Guest guest Posted November 1, 2007 Report Share Posted November 1, 2007 This morning I went with Rob, my husband, to his routine checkup with Dr. Henry Bodenheimer, Liver Specialist at Beth Israel Medical in NYC (By the way, is it just me or does it seem like there are lot of " Robs " with PSC!). Anyway, Bodenheimer has seen countless patients with PSC, some of whom have had it for 20 years! Rob's ALP levels have decreased in the last year which is good (I think they are around 160). Yes, he has been feeling more fatigued lately (which concerns the doctor), so he is looking at his thyroid level as well. He's also going for another MRI. In addition, Bodenheimer said he should get Adek multi vitamins and stay away from fatty foods (but not go crazy with vitamins). While it may seem like common sense, good nutrician is always a plus! The main point of this post is that while PSC can be fatal, I liked this doctor because he's not quick to give a timeline of when the ducts get blocked and the liver needs transplantation. He's also not super aggressive before it's time. Rob asked, " So how long do you think I have before I'll need a transplant? " His response was... " Everybody is different, " he told us. " You are far from the need for a stent or other invasive processes. My job is to try and keep you as healthy as possible, and look at how you're doing now. " At the same time, Bodenheimer has been on the board of organ transplantation at Mt. Sinai, works closely with American Liver Foundation, and an overall nice guy (not pompous or disengaged like some doctors). He did a thorough body check and asked Rob important questions (like does he get up a lot in the middle of the night? Does he have chills or fever, itching etc.). I felt more empowered because just from reading information on PSCPartners.org and other posts, I knew what Pruritus is and some of the other regularly used terms. I also felt good that I told him about PSC Partners and this Yahoo support group, because he had not heard of it for some reason, which goes to show you that we, too, can educate our excellent doctors! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2007 Report Share Posted November 1, 2007 Lezlee- I'm so glad you feel better about Rob's situation and that you have a great doctor who understands PSC. Just having peace of mind that you are in good hands is like winning a big part of the battle! Don't know about the # of Robs with PSC, but I do know of only one Fred with it. (All the other Freds I know are dorks, but at least they're PSC-less dorks.) Wife of Fred, PSC 03/04, UC 03/06, Pancreatitis 10/07 > > This morning I went with Rob, my husband, to his routine checkup > with Dr. Henry Bodenheimer, Liver Specialist at Beth Israel Medical > in NYC (By the way, is it just me or does it seem like there are lot > of " Robs " with PSC!). Anyway, Bodenheimer has seen countless > patients with PSC, some of whom have had it for 20 years! Rob's ALP > levels have decreased in the last year which is good (I think they > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2007 Report Share Posted November 2, 2007 You have crossed the first hurdle, finding a Dr. that you are comfortable with and seems interested in what you have to say. I felt really good with my husbands Dr. when I showed him the flyer for the PSC Conference this past year he read through it and commented on just about every DR that was going to be speaking. That made me feel good that he was apparently trying to stay on top of what was going on in the world with PSC. Good luck. Hettinger __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2007 Report Share Posted November 2, 2007 That's great, Lezlee - it sounds like it was a really positive visit. I always like hearing about people that have gone decades without needing a translant - i certainly hope our husbands will be part of that story! You know, since your doctor was receptive to hearing about PSC Partners, you might ask him if he'd be interested in some of the brochures - we've seen a couple gastros here in Philly - some more receptive than others - but a couple were truly excited to have some sort of resource to hand out to those diagnosed with PSC, since there is such a dearth of information out there (and a lot of what is out there is frighteningly out-of-date and depressing). The brochures are really terrific and might have the added benefit of being a way for you to connect with the other Bodenhemier PSC patients (and spouses?). best, Nina in Philly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2007 Report Share Posted November 2, 2007 Oh, what a great idea! How do I get brochures from PSC Partners. I'd love to give them to him. I wrote down the website but I'm sure he's really busy. I'd like to make it easier for him to give him brochures. Thanks! --- nlr_psc wrote: > That's great, Lezlee - it sounds like it was a > really positive visit. > I always like hearing about people that have gone > decades without > needing a translant - i certainly hope our husbands > will be part of > that story! You know, since your doctor was > receptive to hearing > about PSC Partners, you might ask him if he'd be > interested in some of > the brochures - we've seen a couple gastros here in > Philly - some more > receptive than others - but a couple were truly > excited to have some > sort of resource to hand out to those diagnosed with > PSC, since there > is such a dearth of information out there (and a lot > of what is out > there is frighteningly out-of-date and depressing). > The brochures are > really terrific and might have the added benefit of > being a way for > you to connect with the other Bodenhemier PSC > patients (and > spouses?). best, > > Nina in Philly > > Please visit http://www.cdbaby.com/lezlee __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2007 Report Share Posted November 2, 2007 This is the information on the PSC Partners website: To order printed copies of the brochure, please send an e-mail with your name, mailing address and desired quantity to Barb Henshaw at: pscbrochures@.... If requesting more then 50 brochures, please let us know how you plan to distribute them. Please allow 1-2 weeks for delivery. The brochure is also available in Hebrew " Living with Primary Sclerosing Cholangitis (PSC); Hebrew Translation " , thanks to Ellen and Chaim Boermeester of Israel. http://www.pscpartners.org/brochures.htm While you're there make sure you check out the info. for the conference this Spring - it was sooo great last year and it would be great to see/meet you there this year! Best, Nina in Philly > How do I get brochures from PSC Partners. Quote Link to comment Share on other sites More sharing options...
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