Factors Impacting the Medication “Adherence Landscape” for Transplant Patients

Abstract

Background:

Medication non-adherence contributes to post-transplant graft rejection and failure; however, limited knowledge about the reasons for non-adherence hinders the development of interventions to improve adherence. We conducted focus groups with solid organ transplant recipients regarding overlooked challenges in the process of transplant medication self-management and examined their adherence strategies and perceptions towards the post-transplant medication regimen.

Methods:

We conducted four focus groups with n =31 total adult transplant recipients. Participants had received kidney, liver, or combined liver/kidney transplant at Johns Hopkins Hospital between 2014–2019. Focus groups were audio-recorded and transcribed. Transcripts were analyzed inductively, using the constant comparative method.

Results:

Responses generally fell into two major categories: (1) barriers to adherence and (2) “adherence landscape”. We define the former as factors directly labeled as barriers to adherence by participants and the latter as factors that heavily influence the post-transplant medication self-management process.

Conclusions:

We propose a shift in the way healthcare providers and researchers, address the question of medication non-adherence. Rather than asking why patients are non-adherent, we suggest that constructing and understanding patients’ “adherence landscape” will provide an optimal way to align the goals of patients and providers and boost health outcomes.

INTRODUCTION

Among organ transplant recipients, medication non-adherence has dire ramifications including rejection, suboptimal organ function, disease recurrence, premature graft loss, or even death.^1–3 The World Health Organization (WHO) defines medication adherence as “the extent to which the person’s behavior corresponds with agreed-upon recommendations from a health care provider.”⁴ Organ transplant recipients are a unique population in which medication non-adherence has not only personal health consequences but also ethical implications, given organs are scarce and valuable resources. Transplant candidates undergo extensive psychosocial evaluation to ensure they are ready, able, and have appropriate support to accept the gift and burden of a new organ. Despite well-established poor health outcomes, immunosuppression non-adherence remains prevalent among 20%−50% of transplant recipients with studies showing increasing rates over time.^5,6

Previously, medication non-adherence was attributed to a lack of understanding regarding the potential physiologic consequences or poor patient- physician relationship. ⁷ Current recommendations for selecting optimal interventions are to first assess reasons for non-adherence among high risk patients, then utilize a multidisciplinary approach to tailor patient-specific interventions (i.e. combining clinical pharmacy services, medication intake reminders, reducing pill burden, and education interventions).^8,9

As the primary objective of this study, we sought to identify the barriers that contribute to a transplant patient’s struggle to consistently adhere to a drug regimen. In accordance with the emergent nature of qualitative methods, we expanded our aim from purely focusing on barriers to encompass a more holistic understanding of the minutia of daily life among transplant recipients.¹⁰ We coin this the “Adherence Landscape”.

METHODS

Study Design

The long-term aim of this work is to develop adherence aids for adult (>18 years of age) abdominal transplant recipients (kidney/liver/combined). As the experiences, challenges, resources, and support network for children and adolescent transplant recipients differ from those of adults, we elected to exclude them from our study population. We chose to conduct focus groups to foster interaction between participants, with the goal of surfacing experiences that are both unique yet common within this population. Focus groups allow participants to build off one another’s responses and construct a holistic picture of the issue in question.¹¹

We used a semi-structured moderator guide to facilitate the focus groups. The moderator guide was developed collaboratively by authors AS and MH, based on their literature review and prior research experience. We aimed to understand how participants regarded their own medication regimens, how they described medication adherence, what adherence strategies they used, what barriers they faced, and how technology tools might be useful as adherence aids.

The Johns Hopkins Institutional Review Board approved this study (IRB00212988), and all participants provided written consent.

Setting and Participant Selection

All adult kidney and liver transplant recipients at Johns Hopkins Hospital between May 1, 2014 and May 1, 2019 were compiled (EPIC, Epic Systems Corporation, Verona, WI). We used Stata (Version 15, StataCorp, College Station, TX) to randomly select a subset of 100 patients from the total. All potential participants were contacted by a single study facilitator (MD) via telephone call to recruit them for focus group participation. When recruitment of additional participants was needed, additional non-redundant lists of 100 patients were generated from the original EPIC report. We aimed to have up to 10 participants in each focus group until we reached data saturation.

Data Collection

Focus groups were conducted from January 2020 to March 2020. A study team member (AS with extensive background and training in qualitative research methods) moderated the focus groups, while others (AF, MD, and CS) took field notes. Median focus group length was 94.5 min (range 82–117 min). Focus groups were audio-recorded then transcribed verbatim. Participants received a $50 Visa gift card for their participation.

Data Analysis

Transcripts were qualitatively coded using NVivo software (NVivo 12.lnk, QSR International Inc., Burlington, MA). Qualitative coding was conducted using the constant comparative method, in which new data and emergent codes were constantly compared with prior data and codes.¹⁰ AS and AF independently reviewed the transcripts and constructed structural codes. Final structural codes and sub-codes were developed through a process of discussion and reconciliation between AS and AF. The two coders then independently coded the transcripts and reconciled disagreements through frequent discussion. Of the total codes, 116 of 130 were first derived from the first three focus groups, indicating that thematic saturation had been reached.¹² The team of coders had no reportable relations/assumptions with the participants other than assisting in and attending the focus groups.

RESULTS

Study Population

We held four focus groups, with a total of 31 participants (Table 1). Of the 393 eligible kidney and liver recipients, 184 were successfully contacted, 63 agreed to participate, and 31 attended a focus group meeting. Participants had received kidney transplants (65%), liver (19%), or simultaneous liver-kidney (16%) transplants. Females comprised 58% of the study population; 65% of participants were African American and 25% Caucasian. Median age (IQR) was 53 (46–59) years old. Approximately 30% of participants were employed full-time, 30% were unemployed, and 19% were under disability status. Medicare or Medicaid insurance was the coverage for 55% of participants and private insurance for 45% of participants.

Table 1.

Characteristics of focus group participants

Characteristic	Data
N	31 Participants (Focus group date:N)   - 1/18/2020: n=9   - 1/25/2020: n=7   - 2/29/2020: n=7   - 3/7/2020: n=8
Sex	58% Female (18/31) 42% Male (13/31)
Average Age (1/7/2021)	~ 51 ± 2 years
Median Age (IQR) (1/7/2021)	53 (46–59) years
Race	65% African American (20/31) 26% Caucasian (8/31) 3% Asian (1/31) 3% Native American (1/31) 3% Native Hawaiian (1/31)
Employment	32% Full-Time (10/31) 29% Not Employed (9/31) 19% Disabled (6/31) 10% Retired (3/31) 6% Part-Time (2/31) 3% Student (1/31)
Marital Status	39% Married (12/31) 39% Single (12/31) 10% Widowed (3/31) 6% Divorced (2/31) 3% Declined to Answer (1/31) 3% Unknown (1/31)
Insurance Type	55% Public Insurance (Medicare and/or Medicaid) (18/31) 45% Private Insurance (13/31)
Transplant Type	65% Kidney Only (20/31) 19% Liver Only (6/31) 16% Both (5/31)
# Transplants	90% Initial Transplant Procedure: Kidney/Liver/Combined Transplant (28/31) 10% Repeat Transplant: Second Kidney Transplant (3/31)
Average Years Since Most Recent Transplant	~ 3.5 ± 0.2 years
Median Age at Transplant (IQR)	~ 48 (42–55) years

Emergent Themes

We asked participants to define what “medication adherence” meant to them. Patients primarily conceptualized taking their immunosuppression medications as a fact of life: ”I don’t really look at it like, ‘Oh I got to do this. I have to do that.’ I know it’s what’s necessary”.

We identified two broad categories of emergent themes from our discussions: Directly-Labeled Factors and Adherence Landscape Factors. Directly-Labeled Factors were what patients identified as affecting their medication adherence. Adherence Landscape Factors encompassed less tangible factors that were unlikely to surface in regular conversations with healthcare providers but that nevertheless occupied a space in patients’ medication adherence-related thoughts, behaviors, and activities. These latter themes emerged independently across focus groups as major factors that comprise what we coined the “Adherence Landscape” of transplant patients and which likely fed into a more encompassing understanding of the post-transplant experience.

Directly-Labeled Factors

When asked to name anything that they perceived to be a barrier to their adherence, the four most prevalent sub-themes that emerged were: 1) difficulty obtaining medications, 2) insurance issues 3) disrupted daily schedule, forgetting, or getting too busy, and 4) side effects.

Difficulty Obtaining Medications

Challenges to obtaining medications included dealing with specialty medications not stocked at every pharmacy (“The cost for specialty meds, because as you know, the anti-rejection meds are-- not everybody needs them, and most of the prescription plans, they have to have that even outsourced to a specialty pharmacy, and you’re lucky if you even get the meds”), shortages of medications at local pharmacies (“I live in [rural town] and I got to come all the way down here…to get a five-day supply”), and obtaining extra medications for travel (“if you’re going out of the country and you’re going to be out of the country for a while, you’re going to have to get a supply before you even go. So I mean, then, then it’s you have to speak to your doctor to get that special request and that ain’t easy”).

Insurance Issues

Analogous to having a chronic illness, transplant patients reported challenges with navigating health insurance pathways (“It’s all the red tape with the insurance companies”), quotas (“... with my insurance, I have to meet a quota before the price really goes down”), and financial burden (“…or you’re fighting with them to be able to pay for it because you’ve got through their program, but every single month they’re like, ‘Well no, you still owe us this much.’”). Participants in one focus group unanimously agreed that the caps placed by insurance companies on medications they are allowed to “purchase” from pharmacies every month affected the amount of medications they had available. Particularly in the era of a pandemic, participants remarked on the struggle with stocking up on extra medications, with one participant remarking “My insurance won’t let me do that, period. Like if I call too early, they’re not going to be filling my medication.”

Disrupted Daily Schedule

Participants pointed out that disruptions of their daily schedules were barriers to adherence. Specifically, a commonly cited disruptor was schedule change on bloodwork days. For example, to avoid a falsely elevated tacrolimus level, patients were instructed not to take a dose of tacrolimus within 12 hours of blood draw. One participant noted that “[bloodwork] days just having a different schedule - that throws me off. Because I go and have that done and then sometimes I do forget to take it for a while… it just throws my whole day off.”

Side Effects

Side effects including diarrhea, nausea, neuropathy, and brain fog represented a fourth barrier to medication adherence. Multiple participants commented on the debilitating gastrointestinal side effect, stating, “Every single time I take my medicine in the morning it takes me three hours. I throw up and the diarrhea from the mycophenolate” and another commenting, “It’s just a lot of just feeling nauseous all the time is the worst part.” Another participant described medication interactions, saying, “You can only adhere to your schedule in a way that your body allows you to do it in response to the medications and the side-effects of the medications and the side-effects of the medications’ side-effects with other medications that no one ever talks about.” A participant referenced how the side effect of “brain fog” impacted their medication adherence: “So it’s like you got to remember when to take it. And then this stuff makes your brain non-remembering.”

Adherence Landscape – Indirect Factors

While discussing participants’ adherence strategies, multiple themes emerged that coalesced into what we have called an “Adherence Landscape”. This landscape encompasses the minutiae of daily life, the physical and mental needs that are unique to transplant recipients. They were not directly labeled by patients as factors that impeded medication adherence – however, the frequency with which they emerged, their independent origination across focus groups, and the prolonged nature of discussions on these topics suggested that they significantly impact the post-transplant medication adherence experience.

Access to safe drinking water to take their medications emerged as an everyday challenge for transplant patients that was potentially overlooked by providers; this type of challenge fit into the adherence landscape. Participants commented on the need, as immunocompromised patients, to be cognizant of the safety of things they consume, with one patient remarking, “I carry two cases [of water] in my trunk all the time. All the time, no matter where I am.” Another participant commented on how these logistic challenges affect even those who take steps to be prepared, stating, “I’ve had to travel and catch a plane before I took my medicine and can’t take the, you know, bottle with you. And then it’s not going to be enough time sometimes before you get to get some water.”

Another component of the adherence landscape was the perception that being a transplant recipient was an “unseen illness” since there was no readily visible physical manifestation. There was a shared sentiment that it was frustrating to constantly explain their needs/accommodations without recognition of the difficulties they faced (“It’s considered a luxury…there’s nothing in the culture that acknowledges how hard it is just because you have a working kidney like a normal, healthy person”). Participants suggested the “unseen” nature of their condition affected other parts of their lives, including their professional lives (“How do you explain [spending extensive time in the hospital] to your boss or work?”). One patient remarked, “I stopped working full-time because people don’t understand. And I’m not going to keep explaining my health issues because my health is first,” while another added, “Some medications you take make you sleepy. If you’re trying to work, that’s an arduous task. I lost two careers trying to do both”.

Post-transplant patients and their families also grappled with many psychological and emotional stressors. They experienced anxiety about the success of the surgery and the function of their graft (“Paranoia is very big when you first get the transplant, you know”). Participants also reported that adhering to complex medication regimens and experiencing adverse effects was challenging to cope with. One patient said, “I see the psychiatrist and it’s like you have to get approved by your psychiatrist because they say with the prednisone and the hormones it could make it a lot worse in that recovery period. And I, like, blew up at people that were supporting me and close to me.”

While discussing frustrating insurance issues as a major barrier to adherence, participants across all focus groups demonstrated strong bonding behaviors to express their agreement on the challenges. In all four focus groups, participants shared “life hacks” to navigate around some of the Directly-Labeled Factors affecting adherence, including obtaining medications and dealing with side effects (“Living Legacy is really great. They’re a really awesome support group for transplant people and stuff”). Participants also spoke of giving back to or connecting with others going through a similar process (“After I had my transplant, I joined the club called the TRIO club. It was a great thing to do. I started reaching out and talking to people who had been transplanted or were waiting to be transplanted, because I felt like I could relate to them”). We also noted participants staying back after the end of each session to talk to each other and even exchange numbers. More explicitly, participants noted a need for online communities where they could potentially exchange tips and provide emotional support to one another (“I thought it would be nice post-transplant if we had a support group like we’re doing today for people who had a transplant.. So we can talk and talk about, ‘Oh, this has worked for me. And this is what I do.’ And get ideas from each other”).

DISCUSSION

In this qualitative, focus group study of adult transplant recipients, we found that patients were aware of the importance of their medication regimens and that barriers to medication adherence fell into two general categories. Directly-Labeled Factors include challenges obtaining medications, insurance issues, disrupted daily schedules, and medication side effects. The participants’ interactions and behavior during the focus groups allowed us to identify a second under-explored context within their experiences; we termed this the Adherence Landscape. This landscape describes the minutiae and often overlooked complexities of daily life post-transplant.

Predicting and assessing medication non-adherence risk is critical for resource-intense treatments such as organ transplantation. Studies have identified a wide variety of patient-related and non-patient-related risk factors for non-adherence including past non-adherence, age, race and ethnicity, poor social support, poor perceived health, cognitive elements (e.g. self-efficacy, forgetfulness, comfort), more complex medication regimens (e.g. high pill burden, inconvenient timing), negative views on the use of immunosuppressive medication, and difficulties navigating insurance coverage and payments.^13–15 Non-adherence may also depend on the type of organ transplant; a meta-analysis found a 36% higher non-adherence prevalence rate among kidney transplant recipients compared to other solid organ transplant recipients.¹⁶ Although informative, prior studies reveal little about the lived experiences of transplant recipients with complex medication regimens and the modifiable risk factors they encounter. There is growing recognition of the potential power of qualitative exploration of barriers to medication adherence to identify previously overlooked targets for intervention.^14,17–20 Common issues raised include patient empowerment to take ownership of their treatment, coping with the demands of the regimen, and social accountability to peers and providers.^14,19

Two readily intervenable areas include post-transplant mental health support and facilitating more interaction between transplant patients. Greater rates of depression are associated with living alone, limited support systems, rejection events, and post-transplantation complications.²¹ Symptoms such as altered behavior, mood swings, depression, and anxiety may arise due to medication adverse effects, illness-related psychiatric disorders, and/or stress of allograft rejection events. These symptoms are associated with worsened patient quality of life and health outcomes, including higher rates of co-morbidity and post-transplant hospitalizations.²² Potential drug interactions between anti-depressant medications and immunosuppressant medications are of particular concern, given that 92% of transplant patients with depression report taking an antidepressant medication.²³ Despite undergoing pre-emptive psychological evaluation prior to transplantation, there is not as much attention paid towards post-procedure mental health and coping strategies. Developing interventions to improve adherence and provide education about medications after the transplant process is needed to help patients recover physically and emotionalxly.

Perhaps the most overarching theme to emerge from our focus groups was the importance of the transplant community as a whole, and the vital role it plays in members’ lives. Although every transplant patient has a unique story and journey, there is likely another transplant patient who has experienced something similar; they need not face every obstacle alone. The Adherence Landscape includes the isolation experienced by recipients – as demonstrated by their eager sharing of “life hacks” and telephone numbers with other recipients – as well as the “unseen illness,” a burden they continue to carry years after surgery. We witnessed that during our focus groups, patients appreciated talking to one another and exchanging stories as well as providing strategies of navigating some of the systemic hurdles affecting adherence. Some specific strategies shared included pillbox organization and travel tips, timing of taking certain medications to avoid side effects, storing medications in multiple locations (car, kitchen, nightstand, etc.), stockpiling medications in advance, always carrying cases of bottled water in the car, and circumventing insurance issues. As health care providers and researchers, we can express empathy, but this does not fully replace the sympathy and understanding from other transplant recipients based on their shared life experiences. Thus, transplant recipients are an invaluable resource to one another. As transplant providers, it is crucial we respect and acknowledge the power, strength, determination, and resourcefulness of this community and encourage recipient-recipient interactions to create patient centered and driven resources.

The shift to a focus on the Adherence Landscape necessitates a change in the questions we ask regarding medication adherence. Our findings revealed that shifting the question from “Why won’t my patients take their medications?” to “How do patients aim to be adherent and what are the challenges they face in staying adherent?” helps unveil the broader landscape of factors underlying medication non-adherence. Factors including water availability, career concerns, and mental health issues should be considered. This milieu of transplant daily life is important when considering medication adherence. Seeking to understand the Adherence Landscape will help bridge the gap between providers frustrated by patients’ medication non-adherence and patients who understand the importance of medications and yet fail to adhere.

Our findings make two important contributions. First, we add to the growing literature exploring barriers to medication adherence from the perspective of transplant recipients. Second, we show how critical review of the questions we ask of patients might lead to a better understanding of their actions, motivations, and struggles. For example, patients unanimously expressed understanding of the importance of taking their anti-rejection medications and guilt/remorse over being non-adherent. This attests to the successful efforts of patient education. It also suggests that the paradigm breaks down later, not due to lack of comprehension, but instead due to lack of adequate support for patients in their post-transplant lives. Although patients commented on the helpfulness of pillboxes, medication checklists, applications, and alarm clocks etc., no amount of reminders is going to make safe drinking water available to take the medications, or ameliorate the side effects of the medications themselves. Thus, the Adherence Landscape offers an explanation as to why despite the plethora of readily available tools, patients who know the importance of taking their medications do not, or perhaps a more appropriate phrase is “are unable to.” In this regard, we believe the concept of an Adherence Landscape might help providers and researchers conceptualize how and why non-adherence occurs. Understanding the nuances of the Adherence Landscape, in addition to the Directly-Labeled Factors, has important implications on the development of future strategies to improve post-transplant medication self-management.

Our study must be understood in the context of its limitations. We acknowledge our inferences were based on data from a small sample size, which may limit their generalizability. As these focus groups were conducted from January 2020 to March 2020 during the first wave of the COVID-19 pandemic and transplant patients were particularly vulnerable to COVID infection, we did not expand our sample size beyond what was needed to attain thematic saturation. Another limitation is that all the patients were recruited from one medical center (Johns Hopkins Hospital) thus may not be representative of all transplant patients. However, as transplant follow-up and medication regimens are all demanding and are similar across centers, we anticipate that other transplant recipients experience similar challenges. Additionally, as transplant patients undergo lifelong surveillance and immunosuppression management, we acknowledge that their ongoing relationship with the center may have influenced their decision to participate. This limitation was circumvented by ensuring that participants were not recruited during a vulnerable time (i.e. during hospitalization or clinic visit) and that no healthcare provider directly involved in the clinical care of transplant patients was involved in the recruitment or moderation of focus group sessions. Participants were also informed that their responses would also be de-identified as an added level of privacy. Lastly, this study population is adult only, further investigation must be undertaken to explore the unique barriers and challenges to adherence faced by adolescent transplant recipients. Understanding the barrier- and population-specific effects will require further evaluation. Further research can be conducted to validate and quantify the benefit of integrating this assessment strategy into clinical care coordination.

In summary, we suggest that an understanding of the “adherence landscape” may help maximize transplant patients’ treatment adherence and help us build clinical strategies around non-adherence. Our findings highlight the need to explore and understand the Adherence Landscape to address challenges to post-transplant medication adherence. Addressing this source of anxiety and frustration in the lives of transplant recipients could improve patient quality of life and long-term transplant outcomes. Comprehensive assessment of sociodemographic factors, mental health and community engagement, and work-life effects may offer an effective way to establish risk categories of non-adherence and proactively address barriers to care for patients pre- and post-transplant.

Data statement:

The data that support the findings of this study are available from the corresponding author upon reasonable request.

Table 2.

Illustrative Quotes

Theme	Quote
Directly Labeled Factors
Obtaining medications	But if you, like you said, if you’re going out of the country and you’re going to be out of the country for a while, you’re going to have to get a supply before you even go. So I mean, then, then it’s you have to speak to your doctor to get that special request and that ain’t easy because he’s not only that. (M3, FG1) The cost for specialty meds, because as you know, the anti-rejection meds are-- not everybody needs them, and most of the prescription plans, they have to have that even outsourced to a specialty pharmacy, and you’re lucky if you even get the meds. Like tacrolimus-- I got a call from my Hopkins doctor and she was like, “I just wanted to let you know, you may not be able to get your tacrolimus because there’s a shortage.” (W4, FG2) Oh, certain medicines that you-- that’s up for due, you know, they don’t have. A lot of, you know, a lot of times you have to call your doctor to get on the pharmacist, you know. (M3, FG3)
Insurance issues	It’s all the red tape with the insurance companies. (W1, FG2) They talk about, “We’ll help you,” but they’re not really helping me, because with my insurance, I have to meet a quota before the price really goes down. (W2, FG2) Because everybody’s rules and regs are different. As far as the MCOs and different types of insurance is concerned, what happens is if you’re married-- take me-- or they make X amount of dollars, you don’t qualify. It has nothing to do with me. (M3, FG2) My insurance won’t let me do that, period. Like if I call too early, they’re not going to be filling my medication. (W4, FG4) [on stockpiling meds, like during a pandemic]
Disrupted daily schedule	I take mine at seven thirty in the morning but my lab doesn’t open till eight a.m. So it’s just-- it’s one of those, I’m looking at it, I’m like, “No, can’t take it, put in the pocket, let’s go. You can take it afterwards.” (W1, FG2) There’s been a couple times that I have been, like, a little off like when I have to go to the Infusion Center, only because I have a mediport in my chest because I don’t have any more access, to get my bloods drawn, like you can’t take the Envarsus before you go, so sometimes I notice that that, like, throws my day off. When I come back and I’m like off that schedule, I sometimes forget. (W1, FG3)
Forgetting or getting too busy	Because I know that my schedule is-- all of our schedules gets busy… And we all forget. (M2, FG3) No. I mean, I’ve literally..,fell asleep, forgot to take them at night and, you know, I didn’t double dose or anything like that. I just took my meds the next day. And I haven’t had any problems. (M4, FG3)
Side effects	Well, I take so many-- Like, right now I’m so sick. Every single time I take my medicine in the morning it takes me three hours. I throw up in the diarrhea from the Mycophenolate. (W2, FG4) It’s just a lot of just feeling nauseous all the time is the worst part. (W2, FG4)
Adherence Landscape
Water availability	I’ve had to travel and catch a plane before I took my medicine and can’t take the, you know, bottle with you. And then it’s not going to be enough time sometimes before you get to get some water, so. (W4, FG1) I carry two cases in my trunk all the time. All the time, no matter where I am. (M2, FG3)
Career concerns	Some medications you take make you sleepy. If you’re trying to work, that’s an arduous task. I lost two careers trying to do both. (M3, FG2) I lost my job recently too, but mine wasn’t from <laughs> like the diarrhea stuff. Mine is because I get infections a lot. I get walking pneumonia all the time. (W3, FG4) I don’t work. I can’t work anymore because I had a very physical job. Luckily I had saved money. But I just can’t physically stand up eight hours. I have neuropathy in my feet horrible from everything. (W2, FG4)
Mental health issues	Paranoia is very big when you first get the transplant, you know. (W3, FG1) We’re dealing with mental. We’re falling apart and inside of us we’re like, “Is anybody else going through this?” (W3, FG2) I used to cry a lot and I’m just going to be honest. (W4, FG4) I see the psychiatrist and it’s like you have to get approved by your psychiatrist because they say with the prednisone and the hormones it could make it a lot worse in that recovery period. And I, like, blew up at people that were supporting me and close to me. (W5, FG4)
Unseen illness	I stopped working full-time because people don’t understand. And I’m not going to keep explaining my health issues because my health is first. (W4, FG4) When you use phrases like that to the people behind the counter or the person on the phone, they think you’re being melodramatic. They don’t understand that it’s life or death. I mean, if God forbid and talking to you it sounds like you’ve all missed something for one reason or another. Not some of the questions you’ve asked, but it’s one of these things where you realize we miss, [ph?] oh, no, we need to do what we need to do to catch up or make sure we get back in sync. But to the outside world, they don’t understand that this literally is life or death and there’s no way to convey that without getting that, “Really? Aren’t you exaggerating?” And it’s like, because in our minds, if the kidney fails and we go back on dialysis. (W6, FG4)