5 years since diagnosed...

[Ktltel]

1st, sorry this is long... Made my Mama's homemade Tamales! Where did I get the energy. You tell me. This past year has been strange. Got my vaccines and the booster. And after my 2nd vaccine I experienced about week of energy. It was weird. Told my hep about it. He shrugged his shoulders. I just enjoyed feeling like the pre-PBC me while it lasted. Then I also cut out carbs this last 6 months,....not completely but I needed to get my glucose in line. PCP told me I am pre-diabetic. My liver numbers from those labs were the best they've been for awhile. Alk-phos was 151 and everything else was normal. I lost some weight...not much, 10 lbs. Then mid Oct. got my booster. Again about 5-7 days feeling energy and able to do more throughout the day. I don't know why. Then, my Hep. ordered end of the year labs, and my annual MRE. I hadn't had one since 2019 because of covid-19. In 2018 my MRE kpa was 3.14. In 2019 it went up 3.83. Not good. I spent the last two years thinking my PBC is progressing faster than he had hoped. Needless to say I took a Xanax before this MRE to relax. I just knew my kpa would be in the mid 4.0's or worse. My liver labs came back decent. And, my glucose was good! But, my Alk-phos was 178...up from 151 five months ago. Everything else was normal. Then my MRE results came back. MRE's read differently than a Fibroscan. They measure in Kpa's but the reference scale for measuring Liver stiffness is different I believe.

<2.5................Normal

2.5 to 2.9......Normal or Inflammation

2.9 to 3.5......Stage 1-2

3.5 to 4.0......Stage 2-3

4.0 to 5.0......Stage 3-4

>5.0.............. Stage 4

My MRE, which is 97% accurate, read my Kpa is 2.86! 😲 That's normal or Inflammation. I couldn't believe my eyes when I read the report in my patient portal. Previous readings had me jumping from stage 2 to the "high end" of Stage 3 in one year! My Hep was excited. He said whatever I'm doing, keep doing it. Could it be that my Liver stiffness was due more to NAFLD than my PBC? And because of eating low carb my NAFLD was getting better? It almost has to be the case. So,....I celebrated because it seems my PBC is progressing slowly after all. I made my mom's Tamales, packaged them in groups of ten per bag, and my husband delivered them to friends. I am so happy and it's been a while, like since pre-diagnosis (2016) that I've felt this good. ❤

Stella

[butterflyEi]

Hi Stella,

You are looking as lovely as ever and those tamales look great. So pleased to read that your in such a good place at the moment. This type of good news makes us feel better and more able to cope with our lives. I hope your husband is also doing well now.

Really glad to read your news, wishing you a Happy Christmas.

best wishes

[Ktltel in reply to butterflyEi]

Thank you. I feel good. This idea about fibrosis coming from NAFLD more than PBC.....I wonder if anyone else has experienced this. I've also heard fibroscan and MRE numbers can fluctuate. I won't have another MRE until next Dec. Good to hear from you.

[Michi1]

Stella,

It's nice to see you're doing so well. Those tamales look amazing! I was never a fan until I had really good ones catered to a party that were made differently than the ones I'd seen in restaurants. When they're good, they're very very good! Congrats on the great numbers. That's a real accomplishment. Lifestyle changes are hard but they definitely make a difference.

Michelle

[Ktltel in reply to Michi1]

Thank You Michelle. 👍🏻

[4pjx__]

Wow! That's great news! I had a shear wave ultrasound about a year ago and it said I was a 6. My ALP last week was 209. My doctor is looking into see if I qualify for Ocaliva. Hugs!

Pam

[Ktltel in reply to 4pjx__]

Hi, shear wave scoring?...How does that work? How are you feeling overall? Ocaliva is helping many people let us know if you start it. I also heard Seladelpar was going to be given another run....another trial. So, there are a few things out there maybe. Covid-19 has put so many things on hold. Keep us posted.Stella❤

[4pjx__ in reply to Ktltel]

Well, I'm not sure how the scoring works but it's definitely cirrhosis. Haha! I must be an over achiever! I feel fine though. --Pam

[Zuske]

So happy for you, you make me smile with your story, I can imagine you feel so relieved!!❤️

[liver-bird]

Lovely to see your smiling face Stella. Those tamales look delicious. Have a wonderful Christmas and keep well. Diane xx

[Ktltel in reply to liver-bird]

Hello Diane, good to hear from you. Hope you are doing well. Yes, I was a Tamale making fool the last couple of days..lol. Can't make them as good as my mom, but, I keep trying. I don't eat them. I taste test before the rest go to friends and Joel will have some too. I'm really wanting to test out this idea that the fibrosis readings I had 2 years ago came from NAFLD and not from PBC. So, I'm sticking to low carb for a while. How have you been feeling?

Stella❤

[liver-bird in reply to Ktltel]

HI Stella, apart from currently having covid I am pretty good. I am doubly vaccinated with a booster but still caught it. It's spreading very fast round here (outer London).

I have a very open mind on PBC there is so much more to know. I think you may be right that NAFLD may be your culprit. Isn't it fascinating how your energy levels rose after vaccination, that needs some investigation.

Do keep us updated and have a wonderful Christmas. Diane xx

[JaneIng]

Congratulatioins, Stella. So happy for you.

[Ktltel in reply to JaneIng]

Yes, Thank you. Taking my URSO everyday and watching my diet a lot more closely. Hopefully I can continue to get this NAFLD under better control. 👍🏻

Stella

[alpha3]

Sorry but what is NAFLD

[Ktltel in reply to alpha3]

Hello, oh I'm sorry. It's Non Alcoholic Fatty Liver Disease. Many diets, including Low carb eating, and exercise really help minimize or get rid of NAFLD. Left unchecked, fatty liver causes fibrosis, and then over time, Cirrhosis. Also, thin people can have progressive NAFLD as well. Many mistake the "Fatty " part in that name to assume it only affects the obese. Not true.

Stella

[alpha3 in reply to Ktltel]

Thanks Stella for the explanation. I'm afraid I don't keep up with all the different sides to PBC. I was diagnosed in 2013 at a random Health check, so getting on now for 9 years. I'm now 82 years old and have kept well since diagnosis. I haven't been seen by a Doctor now since December 20, due to the Covid Virus, but previously saw my consultant every 6 months. It was great to hear that you're doing so well with your NAFLD. Best wishes to you and all PBC patients for a very Happy Christmas and hopefully a happy and healthy New Year

[boneytoys]

Good on you is all I can say. Have a wonderful Xmas. Walk the walk. Xx

[gwillistexas]

Hi lady! So good to hear from you and that you’re doing so well. I seem to be doing well. I saw my hep in August and he was very pleased and released me for a year with him. However, he does want me to follow up with his NP in February. I’m not on here much. I’m not too fond of this new way to connect. But I do check in from time to time. Take care. 😊Gail

[Ktltel in reply to gwillistexas]

Hello Gail🙋🏻‍♀️,Same here. I'm not on here as much anymore. I pop on now and then. Try to alleviate any fears some may have after reading outdated scary stuff online about PBC. I'm so glad that you're doing well. Good for you❤. The Liver is an amazing organ. I'm doing all I can to takecare of it, I know you are too. This last MRE was a shock to us. I was expecting stage 4 fibrosis because of my 2019 MRE results. Eventually I will get there, but, "not yet!" Please be safe this Holiday season. So much going on in the World. Keep in touch.

Stella❤