Being discharged from the hospital is a major achievement and starts a new phase where the patient can continue recovery on home terrain.
Before you leave the hospital, you’ll receive information on medication and a care plan for follow-up medical appointments. This is an opportunity to ask any questions and talk over any concerns you have about leaving hospital care.
You will also likely meet with the hospital financial department.
A day or two before discharge, go to the Medical Records department and ask them to prepare a copy of the complete medical record including imaging studies, operative reports, etc. Especially if you are from out of town, DO NOT LEAVE the hospital without this packet. You will need this medical record in your own files.
Some patients don’t go directly home after discharge, but are instead sent to an in-patient rehabilitation facility to further recover and regain strength and skills before going home. Also, some patients may need ongoing outpatient kidney dialysis. Arrangements for these kinds of programs will be made by your medical team with your close involvement.
Transportation will be coordinated, and in most cases, you and the patient are finally going home. This is something you’ve dreamt about, prayed for, sometimes didn’t dare to imagine.
Many family members feel elation and gratitude as their doctors and nurses wave their patient off. There is great excitement about bringing the patient back home to their family, friends, to a community of people who’ve been supportive and loving during this difficult time.
There is also deep nervousness about being on your own now, away from all the life support and intense medical care it took to get you this far.
You have been in survival mode and have not had the time to process everything that has happened. The acute phase is over, but the long haul begins, particularly if your loved one endured a long, complicated hospitalization.
However, you have gotten through all the most difficult regions. You’ve gotten through the obstacle course leading up to hospitalization.
You inched your way along life threatening precipices during intensive care. Then, you descended into the smoother landscape of in-patient care and the beginnings of recovery.
Now you’ll be on home territory and may find that it feels like a new plateau, very different from what home felt like before the the patient got sick.
There will challenges ahead, but you’ve already gone through hell and back and proven that you’re up for this.
Patients who survive their voyage of foodborne disease almost always return home with “souvenirs”.
Your doctors will call these “souvenirs” sequelae. Sequelae are conditions that are consequences to a disease or injury.
Depending on the complications (organ system, severity, length) suffered during the acute phase of the disease, these sequelae can range from temporary and minor to permanent and debilitating.
After hospital discharge, as a family caregiver you will continue the process of helping the patient to recover. An awful lot has happened in the past weeks, perhaps months. There has been the obvious physical impact to the patient.
There has also been a very profound emotional impact on the patient and entire family. Now begins the time to sort all that out.
But for the moment, celebrate bringing your loved one home. Savor the victory of homecoming. Immerse yourselves in your own surroundings, your own space, rhythms, and routines.
Congratulations to you. Bigger congratulations to the survivor!
During your first weeks home you will adjust to the new reality of bringing the patient back to health and a recreating a rewarding life.
Every patient’s experience is different, and you as family member care giver(s) will have to respond to your own unique situations. However, there are general things that most people experience that they can share as advice to you during your first weeks with the patient back home.
Start slowly and continue to conserve your energy and that of the patient.
Give thought to how to discuss a child’s illness with siblings.
The first weeks may be consumed with follow up visits to the sub-specialist physicians you’ve gotten to know during hospitalization. If you were hospitalized far from your home, you’ll be referred to local physicians for followup testing and medical care.
You may encounter medical setbacks that require re-hospitalizations or more procedures in the following months. Although these can be very discouraging, most likely these reversals will be minor and can be seen as a continuation of this “mopping up” recovery phase the patient is still in.
Rebuilding the patient’s physical strength and immune system, and regaining lost weight are of prime importance in the first weeks back home.
Ask your family doctor or pediatrician about adequate sleep, increased physical activity, supplemental nutrition, and probiotics which can all play supporting roles in restoring health.
If the recovering patient is a child or teen, you and your doctor(s) will know when they are strong enough to return to school.
Beforehand you should request a meeting with the principal, nurse, psychologist, and anyone else who will be interacting with your child. You’ll want to bring the team up to date on current medical concerns and treatment.
Most school systems will work with the family and allow resuming school with a partial schedule, perhaps half days until your child is strong enough.
Teachers can be flexible with deadlines and due dates for assignments. Bring work home and tutors can help your child catch up with missed work.
If your child needs special help educationally as a result of their illness, there are resources available.
Under the Individuals with Disabilities Education Act (IDEA), every child is entitled to educational support and your child might qualify for free services like tutoring.
Children who have had long hospitalizations can have Individual Education Programs (IEPs).
According to the Kid’s Health website, “These are customized goals and learning strategies created by the teachers, school psychologists (or other specialists), and counselors. IEPs consider a child’s individual academic needs. Under the IDEA, kids who qualify for an IEP will receive one at no cost, and get free support services (such as a tutor) to help them reach educational milestones. Your child might be entitled to a 504 Plan, which will specify physical accommodations to help them navigate school grounds, access classrooms and bathrooms, find an aide, or qualify for special transportation.”
“You and anyone on your child’s education team can ask for an IEP and 504 Plan. To create an IEP, you’ll meet with support staff from your school and the school district. Contact the Special Services Office in your school district as soon as the doctor says it’s time to plan for your child’s hospital discharge and return to school.” (Kid’s Health website)
Putting your life back together, constructing a new one for a severely impacted victim of foodborne illness is a process that may take months or years. Most families who have gone through close encounters with life threatening diseases feel that they are forever changed in their outlook.
It is completely normal to begin viewing life as “before and after” the illness, experiencing the feeling that the life you had before is gone and now this new life is filled with so many new physical and emotional challenges. You may find yourself grieving the loss of the life you had prior to the illness. There are many emotional challenges along the way, but ultimately to become a true survivor, one must over time develop a sense of victory and empowerment.
Thankfully there is increasing awareness and there are many resources along the way to help you. The transformation from being a wounded victim to a person who has overcome tragedy and goes on to build an important life is an achievable goal. Do not be surprised if looking back, you find that your inner strength, courage, and commitment to others are qualities that were forged by this horrible experience.
Although unique to parents who have endured watching their child suffer from HUS, this research article about the emotional and behavioral changes in parents of children affected by HUS, applies to any parents who had a child suffer from a serious foodborne illness. It describes in detail some of the distressing consequences on parents who have watched their child suffer in the hospital and the fears that occur once back at home. This is all a normal reaction for the severe trauma you have been through.
Whether you were the person who experienced a foodborne illness or it was your child, medical trauma for Post Traumatic Stress Disorder(PTSD) is a new field. There is still a lot to learn and implement in the hospital setting. And when patients are discharged, not only will they have to continue with physical healing but they and their families will often have to focus on emotional and psychological healing.
Most families of patients who suffered severe foodborne illness experience longterm emotional distress and disruption to family and everyday life. Mental health experts conduct research about this impact and call it “Health Related Quality of Life” or (HRQoL) in the medical literature. HRQoL and PTSD for both recovering patients and their families are well described for diseases such as HUS. In fact, exposure to actual or threatened death and serious injury was included in the description of The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (2013, DSM-5), which acknowledged that medical trauma can cause PTSD.
Also recognized are Post Intensive Care Syndrome (PICS), and Post Intensive Care Syndrome Family Member (PICS-F). These diagnoses describe a collection of physical, mental and emotional symptoms that continue to persist after a patient leaves the Intensive care unit. Parents watching as children endure medical interventions, many feeling helpless to protect a child from suffering, are at high risk.
The National Child Traumatic Stress Network reports that 20% to 30% of parents in such situations experience lasting traumatic stress reactions.
Families of foodborne illness patients often are the ones to help raise awareness about the need for greater care and attention to the psychological component of healing. It is important that you raise the issue when meeting with the medical care givers continuing to follow your recovering patient’s progress.
Normal temporary reactions to expect are:
• Young children: Clinging to parents, bed wetting, being afraid of the dark
• Older children: Changes in sleep and eating, agitation, complaints of minor illness
• Parents: Constant worry, over-protectiveness, anxiety about caring for the patient’s medical needs, getting very upset at reminders of your child’s illness and hospitalization.
These are all common reactions and will improve on their own with time, patience, understanding, and support.
Signs that your child or you may need extra help:
• New fears, watching out for danger all the time
• Anxiety about school, usual activities
• Avoiding time with friends
• Arguing a lot with friends or family
• Feeling sad and lacking energy
Often family members are the ones who have to ask for help during the process of regaining their balance in the weeks and months following hospitalization.
Some of the resources available to you are:
• Mental health experts such as counselors, psychologists and psychiatrists
• School counselors sometimes run groups and can be a safe person for your child at school if they have a bad day
• Requesting a 504 Plan or Individual Health plan at your child’s school
• Specific to HUS: Hemolytic Uremic Syndrome (HUS) Support Group located on Facebook
Talk to your pediatrician or primary care doctor on how best to find the right person to help you over this hump.
There are many therapies available to help your child with PTSD. These might include :
• Eye Movement Desensitization and Reprocessing therapy (EMDR)
• Cognitive Behavioral Therapy (CBT)
• Mindfulness-Based Cognitive Therapy
• Emotional Freedom Technique
• Play Therapy for younger children
• Post-traumatic growth (PTG)
PTG was developed by psychologists Richard Tedeschi, PhD, and Lawrence Calhoun, PhD, in the mid-1990s, and holds that people who endure psychological struggle following adversity can often see positive growth afterward.
As a parent, you will have to balance the approach you take toward your child as he or she continues to emotionally recover from the experience of suffering a life threatening, life altering disease. Naturally you need to seek help and solutions to help them process what has happened to them and find strategies to adapt to the lasting challenges their illness has caused.
On the other hand, you want to liberate them from being a victim, and empower them to become whole and healthy again, maximizing the internal strength they showed just through surviving a devastating illness.
Your child or loved one is a survivor, and ultimately you want them to feel and live as victors.
Some recovering patients will have medical problems that require long-term follow-up care. Your doctors and caregivers will design a care plan and direct you to helpful resources going forward.
Every year in the United States one in six Americans in infected with a foodborne pathogen. These illnesses come with a price tag of $15.5 billion in economic burden. The true impact is not limited to medical costs and loss of productivity during the critical stages.
The damage continues on for years of chronic illnesses and disabilities. It’s conservatively estimated that 200,000 Americans develop long-term ailments from food poisoning. Infections with Campylobacter, E. coli O157:H7, Listeria monocytogenes, Salmonella, Shigella and other pathogens can result in long-term sequelae to various organ systems. These chronic illnesses include chronic kidney disease (CKD), irritable bowel syndrome (IBS), reactive arthritis (Reiter’s Syndrome), Guillain-Barré Syndrome (GBS), insulin-dependent diabetes, seizures, visual disabilities, cognitive and developmental deficits.
Some patients have medical consequences that require long-term treatment, follow-up care, and readjustment to the planned trajectories for their remaining lives.
Those recovering from hemolytic uremic syndrome (HUS) need regular follow-up care. During the acute stage of the disease, 50-70% require kidney dialysis. Between 30%-40% of HUS patients are discharged with some injury to their kidneys, even if they don’t experience obvious symptoms. They remain at risk for developing protein in their urine (proteinuria), high blood pressure (hypertension), and chronic kidney disease.
This risk only increases over time. At 1- and 5- year follow-ups, proteinuria and hypertension decrease. But after 10 years the number of patients with symptoms renal injury starts to increase. At 20 years post HUS, 25-30% of patients showed persistent renal impairment, putting them at lifelong risk of chronic kidney disease and high blood pressure.
Because kidney problems can appear at any time interval after the acute stages of the disease, all HUS patients need lifelong follow-up to detect early signs of chronic kidney disease.
For at least the first five years, recovered HUS patients need an annual follow-up examination of signs of hypertension, proteinuria, and renal insufficiency. Each visit should include blood pressure measurement and laboratory evaluation of renal function including urinalysis and serum creatinine concentration. For patients who become pregnant, it is also recommended that follow-up care includes assessment for elevated blood pressure and proteinuria.
Every year an estimated 164,000 foodborne illness patients develop Irritable Bowel Syndrome (IBS). The acute bacterial gastroenteritis caused by Salmonella, Campylobacter and Shigella can trigger IBS symptoms in 10% of those infected by these pathogens.
The defining features of IBS are recurring abdominal pain, diarrhea, or constipation. The duration and severity of symptoms vary. IBS severity can range from inconvenient to incapacitating, and can prevent individuals from participating in everyday activities. One half of IBS patients recover without treatment, but some take years to recover, especially those with untreated anxiety or depression.
Guillain-Barré (Ghee-yan Bah-ray) syndrome (GBS) is an auto-immune disorder in which the myelin sheath covering the nerves is attacked, causing muscle weakness and sometimes paralysis. The most common trigger for GBS is Campylobacter, with as many as 40% of GBS cases in the United States thought to be caused by this pathogen.
During the acute stages hospitalized GBS patients are usually treated with plasma exchange and high dose immunoglobulin therapy (infusion of antibodies). Afterwards it can take as little as weeks to as long as years to recover. Eventually, 70% patients recover with physical therapy and conditioning programs. Between 60-80% are able to walk again within six months.
Some patients have permanent nerve damage and lifelong disability. Between 15-30% of GBS patients continue to have weakness, numbness and fatigue, limiting their function at work, home, and leisure activities.
Children who develop diabetes (Type 1) as a result of pancreatic damage during the acute stages of HUS will start multiple daily insulin injections and glucose monitoring during their critical care and hospitalization on the ward. After hospital discharge, they will initially see their diabetes care team every three months.
There are 33,000 new cases each year of reactive arthritis caused by acute infections of Salmonella and Campylobacter.
2-10% of salmonellosis patients develop reactive arthritis.
The usual symptoms of this auto-immune dysfunction are joint swelling and pain; painful eye inflammation and cloudy vision (Uveitis); painful urination due to inflammation of the urethra (Urethritis); and psoriasis.
Reactive Arthritis (sometimes called Reiter’s Syndrome) is a difficult condition to treat, and can take months or years to resolve. Patients often relapse after the 4 year post-foodborne infection; and for some patients symptoms of reactive arthritis become permanent.
In some studies up to 30% of HUS patients experience central nervous system (CNS) involvement while they are critically ill. This neurological dysfunction can include seizures, coma, stroke, weakness on one side (hemiparesis), and blindness.
After 5 years, 4% of HUS patients show continued neurological impact. Depending of the severity of CNS involvement during HUS, rehabilitation, special education, or occupational therapy may be required.
At this stage when you and your family are contending with followup care for your loved one, as well as self care, you may want to investigate the numerous resources on social media. For many, these community groups can provide personal support, medical and practical information, and deeper awareness.
Mentors understand how emotional, overwhelming and chaotic your world has become and they are available to offer a listening ear. You do not need to struggle on your own.
We’ll connect an individual or a family member who is currently managing the persistent effects of foodborne illness with a mentor who has been similarly impacted and can share her/his unique perspective.
Below are several Facebook Groups/Support Pages that you may want to access, if only to know that you are not alone.
• Hemolytic Uremic Syndrome (HUS) Support Group
• HUS Fighters
• Survivors Of Hemolytic-uremic syndrome
• HUS Moms: Join by invitation⁕
⁕ If you’re interested in this group let us know at firstname.lastname@example.org, we know moms who will extend an invitation.
• GBS Survivors
• GBS Learning Central
• Guillain-Barré Syndrome Survivors Network
• Guillain-Barré Syndrome Awareness
• GBS/CIDP Exercisers
• Reactive Arthritis Support: Join by request
• Reactive Arthritis/Reiter’s Syndrome
• Reactive Arthritis/Reiter’s Syndrome UK
• Coping With Inflammatory Arthritis and Life Stressors!
• Reiter’s Information & Support Group
• Chronic Inflammatory Response Syndrome
• IBS Support Group for Women
• IBS Support Group
• IBS Support (Official)
• IBS Patient Support Group
• Colitis Support Group
• Ulcerative Colitis Support Group
• Girls with Guts Private Forum: Support for Women with IBD and/or Ostomies
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
If you or your family member has suffered a severe foodborne illness, you’ve travelled a long and arduous path.
For some people, the impact of taking such a dramatic detour in their life’s plan is hard to measure until many months, and possibly even years, go by. Most survivors look back on their lives in terms of Before and After.
For one to transition from being a victim of foodborne illness to a foodborne illness survivor, even if you’ve endured the ultimate tragedy of losing your loved one, you will have to plot your own course of how to live a meaningful existence going forward.
Many survivors are empowered by helping others going through what they’ve experienced first-hand, fighting to bring awareness and reduce foodborne illness, or helping to create a safer food system by sharing their experience with other stakeholders.
If you change your mind later, the work will still be here when you’re ready.
If you come out of this journey relishing your health, being thankful for the treasure you have in your family, mindful of the beauty surrounding us on earth, aware that every moment you have is an opportunity to do good, you will be a better person for the voyage you’ve made.