Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 ptrwilde wrote: > > Will my wife be dead in 15 years? (youngest son will be 18 then) > Will she still have her own liver? > What about cancer? .....of the bile duct or of the colon. Hard questions to give a definite answer to, but based on the experiences I've seen in this group odd are that she'll be doing fine (either with her own liver or with a transplant) in fifteen years. I've had the disease since '92 (actually probably longer, but that's when I was diagnosed), and still have my own liver, and since diagnosis, I've gotten married, had two kids (2 and 6 years old now). Others have lived longer with the disease without needing a transplant (anyone know who currently has the record?) As far as other complications like cancer, they can happen, but they're not by any means a sure thing and odds are that they won't.... I know it's tough dealing with all this right now, but with this disease you've got to take things one day at a time. Really that's the attitude everyone should have... no one knows how long they've got, it's just with PSC we're more aware of what some if the specific risks are. Anyhow, I hope that helps a little bit :-) Welcome to the group! Feel free to ask any questions, vent your frustration, whatever you need to here. That's what the group is for! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 , it is always a SHOCK at first, but then you have to get in there, support her and fight, fight, fight...prognosis is GOOD...ALWAYS ask the docs questions, don't be afraid to ask, you will get TONS of information from this group that will help ALL of you through this!!! My husband was diagnosed May 2000 with PSC, transplanted 2-4-04 at Univ. of Cincinnati and is doing well. The only way I got through all this was trying to stay positive. One thing I would suggest is getting with your OPO (Organ Procurement Organization), for Kentucky it is KODA...they have support groups pre-transplant and post-transplant...I just wasn't aware of it PRE transplant...they are a wealth of information for you...and like I said, you have found the right group to get you through these new chapters in your life. Hang in there!! Bobby & Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 , Like Anne said, the initial shock is the worst. By being here, you've found the best coping mechanism around though. All kinds of success stories here. If it can happen to a PSC patient, somebody here has been through it. Sure, we have the occasional tragedy, but put any group of 500 people together and that will happen. PSC ain't no picnic, but it ain't no death sentence either. Part of beating the disease is not letting it define you. I tell everyone that this diagnosis will ultimately be more of a blessing than a curse. It has given me a new sense of appreciation for my friends, family, and life in general. It has been the catalyst for an impending career change. I laugh more and cry more. It has brought me together with all the wonderful people here. I know that at this time it's hard for you to see a silver lining... but chin up. Peace, Bill Wise PSC '00, Listed Tx '11/04 (37 yo father of three) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Hi , I'm sorry that your wife's illness brings you here, but you're already a better caregiver than you think by seeking out a group like this for information and support. You said in your email that you think further endoscopy would be needed to make a definitive diagnosis. I'm curious what tests she's already had? Looking back, I see that my first PSC symptoms were in high school (1990), and so I've been living with this disease since then. I'm at that dreaded fifteen year mark. I have my own liver, though I am listed for transplant. On the one hand, PSC has been the worst thing that has happened to me - lots of medical tests and procedures, living life uncertain about how long I had, and enduring some of the difficult symptoms (itching) but on the other hand, it has been the biggest blessing, too. When I was diagnosed in 1998, I was a workaholic. Although it took several years of having this disease for me to realize that, I've taken stock of my life and rearranged things quite a bit. Now, I'm a stay at home Mom with our only son, who was born in 2000 - after diagnosis. I do crazy things like go all out for birthday parties and I try to see the blessings (small and large) in each new day. I have a closer relationship with my husband and with my family than I might have had without PSC. I don't take people for granted anymore. So, while I wouldn't wish PSC on my worst enemy, I have learned that it isn't all bad. In even the roughest parts, we find humor - like before my ERCP's, we say that my " ducks " need cleaning and quack a bit. I recommended this book to the group the other day, and I think it'll be particularly helpful for your family since you're just beginnning the journey. It is called, How to Help Children Through a Parent's Serious Illness: Supportive, Practical Advice from a Leading Child Life Specialist by Kathleen McCue with Ron Bonn. Although you may be tempted to " spare " your children the news, one of the best things we have done is shared this experience, the doctor's appointments, lab visits, and even hospital visits with our son. He's well aware that Mommy needs a new liver, and this makes it easier for all of us. It is all a lot less frightening for him since he knows what's going on. The book also helped me deal with some of my own issues about being the sick parent in our family. Go ahead and grieve the passing of your wife's good health. Once you get through that stage, you can work on thinking positively. I hope this helps...We all deal with diagnosis in different ways. Take care, Deb in VA PSC 1998, UC 1999, Listed Ltx 2001, HE 1/2005, MELD 18 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 ----- Original Message ----- brought me together with all the wonderful people here. I know thatat this time it's hard for you to see a silver lining... but chin up Good job Bill! We love you too and see a really compassionate man in you. Thanks for being here and all your involvement. Dee wife of Bob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Hey Speaking form the " supply " side here (I got the supply & would like to sell.......or shoot give it {PSC} away!) Sorry to hear this week will alway be etched in both you and your wife's memories. YOU both are entitled to take whatever time is needed to reset your sails. This IS a major life event. Will your wife be gone in 15 years? No one knows.....who is to say anyone of us will be here tomorrow, or in 5 minutes? I Do have 3 thoughts for you today: ONE: Take it one day at a time....easy does it (the old AA addage has application here) This is a L O N G term illness.Practically, don't overwhelm yourself with information/ decisions, etc. etc. etc. by taking in too much, to fast. TWO: I too am a fellow UC patient, less 5 feet of a formerly nasty colon. My point here is that 10, 20 or 30 years can change the entire landscape of medicine & this is the time frame you probably are working with. In my case the ultimate cure for UC wasn't even on the drawing board at the time of my diagnosis of UC. But 20 + years fixed all of that. THREE: There are a GREAT many fellow partners " along for the ride " feeling and thinking many of the same things that you well express here. Take advantage of this group. It is why we exist as a group, support one to another. Best jd, 44 UC 1973, Jpouch 2000, Pouchitis 2001, PSC 10-04 ston City, IL krmpotich@... My first post > > > Hi, > My wife had unusual blood test results last year and, one thing > leading to another (via ulcerative colitis diagnosis), was told this > week that she has PSC. > > I have sucked in all the info I can find and still can't find > anything that is terribly optimistic. I guess I am in the early > stages of life married to a PSC sufferer (if that is the right phrase > to use) and I dread to think of what is going to happen. > > Will my wife be dead in 15 years? (youngest son will be 18 then) > Will she still have her own liver? > What about cancer? .....of the bile duct or of the colon. > How much will she suffer (she's not good ill and I'm not the best > carer!) > > You can see that I have a pessimistic outlook at the moment and, as > far as I can tell, the diagnosis cannot be 100% without further > endoscopy. > > I know I am not the only one to partner a PSC sufferer and it's not > even me with the disease but I'm really struggling to think > positively. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2005 Report Share Posted February 24, 2005 Dear ; I'm very sorry to hear about your wife's PSC diagnosis. It's a terrible shock. But please know that the disease can progress at very different rates in different patients .... its course is very hard to predict, and can go through unexplained remissions and exacerbations. There are reports of patients remaining asymptomotic for many years without any medical interventions (see. e.g. Chapman RW, Burroughs AK, Bass NM, Sherlock S 1981 Long-standing asymptomatic primary sclerosing cholangitis: report of three cases. Dig. Dis. Sci. 26: 778- 782.) Ursodiol at high-doses may possibly delay disease progression [trials to confirm/test this are still in progress] and there is growing evidence that it protects against colon cancer and cholangiocarcinoma. Some patients have a version of PSC called small- duct PSC which seems to have a more benign course. Research is going on at an incredible pace, and as others have mentioned, may possibly lead to new, more effective treatments in the near future. So there is reason to be hopeful about new therapies that may be available 10 years down the road; therapies that are unimaginable at the present. It is this thought that keeps me positive. Best regards, Dave (father of (19); PSC 07/03; UC 08/03) > > Hi, > My wife had unusual blood test results last year and, one thing > leading to another (via ulcerative colitis diagnosis), was told this > week that she has PSC. > > I have sucked in all the info I can find and still can't find > anything that is terribly optimistic. I guess I am in the early > stages of life married to a PSC sufferer (if that is the right phrase > to use) and I dread to think of what is going to happen. > > Will my wife be dead in 15 years? (youngest son will be 18 then) > Will she still have her own liver? > What about cancer? .....of the bile duct or of the colon. > How much will she suffer (she's not good ill and I'm not the best > carer!) > > You can see that I have a pessimistic outlook at the moment and, as > far as I can tell, the diagnosis cannot be 100% without further > endoscopy. > > I know I am not the only one to partner a PSC sufferer and it's not > even me with the disease but I'm really struggling to think > positively. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 , Everyones body will react to PSC in a different manner, but with your wifes being found by unusual blood tests instead of some tougher manifestation of PSC may be a good thing. I started down this road 30 some yrs ago and it was not til 2 yrs ago I had a tx. In that time, our 2 daughters grew up, went to college, got married and gave us beautiful grandchildren. The 3 mo old we watch every day, while her mother teaches, and what a joy that is. One day at a time, smell the roses or whatever it takes are the cliches to remember and live by. They work! By the time your wife manifests this disease in more challenging ways, a cure may be on the horizon, as medicine is making step after step toward better knowledge. You are in this together, and having each other, how can you lose. I know how hard it is at first, but we will share our thoughts, personal and otherwise, anytime you need them. TimL Re: My first post Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2005 Report Share Posted February 25, 2005 , I'm sorry your wife (apparently) has PSC. I could have written this exact same message 15 years ago. My wife had UC for a long time, but started having unusual blood tests about a year or two after our daughter was born. She was around 30 years old at that time. She was diagnosed with PSC eventually and was put on the transplant list after about 7 years. After 3 years of waiting, she got a liver transplant. That was 5 years ago, and she is now doing great. Our daughter is now in college. is now in good health. She works 40+ hours per week. As a side benefit of the transplant drugs, she rarely has any UC problems any more. Of course everyone's experience is different, and not everyone will have this good an outcome. The course of the disease seems to vary a lot by individual. Best wishes, Roy T. My first post > > > Hi, > My wife had unusual blood test results last year and, one thing > leading to another (via ulcerative colitis diagnosis), was told this > week that she has PSC. > > I have sucked in all the info I can find and still can't find > anything that is terribly optimistic. I guess I am in the early > stages of life married to a PSC sufferer (if that is the right phrase > to use) and I dread to think of what is going to happen. > > Will my wife be dead in 15 years? (youngest son will be 18 then) > Will she still have her own liver? > What about cancer? .....of the bile duct or of the colon. > How much will she suffer (she's not good ill and I'm not the best > carer!) > > You can see that I have a pessimistic outlook at the moment and, as > far as I can tell, the diagnosis cannot be 100% without further > endoscopy. > > I know I am not the only one to partner a PSC sufferer and it's not > even me with the disease but I'm really struggling to think > positively. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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