My husband who is 49 has been recently diagnosed with PSC. He has had elevated liver levels for over 10 years. He saw a GI doctor who did an ultrasound and then, when nothing was seen, the doc dropped it. His levels are now sky high and so we went to another specialist who tested him for hepatitis and also did an MRI with dye and a biopsy. He doesn’t have any symptoms except the liver levels. He is stage 3. The doc is ordering a colonoscopy. Does anyone have a good recommendation of a doc in Boston that specializes in PSC? I am so glad to have this group as we have been blindsided by this. We have 3 kids and don’t know whether we should worry them at this point. Thoughts? They are 17, 17 and 14. Thank you!
Boltec23,
Welcome to our community. Thank you for reaching out to us about your dear husband. Having been where he is today I can tell you of a certain that you will need the support of your 3 children as you go through this as a family. I would encourage you to share with them everything that is going on, keep them informed, and allow them to be there and do for your husband those things a child can do to comfort, love and cherish. There is hope dear lady, PSC is not the end of the line. You will need one another throughout this long process. PSC progresses at different rates in each patient. I went from diagnosis to transplant in 4 years but some go for many years before the need of transplant, but keep in mind that transplant is the end goal in all this. It’s so important that your husband do all he can to exercise regularly, keep his protein intake up as he starts losing weight, etc. With PSC, I was told by my doctors that there is no such special diet, just eat what you can. He will find out that’s so true as the sicker he gets he will not be able to stand some tastes and smells and that’s ok. It got so bad with me and nausea that we purchased a skillet that my wife could cook things like stir fry and hamburgers out on the back porch. We burned a lot of candles to keep the smells in check. It may sound crazy to everyone but believe me the nausea can be pretty bad. One thing that helped me a lot was Zofran. Ask the doctor for a Rx for that. It helps with nausea but doesn’t make you go to sleep like some other meds. There’s so much I could share with you, and I am here for any questions you might have. But definitely share with your children. They are old enough to handle this and you need to keep them and any family members, etc. up to date with his progress. I would encourage you to go with him to every appointment, take notes and ask the hard questions he doesn’t or forgets to ask. This will be a time when you must lean on one another, but there is hope! Keep in touch.
Mark
PSC 2011 / Liver Transplant 2015
Thank you so much for the welcome and advice. How do you prepare for this financially? When were you not able to work anymore? The doctor bills will be high I am sure. My husband is thin and very active so he is good that way. We are waiting for the reports from his doc showing specifics. Then I will call for an appointment with someone who specializes in PSC. I am glad there is a support group!
Hello again Boltec23,
I am glad to hear that your husband is staying active. That will be so important in the years ahead. I’ll do my best to answer your questions.
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Regarding Finances - Unless you have considerable financial capital you will have to depend on your health insurance to pay for the surgery. They will not operate without insurance or cash money. The surgery itself will cost about $500,000.00 USD. The care after transplant as far as the hospital and all will probably run another $150,000.00 USD. Medications can run as high as $1,500 to $2,000.00 USD a month for the rest of his life. Anti-rejection meds are high. There are also labs that will have to be done on a regular basis after transplant. They are very frequent immediately after transplant and for the first year and then after the first year are usually every 3 months unless there is a medication change. My labs run around $1,500.00 each time if I had to pay out of pocket. Again, insurance is so important for long term care. There are $0.00 co-pay cards you can get from drug manufacturers to assist with the co-pay on the anti-rejection medications. Be sure and ask the doctor to write for the brand name if you are paying with insurance so you can take advantage of those discount cards.
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As far as returning to work. Everyone’s different according to how well they recover. In my case, my surgery was July 23rd, I was in the hospital about 5 nights then released to a local Residence Inn for another 3-1/2 weeks. I work in a Bible College context in purchasing. A month after surgery my doctor would let me go in for 2 hours a day then I would go home and for me since I had computer access back to my office I would do a lot of work from home. Over the coming weeks I would increase my daily work load. I was back to 40 hours a week within a couple of months I think. One thing to keep in mind, for the first 3 months post-transplant he will not be able to lift anything more than 5 pounds. (A gallon of milk is about 8 pounds). Then they increase to 10 pounds for another 3 months and eventually the restrictions are lifted but you still have to go easy. I couldn’t drive probably for the first month or so after surgery then I gradually was able to do that again.
Hope this gives you some idea what to expect. Keep in touch.
Mark
Dear Boltec23,
I wish your husband and your family all the best with these life changing news. My 20 year old son was diagnosed with PSC last year after a couple of years of elevated liver values. He is a college student in Boston and I can very highly recommend Dr. Raymond Chung at MGH. He specializes in liver diseases and PSC. It is not easy to get an appointment but it is well worth the wait! He is a highly regarded specialist and always available for my son to answer any concern.
Hang in there! There is a lot of research for this disease and one must keep optimistic and hopeful. It is my first time writing in this forum and I take the oppportunity to thank the administrators for creating it. It is a source of support and very valuable information. Thank you for this support, it is very much appreciated.
Yasmina
Thank you and I am so sorry your 20 year old son has PSC! I have 17 year old twins with chronic pancreatitis and I know how it feels to have a child with an illness…it is hard and heartbreaking. Thank you for the doctor recommendation. We have made an appointment at MGH with Dr. Pratt through a friend recommendation. She has PBC. This site is great and I am so glad it is here!
As somebody who has been really blessed in the course of my PSC, having only some itchiness and being diagnosed 19 years ago, my sincere advice is that if your husband is not showing symptoms to not trouble the kids much about it. They need to know and read about it, but your best case scenario is that they basically don’t think much about it on a daily basis until he has some symptoms. Even then, the road can be long. I often wish my doctor had never told me. I play tennis twice per week and have a fairly normal life. I can do a lot but need frequent rests.
As for finances, I’d see if you can emigrate to Canada and not mention the liver tests in your application. What’s a high liver enzyme count between friends anyways? The important thing is to have all your ducts in a row. Better to have trouble with your liver than with your lover.
LOL! Too funny! At first we were mad at the specialist we saw over 10 years ago who didn’t do enough testing at the time to diagnose him. Then after reading comments on this board, I am glad we didn’t know. That was a blessing. We are thankful he doesn’t have symptoms although I think he gets tired more now. He is a very active person normally.
I couldn’t agree more. No need to worry kids. To be honest years of my life would have been less stressful if I never told another soul.
Boltech, welcome and I’m sorry to hear that you and your husband are going through this. You have to decide what you and your husband think is best for your children, but I can tell you that at their age they are going to figure it out and worry anyways. My children are 15 and 19. I was diagnosed last October and with all the hospital stays, gallbladder surgery, tests, and constant Doctor appointments, my kids figured it out. When you’re really sick, it is hard to hide it. I’m managing now and my PSC is still considered mild and stage 1, but my kids know. They know mom doesn’t feel good sometimes or that I am resting more than I used to. I seem to get worn out a lot easier. At first, we didn’t want to tell my daughter (15), because she’s a worrier. One day, she just said, “What’s going on?”, and I told her I have “liver problems” and she said,“I knew it!”. She was taking healthcare in high school and they were studying the liver and she figured it out. We haven’t went into the bad stuff, though they know one day I’ll need a new liver. They still worry whenever I feel bad or have pain or I’m in bed more than usual. They help more, so that’s a blessing. I would recommend waiting for the school year to end before you tell them any big stuff so they aren’t stressed on top of finals and such, but then I think a basic discussion of what’s going on will help.