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From a Grandmother With PSC

PSC Partners Seeking a Cure

Why me?  Unlike most of you who post on our PSC Closed Facebook group, I am not a young parent nor a millennial. I am a sixty-six-year-old grandmother.

Until November 2015, I had been enjoying life as a retired special education teacher who was also (and still is) working part-time as a registered nurse. With my husband of almost forty-five years, we raised two wonderful children who are now married with children of their own. We travelled, took classes, went to the theatre, volunteered, babysat — and we still do these very same things day after day. However, one thing did change with the arrival of these three little letters we all know too well, three little devastating letters that had the power to instantly change my life.

Little did I know in 2010 where my abnormal liver function levels would take me. I was given respite from a PSC diagnosis for another five years. The removal of my gallbladder filled with gallstones brought complete relief. Once the surgery was over, all went back to normal.

Then… in the spring of 2015 I was faced with high liver function levels again. Evaluations resulted in dead ends and led to more evaluations by a hepatologist who finally uttered the three mystery letters: PSC. No one in my family, none of my friends, not even most of my doctors had ever heard of PSC. I was grateful that my primary doctor miraculously had.

Devastation, terror and solitude followed until I discovered PSC Partners a few weeks later. Ricky Safer and the support of the rest of the community proved to be priceless.

It took me a while to understand my own feelings. On Facebook, young parents were expressing devastation over their children’s pain, and young moms with PSC were describing their enormous fear of not being able to care for their children. I read their posts and heard their cries and empathized and despaired with them. I didn’t understand where my own fears could fit.

Where was my place as a grandmother with grown children? Very reluctantly, I posted about my feelings. I, too, had similar fears. I, too, was fighting my own internal battle. The context may have been different, but the fears were the same.

This realization brought a sense of huge gratitude in me. Strangely, I found myself thankful for being the one with PSC — not my husband, not my children, not my grandchildren, not my friends. I am filled with admiration for the parents of children with PSC; I admire the children of PSCers and the spouses of PSCers. I cannot imagine being able to watch someone I love so much having to deal with this condition. I cannot imagine being able to maintain my strength both for my loved one with PSC and for myself. I am in awe of those who do it so successfully for their loved ones. I am grateful to be the one bearing the burden.

I am fortunate that though I am sixty-six, I do not to have any PSC symptoms. My wish for my family and for myself is to continue to remain asymptomatic for many years. Of course, that Sword of Damocles never stops hanging over my head. But I’ve learned that it takes a PSC village to feel unafraid and that it takes the support of people who understand, to travel this incomprehensible journey. I am thankful for having discovered the PSC Partners community and for all the new friends of all ages and different backgrounds who have my back. I hope I can offer similar support to many of you.

Thank you all.


Barbara T.

30 thoughts on “From a Grandmother With PSC”

  1. Monica says:

    Thanks Barb for so eloquently sharing my exact story and feelings. While I don’t wish PSC on anyone I’m glad it’s me and not my kids or grandchildren or even my siblings as I’m the oldest of six. PSC Partners has been a sanity savior for me as I live in a fairly remote area and my local docs as great as they are really don’t understand the many challenges.

    1. Barbara T says:

      Where do you live? Are you anywhere near a major center?
      I understand that in Cleveland many of the doctors will be offering consultations the day before the conference — Will you be able to go?
      How are you feeling?

  2. Jandy says:

    Thank you for sharing your thoughts and experience, which closely resemble my own. I’m 57, married with no children, but close to my family. I, too, had my gallbladder out and thought that was the end of it. Within a week though, I was back in the hospital with a full-blown Cholangitis attack and received the PSC diagnosis. Two years later, I’m doing okay and feel terrible for those who are suffering much more. Do you ever feel guilty that you only have some fatigue, itching, a pain now and then, as compared to those who are much more seriously ill?

    When you talk about feeling grateful that you’re the one with PSC instead of others in your family, it closely reflected my own feelings. I’ll be the medical sponge that attracts these weird diseases (I also have Trigeminal Neuralgia) so that my parents, brother sisters or their children can live healthy lives.

    Thanks again for sharing.

    1. Barbara T says:

      Thank you and all the others for replying and for sharing YOUR thoughts. I don’t think I feel guilty for having no symptoms at this point — I feel grateful but I also feel pain and compassion for those who are suffering more than I am. I also feel helpless — I want to do more to help them — but I am doing what I can which is donate to research, respond to posts, try to offer what support I can and reach out — just like you are doing. Just knowing there are other grandmothers out there is wonderful for me. Hope we all keep in touch

  3. Sindee Weinbaum says:

    I too am a grandmother with PSC. Life certainly has changed for me in the over eight years since I was finally diagnosed after at least a few more when I was feeling quite ill. I want to say something that may seem strange to many. I now do not let it run my life, even though my symptoms are sometimes very difficult to handle. I have turned my PSC into something good. I help others in my situation that need my help and it makes me feel healthier and keeps me going. I hope you will be in Cleveland and we can make a group of grandmother PSCer’s.

    1. Mary Griffin says:

      Thank you for sharing I am 60 and was diagnosed in 2012. It has been a long journey for diagnosis but to finally have an answer a sense of peace. After an ERCP diagnosing dr placed stents and told my husband without a liver transplant I would die. I have since had one more bad flare up and now the recommendation is living donor transplant. I have 1 daughter and 1 grandchild and I can’t imagine not being here for them nor can I think of them watching me leave this world. We are currently taking care of my 84 year old mother with bone cancer and I look at the faces of my family….now more than ever I understand. But as you said not my husband, daughter, granddaughter or son in law so “why not me”. As a hospice social worker (many years ago) my first patient was an elderly lady who had biliary disease (I now think it was PSC) and I often think of how calm she was they had no children but they had a beautiful love and a beautiful life her strength was remarkable and his love was unwavering life is a journey and that journey is what we make of it. I continue to think of the living donor transplant and the transplant surgeon says my MELD score is low so I have time. For now I want to enjoy the journey. This is rambling but “Thank You” so much for your post. I have never shared and only began to openly discuss this in the last year.

    2. Barbara T says:

      Yes — my husband and I will be in Cleveland and your idea of a grandmother’s group is just perfect! Helping each other is one of the best things we can do. I hope you are feeling better. Not letting PSC control us is our way of winning — Thank you all for your responses. Hope we keep in touch

    3. Barbara T says:

      Yes — my husband and I will be in Cleveland and your idea of a grandmother’s group is just perfect! Helping each other is one of the best things we can do. I hope you are feeling better. Not letting PSC control us is our way of winning — Thank you all for your responses. Hope we keep in touch

  4. Sue Nielsen says:

    Thank you for sharing. I am 70 and dx 15 years ago. My most overwhelming feeling has been the wish that this was just an ‘elderly’ disease. I’m hoping to die with rather than of it but most of all I pray for a cure to relieve all the young victims.

    1. Barbara T says:

      I feel the same way — live a full life and eventually die of something else — hope your are feeling well

  5. Betty says:

    I am a grandmother of two granddaughters and a mother to a son. Who is a major in the USAF. I will turn 65 in Aug. and ask why me? Then I said why not .I had so many signs threw the years to know something isn’t right. So I lived the past 15yrs. as the person I used to be. The person I am now lives each day like it is my last and so so grateful that I have had almost 65yrs. When I see children and young people with this deadly disease . I say why them. God give me the courage to fight this
    disease .

    1. Barbara T says:

      I understand completely — I was a little luckier — I had no symptoms – or at least I didn’t think I had any — perhaps my gall bladder issues were an early warning — who knows? Meanwhile I appreciate each day that I am symptom free and if that ever changes I hope to draw from the strength of all of you and from the courage of the young adults, children and their loved ones,

      1. Mary Griffin says:

        Thank you Barbara. My daughter is now expecting our second grandchild (a little boy!). She has had several “angel” babies so this is exciting and even more life affirming for me. I will continue to enjoy this journey and be thankful for the bright lights…PSC does not have me!

        1. Barbara Tetenbaum says:

          Just wondering how you and your family are doing — hope all is well

  6. Barbara T says:

    Thank YOU so much. My heart goes out to you — I pray that your mother will get better or if not live out her days in comfort. Being a hospice social worker is a wonderful calling and the patients are so fortunate to have you. I found this group and website a Godsend — Not many “outsiders” know I have PSC — I told my children, siblings and a few close friends — just cannot deal with telling more right now. Too many questions to answer. I tell the people who should know as part of their family history. Like you, Monica and Sindee I am living each day to the fullest — as everyone says – we may have PSC but it does not have us

  7. Cousin Susie says:

    Although we are cousins, sInce moving to NY almost 30 years ago, I am forever grateful that we have also become best friends. You know I am always here for you and yours.

    1. Barbara T says:

      Thank you Susie — I am so glad that we are here for each other — and I am so lucky to have you as a cousin and BFF

  8. Carole Guimond says:

    I am so excited to find this blog. I may be the oldest of the grandmothers (75) but I am grateful that I am not alone. It is good to share stories. I am a retired RN who was diagnosed with AMA negative PBC in 2004. On Urso since then with normal LFTs. Fast forward to 1/2013 at Mayo, Jacksonville where after MRCP diagnosis was changed to PSC. So far although my 6 month MRCPs show increasing narrowing and dilation of bile ducts, I have not experienced any serious sign of Cholangitis.

    I too am thankful to be this age with grown children and mostly grown grandchildren. When I read the Face Book posts my heart breaks for the children and the young adults with PSC desperately needing transplant.

    I have flights and hotel reservations for Cleveland for June 22-26 and now that I know I won’t be the only older person, I feel less anxious. Looking forward to finally meeting another with PSC! Thank you all for posting.

    1. Barbara T says:

      Wow — what kind of nursing did you do? I work on a mother-baby unit and I love it.
      You have also been through a lot — and like all of us you are coming through it. I am so glad we are here for each other

  9. Barbara T says:

    I am so glad I kept the e-mail that Rachel sent me — she included a link to this site. I still have to figure out how to access it on the Facebook page or PSC Partners page — for some reason I can’t do it. I decided to check the link again today and found so many more beautiful responses. My birthday was yesterday and I am now 67 years old. Ironically as my brother pointed out, our Junior High School was JHS 67. My elementary school was PS 94. So hopefully I will live up to and beyond my elementary school age too I am also so happy that Carole, and Sue found this blog as well. And Cousin Susie — thank YOU. We are NOT alone — we have each other. I hope that we can all meet in Cleveland and share our lives in person. I am just grateful that we are all still able to live our lives and live each day to the fullest. Whatever support we CAN give to our younger members is so important as well. One easy way to help — if you have not yet done so — if you shop on Amazon you can enroll in Amazon Smile — a small percentage of your purchase goes to the charity of your choice — I chose PSC Partners. Also replying to posts on the PSC Facebook Group (I am part of the Closed Group) can only help as well — even if it is just reaching out a hand. This turned into a lot of words — hope not too many. Thank you all for responding to my initial post —

  10. Rachel says:

    Barb, I haven’t been in this space for awhile. I love seeing the wonderful community that is forming here. As a grandmother myself, I feel I am related to you all and belong here. What a great space. I hope many more Young-at-Hearts would see the blog…

  11. Barbara T says:

    Rachel — thank you for that and for your e-mail — I finally saw where to access all the blogs —- Phew!!

  12. Carole Guimond says:

    I retired when I moved to FL 18 years ago. Graduated almost 55 years ago. Started with pedi, did med surg, then stayed home while the kids were small. Did some part time school nursing. Then I coordinated the Cancer Information Service at the Dana Farber in Boston for 10 years (long story for when we meet). Did psych including eating disorders for a number of years. After retiring I have done a number of volunteer jobs–hospice etc.

    I am on Amazon Smile for PSC Partners. Every little bit helps.

    I am so looking forward to Cleveland. I couldn’t make New Haven last year but did see the conferences on Utube. So impressive! I am amazed at the quality of responses on FB. This group is really there for one another and people seem so knowledgeable and immediately answer to provide help.

    Hope I am using this blog appropriately. Like you Barbara I’m not always sure about this computer communication/social media stuff–wrong generation…
    Weigh in, Rachel?

    1. Barbara T says:

      So glad you will be going to Cleveland — can’t wait to meet you! Your background is so interesting and diverse. Thanks to Rachel I was able to go onto PSC Partners for a Cure, click on the Patients link and Blog was last on the list — so I could access all the blogs including mine. Of course you are using this blog appropriately. Nursing was an additional career for me — I earned my degree while on child care leave from teaching. Worked med-surg but since 1986 Maternal-Child was my area — loved it then and love it now. Hopefully all us grandmas will get to Cleveland — and we of course hope to see the grandpas as well.

  13. Barbara T says:

    By the way, I live in New York — Long Island. Where is everyone else from?

    1. Carole Guimond says:

      Originally from Boston area now Melbourne, FL–about 20 miles from space center. Alas Grandpa (married 54 years) didn’t want to come this time but maybe next year depending on how hard I twist his arm!

      1. Barbara T says:

        Twist hard — we would love to meet him too.
        Love the date you posted — it is Larry and my 45th Anniversary. We were at the Space Center many many years ago — one day would love to see it again

  14. Mark says:

    I am not a grandparent, but at almost 63, I am certainly old enough to be one. My 20 year old daughter was just diagnosed with ulcerative colitis last week. Incredibly, the GI never noticed that her liver enzymes were elevated in blood work done in January. My daughter was away at college at that time and went to the college health clinic who ordered the blood work because of her bloody diarrhea in January. The GI is ordering an MRCP test after I alerted her to the high ALP number of 192, so I will be sweating it out until the result is known. So my question to everyone is , are ALP numbers around 200 typical for patients diagnosed with SCD? I know there is much more to the diagnosis than just one number but I am most worried about the ALP number.

    If my daughter is diagnosed with PSC , I may be going to Cleveland as well.

    1. Barbara Tetenbaum says:

      I am so sorry Mark — I just saw this — Did you ever go to Cleveland? How is your daughter doing? Please let me know.

      1. This chart from Dr. Christopher Bowlus may be helpful for you in better understanding your test results:

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