Introducing myself

General Blog
1

Hi everyone,

My name is Jacquelin Bertwell, I am a 40 year old wife and mother to 3 wonderful children. My oldest is Damien, he is a 20 year old college student with a wonderful girlfriend and life. Next is my only daughter Hailey, she is a 16 year old high school junior. She is active in school and has been on honor roll since middle school, we have high hopes for her college choices. And last but not least is my son Mizaac, he is six years old and in kindergarten, and my baby forever. I was diagnosed with idiopathic recurring pancreatitis is 1989, I had genetic testing done in 2007 which showed I have the SPINK1 gene, so it was changed to hereditary. In 2008 they decided to see if taking out my gall bladder would "help" with my constant pancreas pain. I had the laproscopy surgery on June 18th 2008, my wedding anniversary, yeah. I was okay for a few weeks, and then I had increased pain and vomiting, They did labs wich on top of the regular elevated amylase and lipase, I now had elevated lft's. So in September they did an ERCP and cut the pancreatic duct and common bile duct and put in a stent, that was removed in 2 weeks. No change. Waited some more as the numbers continued to increase. In January they did a liver biopsy, and I was told it showed AIH and possible PBC. So I started 40 mg prednisone, and later 6 mp was added, well to make a long story short, I took steroid for a year without ever having normal liver tests. So they switched to enticort, which I took for 6 months until I started getting worse, so I called the doctor, went back in and he wanted me to take prograf, an antirejection medication. So at this point I have not responded to any medication used to treat AIH, and they want to try something with even more side effect on my poor damaged liver. I decided to get a second opinion, I had my 2 liver biopsy slides and all images sent to Mayo clinic in Rochester Minn. and my PCP made an appointment with Dr. Lindor. I spent a few days there, and was diagnosed with primary sclerosing cholangitis. I had taken graphs my husband had made from my labs, and I agreed with him, that PSC was the correct diagnoses. Unfortunately, my local GI and hep do not agree with the dx from Mayo's. I have been running a fever and having aches, chill, naseau and vomiting since the end of August. I just had an ERCP at Mayo's in the end of July. So my local GI ordered an abdominal ultrasound, which showed a dilated common bile duct and a dilated pancreatic duct. I then had a MRCP I had the images sent to Mayo's, Well my local GI, said he thought it was just inflammation, and I needed to take steroids. Dr. Lindor said I need another ERCP that there is a blockage at the ampullary. So I am going back to Mayo's for the 3rd time this year to have it done. I live in Lincoln, Nebraska and was going to UNMC, which is were I would have to go for transplant, but I do not trust them there at all anymore. They have no concern over my condition and take forever just to return a call. Uggg. So this time I am going to see if Dr. Lindor will help me set up a better way to get help when I need it.

Thats my story, sorry it was so long.

2

Jacquelin,

Nice to meet you and thank you for sharing. I’m sorry to hear about your ordeal - given PSC’s rarity and difficulties, many of us share similar stories. And Endicort… yeah, that one is no fun and never seems to work.

I can only give my advice and support, but definitely go back to Mayo. During my diagnosis, I was originally at BIDMC in Boston, but they were dragging their feet and and didn’t feel that they were concerned enough. I switched to Mass General, and couldn’t be happier. It’s important to have a Doc who listens to your concerns and doesn’t simply brush off your symptoms. You know how you feel better than anyone else.

As to finding someone close to you, I’d be happy to ask my Doc, Ray Chung at MGH, if he knows anyone. I know he’s on the conference circuit, and may be able to recommend.

3

Jacquelin, I am sorry to hear about the mess you have had to go through. I have had just about every possible test there is to have done surrounding PSC about 20 times. Every medical institution wants to run and rerun every test themselves. It is a huge pain…and expensive…but as long as you get to the right facility it is worth it.

I am working with the Medical University of South Carolina’s transplant center and it is clear that they are the right facility for me to have my transplant done at. They are caring, organized, professional, experienced, and every person involved is well equipped to be doing what they do.

MUSC is the second rated transplant facility in the nation and second to Memphis. I know that isn’t next door to you, but if you checked out their facility they might be able to help you find a good facility closer to you. Memphis is where Steve Jobs moved to have his liver transplant.