What I learned at the conference

[Guest guest]

Dear All,I just wanted to share a couple of things I learned at the conference when I had the opportunity to speak to the experts alone and I realized that not everything we learned at the conference was sharedwith the whole group. Many of us were in different break out groups and spoke with the experts on a one to one basis, so I thought it might be a good idea to share with the whole group some of the things thatmaybe not everyone heard. Perhaps, I could start the list and people could cut and paste to grow the list andthen send it back so that we might all share what we found out. I will start.1] I learned that I need to have my son tested for VIT. A and VIT. D deficiency. Thank you Dave. Also thank youto Dr. Rosser who when we brought this up in the Parents break out session, said that at Mayo they now test all newly diagnosed PSC patients for A & D. If they are normal they re-test every two years. If not, then they treat and follow yearly.2] On a personal note, I learned that the breakout groups are immensely important in providing support even when we thinkwe don't need it. While I can now speak of my PSC son's dramatic events without crying, I still have a whole inmy heart where my second son is concerned. Thanks to the Parents group for the free therapy I received to start healing theguilt and hurt I feel when I think of what happened and how it effected Bill's brother. Thanks for not billing me for the therapy.3] I was able to speak with Dr. Rosser about drinking alcohol and young adults who are at an age where social drinking is so important to them. Basically he said this, before being listed, he is fine with this age group having an occasional alcoholic drink,at weddings, at special parties, but not on a weekly basis. Once listed, then the person must comply with the transplant centersrules for which some of them are absolutely no alcohol. Joanne G. did bring up one interesting comment on this, and that is thatsometimes it is easier to abstain completely than to stop at one. I would add to that.....that maybe it is easier to abstain if you knowthat you really could have one if you wanted it bad enough.4} I was able to speak with Dr. Gores about the CA 19 since Bills had been 143 and the 153 for his last two blood test. Dr. Gores had said thatanything above 100 was cause for concern and so I approached him after his talk. He said that he would be much more concerned if he were newly diagnosed but after the first 3 or 4 years post diagnosis if this level doesn't vary much then just having an MRI once a year is enough to watch the trend alongwith the blood work. He said that CA 19 can vary as much as 20 or 30 points per day so Bill's is essentially the same at 143 and 153. The conference is just such a wonderful opportunity to get to ask these questions and get answers in a setting where there is time to get an answer.Unlike Dr. appointments sometimes. I hope that this information is not only useful for me but for others too. Please add to the list if you were able to get some answers that others might benefit from as we were not all all places at all times.Thanks everyone,Lee

[Guest guest]

Thanks so much for that information! I am glad you posted it. I've never been checked for Vit A & D deficiency or the CA 19 thing. I will be requesting the tests this month withmy PCP. I look forward to hearing from others. Age 25 Dx PBC 10/06 Dx PSC 8/07 Dx Raynaud's Syndrome 03/08 Mommy to , , Adam & Caleb 6 years with the best hubby in the world,

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