959 cess happen in an outpatient setting really hit me hard Robert’s Mother My son, Robert, was 12 years old when we were told that he needed to start dialysis While Robert was in the ICU receiving hi[.]
50 The Spectrum of Patient and Caregiver Experiences cess happen in an outpatient setting really hit me hard Robert’s Mother: My son, Robert, was 12 years old when we were told that he needed to start dialysis While Robert was in the ICU receiving his first rounds of hemodialysis, I was in shock Kidney failure is seldom something you plan to go through Even as a registered nurse, the words “renal failure” and “dialysis” were overwhelming Organ failure of any kind is something I had heard about in the movies or read about in an article or a magazine I had not known anyone who had personally gone through any kind of organ failure How could it happen to my own son? Thomas’s Mother: We had no time to prepare, to make decisions, or to become properly educated All of the sudden we were being asked to make decisions regarding our lifestyle and the type of dialysis we preferred As the nurse was telling us about dialysis it was all I could to hold myself together and not break down in tears as I thought, “What a terrible way for a kid to live.” We managed to make it through the training, consent to have my son listed, consent to have the nurse set up appointments at two transplants centers, and get outside before I broke down into tears • Uncertainty About the Future: Lily’s Mother: Lily was on dialysis for 10 months When I see her scars now from her HD and PD catheters and her g-tube all of the memories come flooding back Thankfully her scars don’t bother her I hope that one day she will feel as proud of all that she has endured as I am I also hope that she will never have to dialysis again Robert’s Mother: I had so many questions and feelings that I didn’t even know how to put into words “How will this affect his future? Our family’s future?” Our home 959 was several states away from the hospital “Would we have to relocate? Would he have to have a transplant? How would we get through this? Would we get through this?” Box 50.2 Loss of Control • Loss of Childhood Memories Lily’s Mother: After enduring the previous 6 months of Lily’s hemodialysis treatments, adding peritoneal dialysis as well put me over the edge emotionally I resented that she needed to be dialyzed 14+ hours each day, and that she was being robbed of a normal childhood Having two dialysis catheters meant that Lily could not get wet for risk of infection This made bathing her very challenging At home we gave her sponge baths and washed her hair in the sink Still, Lily loved to watch her older sister take baths and I remember longing for the day when they would both be able to get into the tub together Sundays were a very special day because Lily’s dialysis nurse at the hospital would let her play in a bucket of water in her crib and get as wet as she wanted During that year of dialysis I needed a sense of normalcy during an otherwise abnormal situation I took many photos and usually not of Lily in the hospital I needed proof that in addition to all of the time she spent in the hospital she was also growing up like every other baby When I look back at those photos now, I know that hidden underneath her clothes are catheters and feeding tubes It gives me comfort that she is smiling in the photos, and that she doesn’t remember any of it Thomas’s Mother: While on dialysis, my son was academically falling behind and not reaching his benchmarks I wanted 960 the school and his teachers to everything possible to make sure he was learning, but, as a mom I could see how challenging it was for him to stay on task and focus on his learning In the end, his health was the priority and that became our focus Years later, after he had another transplant, we had academic testing done because he was beginning to struggle with reading fluency and comprehension What we discovered was that the gaps and deficiencies in his academic skills correlated with this time period prior to his first transplant and the time he was on dialysis • Trust in the Clinician and Care Team Lily’s Mother: We were blissfully unaware of all of the things that could potentially go wrong during hemodialysis We put our faith in the care provided by our dialysis nurses We did have two frightening incidents when dialysis did not go as planned Both times, the nurses responded to the situation right away and called in the doctor We felt reassured that the matter was handled correctly and efficiently The incidents, however, also reminded us of how challenging and dangerous it was each time we dialyzed our infant daughter Sensing my feelings toward all of this dialysis, our doctor said something very wise to me back then: “This is short-term pain for long-term gain.” He was completely right and we have entrusted him with her care for 13 years now Robert’s Mother: We met so many wonderful doctors and medical professionals but when I saw “our” nephrologist I felt like everything was going to be okay He knew everything about my son, more about our family than anyone else there, and he knew about all the questions I was afraid to ask I felt so alone, and I valued his visit and his wisdom A Tong et al Box 50.3 Change in Family Dynamics • Strain on Marriage and Relationships Thomas’s Mother: We rarely left my son to the care of anyone else The one event we did allow him to was his annual trip to camp with my parents My mom was one of two people we would leave him with She was such an important part of our plan Since she had flexible hours/days at work, she would take him to dialysis if we were not available In preparation for the trip to camp we had her go through a mini- training with the director of the dialysis center The nurse was more than happy to train my mom in what to while my son was in her care Everyone thought that the night away would be great for my partner and me, but it was just the opposite We were anxious the entire time and worried about everything that could go wrong We decided that we preferred to have my parents come to our house to relieve us for an hour or two Jacob’s Mother: I can see where some marriages would also be strained by this experience, but for us, this didn’t happen We approach it very much as a team In fact, we often marvel at the fact that our mental and emotional breakdowns never happen at the same time – so, when I finally breakdown, my husband is the one to be strong, and vice versa Anna’s Mother: I recall that Anna’s illness really pulled us together as a family We were working together to focus on saving her life My husband and I took over different aspects of her care I specifically focused on more day-to-day things and he looked at the long-term strategic planning Honestly, she became our entire lives and focus There was very little time for anything else There was lots of stress, anxiety and worry I knew other families that broke up or had one partner tune out, but that 50 The Spectrum of Patient and Caregiver Experiences didn’t happen to us I don’t think either of us were thinking of ourselves then It was more of how we get this done and make sure she survives AND thrives • Sibling Inattention and Neglect Lily’s Mother: Our older daughter, Ashley, was 3 years old when Lily was diagnosed and her life really changed Instead of attending morning preschool, Ashley needed to go to all-day preschool, 5 days a week One of us would take her to school early in the morning, then head to the hospital for dialysis, then someone (usually a grandparent) would pick Ashley up from school and whoever would be with Lily at the hospital would finally see Ashley in the late afternoon For a long time Ashley thought all siblings had medical problems We were very concerned that Ashley would feel left out by all of the attention Lily was getting, so we made an extra effort to spend time one-on-one with her and to make sure she had plenty of grandparent attention We also included Ashley in small but important PD steps at home, like turning the machine on and carrying the bag of fluid to the machine so it could warm up Robert’s Mother: I am a single mom with three high-needs kids I tried to plan activities for the times that Robert would be going on and off dialysis so that the other kids would be safe and so that I wouldn’t be interrupted but I was not always successful My other two kids were very understanding and tried to help when they could I will never forget the day that the man who delivers the dialysis supplies called to see if he could come earlier than scheduled It was a snowy day and it was our responsibility to have the path clear for the handcart My daughter offered to go shovel a path through the snow Jacob’s Mother: Going through something like this as a family has ultimately 961 made us closer, but it certainly has challenges We have an older son who was 13 at the time his brother got sick, and he had a period of time – especially those first few months – where he basically raised himself We have always thought of him as an old soul, mature beyond his years, so he handled it like he handles everything in life – he just handled his business Still, it is hard to realize how much of our attention he had to without • Need for Support Lily’s Mother: We had a great support system My parents each volunteered to take Lily to dialysis one day each week, and my husband took her on Saturdays My parents also graciously offered to take Lily to dialysis together on Sundays, to allow my husband, our older daughter and me some family time I kept a blog going about Lily’s medical situation so that I wouldn’t have to constantly answer phone calls and emails from everyone Reading comments was a great way for us to feel supported by our family and friends Robert’s Mother: I remember feeling overwhelmed and alone so much of the time even though we were surrounded by people who were caring and supportive I wished that the dialysis nurse would call to check on us more often, not because we were having any problems, but just because I needed reassurance and to talk with someone who understood Thomas’s Mother: Our family was able to cope with the time my son was on dialysis because we had a strong support group On nights he was dialyzed, friends would make us meals from the dialysis cookbook Family members would show up at our house to clean it for us My sister-inlaw did our grocery shopping Neighbors mowed our lawn, raked the leaves and plowed the driveway when it was needed 962 We did not need these things to be done for us, but graciously accepted the help because we understood this was their way of helping us and showing they cared about our family My son being on dialysis was an extremely humbling time We had to accept help when we didn’t request it and show graciousness when we just wanted to be left alone We learned to go outside our comfort zone and let people into our lives because they cared about us We needed the support or our family, friends, neighbors, coworkers, dialysis staff, and community Without all of their support we could not have managed the emotional and lifestyle challenges we faced Box 50.4 Lifestyle Restrictions Lily’s Mother: We didn’t go anywhere out of town with Lily during the first 16 months of her life Our lives consisted of driving between the hospital and our home every day Once she was listed for transplant, we couldn’t go more than 30 minutes from our home in case we got “the call.” We parents were going stir crazy Each night, we needed to be home before 8 pm when Lily would be hooked up to the PD machine for the next 10 hours Usually we read books together and she would drift off to sleep and be laid in her crib while the machine started to its work The majority of evenings, however, there were alarms or vomiting or some other reason that the nighttime would not be restful Ten kilograms (or 22 pounds) of weight was the magic number the surgeons wanted Lily to reach to list her for transplant Each day was a battle because she was so nauseous We needed to feed her enough fortified milk to help her grow, but not so much that she would vomit it back up Lily vomited about 10 times each day – in her crib, all over our house, in her car seat on the way to the A Tong et al hospital, etc I was constantly cleaning up after her and worrying that she would not grow large enough for her transplant Thomas’s Mother: The dietician met with us to give us meal plans and guidelines to follow regarding diet and hydration All of the healthy lifestyle choices we had been living by the past 6 years we disregarded and replaced with a dialysis- friendly lifestyle I researched and found great suggestions and recipes All information I found was geared toward adult patients, so I cleared all the information with our pediatric dialysis staff It wasn’t long after returning home from my son’s nephrectomy that we cleaned out our cupboards We decided that it was better for us to get rid of food than it was to have it in the house and create temptation We were committed to the family eating only the foods that Thomas could eat Anna’s Mother: We were brave enough to manage a trip to Disneyland during this time It took weeks of coordination with the dialysis supply company, the hotel, and the dialysis nurses at our children’s hospital We had to ensure there was a hospital nearby that could handle pediatric dialysis in case of emergency We had to contact the hotel to make sure they would accept medical supplies mailed prior to our visit and would ship to a place that was not our home address We had to time our visits so that we would be back at the hotel every evening in time to hook her up We had to stay awake most nights, scared that she was going to roll out of the bed and pull her tube out But it was worth it – 100% She had an amazing time and got to be an everyday kid enjoying Disneyland with her cousins Jacob’s Mother: We were able to travel, first by taking a road trip and then later, when we were braver, by plane It was through our travel experience that we developed our spine, so to speak Travel on 50 The Spectrum of Patient and Caregiver Experiences PD forces you to assess how you want to approach life, in general – you want to play it safe all the time, taking very little risk? Or, are you willing to take some calculated risks? The road trip went smoothly, but we were on edge, scared that we would forget some critical supply or that he would end up getting sick now that he stepped outside our little house bubble He didn’t and we had a great trip Yay, us! The plane ride took two attempts On our first attempt, Jacob threw up on the way to the airport We worried, of course, but with no other symptoms, we chalked it up to being carsick and decided to keep going Jacob fainted 20 minutes later when we were in the security line We were taken by ambulance to our local children’s hospital ER, where he very promptly recovered, once he had IV fluids The doctors concluded he was dehydrated, adjusted his dialysis prescription for that night, and gave us their blessing to go on our trip Our little bravery we had earned from the road trip had vanished and we were shook up We were so tempted to play it safe and just cancel the trip That was when we made a critical decision, and we still use it to guide all of our decisions – we decided that we needed to teach our son how to live safe, but not live scared If we cancelled our trip, we were teaching him to live scared So, we went The trip went fairly smoothly and we have great family memories from it, but it was so much more than a trip – I felt like my son learned a little about the art of taking calculated risks, that I hope he carries that with him Thomas’s Mother: I recall this time in our lives being so emotional that I avoided going out in our community to day-today tasks such as: going to the drug store, grocery shopping, going to community events It was such an emotional challenge to “keep it together” in front of my son that avoiding situations was easier than facing 963 them People in our community are so kind and wanted us to know that they were supporting us They always inquired how my son was doing and how we were doing Another reason we avoided public events is that we didn’t want his health situation to define our family We wanted him to have as much normalcy as possible Box 50.5 Caregiver Burden • Hemodialysis Lily’s Mother: Lily’s first hemodialysis treatment was very scary for us Once she tolerated it well, she began receiving treatments a few times a week for or 2 hours at first The number of days at the hospital continued to increase until we were finally at the hospital every day, days a week for 4-hour HD treatments each time It took about 30 minutes to drive to the hospital, then another 30 minutes to prepare her to be put on the dialysis machine, then the 4-hour treatment, another 30 minutes post- treatment to take her off the machine, and then another 30 minutes to drive home This meant we spent at least 6 hours each day doing hemodialysis for our daughter This one simple treatment was very time consuming, but so very important until she could receive her transplant When Lily first started receiving dialysis, she would take frequent naps We could read a few books and then she would soon be dosing off to sleep As she grew, however, her awake time got longer and longer And the dialysis tubing seemed to be getting shorter and shorter We only had about 2–3 feet of extra tubing to work with Soon, she was pulling up on the edge of her hospital crib, then she was trying to walk across the crib and away from the machine We were always nervous that she would accidentally A Tong et al 964 pull out her catheter, which would mean another procedure to place it all over again Lily took her very first steps to her dialysis nurse while being hooked up to the machine Eventually, she was not taking any naps while on the machine This proved to be a very big challenge to entertain her for full hours of treatment each day We enlisted the help of every person who was willing to assist us Lily was too young to watch videos so we sang songs, blew bubbles, and found new and interesting things for her play with Thankfully, the hospital allowed us to leave many boxes of books, music, and toys near her crib to rotate through each day All in all, we did daily hemodialysis for 10 months each and every day except on Thanksgiving, Christmas, and New Year’s Day On those 3 days, I remember feeling a wave of relief that she didn’t have to go to the hospital, but also dread that she was not being dialyzed Jacob’s Mother: Life on hemodialysis was no picnic It dominated our day, once you factored in the time to drive there, the time to get set up, the treatment, get taken off, and then drive home It was scary, with all the beeping, alarms, and blood It was mind-numbingly boring I also hated the time in between HD, when I was painfully aware that his body was building up all of the waste products that he needed to get rid of – the weekends being the hardest for that one, since this is when he went for a longer chunk of time without dialysis Anna’s Mother: When Anna was 18 months old she went on hemodialysis We were at the dialysis center 5 days a week for 4–5 hours at a time, plus an hour’s drive time to get to and from Keeping a toddler entertained in the dialysis center was quite a task It’s hard to entertain an 18 month old when you can only sit still on the bed We had a storage box that was filled with games that she could play with while sitting up Simple things, like Tupperware containers full of rice with measuring cups and spoons and funnels We had games with magnets We had endless books of stickers so that she could put stickers all over the storage bin • Peritoneal Dialysis Lily’s Mother: All of the equipment and many boxes of supplies were delivered to our home Her bedroom no longer looked like a little baby’s nursery, but instead it resembled a hospital room I would check on her repeatedly during PD to make sure she hadn’t rolled over and kinked her tubing or pulled out her catheter or g-tube I was on mental alert 24 hours a day After a few weeks of not sleeping due to worrying all night long, we brought in home health nurses to monitor her PD at night so that we both could get some sleep Jacob’s Mother: Choosing to PD was a clear advantage – being able to the dialysis at home, while he slept, was so much better than going into the clinic three times a week He did have to HD for about a month after he was discharged, while we were trained to the PD and his catheter healed When we passed our PD training, stocked up on supplies (So Many Supplies.), and were given the green light to start, life got much easier PD is a tremendous blessing in so many ways For one, he just seemed healthier, receiving dialysis every day It did not take much time out of his schedule, since it happened at night His diet was liberalized, and we even got to push potassiumrich foods sometimes Anna’s Mother: When Anna was 2 years old she went on peritoneal dialysis While this allowed us to her dialysis at home, it was a life-altering event again My daughter could finally return to day care and eventually preschool She was ecstatic to be around kids again But the ... dialyzed our infant daughter Sensing my feelings toward all of this dialysis, our doctor said something very wise to me back then: “This is short-term pain for long-term gain.” He was completely... of Patient and Caregiver Experiences didn’t happen to us I don’t think either of us were thinking of ourselves then It was more of how we get this done and make sure she survives AND thrives • Sibling... and medical professionals but when I saw “our” nephrologist I felt like everything was going to be okay He knew everything about my son, more about our family than anyone else there, and he knew