Guest guest Posted January 31, 1999 Report Share Posted January 31, 1999 Name: Penelope (Penny) Age: 55 Age at diagnosis: 53 Married for 31 yrs. to Jim Children: married daughter living in England, son working and living in NJ My husband and I have a legal/financial publishing business that I participate in when I am well. Before our children were born I was a commercial interior designer (B.F.A.). I enjoy reading, crossword puzzles and am a cat lover. As much as we like dogs, my balance is such that a big ol' dog would cause me some real problems in maintaining my balance (see below). I hope to be around to see a grandchild... My PSC was discovered by accident. A sudden jump in my cholesterol level prompted me to see my internist. Gallstones were discovered in my gallbladder and common duct and PSC was diagnosed during an ERCP to remove the stones in the duct prior to gallbladder surgery. I also got pancreatitis. A second ERCP was done to biopsy a " dominent lesion " . It was negative, but it seeded a life threatening infection with numerous abscesses in my liver. My gallbladder was removed and a hepaticojejunostomy was done to remove the common duct which was too inflamed by the infection to save. Nearly two years later I am still on massive doses of antibiotics since the doctors feel that the PSC will never allow complete drainage of the infection. One of the drugs, GENTAMICIN, used to fight the infection post-surgery, caused near total vestibular loss. That means that the balance mechanisms in my inner ears were nearly totally destroyed. It took me many months to learn to walk again and over a year before I could safely drive. NEVER LET THE DOCTORS USE GENTAMICIN UNLESS THERE ARE NO OTHER OPTIONS. At the time of the surgery I was told that I may never need a transplant (factoring in my age as well...). The infection proved to be too resistant and I was not doing well at all and was listed. In April of 1997 it was assumed that I would be transplanted by August 1997. I'm happy to say that I still have my own liver and that blood tests are quite normal. I dread the day that my antibiotics stop doing the job. I am very allergic and don't have many options. Penny ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 1999 Report Share Posted February 1, 1999 For those of you who have sent your info to me...please let me know if you would like it put on the web page that I am going to be working on. What it will consist of is your first name...and your " story " (story about how you were diagnosed, and how you are doing now) For those of you who haven't sent it yet...if you would like to be on the page..then please send. I would like to see everyone on there...but if you are not comfortable I understand. Have a GREAT day everyone!!!!! God bless and keep you all, Love, ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 1999 Report Share Posted February 2, 1999 Okay with me and Ed ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 1999 Report Share Posted February 6, 1999 Name: Tina Age: 28, 27 at diagnosis in June 1998 Sex: female, married one 2 1/2 year old daughter Other diseases: Ulcerative colitis throughout the entire colon, Chron's is not entirely ruled out, eill have further testing soon Meds: Daily doses Asacol 4800mg., Actigall 900mg. and now taking Prednisone 30mg.and Dicyclomine 40mg. for UC flare My story: February of 1998 I had a routine blood test that showed elevated liver enzymes and shortly after started having symptoms of UC. I was referred to a GI in May for the symptoms and abnormal blood levels. I did not have any symptoms of PSC, nor do I think I have yet. In the diagnosing of the UC the PSC was found in June 1998 (after numerous tests). I was then evaluated for liver transplant and told that I am in stage 1 of PSC and no need to be put on the list. Before all of this I had been a very healthy person. Did not have to take any medication and only went to the doctor for routine check-ups and minor colds / flu rarely. This all was such a hard blow. And now I'm dealing with a nasty flare of UC that almost landed me in the hospital on a feeding tube for a week. I've been married 6 1/2 years and just adore my daughter! I work about 30 to 35 hours a week as a dental hygienist and enjoy it. I am an energetic person. My hobbies include playing volleyball, painting ceramics, decorative painting (walls) reading and learning. Right now I feel good. My UC flare seems to be on the mend and I have no symptoms that I know of from the PSC (yet). I know that the future holds a lot of sickness for me and that is probably one of the hardest parts of being diagnosed with these diseases. Knowing that I have two chronic diseases that can hit and do harm at any time. The fact that the PSC is rare, has no treatment and no cure is a lot for any person to deal with. A liver transplant is a scarey thought! We all must go on with our lives and do the best we can. That's what I hope for everyone in this great group. Support helps so much, Thank you! Tina PSC ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 1999 Report Share Posted February 6, 1999 Tina-- You expressed so many of our thoughts so wonderfully. The part about being diagnosed w/2 diseases, one of which is rare IS very hard to live with. The knowing WHAT will happen, just not WHEN. I would love to be a " normal " person and know neither. My thoughts & prayers are with you. Laurie ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 1999 Report Share Posted February 6, 1999 , Two items here: one is my " story " for your web site, the other is a question I thought I'd bring up to you and the group about the " Our Inspiration " section of the site. I'll address that first, then add " My Story. " I just looked at the site and it looks neat. I had seen the story about the geese before and it is very appropriate, particularly the way you've done it with the clouds as the background. Here's the question: although I'm Christian myself, and a lot of the folks here may be, is it possible that the references in the story to Christians sticking together and helping each other might be offensive to non-Christians who might be suffering from PSC and might want to join our group? I know some non-Christian folks at work who I've had some wonderful discussions with, and this one lady points out to me frequently that we Christians often talk as if we have a patent on things like love and sharing and good living, etc. Examples: " It's the Christian thing to do. " " Good Christian living. " " Christian charity. " etc., etc., She has a point, and I wouldn't want your super efforts at getting this thing going and starting the web site to do anything that might be considered offensive or sectarian to anybody who might want to join and share in the goodness that this site can accomplish for everybody. I think the geese story is still just as good and representative of this group's sharing attitude without the references to Christianity. How about making those references to " Humanity? " Now for my " story. " I had sent something like this when you first started this up. Don't know if you still have it for the web, but here it is updated so you can add it. If it's too long, you can edit it. Age:59 Marital Status: Happily married 32 years Age at time of diagnosis: 55 and 47 (see explanation below) Stage of Disease: One, I think. Meds for this disease: Actigall, Colchicine for PSC; Sulfazalazine for UC (inactive for years) Other diseases: Ulcerative Colitis since 21 years old, but active only sproradically over the years, and no activity in the past 15 years. > Now tell a little about yourself: As noted above, married 32 years New Year's Eve. Have seven sons between the ages of 19 and 31, and five grandchildren. Reason for two ages under question about diagnosis: In 1987 or 1988 I was hospitalized for a week with pancreatitis. No known cause and no recurrence since then. However, at that time, as they were checking out my pancreas via ERCP, the gastroenterologist casually said something like: " You seem to have the beginnings of Sclerosing Cholangitis. " But then he said nothing more about it, I didn't ask much about it since he didn't make a big deal of it, and I went on my way after release from the hospital and one follow-up visit to the GI's office - didn't even get an explanation of what it was or how to spell it!!! Between that time and March of 1995 I had two episodes of severe abdominal pain and had to go to the emergency room of the hospital - pain was very similar to the pancreatitis pain. But after testing and, in one case staying overnight, they didn't find a cause and it was not a recurrence of the pancreatitis. Then in March of 1995, the severe pain put me back in the hospital and this time they kept me. They saw some stones in my gall bladder via ultrasound and scheduled gall bladder removal. However, the day before the scheduled operation the GI performed an ERCP to get a better look at what was going on. This is when I really learned I had PSC. They cancelled the gall bladder operation, saying that some day it might be needed for bile duct reconstruction and/rerouting. He inserted a stent in the common bile duct at that time and I've been having the stent replaced every three months (via ERCP) since then. In November of 1998, because I had had cholangitis episodes three out of the four previous times before the 90 day time had elapsed, my doctor moved these up to every two months instead of three. Had most recent stent replacement January 8 and just two weeks later, on Sunday January 24, I had such a severe cholangitis episode that they put me in the hospital. Since the bacteria didn't respond to CIPRO (which it normally does) the infection got into my blood stream and I stayed in the hospital on a liquid diet and IV antibiotics (other than CIPRO - they experimented with various ones till they got the one that would work). I came home last Friday, January 29, on at-home IV antibiotics for 10 more days (through Monday, February 8). While I was in last week the Doctor did another ERCP and took the stent out and left it out since it was the seat of the infection. He did a dilatation on the common duct and cleaned it out real good, injecting some of the antibiotic right up into the liver. Doctors are now discussing next steps and have referred me to the head Gastroenterologist/Hepatologist at the Hospital of the University of Pennsylvania for an evaluation (he is the head of their liver transplant division also). Appointment there is on February 15, so we'll wait and see what happens next. The big discussion seems to be whether to do bile duct reconstruction now or not because of these recurring cholangitis episodes even with the stenting. Problem is, as was discussed within this group a few weeks ago, there is great concern that subsequent liver transplant is rendered very difficult if not impossible if and when needed. That's a pretty long-winded story - sorry about that. Edit it down however you want for the web-site. I live in Drexel Hill, PA, just outside of Philadelphia to the west. > Re: PSC biography > > > For those of you who have sent your info to me...please let me know if you > would like it put on the web page that I am going to be working > on. What it > will consist of is your first name...and your " story " (story about how you > were diagnosed, and how you are doing now) For those of you who > haven't sent > it yet...if you would like to be on the page..then please send. > I would like > to see everyone on there...but if you are not comfortable I > understand. Have > a GREAT day everyone!!!!! > God bless and keep you all, > Love, > > > ------------------------------------------------------------------------ > Backing up has never been easier. Here's an automatic, > Hassle free way to protect your valuable data without > Extra hardware. Download, install and try @Backup. > http://offers./click/215/1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 Bill: I agree with your comments wholeheartedly about how the " Christian " comments could be limiting. I support everyone with this disease regardless of their faith (or absence). Mitch ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 you made a very good point. My boyfriend had said the same thing to me..but I just kind of blewit off. He and I will work on it. Maybe saying something like " like the geese, with each other's support we will make it together " . Thank you... TIffany ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 you made a very good point. My boyfriend had said the same thing to me..but I just kind of blewit off. He and I will work on it. Maybe saying something like " like the geese, with each other's support we will make it together " . Thank you... TIffany ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 Erwin, Not sure that Colchicine does anything, neither is my doctor. Some research a few years ago indicated the Colchicine, which is really a medicine that works on gout, had some positive impact on a disease called Mediterranean Family Disease (I think that's what he called it)which had something to do with clogging. So some docs are trying it with PSC, but not really sure if it does anything. Just kinda experimental. And it doesn't cost much, so they don't think it hurts to try. The actual explanation on the " Patient Advisory Information " sheet that comes with it from the pharmacy says: " This medicine is used to treat and prevent pain associated with gouty arthritis. It may also be used to treat other conditions as determined by your doctor. " Don't know if this helps, Erwin, but that's the scoop on it from here. Bill > Re: PSC biography > > > Bill, > > I see that you take Colchicine. Could you please describe what it > is supposed > to do, and what your thoughts are about its effectiveness? > Thanks. Erwin P. > > PS: I agree with you and Mitch and 's boyfriend regarding the > Christian aspect. I vote for keeping the Geese story but toning down the > Christianity. > > ------------------------------------------------------------------------ > Fresh flowers are the perfect way to say " I love you " . > Shipped direct from the grower, Proflowers.com has > arrangements from $29.95 plus S & H. > Click here: http://offers./click/216/0 > > Quote Link to comment Share on other sites More sharing options...
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