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Q & A with Winning Athlete & PSC Patient Yvette Matthews

 

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!



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 16th episode of Living with PSC, Niall McKay talks with Dr. Jerome Schofferman, MD, about his dual role as PSC patient and physician and what it has taught him about living with a chronic illness, treating patients, and including caregivers in the process.

Dr. Schofferman, MD., is a retired Internist and Pain Medicine Specialist from Sausalito, CA.

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 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 15th episode of Living with PSC, Media Producer Niall McKay talks with Co-Chair of the PSC Partners Medical Advisory Committee Dr. Christopher Bowlus, Division Chief of Gastroenterology & Hepatology and Professor at UC Davis School of Medicine, about drug and clinical development in the search for treatments and a cure for primary sclerosing cholangitis (PSC).


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 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.

PRURITUS

Advice From Mom/Caregiver/Pharmacist

Pauline Tostenrud

PSCers Often Have An Itch to Scratch

As many PSCers and their caregivers know, itching, known as pruritus, is a big issue for those affected by this disease. The bile acid buildup from PSC is believed to cause this itching, and suggestions about ways to deal with this problem are sometimes confusing. As a pharmacist and the mother of a double-transplanted PSCer, I am well-aware of the issue. In this blog, I hope to share ideas PSCers and their caregivers can discuss with their doctors to help manage the intensity of itching and minimize skin damage from scratching.

Pruritus

The treatment of itching related to PSC is not the same as itching from mosquito bites or allergic responses and should be managed by hepatologists and dermatologists, especially when it becomes so severe that scratching causes skin damage. The damage can lead to infection, which requires antibiotics and can affect transplant status. Keeping skin moisturized and healthy with vigilant self-care may help patients cope with itching. Doctors should be involved in development of treatment plans to help optimize the strategy and minimize discomfort.

Self-Care

My daughter’s journey with itching is a balancing act of moisturizing and massaging guided by consultation with her doctors. We have found that the best treatment for her is twice a day lengthy massaging with ceramide-containing cream and once daily massaging of an ointment, preferable after a short, cool shower. She takes an antihistamine at bedtime to both minimize daytime episodes of encephalopathy and encourage the nighttime sleep cycle.

Which Lotions are Best?

Ointments are occlusive, meaning they hold moisture in the skin, but they often feel greasy. Creams absorb into the skin and usually do not leave the greasy feel. Antihistamine-containing creams and ointments, such as diphenhydramine or hydrocortisone, can be purchased over the counter and might provide limited relief. However, they do not alter the source of itching, the bile acids. Antihistamines also may cause drowsiness, and, if the PSCer is experiencing any hepatic encephalopathy, they might contribute to this problem. The least sedating antihistamines are cetirizine and loratadine.

There are some prescription-only steroid products for the skin, but, keep in mind, long-term use of topical steroids on the skin can have harmful effects. Therefore, depending on skin condition, doctors need to help determine the risks and benefits of topical steroids. Scratching, which can even occur during sleep, might lead to inflammation and skin breakdown and make some topical steroid use suitable to treat the inflammation. Topical steroid use over long term can be harmful, so, again, these should be used only under a doctor’s care.

Topics for Discussion with Physicians

Medications, including cholestyramine, are bile acid sequestrants that bind bile acids in the gastrointestinal tract to help eliminate them. While they often help, these drugs can also bind and prevent absorption of some medications. So, it is imperative that PSCers seek medical advice about timing and dosage amount relative to other medications.

Some alternate medications that may also help include the antibiotic rifampin, as well as the medicines naltrexone and naloxone. Additionally, there are prescription-only drugs from different classes with side effects beneficial for the discomforts of PSC-related itching, such as doxepin, sertraline, and paroxetine, but these may cause dryness and/or drowsiness. These medications have other limitations, as well. For example, if patients take pain management opioids, the naltrexone and naloxone would be counter-productive and not recommended. The PSCer’s liver disease status, such as bilirubin level or clotting factors, might make rifampin an inappropriate choice. Any intolerance to the side effects of sertraline or paroxetine might make these options contraindicated, as well.

Since PSCers often take many medications, drug interactions may complicate the addition of anything new. Therefore, PSCers and their caregivers must work closely with medical providers and pharmacists to find the best options.

Light Therapy

Dermatologists may recommend a specialized light therapy, which is only available through the physician. This is different than tanning, and involves very short treatments with a filtered light therapy (UVA and UVB) at the doctor’s office. Some medications cause light sensitivity, so be sure to bring a complete list of medications to the dermatology appointment. My daughter felt that, over the months before transplant, the light therapy with dermatology provided some relief.

Every case of PSC-induced pruritis is different. Please be sure to check with your doctor before adding or removing anything from your skin-care or medication routine. If you have other suggestions for managing pruritis, comment below.

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!