persistant_life

I am so blessed to have you all in my life, so is Terry. Don was wonderful for him! If Don ever needs someone to talk to, Terry would love it! He’s not in his shoes of course, but he felt the fears, uncertainties and the deep love as Don has for you Jamie! I will stick around, I need to keep up on all of you! My blessed gift of Angels here on this board!

I will say it again, the spot on my right lobe was there before I left for the Mayo. After many prayers, prayer circles and deeply having the faith that I would be cured, it was gone! The docs saw it on the previous tests, they couldn’t find it on theirs! Of course, medical/scientific explanation was sought after, but they can’t and won’t change what the miracle is, was and will be! It’s hard to imagine that in some of your shoes, especially those who have recurrent disease or late stages. But, try to remember the good things you will learn along your journey, focus on them, believe and keep faith for healing! Healing comes in many forms, emotional, spiritual and physical! It’s easy for me to say this, I have felt the fears of the unknown to a certain extent and I came out clean. Know I am praying for you all! You are all my miracles and hope! Without you I couldn’t have made it this far, I would have turned and ran away, hiding my head in the sand. You gave me courage and strength! I will be yours!

I am so glad that the good news was uplifting to you all, it was to us too. I will be taking extra good care of my liver and GI tract as things can lead to others. Yes Marions, it is not a positive that I will get CC, it’s only a chance. As I have said, I hope that I can be of help to the medical community for you and others in detecting certain percursors that might lead to CC. I have a couple of the warning signs, we will watch them very closely!

I have read that 70% of people with UC develops PSC, and yes, 1/3 of people with PSC will go on to develop CC and 29-46% go on to develop colon cancer. If they can catch anything early, damage, blockages, strictures, polyps or blood work “hints”, situations can be caught early enough before progressing to CC or colon cancer, or at least catching things early enough to possibly cure it. Hope for the future?

So many people don’t have any symptoms until it’s progressed, but I am a firm believer that you go with your gut! If I have any symptoms or signs that something is going wrong with my body, I will be there on my docs doorstep! I will be having frequent tests, blood, imaging of sorts, including the scopes. I had to fight for a year to get where I am now, advocating and begging, pushing and forcing my PCP to do work ups, images and blood tests. Sending to a variety of specialists. I was fortunate enough to feel something was wrong and I pushed until they got on the right track.

I will be a shoulder, an ear, arms to hold you and bended knees to pray for you! I can help research or read or gather information for you. Anytime you need to call on me, please do! It is very precious to meet in person, maybe one day we can plan a gathering! A reunion! When we hang on to one another we can fly!

God Bless You!
I love you all!
Nathalie

Hello Heather, sorry to hear about your sister. I haven’t heard or learned anything yet. I am just now starting my journey.

Yes, I am scheduled to go the Mayo Clinic in Rochester this coming Monday! I am excited knowing that they are so well informed and on top of things.

It looks like we can learn about these things together. Is your sister going to the Mayo clinic? What have they mentioned about her treatment plan? Stage?

You are definately in the right place, here. These wonderful people here have been so extremely helpful, supportive and loving.

God Bless you, you and your sister are in my prayers… Keep me posted~
Nathalie

marions — thank you and I will post what I find as I go along. I am so new to all of this, I am not sure what I find would be something new. But, repeating some things aren’t so bad either.

Lainy — Oh yes dear! I didn’t mean it to come across that you couldn’t live without it. From what I can understand, yes you can live with part of your pancreas. The issues I was talking about was my report states intra/extra ductal dilations with a 3.7 x 1.7 cm area in the common duct. It reaches my pancreas with a ductal dilation of 8mm and has impressions upon my marginal region and pancreatic head.

What I had read on stents was, if stents are put in the ductal areas, it creates infamation and scar tissue. Making surgical repairs to the ducts even harder to do. I also read metal ones are even worse in creating damage. They said unless the Dr. has expertise in this disease, does at least 100 surgeries a year and is very familiar with what is involved with this surgery, do not allow them to use you as a guinea pig. They say that the tissue and organs involved in this surgery are so delicate, many patients that inexperienced Dr.’s have done testing on and inserted stents have damaged the area that were once repairable, like the pancreatic head. In other words, it was repairable, but now they have to remove it because of damage done by the inexperienced ones.

I will try to find it again and I will post the link to this site that had given me the information. It was of great help in my choices.

Hugs n Prayers~
Nathalie

You are all so very sweet and helpful! I am humbled by your welcomes, kindness and eagerness to help me. I appreciate all you can share about your own experiences with me. And we can never have too many prayers!

Thank you again! For your time, efforts and helping me feel like I am not alone.

Hugs and Prayers,
Nathalie

Thank you for your kind words and sharing a bit with me. I was scared at first, but then I started reading. I know that CC is a touch disease, dreaded and very hard to manage or cure. But, I have hope. I was very fortunate to have a husband that gave me courage to be persistence. I agree it does have to do with location and education on both parties. If my PCP hadn’t come off as such an influential and well educated know it all, I wouldn’t be so upset.

My husband had went into the office twice with me to have a “talk” with her because we couldn’t reach her through her nurses or phone system and I ended up in the ER twice in a day. She agreed with my husband as to it being difficult to get her, and pretended to listen as I explained my symptoms. I mentioned I had SEVERE, BREATH TAKING pain in my upper abdominal area, she felt it, I said it radiated to the middle of my back and she said it was stress because I started crying when she pushed on the area and caused more pain! Then she told my husband as he explained to her that it was waking me up, I was depressed, see she is crying now… Then said Fibro, prescribed me Cymbalta and walked out of the office…

Anyhow, it has been a frustrating road and I am so thankful for you! The tumor is 3.7 x 1.7 cm in the cystic bile duct with dilation of both ducts and pancreas. The impression on the pancreas worries me, but then again anything that we don’t know causes some uneasiness.

I will update my report on the 10th, when I go in to the Mayo. I am still looking around here and reading all the information. I was wondering if there is a place to post pictures of scan images to share and compare.

You are all in my prayers and I hope we will develop a long lasting relationship, fighting for a cure!

Hugs
Nathalie