nephrology training in the core nephrology curriculum. Many of the challenges discussed in this issue are highlighted in our patient's perspective (Figure 1). Ultimately, modality choice is an individualized decision, but we encourage clinicians to consider the option of home-based therapy rather than a default to facility-based hemodialysis.
Patient Perspective
I am Frieda, have been on this earth since the Winter of 86, I have four amazing children, my youngest being the child I carried to 34 weeks and 2 days while on home hemodialysis. I have been diabetic since my first child in 2001, who is now 22 years. All my children were preemies.
Before my pregnancy, I was waiting for a dialysis spot close to my home which I was told could be up to 2 years. So when I found out I was pregnant, I was already living far away from my family for about 5 months, which was hard because they were my support system. I spend a lot of days and nights depressed and crying.
When I became pregnant, I was not sure if that was something that I really wanted because “I am already so sick.” I did not want to feel alone in the pregnancy with my family so far away. I really did not have a plan of action or feel excited to hear the news. I asked my local team (doctors, nurses) what I should do? Not one of them said I should have an abortion and they really did not have answers for me. My husband also did not know what to do so I told my husband “We will let god our creator decide for us” because I had a history of miscarriages (10+ before I was diagnosed with kidney failure).
But with no abortion or indication of a miscarriage happening, I was quickly switched to 6 hours every day on hemodialysis in Thunder Bay, which is 6 hours from my home. A few weeks later, an offer for home hemodialysis fell onto my lap and quickly took it because “you will be home sooner” just had an amazing ring to it. I instantly felt happier, my soul brightened up, and I was smiling again.
My family came to Thunder Bay where we lived in a 1-bedroom apartment (four of us), my husband (Devin) and my two daughters Anya (12 years) and Danielle (5 years). We made do, and it was great knowing we would be able to go home soon. My husband came with me every day to home dialysis training, where he was amazing at setting up the machine, changing my bandages, sitting with me for 6 hours, and diagnosing a problem when it occurred. I really do owe him my life. We trained for about 10 weeks with an amazing home dialysis nursing crew. I believe it was almost the end of May when we were able to go home. The machine was set-up and waiting for us when we arrived, where I continued to do dialysis for 6 hours every day.
It was amazing being home with my family. The only downfall was being hooked up to a machine for 6 hours during the day. My husband being my biggest supporter asked my Toronto team about doing home dialysis twice a day for 3 hours each time, to which there were no objections. My husband and I traveled to Toronto from Thunder Bay by plane twice, which was exhausting and a 30-hour car ride from home. As we were settled back at home, our Toronto visits had to continue, so we would have to drive to Winnipeg to fly to Toronto.
As much as I would love to say that this pregnancy was an easy one, it was not. I was exhausted. During the pregnancy, I had doubts. I worried that my baby would be stillborn, die shortly after birth, or have some sort of disability. I also had a lot of “should have could have” about going through with the abortion, giving up. That is my only regret as I write this “how could I even thought about it?”
All that suffering, crying, negative thoughts, and feelings disappeared once our little girl was brought into this world. We named her after her father Devin, she is also Devyn. She needed assistance after birth: continuous positive airway pressure, ultraviolet light for 24 hours, feeding tube for about 14 days, and spending 18 days in neonatal intensive care unit, but little Devyn did amazing. I believe she was also determined to go home.
This is not just “my story,” but also my husband's, who I praise a lot to others because if it were not for him and his determination and dedication our little daughter would not have been here. I know I would not have been able to do all this on my own, and home hemodialysis brought me home faster to the support of my family.
Footnotes
S.J. and M.A.H. contributed equally as senior supervising authors.
Disclosures
M.A. Hladunewich, funding from Roche to study Biomarkers of Preeclampsia. M.A. Hladunewich reports Research Funding: Calliditas Therapeutics, Chinook Pharmaceuticals, Ionis, and Pfizer; Honoraria: UpToDate; and Other Interests or Relationships: Medical Lead for Glomerular Disease Ontario Renal Network. N. Tangirala is supported by a Higher Degree Research Scholarship from the Women's and Childrens's Hospital Research Foundation, Adelaide, Australia. All remaining authors have nothing to disclose.
Funding
None.
Author Contributions
Conceptualization: Ghada Ankawi, Michelle A. Hladunewich, Shilpanjali Jesudason, Nishanta Tangirala.
Resources: Michelle A. Hladunewich.
Supervision: Michelle A. Hladunewich, Shilpanjali Jesudason.
Writing – original draft: Ghada Ankawi, Michelle A. Hladunewich, Shilpanjali Jesudason, Nishanta Tangirala.
Writing – review & editing: Ghada Ankawi, Michelle A. Hladunewich, Shilpanjali Jesudason.
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