Nina's PSC liver Journey

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Nina's PSC liver Journey

Transplant Warrior 12/10/23! 💚🦋💚

17/10/2024

Ended up in hospital yesterday with possible infection or something else we will see what drs says today 🙏🏻

14/05/2024

Today I received my first scan (MrI) results since transplant!!! Wow I shed some tears in joy reading the words No ductal dilatation and no focal lesions! I am so greatful for my donor and the gift of life working hard in my body today 🥹 thank you all for the continued prayers, support, patience through this healing journey! I have been feeling really well. I feel and see changes everyday in my body. We are now 4 months post and feel so great. My meds have been a little bit of a dance but the past couple checks on my immunosuppression (tacro level) have been good so have been able to stay on same dose for a bit. Also have seen for the first time since I can remember normal LFT’s . I continue to do things to remain active and mentally tough and appreciate so much the love and support you all have given. See my hepatologist on Thursday at Stanford hoping to get the clear for more activities in life!! Love and light to you all 🦋🫶🏻🕊️

12/05/2024

I wanted to say Happy Mother’s Day to so many amazing mamas I know in my life. Today Is a day to really look back at the year and be greatful for so much. I have had such amazing mamas in my life and seeing what sacrifices, love, and dedication to family, has really made an impression on my life as a mom. I feel so greatful to have had and still continue to have beautiful examples in my life. Thank you Margaret for being my mom, love you and so thankful for everything you have shown and done for me. I hope you and all the mamas have a beautiful day to do what you would like to do and reflect on 🩷🦋🫶🏻🕊️

25/02/2024

Good morning! ☀️ sorry it has been a bit since last update. I have been getting back into the routine of things and my new normal. labs have been looking amazing! I have been focusing on still taking my time as this healing journey is multifaceted for sure. The incision with the healing of the nerves and muscles I find has a mind of its own but since I am moving around so much it seems to be normal for what I feel. My antiregection (tacro) levels in my system have been remaining stable and we have gone to a month out for hepatology visits which is great. Labs still weekly as we have to adjust the levels sometimes. She is so happy about how my healing is and my now normal labs are looking! We have started to lessen some of my medications. As I was told things can change from week to week, but as of right now, I am doing my best to stay as healthy as possible with exercise and mind body love care. Thank you all again so much for the continued love and support. Here is a little collage of the Shinanigans lately 🫶🏻 p.s for those that heard our rescue dog Luna unbeknownst to us at adoption was pregnant sweet family helped us with the pups and Luna until I was more stable at home. We got Luna home then a couple weeks later decided to see about having one of her pups 🐶 feel like they are pretty special as they were born when I was having transplant. Full circle re birth 💚🦋✨

22/01/2024

Hello all! On Thursday was my first outpatient appt I went to from home. Also Had labs done In am and liver values are looking wonderful along with most other labs. Kidneys Dr says are wanting more liquids among struggle bus of the meds can make that happen. I also need to try and eat, eat, eat 😜 I am doing my best at both but can be hard with feeling full all the time. They said my incision and hematoma are looking great! Will post pic of the belly. I am doing my best at adjusting to my new “normal” and trying to stay on the forward path. It has its days and can be harder than others but feel better everyday. Dr said I can come back for check up on two weeks and it can be done by video!!! Which is nice for the commute train and also labs once a week. I am on Still 14mg a day of Tacro (antiregection) and went down on my cellcept which I’ll take as a win 😜 I think it’s also important for me to realize and remind myself to validate this is hard sometimes mentally in so many ways from my body changing in ways I don’t recognize but also a blessing and gift that is so beautiful I can’t put words to it. But always try to keep my hope and faith in this process of my new life. Will keep updating. Thank you again to everyone truly so much love we feel it always 🫶🏻💛💜💙🙏🏻🦋

12/01/2024

Home! Part 2 Plan moving forward right now 🫶🏻🙏🏻🦋

12/01/2024

Home! Part 1 🦋🫶🏻🙏🏻

11/01/2024

I wanted to share an update for family and friends I sent earlier. So much love and healing ❤️‍🩹 To all! Please 🙏🏻 we are able to go home and continue the healing adventure. I hope 2024 is bringing all so much to look forward to and new beginnings! I feel big things are to come!

30/12/2023

Hello! I wanted to do little update. As some may know, I was discharged from Standford to their transplant apartments on Dec 20th about 10 days after transplant (transplanted dec 10th)
I have Been feeling pretty good all considering 😊 have been dealing with an open hematoma that they have had to evacuate couple times one instant was last Thursday. Hoping for it to heal up soon. I did make a side by side of my old liver and new liver warning ⚠️ posted below if some do not want to look 👀 it was hard for me to imagine what I really was living with for all these years so this really validated me and speaking to my surgeon several times just confirmed everything to me. I find myself thinking a lot of my donor and who may have been and gone through. I have already been thinking of things I want to say and the feelings of not possibly getting a response. I know we both have a year until we can write To each others families. All these feeling serface a lot but so grateful for everything beyond words can even express. I hope everyone had a nice holiday and have a happy new year!! Below are some pictures also of my journey so far. Love to you all ❤️‍🩹🦋

27/12/2023

Good evening! Hope everyone had a wonderful holiday! Today was a rest day with only blood draw this morning. Greg and I went on walk for a bit at the Arizona cactus garden by the hospital. I also was blessed with 30 blessing meals back in November from Brentwood Neighborhood Church to have some meals when I received my transplant. Tonight greg and enjoyed a chicken teriyaki meal. God is good, and I feel so blessed and grateful Thank you all again for everything! Gregoire Fosse
🦋🦋Prayer on meal tonight
2 Samuel 22:31-34
"As for God, his way is perfect:
The Lord's word is flawless;
he shields all who take refuge in him.For who is God besides the LOrD? And who is the Rock except our God? It is God who arms me with strength and keeps my way secure.
He makes my feet like the feet of a deer; he causes me to stand on the heights.🦋🦋

26/12/2023

Merry Christmas! 🎄 I have had quite a few Folks ask for my temporary address where I am living right now so thought I would provide on here 🫶🏻
1100 Welch Rd Apt. 1H
Palo Alto, CA 94304

Address

94513

Website

https://redcap.stanford.edu/surveys/?s=J4YDMHMYDM, https://stanfordhealthcare.org/campaigns/living-donor-campaign.html,

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