Guest guest Posted July 26, 2000 Report Share Posted July 26, 2000 Hi Trish, Please hang in there-I understand your frustration completely, I live in laurel, md in between dc and Baltimore. I feel exactly as you do. I now have kaiser permente and is confined to their centers- I usually feel that I know just as much as their doctors and staff. I usually get answers that are not definitive. It frustrates me that there is not an expert known to me that can give me an definitive answer about this disease and how it will affect my life. All you can do is try to live a healthy life, living each moment to the fullest, seek out information on your own and make the best possible decisions for you . My symptoms have remained nonprogressive for the last two years occasional jaundice, frequent fatigue and greatly improved itching(I use to lie awake at night scratching this would make me even more tired the next day--I believe that questran or actigall does help me with the itching and fatigue but I believe the biggest help is my attitude toward life and this disease. My favorite hobby three years ago was lying in bed watching tv all weekend. I do believe that you should get proper rest and listen to your body. I still enjoy lying around on the weekends, but it's no longer all I do. After the diagnosis, I decided that if the Lord said my time was up on tomorrow-I can say that I Lived today to the fullest. I have been terrified and fearful of the future in the past-but I decided that I could not live w/o having peace in my heart today b/c of not knowing what lies ahead. I 've had symptoms for the last four-five years. I have seen specialists for the last two and half. As of this date after many test and procedures, my doctor just last week wants to repeat an ERCP because he is unsure of my last doctors diagnosis. When ask why he states that it's probably is psc but goes further to say that my previous results indicates that that the procedures were not definitive. Since it has been your experience and may continue to be so that you know more than your doctor, that you will have to find a way to peacefully enjoy life every moment with the uncertainty that will exist. The minute that I find a doctor that is knowledgeable in MD-DC I will share with the group. I've only had three GI-all of which admitted that they knew little about the disease. I wish you inner peace. Be encouraged . Yherring@... foggy brain???? Hi to you all, I'm not a very active member of this supportgroup, but In the last year I've learned a lot from you guy's!!! But lately I'm experiencing a lot of forgetfullness, not beiing able to remember names I normally would remember, difficulty concentrating. Is this what you call brain fog??? I'm having this problem since I started taking hormones for IVF (fertilitytreatment) about 2 months ago.(it was unsuccesssful.) My livervalues are very low, in fact they are within the normal range for a healthy person (but on the high side)so no complaints from there. I remember some conversations about a test for brain fog??? What can you do about it? It is very awkward that sometimes I can't remember what my friends told me about , for exampel, there hollyday.( or how to spell in english) It feels like I'm not interested,but I am! So it's very frustrating. Is there something I can do in my diet? I'm eating a lot of vegetables, not a lot of meat ( dutch people don't eat a lot of meat compared to americans and I'm eating even less), not much fat and sugar and drink a lot of water. I'm not taking any Urso because of our childwish. I read the discussion about pregnancy and Urso ,but I'm not taking any risk. I gess I'm still one of the lucky one's , without any medications for my liver my values went down (since I stopped working). I'm only experiencing a lot of fatigue, so I'm on the dutch disability. I hope you can help me with the fain fog (maybe a transplant?:-)))). from Holland. ( or The Netherlands as we actually say) ________________________________________________________________________ ________________________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2000 Report Share Posted July 26, 2000 Yolanda, Phil and I have Kaiser, I changed to Kaiser to keep him on it. Kaiser pays 100% of the transplant, and when Phil was diagnosed (the GI doctor Dr. Zweiban) pin pointed it even before his ERCP and due to his infections he was referred to a Hepatologist who was very aggressive in getting him listed. His name is Dr. Kahn. If your doctors aren't knowledgeable have them contact either of them in California. They are wonderful. They told me never to switch from Kaiser. I switched my insurance because I ultimately would have to cover Phil. If I had to get a job at Kaiser, I wouldn't change insurance. They have been wonderful. Dr. Zweiban told us he has 25 PSC patients. He does ERCP all the time and doesn't recommend them unless it is absolutely necessary for diagnosis or to remove a stone that is causing a blockage (or to put in a stent which wasn't an option for Phil because he has too many constrictions). Dr Kahn is a wonderful Hepatologist and very knowledgeable about PSC and Dr. Donovan did a talk on PSC for an American Liver Foundation seminar. Even Phils Internist is knowledgeable. Insist on going to a Hepatologist. Dr. Zweiban Phil's GI doctor has a subspecialty in Hepatology. There are Kaiser doctors that are very good and it sounds like you are getting good treatment. We all have to gain all the knowledge we can and give it to the doctors it is necessary that we take an active part. Our doctors have been very encouraging in the caregiver being proactive and have never resented anything I have come up with. I hope and pray that you will find a knowledgeable doctor/s to help you. Peg foggy brain???? > > Hi to you all, > > I'm not a very active member of this supportgroup, but In the last year I've > learned a lot from you guy's!!! > But lately I'm experiencing a lot of forgetfullness, not beiing able to > remember names I normally would remember, difficulty concentrating. > Is this what you call brain fog??? > I'm having this problem since I started taking hormones for IVF > (fertilitytreatment) about 2 months ago.(it was unsuccesssful.) > My livervalues are very low, in fact they are within the normal range for a > healthy person (but on the high side)so no complaints from there. > I remember some conversations about a test for brain fog??? > What can you do about it? > It is very awkward that sometimes I can't remember what my friends told me > about , for exampel, there hollyday.( or how to spell in english) > It feels like I'm not interested,but I am! So it's very frustrating. > Is there something I can do in my diet? > I'm eating a lot of vegetables, not a lot of meat ( dutch people don't eat a > lot of meat compared to americans and I'm eating even less), not much fat > and sugar and drink a lot of water. > I'm not taking any Urso because of our childwish. > I read the discussion about pregnancy and Urso ,but I'm not taking any risk. > I gess I'm still one of the lucky one's , without any medications for my > liver my values went down (since I stopped working). > I'm only experiencing a lot of fatigue, so I'm on the dutch disability. > I hope you can help me with the fain fog (maybe a transplant?:-)))). > > from Holland. ( or The Netherlands as we actually say) > > > > ________________________________________________________________________ > ________________________________________________________________________ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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