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FIGHT LIKE HAYLEY!

 

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. 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 18th episode, Host Niall McKay talks with Dr. Nathan Baggett, medical resident and PSCer who has undergone multiple liver transplants.
“I never wanted PSC to put limits on how I live my life,” says Dr. Baggett.

Check out this episode!


 

PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores the latest research and knowledge about primary sclerosing cholangitis (PSC), a rare liver disease. 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 17th episode, Host Niall McKay talks with Dr. John Eaton, MD, transplant hepatologist and gastroenterologist at Mayo Clinic, about the future with regards to discovering new treatments and, eventually, a cure for PSC.
“I am more optimistic than I have ever been about the future prospects of caring for people with PSC,” states Dr. Eaton.

Check out this episode!


 

INFORMATION CAN BE HARMFUL TO YOUR HEALTH

Whoa! What the heck is this guy talking about? Information is power, isn’t it? Let me explain why my title is what it is.

 I have had PSC for 18-plus years and I’ve been part of the yahoo support group and the PSC Partners support group. I have met LOTS of PSCers and their caregivers. I have had numerous physicians, and I’ve been seen at a number of different hospitals. I was on Mayo’s high dose Urso study that was stopped by the NIH before its completion due to toxicity on patients that were symptomatic going into the trial.

What is he getting at? I have had information dispensed by doctors and trial administrators. I have talked to countless PSC friends and acquaintances, each with their own story to tell. Basically, I’ve heard it all as it pertains to our disease. At one conference, we had two doctors on the dais, and one said take Urso and the other said don’t. My point is that you can get caught up in a lot of non-useful information. You or your loved one will invariably have their own unique PSC journey. Are you going to need a transplant? This is not a certainty. Drugs are in the pipeline that may provide relief within 10 years. Will you get recurrent PSC if you have already been transplanted? Probably not. Is cancer going to hit you? The chances are strongest that it won’t.

You can sit at home and read all of the support posts, read all the Google information and scare yourself silly. My original hepatologist gave me a horrible prognosis. He told me I had five years to live.

Is there good information? Yes. PSC Partners Seeking a Cure has exactly the kind of information on their web site that you can use. Remember that PSC Partners always defers to your physicians for the best care for you, the individual. Do you have a good gastro/hepatologist? If so, you should be getting good information from them, and they should be able to answer your questions and include you as the most important member of the team. My main point is that you can stress mightily over so much information that may never pertain to your case. Take each day as it comes. Focus on your family and career and have faith in your doctors. Go to www.pscpartners.org and read the notes from the doctors and researchers that spoke at our conferences. Start with the most recent conference. Gather this important information to help you with your journey. Discard the info that doesn’t pertain to you now. You can always go back to retrieve it if you need to.

Peace and Love, Tim Wholey

 


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 14th episode of Living with PSC, Media Producer Niall McKay has a conversation with Dr. James Tabibian, a gastroenterologist and director of endoscopy and resident research director at Olive View-UCLA Medical Center, about the possible use of Vancomycin as a treatment for primary sclerosing cholangitis (PSC).

Check out this episode!


PSC Partners Seeking a Cure is pleased to present Living With PSC, a podcast moderated by Niall McKay. Each month, this podcast explores 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 13th episode of Living with PSC, Niall McKay interviews attendees, presenters, and hosts at the 15th Annual PSC Partners Seeking a Cure conference.

Check out this episode!

 

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.


 

Check out this episode!

 

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!

How to Eat When You’re Exhausted: Part 1

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:

  1. 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.
  2. Eat small, frequent, snack-sized meals instead of large, spaced out meals. It takes less effort to prep, cook and eat smaller meals.
  3. 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).
  4. 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.
  5. Eat more fruits and vegetables that are vibrant in color to provide vital nutrients your body requires.
  6. 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:

  1. Sit in a chair while your chopping/prepping food to reduce effort from standing.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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

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.

By Stacey Eno

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.