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  1. #1
    Join Date
    May. 4, 2008
    Location
    Virginia
    Posts
    1,333

    Default Small Update on Me

    If anyone is interested or has wondered.

    I have chronic pancreatitis (confirmed calcifications on my pancreas and thickening of the organ walls) that causes constant pain on its own daily.
    I also have something triggering repeat attacks of acute pancreatitis. The attacks of acute pancreatitis are what caused the chronic pancreatitis to form.

    I have been an inpatient between 28-30 times since January of last year 2012. (Lost count). Yes, that is a lot. They usually last between 4-10 days each time. Typically my lipase will shoot up to somewhere between 6k to 12k and they will spend several days just getting that down to normal (under 140) then another few days reintroducing food before I go home.

    Yes, that is a LOT of hospitalizations. I have spent a total of months on my back in a hospital bed between Stafford and Mary Washington hospitals. I have also been to VCU and Johns Hopkins.

    The long and short of it is that even Hopkins could not figure out what is triggering these attacks. They come on suddenly, and there is no pattern. So at this point rather than live with being home for a week or two then right back in the hospital we are looking now into potential surgical solutions. I had a liver biopsy last hospital stay to see if my liver is healthy enough to support an islet cell transplant should we decide to go as far as complete removal of the pancreas.

    I know that is a lot of hospitalizations.....and I can back up everything I am saying. This isn't a twisted case of munchausen by internet, although I wish it was. Should anyone feel I am making this up, I would be happy to provide whatever proof you need to reassure yourself that alittlegray isn't a crackpot.

    Although I am out of my head on drugs some days. My list of medications is astronomical.

    Anyway, my point was actually GOOD news....I just had an 8 week stretch where I had NO hospitalizations, and I am hope full that means they are going to start getting farther apart now. My Gastro has my daily pain largely under control, which is awesome. And I finally settled a lawsuit against a driver who hit me 3 years ago causing me to go through 3 knee surgeries. It isn't much more than enough $$ to pay off our deep bills from staying afloat while I can't work, but there is enough for me to get DD some lessons and maybe a show or two in the next few months.

    Things are looking up although DH's job contract ends September 27th so he is job hunting again. But really we are in good spirits in our house and hopefully in the next 6 months this pancreas thing will be over one way or another. Until then the only thing that sucks is the sheer boredom of laying in the hospital time after time.

    That,s where I am at if anyone is wondering.
    Sorry to see xtranormal is gone
    For funnies, search youtube for horseyninjawarrior!

    Www.caringbridge.org/visit/mysecretgarden


    3 members found this post helpful.

  2. #2
    Join Date
    Aug. 9, 2007
    Posts
    9,180

    Default

    Well I'm bummed as I just read your thread about your daughter being horseless. Come on guys! With all the horses in VA and all the barns, someone needs for S's daughter to ride her horse!

    And get well OP. I wish you could get a pancreatic transplant to take care of the pain and discomfort and hospitalizations you have suffered for years now.

    Someone let OP's daughter ride and show your horses!

    BTW everyone: OP has been hospitalized. She did not want to come forward with her illness a while back because of the people who do post when they are not ill. I've called her in the hospital. So I know she is not lying to anyone. And has had terrible pancreatic pain.

    I don't like that "one way or the other" though. I hope it's that you will get better and be pain free.


    1 members found this post helpful.

  3. #3
    Join Date
    May. 4, 2008
    Location
    Virginia
    Posts
    1,333

    Default

    Yes, we are considering pancreatic transplant. That is our last resort if nothing else works, but the biopsy did show my liver is healthy enough to support islet cell transplant, and hopefully that would prevent me from becoming an insulin dependent diabetic. Or at least reduce the need for insulin shots somewhat. Odds are best they would start with something like a Whipple procedure first and see where that goes.
    Sorry to see xtranormal is gone
    For funnies, search youtube for horseyninjawarrior!

    Www.caringbridge.org/visit/mysecretgarden



  4. #4
    Join Date
    Jan. 17, 2008
    Location
    Dutchess County, New York
    Posts
    4,212

    Default

    I am glad for the update! I think of everyone who's posted about their health problems and always wonder how they are doing, but don't want to ask in case they don't want to talk about it. There are quite a few (Suz, Punkie among others). So thank you for letting us know how you are. Glad things are on the upswing.



  5. #5
    Join Date
    Nov. 18, 2010
    Location
    california
    Posts
    4,710

    Default

    Glad you are going through a good period. Wish you were out here, I am not riding much due to many things and my work is getting busy. I would love to have someone who could ride and enjoy my baby OTTB who is doing so well right now.

    I am always here. Glad for the update.



  6. #6
    Join Date
    Mar. 8, 2004
    Location
    Baltimore, MD
    Posts
    20,405

    Default

    Glad to hear they are finally getting somewhere. Continued jingles.



  7. #7
    Join Date
    May. 4, 2008
    Location
    Virginia
    Posts
    1,333

    Default

    Quote Originally Posted by SMF11 View Post
    I am glad for the update! I think of everyone who's posted about their health problems and always wonder how they are doing, but don't want to ask in case they don't want to talk about it. There are quite a few (Suz, Punkie among others). So thank you for letting us know how you are. Glad things are on the upswing.
    I never mind being asked, it doesn't bother me. I rarely start something like this thread because I'm not really looking for handouts or the like. I just appreciate hearing from those who have been there, done that you know?

    Quote Originally Posted by stolen virtue View Post
    Glad you are going through a good period. Wish you were out here, I am not riding much due to many things and my work is getting busy. I would love to have someone who could ride and enjoy my baby OTTB who is doing so well right now.

    I am always here. Glad for the update.
    Well, DH is desperately trying to find work in Seattle, or Portland or possibly CA. Our families are west coast so we want to move home. Maybe one day we can meet! I would love that.

    Quote Originally Posted by Laurierace View Post
    Glad to hear they are finally getting somewhere. Continued jingles.
    Thanks for the jingles!!
    Sorry to see xtranormal is gone
    For funnies, search youtube for horseyninjawarrior!

    Www.caringbridge.org/visit/mysecretgarden



  8. #8
    Join Date
    Dec. 29, 2007
    Posts
    986

    Default

    Yay-hope you continue to have good days!
    "Those who know the least often know it the loudest."



  9. #9
    Join Date
    Nov. 13, 2006
    Posts
    1,425

    Default

    [QUOTE=alittlegray;7152492]I never mind being asked, it doesn't bother me. I rarely start something like this thread because I'm not really looking for handouts or the like. I just appreciate hearing from those who have been there, done that you know?





    Well, DH is desperately trying to find work in Seattle, or Portland or possibly CA. Our families are west coast so we want to move home. Maybe one day we can meet! I would love that.
    [Quote

    The dr. That invented/perfected the whipped procedure is at Virginia mason in Seattle and manages my dads pancreatitis. Off the top of my head I can't remember his name, but y dad has had nothing but good things to say about him and the whipped procedure has literally been a lifesaver. If you do end up here please pm me and I will put you in contact with my dad. If nothing else it might help to have someone to commiserate with. Between myself and the other PNWers on this board I'm sure we could find some ponies for your dd to ride



  10. #10
    Join Date
    Nov. 13, 2006
    Posts
    1,425

    Default

    Whipple stupid auto correct



  11. #11
    Join Date
    Jul. 15, 2006
    Location
    VA
    Posts
    893

    Default

    Alittlegrey I am glad you are having a good stretch. I have something that they suspect is chronic pancreatitis but can't quite be sure, when I am good I am good but like you I can never predict what will bring it on, but I can tell in the morning if I should or shouldn't attempt food. Zofran has helped a lot, but a mini attack still sneaks in sometimes and sends me running to the restrooms and then wipes me out for the rest of the day. I hope you have a good outcome and keep your chin up!!
    Railgirl.blogspot.com



  12. #12
    Join Date
    May. 4, 2008
    Location
    Virginia
    Posts
    1,333

    Default

    Quote Originally Posted by MMacallister View Post
    Alittlegrey I am glad you are having a good stretch. I have something that they suspect is chronic pancreatitis but can't quite be sure, when I am good I am good but like you I can never predict what will bring it on, but I can tell in the morning if I should or shouldn't attempt food. Zofran has helped a lot, but a mini attack still sneaks in sometimes and sends me running to the restrooms and then wipes me out for the rest of the day. I hope you have a good outcome and keep your chin up!!
    There is a gastro that works out of Mary Washington that is doing endoscopic ultrasound which is what you need. His office is Rappahannock Gastroenterology and his name is Dr. Hardy. Good enough guy, and a huge deal that this is now being done locally instead of you having to go to VCU. The ultrasound will show for sure if you have chronic pancreatitis.
    Zofran is good, phenergan is better but will make you a little sleepy. Also, once they show the chronic pancreatitis they can get you on something like Zenpep to replace the enzymes your body may not be making anymore. You will feel way better if you can confirm it and get started on the right meds. Also, Dexilant is fabulous if you have heartburn.
    The majority of my pain is from the chronic pancreatitis, it sucks. I would push for a firm diagnosis if I were you, as you may just have delayed gastric emptying or another issue easier to treat. Have you had a gastric emptying study done to see if you have a slow gut?
    Sorry to pry...I will add you to my daily prayer list in hopes you are right as rain asap! If you ever need to talk or have questions, please don't hesitate to pm me.
    Sorry to see xtranormal is gone
    For funnies, search youtube for horseyninjawarrior!

    Www.caringbridge.org/visit/mysecretgarden


    1 members found this post helpful.

  13. #13
    Join Date
    Dec. 10, 2001
    Location
    PA
    Posts
    1,854

    Default

    I am very glad to hear you are having a relatively good period ALittleGray.

    Chronic illness and pain must be very difficult, and I imagine you are one tough cookie. I hope the Dr's will soon come up with a good solution for you.

    I'll send good healing vibes to you, and successful Job hunting vibes to your DH.
    OLD FRIENDS FARM-Equine Retirement-We LOVE Seniors!! Spoiling Retirees since 1998
    http://www.angelfire.com/oldfriendsfarm/home.html
    Charter Member of UYA!



  14. #14
    Join Date
    Nov. 18, 2010
    Location
    california
    Posts
    4,710

    Default

    The Calif. economy is really picking up. Hope you can land on the west coast ! PM me if you need anything.



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