RESPONDING TO REQUESTS FOR HELP
TIPS FROM A PSCer and
HER CAREGIVER HUSBAND
“Just let me know what I can do to help.” – a phrase we’ve all heard or even said to someone going through a trying time. Oftentimes, that statement adds extra stress to the person who needs the help. They might not know how to respond or feel compelled to say anything to make the friend or family member feel helpful. The end goal isn’t to add an extra burden – but rather to provide meaningful help. There are a few different scenarios that you might encounter as a patient or caregiver, and we’ve provided tips on how to handle each situation below.
You could use some help. Don’t be afraid to take people up on their offers to help. They are asking because they really do want to do anything they can for you, and don’t feel like you owe them anything. A good start is to sit down and create a list of things that could be “outsourced”. There are many things that could be done by a family member or friend. Keep a running list of errands or tasks that could be done by someone else. It will make the friend/family member feel helpful, and checks things off your ever-growing to-do list! Examples of tasks that could be outsourced are things like:
- Grocery shopping
- Running to the hardware store to pick up something (lightbulbs, etc.)
- Dropping off and picking up laundry
- Meal preparation / meal train
- Playdates for the kids
- Checking on pets
- Driving to and from appointments
- Being an advocate for you in appointments or with paperwork (this requires a close relationship as personal information would need to be shared)
Every time someone asks what they can do to help, send them something from the list. It may take them 10 minutes to do, and they will feel helpful doing it. They know that you would willingly do the same for them if the roles were reversed. If the list becomes too much to manage on your own, ask your caregiver to manage the list for you and send out tasks as they feel appropriate.
You have enough help, but people keep asking. Some people are blessed to have many friends and family members close by to help with everything they need. Things may be under control, but people always want to help. Perhaps the neighbor next door might ask what they can do to help. A quick explanation of the family members/friends that are around to help you will diffuse the immediate ask. Saying something like, “Thanks so much for the offer, but I’ve been so lucky to have my parents/friends around to help with everything I need at the moment. I’ll be sure to reach out should anything come up.” Or, send them something from the task list.
You don’t actually need help. Although dealing with a chronic illness is draining, sometimes getting out and doing things for yourself keeps you going physically and mentally. If someone asks what they can do to help, but you don’t actually feel like you need help, you could say something like, “Thanks so much for the offer. I’ve had a hard time staying hopeful during the harder days, so I would love your prayers,” or ask for a donation to PSC Partners by saying something like, “Thanks so much for your offer, but I’m getting by just fine, currently. However, some others in the same situation as me aren’t doing as well. If you’d like to help us all, donating to PSC Partners would be very much appreciated.”
Blog written by Tyler and Nicola Tessier
Nicola and Tyler Tessier reside just outside of Boston with their two young (and active!) boys. Nicola received a life-saving living donor liver transplant from her brother nine years ago and is doing well. When not advocating for organ donation and a cure for PSC, you can find them both working in the marketing industry.
PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast will explore the latest research and knowledge about PSC. From patient stories, to the latest research updates from PSC experts, to collaborations that are necessary to find better treatments and a cure, this podcast has it all!
In the 12th episode of Living with PSC, Niall McKay discusses living donor liver transplants and PSC with John Crowley, whose brother was his living donor.
Q & A with Winning Athlete & PSC Patient Yvette Matthews
For this month’s blog, we would like to introduce you to Yvette Matthews. Yvette was diagnosed with PSC in 2001, and received a liver transplant in 2013. Prior to her diagnosis, Yvette was a college athlete and a semi-pro beach volleyball player. So, understandably, her PSC diagnosis came as a complete shock, like it does for many in our community. Yvette’s health eventually began to decline, and, after many years of living with the complications of PSC, she received a transplant. Within a year after her surgery, Yvette was slowly able to regain the strength and spirit to train once more for competition. She successfully competed in her first Transplant Games in 2014. She has been to several Transplant Games since, and is now competing in the National Senior Games as well. Yvette has been an active volunteer for PSC Partners and has attended several of our conferences over the years, always bringing her vivacious spirit and energy to the event. Yvette also has been a key advocate for organ donation.
We were excited to chat with her on the phone last week and talk to her about her PSC diagnosis, competition, liver transplants, and more.
Q: Describe your life before your diagnosis with PSC?
A: I was really healthy and working out. I played little league softball and enjoyed riding my bike. I was a college athlete at UMBC where I competed in basketball, hockey, and lacrosse. I was a semi-pro beach volleyball player.
Q: Tell us about your diagnosis and experience with PSC.
A: I was diagnosed in 2001 at a routine physical. My liver enzymes came back elevated. I felt fine, and I had no symptoms, so I literally ignored it. I was 100% sure the doctors were wrong.
After several years, I started to feel like I was slowing down. The fatigue continued to increase, and I started to develop fluid in my abdomen, which needed to be drained every week. I was just super tired. I didn’t realize until after my transplant how tired I was.
Q: After your transplant, did you ever think you would compete again?
A: No. I thought I would get my transplant, be alive, and that would be about it. I assumed that was the way it was. A few months after my transplant, I attended my niece’s wedding in Baltimore. That’s when I started believing that I could do stuff. That event pulled me out of it, and I started working out, again. I don’t remember how I found out about the National Transplant Games, but I started going to meetings and to train for it. In the summer of 2014, I competed in my first National Transplant Games and won nine medals. I was so happy, excited, and motivated. Since then, I have competed in three more National Transplant Games and one World Transplant Games.
Q: What does competing again mean for you?
A: Personally, getting back into competition makes me feel alive. It is something that has always been a part of me, and it was missing for a while. Being at these games and getting to meet everyone, from the competitors to the family members of donors, is so uplifting. It’s almost like going to the (PSC Partners) conferences.
Q: How are you feeling today?
A: I feel pretty good. I get tired sometimes. I don’t have the stamina that I used to, and sometimes I have to force myself to lie down, but, overall, I’m really feeling good.
Q: What is ahead for you?
A: I have qualified for the long jump in the National Senior Games this June in New Mexico, and I am competing in the World Transplant Games in Newcastle, England this fall.
Thanks for sharing your remarkable journey with us, Yvette. We wish you the best of luck in your upcoming competitions!
Everyone is exhausted at some point or another but for people with chronic conditions, such as ulcerative colitis (UC) and primary sclerosing cholangitis (PSC), it’s common for malaise to set in more frequently. When you’re exhausted, it’s challenging to opt for nutritious foods that often require more prep work and cooking even though these are the times when you likely require good nutrition the most. Preparing for the days when you’re too tired to grocery shop and cook elaborate meals will allow you to eat nutritious foods, even on the most challenging of days. Below are some tips to make grocery shopping, prepping and cooking nutritious foods easier for the days when your exhausted.
6 Tips for Boosting Your Energy:
- Register for online food delivery. Most grocery stores deliver but if yours doesn’t, use a national online option, such as Amazon, Peapod, or Instacart. This way, you will save the energy you would’ve used walking around grocery shopping and carrying the groceries back home.
- Eat small, frequent, snack-sized meals instead of large, spaced out meals. It takes less effort to prep, cook and eat smaller meals.
- Drink plenty of water. Fatigue is one of the first signs of dehydration and people with UC are at an increased risk of dehydration due to fluid loss from loose stools. How much water should you drink? Aim for at least half of your weight in ounces (eg. for a 140 pound person, try drinking at least 70 ounces of water, which is approximately 9 x 8-ounce cups of water).
- Avoid snacking on sugary drinks and snacks. These foods might give you an initial burst of energy but they will leave you feeling even more sluggish later on. Instead, choose foods high in complex carbohydrates, such as fruits, vegetables, beans, lentils and whole grains.
- Eat more fruits and vegetables that are vibrant in color to provide vital nutrients your body requires.
- Take a multivitamin. Those at risk for nutritional deficiencies, like people with UC and PSC, are recommended to take a daily multivitamin which becomes increasingly important if you are not already consuming a well-balanced diet.
8 Meal Planning Tips for When You’re Exhausted:
- Sit in a chair while your chopping/prepping food to reduce effort from standing.
- On days you’re feeling better, freeze your leftovers and place them into freezer-friendly bags in single portions so whenever you’re feeling tired and not up for cooking, you can simply grab a meal that sounds tasty and reheat it. Just remember to date and label them so you know what you’re eating and when it’s time to throw it out.
- To minimize time spent cooking, purchase fresh or frozen pre-cut veggies. When you’re too tired to grocery shop for fresh veggies, frozen vegetables are great to have on hand to throw a quick meal together.
- Use parchment paper or aluminum foil on a cookie sheet and bake your entire meal on it. Instead of cleaning multiple pots and pans, you’ll only need to throw out the paper/foil, saving you time and energy on your post dinner clean up.
- Invest in a slow cooker. Slow cookers safely cook your meal over a 4-8 hour period, so you don’t need to constantly be stirring or checking on your food while it’s cooking.
- Cook in bulk for the week so that you only have to cook once or twice. Minimizing the amount of times you need to stand prepping and cooking your meals will decrease your overall effect required.
- Use a pressure cooker to cook your meal in just a few minutes. Pressure cookers speed up the cooking process so you don’t need to stand up waiting for your meal to cook.
- Make a grocery list of your favorite quick nutritious snacks and meals to always have stocked for the days you’re feeling extra tired.
Another option to consider is to ask a loved one for help. While it can sometimes be challenging to lean on others in times of struggle, it’s important to realize that you have a support system around you for these exact moments. Put yourself in their shoes -if one of your family members or friends was exhausted and couldn’t muster up the energy to make dinner, you would probably be happy to bring them over some food and to boot, it would probably make you feel great about being able to help them out. Your friends and family see the struggles that you are going through and would likely be more than willing to help you out with a meal or two.
How To Eat When You’re Exhausted: Part 2 is coming soon and will include some quick and nutritious meal and snack ideas so stay tuned!
Eat well, be well,
Brittany Roman-Green is a licensed dietitian nutritionist and certified personal trainer. She is the owner of her private practice in Boston, Massachusetts and specializes in gut and liver conditions.
I look at my daughter’s picture, a radiant face, a smile so cheerful that it holds no clue of the horrific battle she is still undergoing with PSC. On her pink cheeks and twinkling eyes there is no sign of the pain, fear, and fight that are gnawing her every day. This is my beautiful hero, in her moment of respite, elevating herself beyond her pain for the cause she believes in.
Our story with PSC is no ordinary story, though no PSC story is ordinary. During her freshman year in high school, my sweet and always positive daughter, Hayley Rose Eno, was diagnosed with PSC and ulcerative colitis. She started her PSC journey with the intense symptoms of final stage PSC. She suffered extreme back pain and vomited blood. Doctors discovered that she had portal hypertension which meant the large veins in her esophagus were under pressure (varices) and were causing the bleeding. She already had cirrhosis! She went on to have numerous “bandings” of the varices over the following eight months, about ten procedures in all, to try to stop the bleeding. Her health continued to deteriorate until she needed to have a full liver transplant in December 2016, a week before Christmas.
Her recovery was dotted with a few episodes of mild rejection. After some time, Hayley finally began to feel better. Unfortunately, this period of wellness did not last long. The intense back pain re-emerged in April and she couldn’t eat without extreme abdominal pain. After a few trips back to the doctor who explained it away as “constipation,” we found ourselves back in the emergency room in the beginning of May. We soon found out she had post-transplant lymphoproliferative disorder, or PTLD, a type of lymphoma, and cancer. She had cancerous lesions on her liver, in her stomach and intestines. She had to undergo six rounds of chemotherapy that began at the end of May and ended in August. Doctors say her scans are now “clean.” They are still closely monitoring her and working to find the right levels of immunosuppression for her.
Hayley dreamed of holding a fundraiser to help in part with our expenses and to help others affected with PSC. I had discovered PSC Partners Seeking a Cure through Facebook shortly after her PSC diagnosis. I had found everyone in this community extremely helpful and understanding of the huge problems we faced with PSC. That is what motivated and inspired Hayley to take action. Over this past summer, the hair salon Hayley went to since she was a little girl, Barbara Ross Hairstylists, offered to hold a fundraiser for her on September 24th. This was precisely the positive outlet she needed. She designed shirts, hats and rubber bracelets with the logo, “Fight Like Hayley.” Barbara, the owner of the salon, donated the day’s proceeds for haircuts, blowouts and hair extensions to Hayley. There were also many baskets that the staff and some friends had put together to raffle off. A make-up artist was waiting for her when she walked into the hair salon that morning. The results are clear in her pictures. She looked so beautiful and happy! At the end of the day, she and her friends at the hair salon had raised $1,390 for PSC Partners Seeking a Cure’s research program! That’s my Hayley: She rose above her pain to help all PSCers.
If you have any thoughts to share with Stacey and Hayley, please feel free to do so in the comment section below.
Dear PSC Community,
We are excited to announce the launch of our Annual Giving Campaign! PSC Partners’ annual giving campaign is a vital part of keeping the important work we do moving forward. Your support is critical for continuing the momentum that has been building the last couple of years.
As I look back on our first fourteen years as an organization, I am thrilled to see the huge increase of interest in solving the mystery of PSC and the number of valuable collaborations that are being created. We knew from the start that to make our voices heard in the medical world and among PSC patients and their families, we would need to connect with the major centers treating PSC patients. Our vision was to create both a strong medical network and an engaged patient community and to encourage collaboration between the two groups.
This year has been particularly exciting for our community. It is wonderful to see researchers sharing data internationally, which will speed up the pace of research. One of the outcomes of the 2016 FDA/AASLD workshop on Trial Design and Endpoints for Clinical Trials, where I met Dr. Veronica Miller, Executive Director of the Forum for Collaborative Research, was the launch of the PSC Forum at this year’s EASL meeting in Amsterdam. Additionally, there are a number of ongoing early phase clinical trials and registries to help motivate research, and we are beginning to have a better understanding of the pathophysiology of PSC.
There is no question that interest in solving the “black box” of PSC is gaining momentum across stakeholder lines. The creation of the PSC Forum and our integral involvement with this group is giving us much to be optimistic about. However, there is much work to be done to meet our community’s unmet needs. The good news is that we now have the attention of all the right stakeholders including: researchers, clinicians, pharmaceuticals and regulators. Now, more than ever, we need your continued support to maintain our momentum and find a cure!
Over the next month, we will be sharing information and asking for your support to ensure we can continue to provide education and support for patients and caregivers, grow our patient registry and fund the research that is so critical to finding better treatments and a cure. To kick off the season, we’ve created an annual giving page where you can learn more about our accomplishments this year, where we’re headed and how you can support our continued success.
Our success lies in our community’s ability to not only donate to keep our momentum going, but also to spread the word.
We are optimistic about a future with better treatments for primary sclerosing cholangitis and thank you in advance for your support!
Founder and CEO
Each year, PSC Partners asks research grant awardees to share a layman’s summary as part of the process for accepting the grant. We are excited to share the 2017 PSC-related research grant summaries with you! In order to make this information more digestible and shine a light on each individual study, we will share one summary per week until we’ve shared the details for all of them. Please feel free to add your comments or thoughts at the bottom of each of these summaries for the researchers!
Title: Exploring the PSC Matrisome: Discovery of Serum Biomarkers for the Stratification and Classification of Patients with Primary Sclerosing Cholangitis
Principal Investigator: Massimo Pinzani, MD, PhD, FRCP, Professor of Medicine and Director of the University College London (UCL), Institute of Liver and Digestive Health (ILDH), Sheila Sherlock Chair of Hepatology, London, UK
Primary sclerosing cholangitis (PSC) is a disease affecting biliary ducts through which the bile flows from the liver into the intestine to ensure key digestive tasks. PSC is characterized by progressive scarring around the bile duct leading to obstruction and accumulation of bile in the liver. With time, scarring and fibrosis involve more and more portions of the liver causing cirrhosis and liver function insufficiency. Importantly, PSC is a silent disease and it is often discovered when the disease is already advanced. Also, when the disease is diagnosed in an early phase it is extremely difficult to establish the stage of disease evolution without performing a liver biopsy. This causes many difficulties in the management of patients with PSC and greatly hampers the possibility of efficient clinical trials with drugs specifically designed for this liver disease. Our laboratory has proposed a new technology based on the analysis of the scarring tissue obtained from the liver of patients with PSC. We have discovered that some proteins are specific from the scarring tissue of PSC and have an extremely good correlation with the disease stage. The presence and the amount of these proteins could be tested with a simple blood test and therefore become a diagnostic biomarker. The funding provided by PSC Partners will be used to support our efforts to further characterize these biomarkers and perform a clinical validation in our cohort of patients of PSC.
Each year, PSC Partners asks research grant awardees to share a lay summary as part of our grant process. In order to make this information more digestible and shine a light on each individual study, we will share a summary each week (in alphabetical order of the Principal Investigator’s last names). We welcome your comments or thoughts for the researchers at the bottom of each of these blog posts, and are excited to share this new PSC-related research with you!
Title: Dissecting the Genomic Variants of PSC Outcomes
Konstantinos Lazaridis, MD, Consultant Gastoenterology and Hepatology, Professor of Medicine, Mayo Clinic College of Medicine
Professor Tom Hemming Karlsen, MD, Department of Transplantation Medicine, Division of Surgery, Inflammatory Medicine and Transplantation, Oslo University Hospital, Rikshospitalet
Brief Lay Summary of Study:
Primary sclerosing cholangitis (PSC) is a heterogeneous disease with variable outcomes. At the present time, we are unable to distinguish which patients will rapidly progress to a poor outcome (i.e., need for liver transplant, development of cholangiocarcinoma etc) from those likely to experience a relatively benign disease course. Our research into PSC over the last 5 years has significantly advanced the field and has begun to characterize the genetic predisposing elements underlying the disease development. However, we lack studies about the importance of genetic factors in predicting long-term clinical outcomes of PSC such as disease progression and its complications. We hypothesize that genetic variation plays a key role in the clinical expression, and outcomes of PSC. The objective of this application is to discover the genomic determinants of PSC outcomes (i.e., orthotopic liver transplantation, cholangiocarcinoma, and colon cancer development). Successful outcome of this study will lead to better prediction of PSC progression and introduction of individualized approaches for risk stratification of disease outcomes and ultimately benefit the patients that suffer from PSC.
Primary sclerosing cholangitis (PSC) is a rare liver disease affecting the bile ducts inside and outside the liver. As with most rare diseases, it is difficult to conduct large clinical trials that support the development of effective treatments for PSC.
In 2014, PSC Partners Seeking a Cure collaborated with the NIH Office of Rare Disease Research to create the international PSC Partners Patient Registry. This registry brings information on PSC and those affected by the disease into a single place, and enables academic medical centers and pharmaceutical companies to easily locate patients who opt in to be part of the patient-driven registry.
The PSC Partners Patient Registry collects data including information on diagnosis, family history, quality of life, medications, surgeries, overlapping diseases, and patient demographics. Our registry is designed to be a resource for researchers, assists in finding appropriate patients for clinical trials, facilitates drug safety monitoring for new drugs, and allows for patient participation at each level of research.
This spring, we hit an important milestone: the PSC Partners Patient Registry reached more than 1,000 patients. We hope that bringing together more PSC patients will speed up research by enabling easier recruitment of participants for clinical trials. This is critically important, as the disease currently has no effective treatments to slow down disease progression.
An unexpected result of enrolling more than 1,000 patients in the registry is that some of those who tried to enroll learned — after answering a series of questions about their diagnosis and symptoms — that they do not actually have PSC. Instead, they have primary biliary cholangitis (PBC), a different disease that also affects the bile ducts. This misdiagnosis is troubling, given that PBC patients could be benefitting from treatments that are effective in slowing the progression of PBC – and they may be missing out on these treatments due to misdiagnosis.
To help clear up any misconceptions, we’ve been working with PSC Support, a nonprofit patient organization in the UK, on an educational campaign to promote a better understanding and more accurate diagnosis of these two rare liver diseases. Given the similarity of their names, PSC and PBC have been confused in medical publications, among regulatory bodies, and in medical practice — as well as in individual patient diagnoses, as seen in our patient registry.
Without an accurate diagnosis, patients with PBC may miss out on important treatments, and PSC patients, who, unlike PBC patients, are at an increased risk for colon and bile duct cancers, may not get important cancer screening.
A clear understanding of the two diseases will likely decrease the chances for misdiagnosis and our well-populated registry of over 1,000 PSC patients can serve to bring us a step closer to finding much-needed therapies for PSC.
To learn more about the PSC Partners Patient Registry, or to enroll, visit http://pscpartners.org/patient-registry/.
Dear PSC Community,
Access to affordable, high quality health care is essential for patients and families experiencing PSC. Like everyone, PSC Partners has been closely watching congressional health care reform efforts and how they may impact people diagnosed with PSC.
We understand that this is a complex issue. Regardless of the many differing opinions on the topic, we know that our community members struggle with the reality of living with a rare disease, and as a result, you have a unique perspective. We know that stable, affordable health insurance is critically important to people with chronic, rare diseases that require regular observation and, in many cases, hospitalizations, outpatient procedures, and even transplants.
The impact of the American Health Care Act, the House plan to replace the Affordable Care Act, is not clear. It is reassuring that exclusions for pre-existing conditions and lifetime insurance caps would still not be allowed, and that children will continue to be able to stay on their parents’ insurance until age 26. For older and low-income people with PSC, insurance could become more expensive, and some may lose coverage if new Medicaid caps are put in place. It is also concerning to see moves toward reinstating state high-risk pools for people with chronic illness.
These issues are not settled, and no changes have been adopted yet. At present, it is critical that PSC patients and their caregivers join the conversation and ensure that their voices be heard. Please take the initiative to educate yourself about the proposed changes and form your own opinion. We encourage you to contact your legislators to share your unique perspective and experiences, and how they shape your opinions about the American Health Care Act. To find your elected representatives, please visit https://www.senate.gov/ and http://www.house.gov/ and use the “Find Your Senator/Representative” tool in the upper right corner.
PSC Partners knows what it means to live with PSC, and we will continue to do everything we can to make sure others know it, too. As always, we remain together in the fight–whatever it takes!
Ricky Safer, Chief Executive Officer