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3 hours ago · Sharing, Caring and Lending a Virtual Ear: Meet @gingerw in About Connect: Who, What & Why

Ginger, @gingerw, I am thrilled to see your Spotlight Interview in its completed stage! It has been fun to work with you and to get to know you during the process. I look forward to your continued support and sharing on Connect.

7 hours ago · Reunion get together at Rochester in Transplants

@mtn_lvr, Here is information about the Rochester Event – Groups>Transplants>Transplant Events
https://connect.mayoclinic.org/discussion/transplant-events/ – "July 28, 2019 from 11:00am to 3:00pm at Soldiers Field Park in Rochester. You can RSVP to transplantpicnic@gmail.com"

I want to welcome you to Mayo Connect. I am a transplant recipient, howeve distance prevents me from attending this event. Will you be able to attend it this year?

1 day ago · Sharing, Caring and Lending a Virtual Ear: Meet @gingerw in About Connect: Who, What & Why

Member Spotlights feature interviews with fellow Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.

2019.5.21.<a class='mention' href='https://connect.mayoclinic.org/member/137807aa00ece65c63ff9c75b7214551c2ba7a4454/' rel='nofollow'>@gingerw</a>.Connect Spotlight” width=”715″ height=”415″ /></p>
<p><strong>ROSEMARY: What brought you to Mayo Clinic Connect? What motivates you to take part in the </strong><strong>community?</strong></p>
<p><span style=@gingerw: I have been receiving the Mayo Clinic newsletters by email for years, and always was impressed with the wide variety of subjects covered. One day, there was a link to Connect, and I took a chance. What a game changer!

ROSEMARY: What about Connect makes you feel comfortable to share and to be open with the community?

@gingerw: This community consists of motivated people. We share, we care, we lend a virtual ear to others who reach out. As an adult on the autism spectrum, interfacing in cyberspace is easier for me than face-to-face sometimes.

ROSEMARY: What groups do you participate in?

@gingerw: Among them, Mental Health, Chronic Pain, Kidney & Bladder, Transplants, Autoimmune Diseases, Depression & Anxiety, Just Want to Talk , but I always scroll through the Connect Daily Digest in case there is something that piques my interest.

ROSEMARY: Tell us about a meaningful moment on Connect.

@gingerw: When others who read my posts feel they have received some information or find relevance, it’s a good feeling. Like so many in this community, I have gone through a lot in my lifetime. If my experiences and support can make a difference to someone, then my mission is accomplished.

ROSEMARY: What surprised you the most about Connect?

@gingerw: How easy it was to step up and start posting!

ROSEMARY: What energizes you, or how do you find balance in your life?

@gingerw: I value time spent creating artistic things, be it with fabric, yarn or pen. Also, I love the outdoors. The picture here is of Multnomah Falls in Oregon’s Columbia River Gorge. We visited there in 2017; the area was decimated later that year in a wildfire.

ROSEMARY: Tell us about your favorite pastime or activity.

@gingerw: Last year I took my first lesson in Zentangle, and find the meditative drawing a good adjunct for my other therapies. In fact, this summer I will become a Certified Zentangle Teacher, after attending a multiday training in Rhode Island. It’s my new go-to pastime.

ROSEMARY: Do you have a favorite quote, life motto or personal mantra?

@gingerw: I have two. A recent one is “Find Joy in the Journey.” The other one is a quote often attributed to Dr. Seuss, “Be who you are and say what you feel. Those who mind don’t matter, and those who matter don’t mind.”

ROSEMARY: Puppies or kittens?

@gingerw: Definitely kittens.

See more Member Spotlights.

3 days ago · Post Transplant Symptoms in Transplants

@newliver1, It is always good news to hear the words, "It is normal". In truth, the whole transplant process is new for us, and we are developing a new normal. I am happy that your husband is progressing forward since his transplant.

I want to share some post transplant information that you can refer to when your husband returns home to continue recovery. You are invited to join in anywhere if you have a question or idea to share.
Living Life after your Transplant
https://connect.mayoclinic.org/discussion/living-life-after-your-transplant/?pg=1#chv4-comment-stream-head with transplant recovery,

TransplantSelf-Care Tips for Transplant Patients


4 days ago · Do you know about Telecoils & Hearing Loops in Public Spaces? in Hearing Loss

YES, I am responding for my husband who has worn a hearing aid for several years. He is familiar with the hearing loop. He can't recall where, but it was before he retired. He thinks he may have heard about it at work related trainings or seminars. He was a psychologist and did some counseling with deaf and hard of hearing patients.

4 days ago · Post Transplant Symptoms in Transplants

@luckonetj, That experience must have been frightening. Thank you for sharing the good news about your continuing improvements.
I am curious, Did you have a flu shot?

4 days ago · Primary Biliary Cholangitis and Autoimmune Hepatitis in Transplants

@johnshaw, @jacinta,
You are not alone with itching. I want to invite you to the discussion, Liver disease itching, where you cwill meet other patients who also experience itching with liver disease.


4 days ago · Primary Biliary Cholangitis and Autoimmune Hepatitis in Transplants

@jacinta, I have no wisdom to share with you, however I completely understand your current itching misery. My itching became almost unbearable for a period of time. My GI prescribed a bile binder cholestyramine that helped me somewhat. I also used any kind of anti itch lotion and bath additive that I could find. My favorites were Sarna anti itch lotion, and Aveeno soothing bath oil. Door frames became my best buddy as I would use them as scratching posts.
I am upset that you are getting such an unprofessional reactio from that nurse. Does your specialist's nurse have any idea of how serious PSC can be? I often found that since it is a rare disease, that many medical professioinals are unaware of it and don't know what to do with it. Here is what I found on the Mayo Transplant Pages> Primary Sclerosing Cholangitis (PSC)>Aboiut PSC.

"Primary Sclerosing Cholangitis (PSC), a cholestatic liver disease characterized by persistent and progressive inflammation and scarring of the bile ducts, remains a puzzling disease.

Despite progress to develop new treatments, there is no effective medical therapy for this condition.
The disease affects about 1 in 10,000 people, more men than women, and is usually diagnosed during middle-age (around age 40).
50 percent of those diagnosed with the disease present no symptoms; abnormal liver function test results are the only indicator of disease. For patients presenting symptoms, the disease reveals itself through fatigue, jaundice, itching and abdominal pain from liver damage, with 70-80 percent of patients suffering from inflammatory bowel disease (most commonly ulcerative colitis)." https://connect.mayoclinic.org/page/psc/tab/about-psc/

Jacinta, Are you being monitored by a gastroenterologist (GI) who has experience with PSC, or a Hepatologist? How often is your MELD score updated? With PSC, in my situation, the MELD was at a steady low until it started to rise very quickly and my health declined rapidly. With your bile ducts being blocked, and no more ERCP's what is the doctor suggestion for your future treatment?