Riding The Rollercoaster Of Life
Post-Transplant

By Jenna strickland

On the outside I look like the typical 30-something-year-old woman, but my insides tell a very different story. I was diagnosed with cystic fibrosis at birth after being born with meconium ileus, which is a bowel blockage in a newborn’s first stool. I continued to have stomach issues and blockages throughout my childhood and started suffering from frequent lung infections in high school. After a long battle with chronic lung infections, which got a lot worse in college, my lungs were greatly scarred and, by the time I was 25, I was dealing with a rare bacteria, Pandoraea, in my lungs. This bacteria made me extremely sick and, unfortunately, there wasn’t much research on it or how to treat it. My CF doctors contacted other CF centers to try to get any information on this bug. I blamed myself for contracting Pandoraea, but we weren’t even sure where I had come in contact with it. 

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I started to need IV antibiotics monthly in addition to oxygen at night and during exercise. Eventually I needed supplemental oxygen 24/7. I even had to wear oxygen in the shower and remember feeling so short of breath walking just a few feet. I had a feeding tube because maintaining weight was impossible with all the coughing and lung infections. I was underweight my whole life and people were always telling me to eat more, assuming I was anorexic. Little did they know I was coming home from school and eating fast food daily and choking down high-calorie Boost nutrition drinks. 

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Around 2014, my CF doctor told me I would need a double lung transplant to survive and he referred me to Columbia Presbyterian in New York for lung transplant evaluation. After what seemed like a never-ending list of tests, both physical and mental, I was finally deemed a candidate for a double lung transplant. I was listed and it felt like a big relief even thinking about transplant being a possibility, since there was no guarantee I would get a call for lungs. After one month of waiting, I got the call that there was a match. My parents drove me to the hospital and we waited for hours until finally a doctor told us that the surgery was a go. For some reason I wasn’t scared, I knew I was in good hands. I trusted the surgeon and doctors around me and my faith assured me that I would be okay regardless of what happened. 

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I remember waking up in the ICU extremely uncomfortable on the ventilator with my parents by my side. I had so many machines around me, and my dad said that they were testing my lungs and they were getting perfect results. I remember feeling anxious, uncomfortable, and thirsty. I couldn’t talk so my parents gave me a pen and paper to write. I kept trying to ask for water and the nurse put little wet sponges on sticks in my mouth. I was very agitated and something felt wrong; eventually my nurse realized my sedation had been lowered so they adjusted the dosing to put me back to sleep. The second time I woke up I was much calmer—I was finally extubated and the long tracheal tube was removed. My throat hurt so much and my mouth was unbelievably dry. I felt a big sense of relief knowing that the intubation was over and I had survived the surgery. I expected to be able to take big deep breaths but that wasn’t possible because the staples were so tight that my chest felt restricted—I was a little disappointed.  

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During my three-week hospital stay, I got physical therapy, pain management, education concerning all my new post-transplant medications, and the time to adjust to the feeling of my new lungs. I had some complications at first—I had atrial fibrillation (Afib) a couple nights after being on the transplant floor and that was a really scary experience; my heart was racing the fastest I’ve ever felt it while I was just lying there doing nothing at all. I also started seeing and hearing things because of the pain medicine and they had to switch it to something else. They said what I was experiencing were hallucinations that often appear on high doses of IV pain medicine, which I had never had before. I had to pass a swallow test to be able to eat and drink and soon I was able to eat my first meal, which was a cheeseburger and french fries from a nearby restaurant. The hospital food looked disgusting and one thing about me is I’m always going to get good food from somewhere, no matter what! There are a lot of food restrictions, especially the first year after transplant. The most important restriction was that everything had to be cooked well done. My mom made sure the restaurant cooked my burger well done and that there were no raw vegetables on or near it. It was hard to keep remembering what I could and could not eat since I was so used to eating whatever I wanted in hopes of gaining weight. 

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The rest of the time in the hospital was focused on physical therapy and walking without a walker. I had six chest tubes, but they removed four by the first or second week and the last two I had pretty much until the day I was discharged. The doctor said it was because my lungs were very large so that’s why they continued to drain. Someone from thoracic came every day at 6:00 a.m. to check the drainage; if the volume of drainage was under a certain amount ,they could pull the tubes. The chest tubes were the most uncomfortable part of transplant recovery for me. They weighed me down and it looked like a tiny string was holding them in and that they could rip out with any sudden movement. I couldn’t get out of bed on my own, which was very frustrating especially since PT encourages you to walk multiple times a day. Another hard part of recovery was that I had to sleep on my back. I’m a side sleeper and I wanted so badly to roll on my side but I couldn’t because of the chest tubes. 

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I felt like I was in a dream when I finally got to go home—all my CF equipment that I had used to try to keep myself healthy was put away. My large oxygen concentrator and portable oxygen concentrator were given back to the rental company, and my house felt so much more like a home and not a makeshift hospital. I felt like my body had superhero strength—I could walk without getting short of breath and go upstairs without feeling light-headed and my heart pumping out of my chest. I never realized how much effort it took for my body to go up a flight of stairs or walk a couple miles. I was obsessed with walking and working out—it felt so easy and I was so happy to have healthy, clear lungs. My main goal now was to get back into the gym; I wanted to see how far I could push myself now that I could breathe. I had follow-up transplant appointments early in the morning and they involved x-rays, pulmonary function tests (PFTs), blood work, and a visit with both my transplant nurse and doctor. Over the next few months, I got my staples out, my feeding tube pulled, sinus surgery that involved removing bone from my cheeks to open everything up for optimal drainage, and a bronchoscopy to check on my lungs and take samples to see if anything was growing in my sputum. 

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My first bronchoscopy was an absolute nightmare—I ended up having a pneumothorax (collapsed lung); I had to get an emergency chest tube; and I was admitted until my lung reflated. When we went over the potential risk factors before the bronchoscopy, there was a 1% chance of pneumothorax and I was unlucky enough to have it happen to me. My sputum also grew Pseudomonas but it is extremely common post-transplant because it can be colonized from the sinuses. I still had a PICC line in my arm from getting IV antibiotics in the hospital after transplant so I was able to do them at home. After I recovered from the pneumothorax, I was feeling really great and enjoying waking up in the morning and not having to sit there with a vibrating vest coughing up mucus for an hour. I also had to do a nebulizer treatment for a couple weeks but, compared to doing three nebulizers twice a day, this was really easy. My transplant clinic made me keep track of my oxygen saturation levels, my blood pressure, my weight, and my peak flow numbers in a big binder I brought to my transplant check-ups. Everything was looking good and I felt like my body was healed. I knew I still had CF but it didn’t feel like I did anymore. 

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Around four months post-transplant I began having a terrible sore throat. I assumed I had strep throat so I asked transplant if I could go to my primary doctor in my town and get a strep test done. It came back negative; they thought I had thrush or tonsillitis. My transplant team decided that I should see my ENT so he could examine my throat. I remember him saying he didn’t think it was cancer because it was such a short time post-transplant and that if someone is diagnosed with cancer post-transplant, it would usually be many years out. I was still really worried that it was cancer—I couldn’t even swallow my saliva and the pain was so intense. It felt like sharp needles were stabbing the back of my throat.  

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One night it got so bad that my mom drove me to the ER at Columbia where I was admitted and had a biopsy done. A few days later after I was discharged, my transplant doctor called and said that I had PTLD (post-transplant lymphoproliferative disorder). I had cancer. I couldn’t believe it. It was non-Hodgkin’s lymphoma. After being sick my whole life, I finally felt what it feels like to breathe like a normal person and now this. I kept thinking “why me?” You always hear that life is unfair but I felt like this was beyond that; it was almost so surreal that my brain couldn’t even process the thought of it. My transplant team referred me to an oncologist. My parents and I decided I would continue with my cancer care and treatment at Columbia because then they were able to work directly with my transplant team if I needed them or if I had any symptoms that affected my new lungs. 

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I started treatment right away and it consisted of six rounds of 96-hour chemo, meaning I had to be admitted into the bone marrow transplant unit of the hospital and I had 96 hours of straight chemo going into my PICC line. The first round went okay, but after that my blood counts began to drop and I had to get multiple blood transfusions while I was admitted. I also received a shot to stop my menstrual cycle and put me into menopause because I was bleeding so much. Within a very short time on chemo I became neutropenic, meaning my white blood count was dangerously low and my body wouldn’t be able to fight infections of any kind. I could get an infection just from flossing my teeth too aggressively or getting a paper cut.  I had to get daily injections to increase my white blood cell count, which caused severe bone pain. I can remember being in so much pain in between chemo and being at home that I had to go to the ER. I was in agony—even lying down and doing nothing hurt. 

It felt like my back was being electrocuted and the pain shot down my hips and legs. I had to have a bone marrow biopsy so my oncologist could make sure that there were no cancer cells in my bone marrow. While they collected a sample of my bone marrow, they also injected chemo right into my spine in case there was cancer there. I felt overwhelmed and exhausted. The good news was the spot in my throat looked like it was melting away so it responded quickly to the chemo. I lost my hair, my eyebrows, and my eyelashes in addition to gaining about 30 pounds from being on very high doses of steroids. I responded so well to the chemo that my doctor let me do four rounds of 96-hour chemo and then two rounds of IV methotrexate, which was still done inpatient. I ended up being admitted for about a week because they had to wait until the medicine was completely out of my bloodstream to discharge me. My PET scan showed no cancer and I was so ready to heal my body again and get back in the gym. 

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I felt like I was my own nurse and physical therapist at this point. I joined a gym that wasn’t crowded so I was able to clean the machines before and after I used them to prevent any germs. I also started working per diem at a company in the accounting office. It felt so good to be working and be a productive member of society. Unfortunately, I had that feeling again that something was wrong. I kept getting stomach pain at work and I couldn’t figure out why. Eventually my gynecologist found a cyst on my uterus and we scheduled surgery to remove it. It was an easy surgery and I was relieved that it was such an easy fix; however, I still had the stomach pain, which progressively got worse. I went to the ER near my house and they diagnosed me with colitis. 

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I then had both a scan and a colonoscopy done at my transplant hospital because the pain kept worsening. Finally, they saw something on my sigmoid colon and again it turned out to be PTLD—the same type, which was Non-Hodgkin’s Lymphoma. It had returned. I met with my oncologist and we came up with a treatment plan—this time it would be outpatient and consist of two medicines that aren’t considered chemotherapy but are used to treat certain types of cancers. 

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Everything was going fine until I started getting migraines, my left eye started swelling, and I was super sensitive to light. I had to wear sunglasses everywhere and I couldn’t open my right eye either because then my left eye would try to open as well. It was so painful. I found myself back in the ER again and my doctors all agreed it was sinus related and that I needed emergency sinus surgery. 

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My ENT cleaned out my sinuses and eye socket and also sent samples to pathology. He came in my hospital room the next day and I knew by the look on his face that it was cancer. I couldn’t believe this was happening—PTLD, the same non-Hodgkin’s lymphoma in the third place! I really didn’t have time to dwell on it for long before my oncologist came in my room and said we were starting a new chemo regimen right away. He said I could stay on the lung transplant unit and a nurse from the oncology floor would come start it here for me. 

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A nurse came and started the drug and by morning someone found me unconscious—I was immediately rushed to the ICU. When I woke up I saw doctors standing around me, who told me I had a toxic reaction to the chemo drug and I would have to wait for it to get out of my bloodstream and hopefully mentally and physically go back to normal. I couldn’t talk; I couldn’t even spell my own name. It was one of the scariest things I’ve ever been through. I was shaking all over—especially my hands—and I had electrodes all over my head. I had an MRI because the doctors were worried that I had had a seizure but thankfully it was clear.  

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Eventually they released me from the ICU. I went back to the transplant floor, and my speech went back to normal. The scary part was I could no longer receive chemo. So how was I going to survive this cancer? I remember sitting in my room praying to God that they would come up with some kind of treatment. Shortly after that a research doctor visited my room and told my mom and me about a research study using donated cells that are brought to a lab and basically turned into “soldiers that attack the cancer cells” as he explained it to me. 

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There was a huge packet of information that I had to go over and sign to enroll in this study. I wasn’t sure if this was the right thing to do because one of the side effects could be rejection of a transplanted organ. My heart sank when I read that thinking about my donor’s beautifully working lungs. If I didn’t enroll in the research study, I was going to die from cancer. I didn’t have the choice to opt out of the study. This was my last chance at life. I began going to outpatient research study appointments and getting donated cells injected into my PICC line. I wasn’t sure if they were working but the day after an injection I always felt incredibly tired and had more stomach pain than usual so that was my clue that they were doing something. 

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During one cell injection the pain got so bad they gave me IV pain medicine and decided I should be scanned. The scan was shown to a colorectal surgeon who said my colon had been perforated and my body tried to wall it off. This was so strange to everyone since I’m on prednisone, which can affect how the body heals. I needed surgery to fix it, but that meant I would also need a colostomy bag for at least six months so my colon could heal properly. During the surgery a portion of my intestine was removed and a colostomy bag was put in. My surgeon said it looked much worse than he thought; my insides were stuck together and my intestines had to be pulled apart. I don’t remember much because I woke up in agony. I got IV pain medicine around the clock and I told my mom the pain was so bad that I didn’t want to be alive anymore. I was brought to the bone marrow transplant unit, which was basically my second home now. 

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The nurses taught me how to change my colostomy bag and there was a whole process to putting it together that resembled an arts and crafts project. I was in disbelief that this was my life. Things were happening way too fast and I was just in awe that a few weeks ago I was diagnosed with colitis when it was actually cancer. I was trying to see the good in the situation—any glimmer of hope that would help me get through these next few months with this colostomy bag. The best thing about being chronically ill is that you see firsthand how resilient you are; you see pictures of yourself from when you’re in the thick of an illness and then you see yourself years later and realize how much your body is able to heal. I got my colostomy bag reversed six months later; the cell therapy worked and put me in remission. I’ve been in remission since 2018 and I’m so thankful for my family, friends, and all the healthcare professionals who who helped me cope with the many treatments and surgeries to get me where I am today 

If there’s one thing I have learned from having cancer it is to always be your own advocate. If you think your doctor is missing something, get a second, third, or even fourth opinion. Also, just because something is statistically unlikely doesn’t mean that it shouldn’t be looked into as a possibility. You know your body and you know when something feels off. 

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For the next year I was neutropenic and had to give myself injections every day to raise my white blood cell count. I lived with chronic bone pain and was getting frequent sinus and throat infections. My sinuses were completely clogged with thick mucus and my throat was so red and inflamed that I had to spit out my saliva rather than trying to swallow because it was so painful. I had fevers often and I couldn’t sleep because of the pain. I went to the ER near my town and they admitted me for IV antibiotics, fluids, and pain meds. About a year later, my white blood cell count had recovered and I was able to slowly stop my injections. I haven’t had a throat infection since so they must have been linked to being neutropenic. 

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My eighth lung transplant anniversary was on July 17, 2023. I feel beyond grateful to still be alive and have my donor’s lungs but, at the same time, I feel a deep sense of guilt. I feel guilty because many of my CF peers have passed away in these eight years, many of whom I became close with and who were younger than me and weren’t able to experience as much in life as I have. I feel blessed that I was able to have a somewhat normal life while my CF was manageable. My own lungs lasted me 25 years; I was able to graduate with a college degree and get into the graduate program of my choice. I have a lot of limitations now and I often feel overwhelmed by my health issues but I’m so lucky to have amazing family, friends, and the best parents I could ever ask for who make me feel so seen, loved, and supported. 

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Ever since my colostomy bag reversal it’s been hard for me to eat and go to the bathroom without pain. I used to love trying new restaurants and new food and it was something I really enjoyed but now I have to be strategic when I eat, and I try to eat things that I know won’t upset my stomach as much as others. It’s been a long journey and I’ve felt a lot of judgment from certain doctors and nurses because of the stigma of pain medication. I’ve been talked down to and denied pain meds multiple times, but I have the best transplant and palliative care doctor who understands my stomach pain and how I want to have the best quality of life that I can. I’ve been on palliative care since around 2019 and I have a set pain medicine regimen for when I’m home and when I’m in the hospital. I think, because of the way I look, those who don’t know my story may not understand why I need pain meds or they might think I’m not in pain and just drug seeking. 

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I’ve suffered from blockages since I was little and needed surgery for a twisted bowel when I was six. I was diagnosed with distal intestinal obstructive syndrome (DIOS) in 2012, which is when thickened stool blocks the small intestine. I’ve been admitted many times for blockages. During my treatment for lymphoma in my colon, I suffered from severe pain, especially after the reversal of my colostomy bag. My palliative care doctor explained that this is the result of scar tissue. When I’m on antibiotics the pain gets a lot worse, especially after eating. Some of my nurses don’t understand my pain and they wonder why I don’t eat much while I’m admitted. I try to eat bland food so I stay away from the hospital food and usually eat cereal, bagels, yogurt, and peanut butter and jelly sandwiches. I have constant diarrhea when I’m on antibiotics so I’m often in the bathroom for long periods of time and going to the bathroom can be very painful. I’m on high doses of pain medicine because I’ve been on them for so long that my body has become tolerant and pain is harder to treat and prevent. I’ve had to leave social events early, including the wedding of one of my best friends, because of my stomach pain. My family and friends know when I’m starting to have pain by just looking at my face. I will bring medicine with me for breakthrough pain if I know I’ll be eating or if I’m on antibiotics. There is definitely a stigma associated with pain medicine; it’s unfortunate that, because of those who abuse it, the ones who actually need it get judged or looked down upon. 

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I still struggle with sinus symptoms and my scans show that my sinuses are always inflamed which my doctors say is from PTLD being in that area. I started taking the CF modulator called Trikafta in the summer of 2020 it has definitely helped some of my CF symptoms. Even though I don’t have CF lungs anymore, my other organs are still affected. Since I began Trikafta I’ve gained weight, which means I’m absorbing my food better; my stools are less greasy; I don’t sweat salt; I have way more energy; my ENT says my sinuses look better; and I haven’t had polyps in my sinuses since I started taking Trikafta. 

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Unfortunately, the negatives of this drug are all mental for me. Everything I’ve been through has made me a very anxious person but, since starting Trikafta, my anxiety is much worse. It’s hard for me to concentrate on anything and, instead of feeling sad sometimes, I feel a lonely and empty feeling deep inside at all times that I can only describe as depression. I’ve talked to many of my CF peers who also feel this way on the drug. Like any drug there are always pros and cons, but it’s very hard to suffer from depression while constantly having to take care of yourself and stay on top of medicines, doctors’ appointments, exercising, and eating, as well as frequent hospitalizations, procedures, and surgeries, when you don’t feel good. 

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My CF clinic has hired a psychiatrist and has weekly therapy for patients, which has really helped me develop coping skills for my anxiety. I’m still processing a lot of trauma from being in the hospital so much, especially in the ICU and on a ventilator. I had sepsis in 2020 and almost died—I was rushed to the hospital in an ambulance. My blood pressure was extremely low. I had pneumonia in my lungs, and the only way for me to survive was to be intubated. The doctor told my mom that they might have to put me in a medically induced coma but thankfully that didn’t happen; I was intubated and put on IV antibiotics. The hardest thing about what happened was hearing everything and everyone around me but I was unable to move or open my eyes. I remember everything that was said and how I felt and I was scared to sleep for a long time after. 

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I was diagnosed with diabetes after my colostomy bag reversal. I had to learn how to check my blood sugar and give myself insulin injections. Because CF affects the pancreas, many of my CF peers have had diabetes their whole lives, except for those who usually get diagnosed after transplant from being on steroids. This was a huge change for me because I always ate whatever I wanted without even thinking about it. My diet has changed from eating as many carbohydrates and calories as possible to learning how to count carbs in the hospital and limit things like soda and dessert. 

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Now, to manage the diabetes, I use a sliding scale for my Humalog, which is short-acting insulin that I take with meals and I have a standing dose of 12 units of Lantus, which is long-acting insulin at bedtime. Having diabetes was one of the hardest things for me to get used to, and I still struggle to remember to check my sugars before I eat and when I’m out with friends as sometimes it’s hard to want to give myself insulin in a public place. This is when I rely on CF friends to help me navigate my diabetes in the best way. The CF community is so supportive and offers such a wealth of information. I’ve met so many of my CF peers on Facebook and in person at transplant clinic and it’s these friends whose advice I seek often and with whom I can vent my frustrations. It’s crucial for me to have people in my life who understand firsthand what I’m feeling. It helps ease my anxiety when I can talk to someone who has already been through it about a new medicine or procedure. Since I was diagnosed while inpatient, I never really had an endocrinologist, but I’m now looking into one to discuss the best way to monitor my blood sugar. The new diabetic technology is truly amazing! Things like the Omnipod, which is a wireless insulin pump that you can even swim with, makes managing diabetes so much easier. This is something I want to discuss with my endocrinologist to try to make my life easier and make sure my blood sugar is being managed at all times. 

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On my birthday this year I felt like I was numb the entire day. How am I alive? I tend to joke about that a lot because I’ve realized if I’m not laughing about it then I’m crying my eyes out. The truth is dying scares me a lot—I love my life, despite how hard and painful it can be. I’ve had to give up a lot and that often makes me bitter and extremely jealous of my peers. I had to give up earning my master’s degree, a career, having children, and a lot of my independence since I can’t drive on my pain medicine and I live with my parents since I’m on disability. The one thing that having a chronic illness has taught me is to cherish every little thing and that the little things really are the big things. It also taught me to appreciate every single day that I’m able to wake up in the morning. My therapist taught me that I could be both angry at my illness but also feel extremely blessed and appreciative of my new lungs and my life in general.  

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I’m just trying to take it day by day and not worry about what the future holds. Regardless of what happens I’m going to keep fighting for my health so I can keep making memories with the people I love. 

Jenna Strickland has CF and is 34 years old. She lives in Stratford, Connecticut. She had a double lung transplant on July 17, 2015. You can contact her at Stricklandjr2@gmail.com. Some of her favorite things are cooking, working out, barre and Pilates classes, her dog Lilly, spending time with friends and family, watching HGTV, and anything involving fashion.

Ask the attorney:
Social Security Benefit Overpayments—Part II

 By Beth Sufian, J.D.

In the last issue of CF Roundtable, this column discussed Social Security Administration (SSA) overpayments and some common causes of overpayments. In this issue, the column will provide information about what happens after an overpayment occurs. Nothing in this column is meant to be legal advice and is only meant to be legal information. SSA rules and regulations can change, and the following column provides information related to SSA rules in effect as of December 2023.

If you have questions, you can contact the CF Legal Information Hotline at CFLegal@sufianpassamano.com. The CFLIH is sponsored by the CF Foundation. Employees of the CFLIH are not employees of the CF Foundation. All contacts to the CFLIH are confidential and there is no cost to the caller.  The CFLIH can also provide information related to Social Security benefit eligibility, applications, and Continuing Disability Reviews, as well as education and employment rights and access to health insurance issues.

I.
Notice of Overpayment.

An overpayment is simply a payment from Social Security to a beneficiary over the amount the beneficiary is due to receive. When an overpayment occurs, the Social Security Administration (SSA) will calculate the amount overpaid and will send a notice of overpayment to the beneficiary or to the beneficiary’s representative payee. The notice of overpayment ordinarily includes:

1. The amount of the overpayment; 

2. The reason for the overpayment; and 

3. Repayment options.

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Usually, the notice of overpayment will include information on how to appeal an overpayment or request a waiver of overpayment. However, some notices of overpayment make a demand for repayment without instructions on how to appeal or request a waiver. The description of how the overpayment was calculated is important to understanding whether the amount of an overpayment claimed can be successfully challenged by an appeal or a waiver.

II.
Dealing with an Overpayment.

Generally, there are three ways to deal with a notice of overpayment: (1) an appeal; (2) a request for waiver; or (3) repayment.

A. Appealing an Overpayment.

Appeals must be filed timely within the time limit set out in the SSA Notice of Overpayment. The time limit on filing an appeal is one of the most important aspects of any appeal. Generally, a beneficiary (or their representative payee) has only 60 days from the date the notice of overpayment is received to file an appeal. The SSA assumes the addressee receives a notice within five days after the date stated on the notice. If the last day to appeal is a Saturday, Sunday, or national holiday, Social Security usually accepts an appeal on the next regular business day. If the beneficiary does not file their appeal within the 60-daytime limit, the right to appeal may be lost and the decision made by Social Security becomes final. 

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The consequence of a final decision is that the beneficiary: (1) can no longer challenge the reasons for the overpayment; (2) can no longer challenge the amount of the overpayment; and (3) may lose the opportunity to have a hearing by the administrative law judge and the SSA appeals council. Occasionally, Social Security will grant additional time to file an appeal if the beneficiary can show good cause for not filing an appeal within the 60-daytime limit. A request for more time must be made to Social Security in writing, stating the reason an appeal was not timely filed; however, a request for additional time must show a good cause. Social Security may deny a request for additional time if SSA determines the request fails to state a good reason for the delay in filing the appeal.

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A beneficiary who disagrees with the reasons or the amount stated in the notice of overpayment may appeal the determination of overpayment. Social Security also refers to an appeal as a request for reconsideration. Appeals must be filed within the required time limits and must be in writing. There are several ways to file an appeal of an overpayment. An appeal can be filed in person at a local SSA office provided it is in writing and timely filed. The SSA has a form to make a written appeal. The SSA may say the form is not required but it is best to use the form. The forms are available online. An appeal may also be requested online at www.ssa.gov/benefits/disability/appeal.html. Generally, in an appeal, Social Security needs information that shows that the reason stated in its notice of overpayment is incorrect or that the calculation made to determine the amount of overpayment is incorrect.

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In a recent case, some unknown person improperly reported wages using a person’s Social Security number. Looking at the reported income, Social Security assumed the beneficiary had returned to work and issued a notice of overpayment based on the improperly reported wages. In the appeal, the beneficiary showed that he had not actually returned to work and that the reported wages were not actually paid to him. This is an example of an appeal that successfully showed that the reasons SSA stated for the overpayment were incorrect.

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In another case, SSA claimed that a beneficiary’s earnings were just over the allowable amount of earnings. On appeal, the beneficiary showed that he had work-related expenses that Social Security failed to deduct from its earnings calculation. When SSA considered the work-related expenses, its recalculation showed that the beneficiary had not exceeded the earning limits and no overpayment was owed. SSA will stop recovering the overpayment from the beneficiaries SSI or SSDI payment while the appeal decision is pending. However, sometimes Social Security does try to have the SSA recipient make a payment plan to pay small amounts each month toward reducing the overpayment. 

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B. Requesting a Waiver of Overpayment.

Requesting a waiver of the overpayment is another way to avoid paying the amount of overpayment claimed by Social Security, which is separate from an appeal. A waiver is not a direct challenge to whether the overpayment is correct. Rather, a waiver is a request that Social Security not collect an overpayment that is determined to be due.

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In a request for a waiver of an overpayment, the beneficiary asserts that (even though the amount of overpayment is correct), he/she was not at fault for causing the overpayment and the collection of the overpayment would cause financial hardship on him/her. Generally, there is no time limit for filing a request for a waiver of an overpayment.

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A beneficiary may submit a waiver form (SSA-632-BK) to the SSA. If the amount of the overpayment is $1000 or less, SSA may grant the waiver request after an in-person visit to the local SSA office or a telephone interview with the beneficiary, without requiring the beneficiary to file a completed request for a waiver form. However, it is best to submit a written request for a waiver so there is proof a person has requested a waiver. A waiver is usually only granted upon showing evidence of financial hardship and that the overpayment was not due to any fault of the beneficiary. 

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Hardship usually requires evidence of genuine hardship rather than an inconvenience. For example, evidence of the absence of financial resources or even the risk of homelessness if the overpayment were collected may be good evidence of financial hardship.

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C. Repayment.

If an appeal or request for waiver of an overpayment is unsuccessful, the beneficiary will have to repay the overpayment. A person can request a payment plan and Social Security will determine how much a person can pay each month toward paying back the overpayment. In most cases, Social Security will come to an agreement of a reasonable amount for the person to pay back each month, based on the person’s monthly income form benefits or work earnings, even if it will take a long time to pay back the overpayment.

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1. Repayment from Current Benefit Payments.

When a beneficiary is continuing to receive benefit payments, Social Security will typically collect an overpayment by withholding all or part of a current benefit payment due until the whole overpayment is collected. Withholding all of a current monthly benefit payment to recover an overpayment can cause a financial hardship for many people, especially if the overpayment is large and would take several years to repay. However, Social Security is usually willing to arrange a payment plan to recover an overpayment. The actual amount of withholding under a repayment plan depends on the individual case.

Withholding 10% of the monthly benefit is usually agreeable to Social Security. However, even 10% of the monthly benefit can cause a financial hardship—especially for SSI beneficiaries. If a withholding of 10% of the monthly benefit causes a financial hardship, the beneficiary can request a repayment plan that is reasonable under the circumstances, but the monthly repayment plan withholding cannot be less than $10 per month.

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2. Repayment When No Longer Receiving Current Benefit Payments.

The SSA will attempt to recover an overpayment even if the beneficiary is no longer receiving a monthly benefit payment. In the absence of a repayment plan, Social Security can seek to recover the whole amount of the overpayment by other mechanisms, including attaching IRS tax refunds and garnishing wages.

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D. Ways to Avoid Overpayments.

1. Reporting Changes in Income.

One way to avoid overpayments is promptly reporting changes in income to the SSA. A beneficiary—either an SSI and SSDI beneficiary—should inform SSA when they begin work or return to work.

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SSDI beneficiaries can report their work earnings to their local SSA field office by phone, or by presenting copies of their pay stubs to their local SSA office. SSA also has an online system for SSDI beneficiaries reporting monthly earnings called MyWageReport. SSI beneficiaries can also mail or bring copies of their pay stubs to their local SSA field office during the first six days of the month. The Social Security Administration has separate automated wage reporting tools for SSI beneficiaries, such as:

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a. SSI Telephone Wage Reporting (SSITWR) System;

b. SSI Mobile Wage Reporting (SSIMWR) application, which allows a beneficiary to report the total gross monthly wages for the prior month using an Apple or Android mobile device; and 

c. MyWageReport, which allows beneficiaries to report their monthly earnings online with their online Social Security account. Regardless of which method an SSI or SSDI beneficiary chooses to report wages, the beneficiary can sign up online to receive monthly e-mail or text message wage-reporting reminders.

2. Reporting Changes in Living Situation or Marital Status.

SSI beneficiaries can also avoid overpayments by reporting changes in living situation or marital status as soon as they occur. Changes to living situation or marital status can affect the SSI payment amount due to a beneficiary, but do not affect SSDI payments. 

Beth Sufian is 58 years old and has CF. She is an attorney who focuses her law practice on disability law and is the Vice President of USACFA. Her contact information is on page 2. You may contact her with your legal questions about CF-related issues at CFLegal@sufianpassamano.com.

Salty parenting:
The Sandwich Generation—
A Salty club sandwich

By katherine lockwood

Many people with cystic fibrosis are living longer and having children. We’re entering a new phase of life with challenges arising that we just didn’t expect. In case you are unfamiliar with the term sandwich generation, it represents those who are caregivers for both aging relatives and children at the same time. For those of us lucky enough to have had loving and supportive parents who are still with us, we may need to consider that our aging relatives may need our help in the future. 

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Statistically, when a child is born with a disability, the parents’ likelihood of divorce is dramatically increased and, 40 percent of the time, one parent either quits their job or reduces their hours to become the full-time caregiver, which is usually the mama1. These two factors can have devastating effects financially and, while it is common in many households for one parent’s career to take a backseat while raising young children, that is generally only temporary. When a child is disabled, it is more likely to be a permanent shift. 

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When you have children there are many costs, and raising children with disabilities is especially expensive and time consuming. Our community faces unique characteristics that may exacerbate this. As both a person with CF and a mother to children with their own medical needs and disabilities, I see firsthand the five to ten plus hours per week that I spend scheduling and attending appointments for my wonderful babies on top of my own care, and the five plus hours a week I spend arguing on the phone with insurance/pharmacy/doctors on repeat. Adding in my needs as an adult who has CF turns a regular sandwich of care into a club with three pieces of bread.

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As someone who assumed I would not outlive my loved ones, this shift feels a bit unsettling. Planning for long-term care, accompanying my parents to their doctor appointments, advocating for their needs, assisting with errands, and supporting them through their aging process, while also raising my children and caring for myself, is an adventure that I am both nervous and so honored to be a part of. I have had the privilege of learning how to do so from the very best—the parents of a CF patient. 

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1Uribe-Morales BM, Cantero-Garlito PA, Cipriano-Crespo C. Fathers in the Care of Children with Disabilities: An Exploratory Qualitative Study. Healthcare (Basel). 2021 Dec 22;10(1):14. doi: 10.3390/healthcare10010014. PMID: 35052178; PMCID: PMC8775232.

Katherine Lockwood is 35 years old and has CF. She lives on Cape Cod with her husband Arden and her girls, Rose and Magnolia. She is a therapist for Verge Therapy and focuses on supporting individuals and couples experiencing disability in the family. She is the author of Why Me, Mama?, an award-winning children’s book about the disability experience. She is currently working on two picture book projects: Salt & Roses—supporting families when a parent has cystic fibrosis—and OUCH! OOPS! & OH NO!, a set of three books to support pre-k to third graders in reducing bullying. You can follow Katie’s picture book projects at acorncottagepress.com and on Instagram @acorn_cottage_press.