List For Transplantation Research Articles

Association Between Dialysis Facility Ownership and Access to the Waiting List and Transplant in Pediatric Patients With End-stage Kidney Disease in the US

Care of adults at profit vs nonprofit dialysis facilities has been associated with lower access to transplant. Whether profit status is associated with transplant access for pediatric patients with end-stage kidney disease is unknown. To determine whether profit status of dialysis facilities is associated with placement on the kidney transplant waiting list or receipt of kidney transplant among pediatric patients receiving maintenance dialysis. This retrospective cohort study reviewed the US Renal Data System records of 13 333 patients younger than 18 years who started dialysis from 2000 through 2018 in US dialysis facilities (followed up through June 30, 2019). Time-updated profit status of dialysis facilities. Cox models, adjusted for clinical and demographic factors, were used to examine time to wait-listing and receipt of kidney transplant by profit status of dialysis facilities. A total of 13 333 pediatric patients who started receiving maintenance dialysis were included in the analysis (median age, 12 years [IQR, 3-15 years]; 6054 females [45%]; 3321 non-Hispanic Black patients [25%]; 3695 Hispanic patients [28%]). During a median follow-up of 0.87 years (IQR, 0.39-1.85 years), the incidence of wait-listing was lower at profit facilities than at nonprofit facilities, 36.2 vs 49.8 per 100 person-years, respectively (absolute risk difference, -13.6 (95% CI, -15.4 to -11.8 per 100 person-years; adjusted hazard ratio [HR] for wait-listing at profit vs nonprofit facilities, 0.79; 95% CI, 0.75-0.83). During a median follow-up of 1.52 years (IQR, 0.75-2.87 years), the incidence of kidney transplant (living or deceased donor) was also lower at profit facilities than at nonprofit facilities, 21.5 vs 31.3 per 100 person-years, respectively; absolute risk difference, -9.8 (95% CI, -10.9 to -8.6 per 100 person-years) adjusted HR for kidney transplant at profit vs nonprofit facilities, 0.71 (95% CI, 0.67-0.74). Among a cohort of pediatric patients receiving dialysis in the US from 2000 through 2018, profit facility status was associated with longer time to wait-listing and longer time to kidney transplant.

Vaccination, Transplantation, and a Social Contract.

Vaccination, Transplantation, and a Social Contract.

How Should Deceased Donor Organs Be Allocated? The Patient's Perspective Derived from Semi-Structured Interviews.

PurposeThe gap between the supply and demand for deceased donor organs is increasing worldwide, while patients on waiting lists for organ transplantation die. This situation requires ethical donor organ allocation rules. The patients’ perspective on donor organ allocation rules offers a highly relevant and unique perspective that may differ from the perspectives of physicians and the general public.Patients and MethodsSemi-structured telephone interviews were conducted with the regional group coordinators of the federal self-help organization for organ transplanted patients and their relatives in Germany in early 2021. Twelve interviews were conducted with patients and relatives of transplantation patients who received transplants for the affected organs including the lungs, heart, kidney, and liver. Transcripts were analyzed using the deductive framework method which was based on an earlier study. All criteria were reported following the COREQ statement.ResultsParticipants emphasized aspects of “medical urgency” and “effectiveness/benefit” of transplantation and associated trade-offs as well as the recipient’s responsibility for organ failure (“own fault”), the appreciation for the gifted graft and the patient’s capability of taking care of it (“appreciation/responsibility”). Patients acknowledged that urgent patients should be prioritized and they showed a clear preference toward allocation rules that strive to maximize both the life years and quality of life gained by transplantation.ConclusionThe patients’ perspective is unique in that patients agree on certain rules for allocation and share many preferences, but also have a hard time finding clear cutoff points when considering selecting a participant for allocation. Patient representatives should therefore be consulted in the debate on donor organ allocation rules.

Overcoming challenges in patient selection and monitoring in combined heart and kidney transplantation.

Combined heart-kidney transplantation (HKT) is a growing therapeutic strategy in patients with advanced heart failure (HF) and concomitant chronic kidney disease (CKD). Although patients with advanced HF and need for chronic haemodialysis have a clear indication for combined HKT, challenges to current practice lie in identifying those patients with severely depressed kidney function, which will not recover kidney function after restoration of appropriate haemodynamic conditions following heart transplantation (HT) alone. Because of the paucity of available organs, maximisation of kidney graft utility whilst minimising the operative risks associated with combined transplantation is mandatory. The benefits of HKT go beyond the mere restoration of kidney function. Data from registry analysis show that HKT improves overall survival in patients with CKD, as compared to heart transplant only, and it is associated with reduced incidence of heart allograft rejection, likely through the promotion of host immune tolerance mechanisms. In patients not requiring chronic dialysis, kidney-after-heart strategy may be explored, instead of combined HKT, in particular when the aetiology of CKD is unclear. This indeed allows for monitoring and gaging of indications for combined transplantation in the postoperative period. This approach however should be matched with priority listing for kidney transplantation given the high waitlist mortality in heart transplant recipients with associated CKD. The use of kidney machine perfusion may represent an additional tool to optimise the outcome of HKT, allowing more time to stabilise the patient after HT surgery.

Management of Acute Liver Failure: Update 2022.

Abbreviated pathogenesis and clinical course of the acute liver failure syndrome. The pathogenesis and clinical course of the syndrome of acute liver failure (ALF) differs depending upon the etiology of the primary liver injury. In turn, the severity of the liver injury and resulting synthetic failure is often the primary determinant of whether a patient is referred for emergency liver transplantation. Injuries by viral etiologies trigger the innate immune system via pathogen-associated molecular patterns (PAMPs), while toxin-induced (and presumably ischemia-induced) injuries do so via damage-associated molecular patterns (DAMPs). The course of the clinical syndrome further depends upon the relative intensity and composition of cytokine release, resulting in an early proinflammatory phenotype (SIRS) and later compensatory anti-inflammatory response phenotype (CARS). The outcomes of overwhelming immune activation are the systemic (extrahepatic) features of ALF (cardiovascular collapse, cerebral edema, acute kidney injury, respiratory failure, sepsis) which ultimately determine the likelihood of death.Acute liver failure (ALF) continues to carry a high risk of mortality or the need for transplantation despite recent improvements in overall outcomes over the past two decades. Optimal management begins with identifying that liver failure is indeed present and its etiology, since outcomes and the need for transplantation vary widely across the different etiologies. Most causes of ALF can be divided into hyperacute (ischemia and acetaminophen) and subacute types (other etiologies), based on time of evolution of signs and symptoms of liver failure; the former evolve in 3 to 4 days and the latter typically in 2 to 4 weeks. Both involve intense release of cytokines and hepatocellular contents into the circulation with multiorgan effects/consequences.Management involves optimizing fluid balance and cardiovascular support, including the use of continuous renal replacement therapy, vasopressors, and pulmonary ventilation. Early evaluation for liver transplantation is advised particularly for acetaminophen toxicity, which evolves so rapidly that delay is likely to lead to death.Vasopressor support, high-grade hepatic encephalopathy, and unfavorable (subacute) etiologies heighten the need for urgent listing for liver transplantation. Prognostic scores such as Kings Criteria, Model for End-Stage Liver Disease, and the Acute Liver Failure Group prognostic index take these features into account and provide reasonable but imperfect predictive accuracy. Future treatments may include liver support devices and/or agents that improve hepatocyte regeneration.

Liver transplantation in patients with acute-on-chronic liver failure.

Acute-on-chronic liver failure (ACLF) is a dynamic syndrome associated with a very high short-term mortality. Hence, the ongoing assessment of treatment response, an expedited liver transplant evaluation and listing, and the determination of futility of treatment are critical for optimal outcomes. In this review, we appraise our current understanding of the timing and futility of liver transplantation, and the short- and long-term outcomes including the quality of life after deceased or live donor liver transplantation in those with ACLF.

Cardiac risk factors limiting survival to liver transplantation in patients with nonalcoholic fatty liver disease.

BACKGROUNDNonalcoholic fatty liver disease (NAFLD) describes the hepatic manifestations of metabolic syndrome, which is estimated to affect 25% of adults, and currently represents the second most common indication for liver transplant in the United States. Studies have shown that patients with NAFLD are at an increased risk for heart failure, arrhythmia, and coronary artery disease (CAD), which may impact outcomes of liver transplantation. However, it remains unclear whether the presence of cardiac disease affects survival prior to liver transplant. If so, this would represent an important opportunity to optimize cardiac status and improve outcomes before liver transplant.AIMTo identify cardiac factors that impact survival to liver transplantation in patients with NAFLD and on the transplant waitlist.METHODSThe aim of this study was to identify cardiac risk factors that limit survival to transplant in patients with NAFLD. We performed a retrospective analysis of patients with NAFLD listed for liver transplant at a tertiary academic medical center in the United States from January 2015 to January 2021, identified through United Network of Organ Sharing registry. Exclusion criteria included a concurrent etiology of liver disease and removal from the transplant list due to chemical dependency, lack of social support, improvement in liver disease, or being lost to follow-up. We manually reviewed patient charts including electrocardiogram, echocardiogram, and cardiac catheterization reports as well as physician notes to identify cardiac disease states (i.e., heart failure, arrhythmia, valvular disease and CAD) and other related diagnoses. We performed a survival analysis by Cox proportional hazards regression model to analyze the association between cardiac factors at the time listed for transplant and death or clinical deterioration prior to transplant.RESULTSBetween January 2015 and January 2021, 265 patients with nonalcoholic fatty liver disease were listed for liver transplant at our institution. Our patient sample had a median age of 63 and an even distribution between sexes. The median Model for End-Stage Liver Disease (MELD) score was 17 and the median body mass index was 31.6. Of these 265 patients, 197 (74.3%) survived to transplant and 68 (25.7%) died or clinically deteriorated prior to transplant. The presence of mild or moderate CAD represented a hazard ratio of 2.013 (95%CI 1.078-3.759, P = 0.029) for death or clinical deterioration when compared to patients without CAD, after adjustment for age, sex, and MELD. MELD represented an adjusted hazard ratio of 1.188. CONCLUSIONMild or moderate CAD represents a hazard for waitlist mortality prior to liver transplant in patients with NAFLD. Aggressive management of CAD may be needed to improve patient outcomes.

The unfinished journey toward transplant equity: an analysis of racial/ethnic disparities for children after the implementation of the Kidney Allocation System in 2014.

Disparities in pediatric kidney transplantation (KT) result in reduced access and worse outcomes for minority children. We assessed the impact of recent systems changes on these disparities. This is a retrospective cohort study of pediatric patients utilizing data from the US Renal Data System (n = 7547) and Scientific Registry of Transplant Recipients (n = 6567 waitlisted and n = 6848 transplanted patients). We compared access to transplantation, time to deceased donor kidney transplant (DDKT), and allograft failure (ACGF) in the 5years preceding implementation of the Kidney Allocation System (KAS) to the 5years post-KAS implementation 2010-2014 vs. 2015-2019, respectively. Compared to the pre-KAS era, post-KAS candidates were more likely to be pre-emptively listed (26.8% vs. 38.1%, p < 0.001), pre-emptively transplanted (23.8% vs. 28.0%, p < 0.001), and less likely to have private insurance (35.6% vs. 32.3%, p = 0.01), but these were not uniform across racial groups. Compared to white children, Black and Hispanic children had a lower likelihood of transplant listing within 2years of first dialysis service (aHR 0.590.670.76 and 0.730.820.92, respectively) in the post-KAS era. Time to DDKT was comparable across all racial groups in the post-KAS era. Compared to white children, Black DDKT recipients have more 5-year ACGF (aHR 1.001.432.06 p = 0.05) while there was no difference in 3- or 5-year ACGF among LDKT recipients. After KAS implementation, there is equity in time to DDKT. Pre-KAS increased hazard of ACGF among Black children has decreased in the post-KAS era; however, persistent disparities exist in time to transplant listing among Black and Hispanic children when compared to white children. A higher resolution version of the Graphical abstract is available as Supplementary information.

Disparities in Social Determinants of Health Among Patients Receiving Liver Transplant: Analysis of the National Inpatient Sample From 2016 to 2019.

BackgroundLiver transplantation is the life-saving standard of care for those with end-stage liver disease. Unfortunately, many patients on the liver transplant list die waiting. Several studies have demonstrated significant differences based on disparities in race, gender, and multiple socioeconomic factors. We sought to evaluate recent disparities among patients receiving liver transplants using the latest available data from the National Inpatient Sample (NIS), the largest publicly available inpatient care database in the United States.MethodsWe performed an analysis of discharge data from the NIS between 2016 and 2019. We identified adult patients with chronic liver disease who underwent a liver transplant using the International Classification of Diseases, 10th revision (ICD-10) codes. Multivariate logistic regression was used to adjust for differences in race, gender, socioeconomic status, and comorbidities among those who received a liver transplant.ResultsA total of 24,595 liver transplants were performed over the study period. Female gender was independently associated with decreased transplant rates (adjusted odds ratio (AOR) 0.83, 95% confidence interval (CI), 0.78-0.89, P < 0.001). Compared to White patients, Black patients had decreased transplant rates (AOR 0.86, 95% CI, 0.75-0.99, P = 0.034), as did Native Americans (AOR 0.64; 95% CI, 0.42-0.97, P = 0.035). Hispanics and Asian Americans had increased rates of liver transplantation (AOR 1.16, 95% CI 1.02-1.32, P = 0.022, and 1.36, 95% CI 1.11-1.67, P = 0.003; respectively). The increase in income quartile was associated with an incremental increase in transplant rates. Additionally, patients with private insurance had much higher transplant rates compared to those with Medicare (AOR 2.50, 95% CI 2.31-2.70, P < 0.001) while patients without insurance had the lowest rates of transplantation (AOR 0.18, 95% CI 0.12-0.28, P < 0.001).ConclusionsOur analysis demonstrates that race, gender, and other social determinants of health have significant impacts on the likelihood of receiving a liver transplant. Our study, on a national level, confirms previously described disparities in receiving liver transplantation. Patient-level studies are needed to better understand how these variables translate into differing liver transplantation rates.

First CARMAT implantation in Italy: A Nurse's Experience

Abstract Funding Acknowledgements Type of funding sources: None. Main funding source(s): Anyone Introduction CARMAT is a new fully implantable device that simulates heart function. CARMAT has three characteristics that allow a physiological simulation that is at the top of biomedical engineering: it is blood-compatible for the use of bovine pericardium; it is pulsatile because it has hydraulic pumps that mimic systole and diastole; it is capable of self-regulating with the physiological needs of the patient. CARMAT has four biological valves that allow the intake of acetylsalicylic acid avoiding the use of warfarin and continuous blood draw. CARMAT also has two hybrid membranes with an internal part formed by bovine pericardium and an external polyurethane membrane; CARMAT has self-regulation sensors that adapt the system to the patient's efforts. The operation is relatively simple because the rollers placed inside move the silicondressingstely and so it pushes the walls creating systole and diastole not synchronously as it normally happens but asynchronously, one ventricle at a time. Objectives Evaluation of the patient's hemodynamics, monitoring of vital parameters, dressings of the drive-line and psychological state. Materials and methods Training in the field by the manufacturer due to the absence of material in literature. Outcome and Discussion Since it was the first CARMAT implantation in Italy , we tried to combine experience with the clinical practice of other artificial hearts. The patient was weaned from anesthesia early and extubated; the patient did not show neurological damage. Psychologically, the artificial heart was accepted without any problems by the patient, the drive line had no infections and the patient was discharged quickly. Conclusions The Carmat system appears to be the one that best simulates the physiology of the heart because it involves fewer complications than other artificial hearts. This device is used as a brige to transplant, but research and continuous studies tend to transform it as a therapy to end for patients who leave the transplant list and therefore the possibility of having a heart transplant.

Heart Transplant Indications, Considerations, and Outcomes in Fontan Patients: Age-Related Nuances, Transplant Listing, and Disease-Specific Indications.

In the current era, 5%-10% of Fontan patients die or need a transplant in childhood, and approximately 50% will experience the same fate by age 40 years. Heart transplant (HTx) can be successful for selected children and adults with Fontan circulatory failure of any mechanism, with a 1-year post-transplant survival rate approaching 90% in children and 80% in the largest single-centre adult Fontan HTx experience. Protein-losing enteropathy and plastic bronchitis can be expected to resolve post-transplant, and limited data suggest patients with Fontan-associated liver disease who survive HTx can expect improvement in liver health. Early Fontan failure, within 12 months of Fontan completion, is not easily rescued by HTx, and late referrals and failure to refer adult patients remain problematic. Very little is known about the numbers of patients who are not referred, are turned down following assessment for HTx, or die on the waiting list-numbers that are needed to understand the complete picture of HTx in the Fontan population and to identify where best to focus quality-improvement efforts. Recent revisions to listing prioritization in Canada with considerations specific to the Fontan population aim to mitigate the fact that the status-listing criteria are not tailored to the congenital heart population. Transplanting high-risk children prior to Fontan completion, developing adult congenital heart disease transplant centres with expertise that can also offer combined heart-liver transplant when appropriate, and improving single-ventricle mechanical support options and criteria for both adults and children may help mitigate the early post-listing mortality.

Mortality risk factors in patients on waiting list for lung transplantation between 2005 and 2018: A single institutional experience

Lung transplantation is a therapeutic option for patients with end-stage lung disease. However, the increase in organ demand has surpassed the number of donors, with many patients unable to outlive the long waiting period. This study aimed to assess mortality and its risk factors in patients on the waiting list for lung transplantation in a single medical centre. All evaluated clinical and laboratory data of the patients with end-stage lung disease assessed for lung transplantation between February 2005 and November 2018 in National Taiwan University Hospital were recorded in the waiting list database. The patients in this study were divided into two groups: survival and death groups. Between February 2005 and November 2018, 169 patients were enrolled in the waiting list. Thirty-one patients were alive and waiting for the chance of lung transplantation, 56 underwent lung transplantation, and 82 died while waiting. The mean age of all patients was 43.7 years, and 91 were women. The mean body mass index (BMI) was 20.3. The most common blood type was type O. All patients were in New York Heart Association (NYHA) class III or IV. After analysis of the two groups, lower BMI presented as a mortality factor. This is the first Taiwanese study to describe the mortality factors in patients waiting for lung transplantation. The main factors influencing the survival of these patients were lower BMI, NYHA class IV, and diseases which cause end-stage lung diseases (infection and pulmonary fibrosis).

Is the Organ Care System (OCS) Still the First Choice With Emerging New Strategies for Donation After Circulatory Death (DCD) in Heart Transplant?

The scarcity of donor hearts continues to be a challenge in transplants for advanced heart failure patients. With an increasing number of patients on the waiting list for a heart transplant, the discrepancy in the number between donors and recipients is gradually increasing and poses a new challenge that plagues the healthcare systems when it comes to the heart. Several technologies have been developed to expand the donor pool in recent years. One such method is the organ care system (OCS). The standard method of organ preservation is the static cold storage (SCS) method which allows up to four hours of safe preservation of the heart. However, beyond four hours of cold ischemia, the incidence of primary graft dysfunction increases significantly. OCS keeps the heart perfused close to the physiological state beyond the four hours with superior results, which allows us to travel further and longer distances, leading to expansion in the donor pool. In this review, we discuss the OCS system, its advantages, and shortcomings.

Revisiting the Relationship between Altruism and Organ Donation: Insights from Israel.

The number of people on the waiting list for an organ transplant increases year after year. However, the number of donated organs available for transplantation does not rise in line with this increased demand. This study examines the associations between altruism, attitudes towards organ donation, and behavioral intentions regarding organ donation within the Jewish population in Israel. In a cross-sectional study, 452 participants completed an online questionnaire. Data collection occurred between November and December 2020. Convenience sampling was used, and participation was voluntary. Data were analyzed using Pearson correlations and independent samples t-tests. Within the study population, we found high levels of altruistic behaviors and positive attitudes toward organ donation. However, the level of behavioral intentions toward organ donation was low. No associations were found between altruism levels and attitudes toward organ donation, or between altruism levels and the degree of behavioral intentions toward organ donation. However, a positive relationship was found between attitudes toward organ donation and willingness to sign an organ donor card. In addition, positive associations were found between religiosity and altruism, while negative associations were found between religiosity and attitudes towards organ donation, and between religiosity and willingness to sign an organ donor card. Positive attitudes toward organ donation may result in increased organ donation in the future. Thus, raising awareness and positive attitudes toward organ donation among the wider public and, in particular, the ultra-Orthodox population in Israel in particular is necessary. Consequently, it is essential that information about the organ donation process is accessible and culturally adaptive to different sectors.

Validation of New York/California Score in the Preoperative Period of Liver Transplant for Hepatocellular Carcinoma at University of Campinas's Hospital

Liver transplant is the main treatment for hepatocellular carcinoma and there is currently an important demand from patients waiting in transplant queues. Thus, it is extremely important to improve the criteria for selecting patients who will undergo transplant to mitigate graft loss and reduce cases of recurrence. Thus, it becomes necessary to use models, such as the New York/California (NYCA), that include alpha fetoprotein as a marker of recurrence and prognosis. The aim of this study was to assess whether the NYCA score correlated with the presence of tumor recurrence after transplant in patients undergoing orthotopic liver transplant at the Clinics Hospital of the University of Campinas. We had 214 patients undergoing liver transplant who met the inclusion Milan criteria. The age of the patients ranged from 34 to 77 years, with a median age of 61 years. The mean waiting time on the transplant list was 6.12 months. After calculating the NYCA score, it was possible to stratify 13 patients (6.1%) as high risk, 64 patients (29.9%) as medium risk, and 137 patients (64%) as low risk. Patients with recurrence had higher scores with a mean of 4 points in relapse and 2 points in the absence of relapse (P=.0011). Patients with recurrence had statistically higher high- and medium-risk scores (P=.0010). Therefore, the NYCA score was higher in patients with recurrence. Therefore, in this study, our findings suggest the possibility of using the NYCA score as an aid to detect patients with a higher risk of tumor recurrence.

My Journey Through a Kidney Transplant Procedure.

My Journey Through a Kidney Transplant Procedure James Moran Polycystic Kidney Disease is hereditary. My grandmother died at home before dialysis was readily available. My mother, uncle, and great aunt all had dialysis treatments for extended periods of time and eventually died. My uncle was most fortunate in that he had a heart attack while on dialysis. My mother and great aunt suffered through the disease before it consumed them. The magic age for adult onset PKD requiring dialysis is in the early fifties. First diagnosed at age 25, I watched my creatinine levels increase over the years and knew what awaited me. I was 52 when my nephrologist said it was time for me to have the surgical procedure to attach a vein to an artery in my left arm. This arteriovenous fistula is the access point for dialysis. He said that I would probably need dialysis within about three months. It was about one year more before I really needed it. Even though it was an eventuality we had expected for over 25 years, my wife said: “I thought we had more time.” I considered myself fortunate to have dialysis available and so close. The center was about ten minutes from my house. The 5:30 AM appointment time was not my first choice, but it did enable me to continue working and still have evenings at home with my family. The initial few months are called the “honeymoon” period. Things were going well, I was tolerating the treatments, and I felt better. Why would I need a transplant? I attended a pre-transplant session at a hospital at my wife’s insistence. I really had reservations about the process. Except for the out-patient AV fistula surgery, I had not been “under the knife” and never had a hospital stay. A pre-transplant session at a different hospital was even more graphic and made me less enthusiastic. Eventually, dialysis became more difficult and I felt more fatigued. It was more disruptive and vacations always created scheduling issues. Both hospitals as well as the dialysis team, encouraged me to look for a live donor. They suggested that I contact family members and friends to tell them I was in need of a kidney donor. My oldest son who was 21 at the time offered immediately without being asked. Personally, I felt reluctant to put someone else at risk for me even though they assured me that the donor would remain safe and my outcome would be better. I reluctantly placed myself on the transplant list and received dialysis for about four years before a cadaver kidney became available. The story of the call from the transplant clinic was interesting. My transplant surgeon had told me that I would need a bilateral nephrectomy because my polycystic kidneys were large and infected. He said that they needed to be removed before the transplant, but the removal should be delayed until I was closer to the top of the transplant list as it would add extra stress on my body. After about three years on dialysis, I received my first call. I declined the kidney and scheduled the nephrectomy. This surgery was difficult and I was in a lot of pain. The following year was brutal while I waited for the next call. Without my native kidneys, I was no longer producing urine and I had severe limitations on fluid intake. This was most unbearable during hot summer days. The long wait between the first and second calls was exacerbated by a nearby transplant center being closed as people transferred their wait time to the center on which I was listed. In the ideal scenario, I would have received a call soon after the nephrectomy had healed. The second call came while I was on a Boy Scout camping trip. I had been involved in Boy Scouts for 25 years in varying capacities but many as Scout-master and frequently camping. I probably spent several hundred nights in a tent. On this trip, I had no cell signal inside the camp. My wife received the call at home and, after failing to reach me, drove to our camp and walked...

Metaphors and the Transplant Experience

Metaphors and the Transplant Experience Madalina Meirosu Fire and ice. I felt so cold. Every evening, I was shivering, and I had no idea why. I was just a kid, twelve years old, and shivering every [End Page E6] night before going to bed, even though it was warm in the house, even though we had plenty of warm blankets. I hated evenings because the cold was unbearable when the sun went down, and I had no way to escape it. It was emanating from my bones. I no longer mentioned it to the adults because the few times I had spoken of it, teeth chattering, I was just told to get under the blankets. Winter was coming from inside my bones, every evening, and I was freezing, and there was nothing I could do about it. And then, one evening, fire broke out inside my body. It was as if my body had had enough of winter and was conjuring up a volcano—the fever was so high that I was delirious, dreaming of fires and bombardments, and fighting on a battlefield where everything spelled doom. It took doctors a long time to figure out what was wrong. Romania had barely emerged from a bloody revolution in 1990, overthrowing a dictatorial regime, and medical equipment and knowledge were limited. Doctors struggled to make sense of my symptoms and tests, and by the time I was diagnosed with obstructive nephropathy and renal failure a few months later, it was clear that there was nothing to be done for me, at least not in Romania. Or as a famous Romanian kidney specialist told my desperate parents, towering over my bed: there is nothing to be done other than find a burial spot. Cold, again, in my bones, day and night. And now the cold took on a different meaning—the prelude to the cold of an open grave in front of me. My parents did not give up, they could not accept that their child would die so young, and a doctor in the capital city suggested that my situation would have been different had I been able to go abroad. Western Europe had the medical resources to treat me, but it was financially impossible for us to afford it. But my parents did not give up, and eventually, after numerous appeals, a miracle took place, and a teaching hospital abroad agreed to treat me. After a couple of surgeries, I gradually emerged from the winter within. I grew in height dramatically, put on weight, and began to thrive, though the occasional cold shivers in the evening reminded me what the doctors had said: the surgeries were a temporary patch. My remaining kidney had very limited functionality and would give out sooner or later, thereby forcing me to be on dialysis or to have a kidney transplant. Just before my 18th birthday, we began to prepare for the worst. The cold had returned in the evening, this time accompanied by nausea. I was asked if I would like to go ahead with the transplantation—I had been on the transplant list, and though nothing had come available, my father was a match—or if I preferred dialysis. I understood the benefits and advantages of both. I also understood that there would be more chances for a kidney from a post-mortem donation if I were on dialysis. I did not want my father to donate. There was shame and stigma in being chronically ill in Romanian culture, a shame that had been a constant reality for me. Especially in families with uneducated backgrounds, deeply steeped in a poor peasant mentality, being ill meant not being useful or worthy. Disability equaled shame. I did not want that for him. From what I understood, his health and ability could have been impacted after the donation. And I did not want that for me; I preferred to finish high school and deal with whatever health challenges I might have after finishing. My doctors suggested that I reconsider—that it would be better for me to receive the transplant as soon as possible. But I stuck to my plan, and my parents went...

Does Preoperative Rehabilitation Influence the Quality of Life in Patients Who Are Candidates for Lung Transplant?

Lung transplant is an excellent therapeutic option for patients with advanced/end-stage pulmonary disease. The purpose of this review was to define whether preoperative rehabilitation influences quality of life in patients who are candidates for lung transplant. This was a scoping review conducted by searching 4 primary databases from inception until January 2022. Three keywords, "lung transplantation," "preoperative rehabilitation," and "quality of life," were matched using the Boolean operator AND. In each database, the following fields were searched: PubMed (all fields), Scopus (title, abstract, keywords), Cochrane Library (title, abstract, keywords), and Web of Science (topic). Filters were applied for age (adult only) and language (English only). No filters were applied for gender, publication date, and subject. The search process was completed in January 2022. We retrieved 57 citations from these databases. After removal of duplicates, 41 documents were screened for eligibility. Two articles were included in the final analysis: 1 was a systematic review, and 1 was an observational prospective study. The rehabilitative interventions were mainly focused on motor and breathing exercises and were integrated by education programs. Preoperative rehabilitation was effective atimproving quality of life and mood status and reducing dyspnea in patients waiting for lung transplant. In addition, the 6-minute walking distance increased after patients participated in preoperative rehabilitation. Preoperative rehabilitation was composed of different types of exercise with variable duration (3-20 weeks) and frequency (3-6 times per week). Patients on the active wait list for lung transplant should be encouraged to attend preoperative rehabilitation in order to preserve and improve their quality of life.

Cystic fibrosis: candidate selection and impact of the cystic fibrosis transmembrane conductance regulator therapy

Over the past decade, the development of highly effective cystic fibrosis (CF) transmembrane conductance regulator (CFTR) modulators has dramatically ameliorated the manifestations of CF for most patients. Perhaps most importantly, CFTR modulators impact the development and progression of advanced lung disease (ALD) and are changing the CF population accessing lung transplant. A recent phase 3 trial of elexacaftor/tezacaftor/ivacaftor (ETI) demonstrated efficacy for individuals with at least one copy of the most common CF mutation, F508del. Studies of CFTR modulator therapy in patients with ALD have demonstrated similar improvements in lung function, nutrition, and pulmonary exacerbation frequency as seen in individuals with higher lung function. Due to improvements with ETI, rates of lung transplant for CF have declined and individuals are achieving stability in lung function. Nevertheless, the Cystic Fibrosis Foundation guidelines for lung transplant referral should be used to guide referral decisions for all individuals with CF, including those on CFTR modulator therapy, to allow remediation of modifiable barriers to transplant. ETI may be used in the posttransplant setting but for selected individuals and with close monitoring. Increasing access to highly effective CFTR modulators has changed the trajectory of lung disease in CF for many, but not all, individuals and there remain individuals who cannot access therapy or whose mutations do not respond to modulators. Lung transplant remains an important treatment option for individuals with advanced CF lung disease. Increasing attention will be required to optimize decisions of when to list for transplant.

The Right Heart.

The Right Heart Ingrid Gould I remarked to a friend, “We haven’t spoken since my arrest!” Alarm and confusion clouded his face, given my half-century of squeaky-clean living. “Cardiac arrest,” I clarified. “The fire department rebooted me.” An electrophysiologist diagnosed Arrhythmogenic Right Ventricular Dysplasia, prescribed medication, and implanted a defibrillator. For the next three-and-a-half years, he helped me live with a disease I didn’t know existed until he told me I had it. The disease progressed—an ironic, disease-centric term since its advancement was to my detriment— prompting my cardiologist to recommend seeing someone who specialized in heart failure. I resisted the very idea of heart failure, a terrible term for a struggling organ, but took her advice and scheduled an appointment. The new cardiologist urged transplant testing, a lengthy process. I agreed, figuring that by the time I needed a new heart in 15–20 years, they’d be rolling off 3D printers. To record occasional transplant musings and inchoate fears and perhaps, over time, untangle them, I began journaling. I chronicled my passage through the echocardiogram, heart catheterization, 31 tubes of bloodwork, interviews with different clinical specialties, a pulmonary function test in a machine reminiscent of Star Trek’s Transporter, and more. Testing had barely begun when my medication stopped working—a Halloween shock. I began a harsher medication, underwent an ablation, and spent six weeks in a wearable defibrillator, a vest with abundant wires, and a purse-sized battery pack that made me resemble a character in [End Page 123] the Jetsons. This attire did not bring holiday comfort or joy to the TSA1 when I flew to visit my sister. As my R-waves faded to a whisper, I swapped the vest for a second implanted defibrillator, substantially more sensitive than the first. In early 2018, we learned I had qualified for transplant listing, though I wished to get as much mileage as possible from the original engine. My cardiologist warned, “There is no Plan B—no machine, device, or medication for the long-term. You will need a transplant.” He explained that since most cardiac patients have left-heart problems, companies develop products for the left side of the heart. My problem was on the right—a tiny market. He also cautioned that a patient needs to be sick enough to warrant transplant and well enough to remain a candidate, survive the surgery, and recover. Although clinically I was ready, I was not personally ready. I felt too good to trade an excellent quality of life for the promised miserable post-transplant year. The cardiologist wisely asked if I wanted to speak with another patient. When I requested someone beyond the dreaded first year, he put me in touch with two women who had received new hearts a few years earlier and befriended each other. They soon became my invaluable mentors and cherished friends. I will never forget seeing them stride into our first meeting and thinking, “They are beautiful! They look totally normal!” By May, climbing four flights of stairs took as much effort as five used to take. Tests confirmed further deterioration and suggested I had 7–13 months of declining health before my heart would give out completely. We chose a date for hospital admission, and I started telling people outside my immediate family. Most were flabbergasted, believing heart transplants were the last hope of the desperately ill. I did not look moribund, though, apparently, I was. The eight months after my first transplant appointment let me prepare psychologically to bid farewell to my heart—the metaphor for kindness, love, and bravery in our culture—and to welcome a new organ from a generous person less medically fortunate than I. In the hospital, I met others awaiting their hearts. A sudden intimacy arises when mortal choices catapult people into a medical realm suggestive of science fiction. Add the emotional intensity that accompanies knowing your extended life comes courtesy of a person who breathes no more on this earth and you wonder how an organ recipient integrates sorrow and gratitude. Two weeks after I was hospitalized, my cardiologist informed me the wait was over...