This is my first response … Not sure if I am even doing this correctly … If I can give you some info… My husband and I were changing our life insurance last year when going through the medical exam… Well I pasted and he was denied… For a man who is extremely healthy we were concerned. We received the complete blood work and there were several items that were high … Went to GP sent us for Ultra sound then referred us to gastronenterologist went for a CT… Funny thing is that he had no symptoms for about 1 month and then things changed …fatigue,unable to eat,cold all the time, tiered,and wait loss for a man that only weighs 168 to lose 20 lbs o
In 3 months is Huge .doctor did a ERCP in May to put In a stint within 24 hours my husband felt 100 times better…Dr said it was complicated… Said that the upper part of liver where the Tree is … (Again I think I sound stupid) said that most of the ducts had already collapsed the common bike duct is where they put the stint. His has 2 parts the clogging of the interior duct and the autoimmune that wraps around the out side and constricts the duct. We get confused about the blood work … Which I do not have with me…but one is around 700 and the ALT/AST are approx 175/153 his Anemia has greatly improved since last year since taking his iron pills. It has only been about 8 months and the doctors is saying we will have to see my husband in 4 weeks to talk about option. We have no idea what stage he is in. It is hard to talk with him as he tries to focus on other things…he does not want to hear any more bad news… He is really scared to do a colonoscopy. I just have so many questions. This week when he finally talked he said he has already given up. Just need some direction. How do they find out what stage he is in? Do they have to do a liver biopsy? In Washington how sick to you have to get before they put you on the transplant list? He is taking no medication except for kaopectate for the diarrhea, is that ok? Has itches and bumps/welts but is Billirubin does not seem that high. I think he might have shingles?
Sorry for rambling on
Thanks
Super, some docs are wary of being precise on stages. Mine has only said that I have moderate/severe damage, and dodge the question as to what stage I was in at the time.
PSC can cause itching, so not sure about shingles.
Your question about how sick to be on a transplant list-that is determined by the transplant facility. The MELD score is determined by several factors in the patient's bloodwork. The score runs from 6, which is excellent, to 40 (I think) which is pretty close to kicking the bucket.
Some site will do a transplant with a score in the mid-20's , others will do it at a higher score.
I hate that he said he has already given up. This disease can take a lot out of a patient, so his comment is scary. Him having a good mental state will be of immense help to you both.
Would he be open to this site?
Jeff
He did finally open up last night saying he is completely overwhelmed. And scared I told him he can’t give up there is so much to look forward to. He also talked to his best friend last night which was awsome he had not spoke with him in weeks. He is going to call his GI today about his rash. Yeah. I will try to get him on this site might be good for him. Just happy he is wanting to talk instead of keeping everything inside. Thank you
JeffDC said:
Super, some docs are wary of being precise on stages. Mine has only said that I have moderate/severe damage, and dodge the question as to what stage I was in at the time.
PSC can cause itching, so not sure about shingles.
Your question about how sick to be on a transplant list-that is determined by the transplant facility. The MELD score is determined by several factors in the patient’s bloodwork. The score runs from 6, which is excellent, to 40 (I think) which is pretty close to kicking the bucket.
Some site will do a transplant with a score in the mid-20’s , others will do it at a higher score.
I hate that he said he has already given up. This disease can take a lot out of a patient, so his comment is scary. Him having a good mental state will be of immense help to you both.
Would he be open to this site?
Jeff
Super,
I’m in Washingtin State. My son is 18.
He has PSC. I know it’s hard but don’t
Get discouraged. He is being treated via Children’s
Hospital in Seattle & Confluence Health
in Wenatchee. Have they started him on Ursodiol
Or Prednisone yet? Tell your husband not to
fret about the colonoscopy. My so. Had three
Within 6 months & he eventually had to
Have his colon removed. I’m totally willing
to e-mail you privately or have your husband
actually meet & visit my son. They
Haven’t discussed what stage he is in either.
His turning 18 has cut me out if the medical until
I fought to be reinstated as a caregiver. I would
ask your husband to sign a caregiver form
Authorizing you to speak with Dr.'s on his behalf.
Journaling diet, sleep patterns, Eric. Has been extremely
beneficial for me when communicating with his Dr.'s.
The most IMPORTANT thing is to not give into
doubt or fear. Learn to listen to your instincts.
ask as many questions as possible & don’t ever be afraid
to ask for a second opinion.
you guys are not alone.
This is an amazing support group.
I have learned a lot here.
All my Best,
AJ
Super --
I am also in Wa state, Seattle, and I'd also be happy to connect with your husband if he's interested.
I've been dealing with UC since childhood, and was diagnosed with PSC/Autoimmune Hep in 2006. When my wife and I first started really grappling with the disease in 2010 when I had a major episode, it was tough. It is scary. My wife dealt with it by reading whatever she could get her hands on about the disease and prognosis. I dealt with it more gradually. It wasn't until a few years later that I was ready to look at all these questions.
It sounds like your husband might be dealing with some depression, which I also have been dealing with. It is a tough change, going from being pretty active, working, home projects, etc. to feeling fatigued a lot, mentally confused a lot, unsafe to drive sometimes. And then there is the thinking about what the future looks like: either I go on this way for years, feeling crummy a lot of the time, or I deteriorate and feel a lot worse for a year or so, followed by transplant or worse. Given all that, depression is pretty normal. So, I'd agree that keeping a good attitude is important, but your husband needs to deal with all this the best way he can. It was a godsend that my wife has been supportive and loving through it all.
As for the UC: you've probably been told, the combination of PSC plus UC means a higher risk of colon cancer. The only way they can prevent that from getting out of control is yearly colonoscopies. They're unpleasant, but if he's had UC for only a short time, the risk of bad news is significantly lower than when he's had it for longer. I also recently had my colon out, because the last scope turned up low-grade dysplasia -- essentially pre-cancerous changes. My surgeon, who is very skilled, said, "people do surprisingly well without their colons", and it is true. And that's the worst case, IF he's monitored regularly so cancer doesn't have time to grow.
Finally, please don't worry about sounding stupid here. We felt really stupid as we were first trying to understand this disease. It is complicated, there are many new ideas and terms and biology and new medicines and options and outcomes to learn, and there is a lot about the disease that even the best doctors don't know. When we were starting out, my wife and I would both write down a list of questions for the Dr before every appointment, and we'd keep asking until we got our concerns answered and understood the answers. We're lucky that my Gastro Dr is patient and willing to answer lots of questions.
-- Bob
Thank you Bob!
Talk to your doctor about medications to help with the itching and diarrhea. Colonoscopies are not a big deal. You actually feel real good after the procedure. The liquid prep you take the night before is the hardest part. It is a lot to drink and it flushes you out. The doctors look at his MELD (Model for End-stage Liver Disease) scores from his blood work to determine when to put him on the transplant list. Each transplant center has its own regional supply of organs, so the qualifying MELD number depends a lot on the availability of organs. My hospital was transplanting at 23. In Chicago, they were not transplanting until the mid 30's. I was very, very sick and only had a score of 16. I finally received a live donor transplant which bypasses the MELD qualification system. Ask questions. Read. PSCPartners.com is a good source of information. As beginners, you are going to have a steep learning curve to understand PSC. Don't give up. Choose life.
Dear Super Chevy,
I am 68 yrs old and was in a state similar to your husband's 1 &1/2 years ago. My MELD score was off the chart (>40). I had a liver transplant and had a rocky post op course including kidney failure. It did take me 6-8 months to start feeling near normal again. Most patients do get better in a few weeks. My new liver is working well. I've gained 30 lb. back of the 65 that I lost (now 148). I'm glad I had the surgery, otherwise I'd be on the other side of the turf.
The colonoscopy is very important and the only problem with it is the prep (lots of time in the restroom). He needs a hepatologist who works closely with a transplant surgeon. I've had 4 liver biopsies and they involve a minimal amount of pain. If he does have shingles he needs medication ASAP.
Celebrate the good days and forget the bad ones!
EAD3
Dear Super Chevy,
So sorry to hear of your husband's diagnosis but you have found a very good support group that will be there for you with any questions you may have. For the itching, I have been on a drug called Rifampin, 300 MG one capsule two times a day. I've been taking it for 4 years with no problems. It really does take care of almost all the itching. I agree with EAD3, you need a good hepatologist. If you have a large university hospital nearby they will certainly have a transplant section and there's where you will find the hepatologist doctor. There are a lot of good GI's out there, but the hepatologist specializes in liver diseases and has direct contact with the transplant people on a daily basis. The best to you both.
Mark
Mark - Are you on Rifampin ongoing or will it work if stopped periodically and restarted when itching is bad? I understand it can have adverse effects on the liver..
Alix,
I have been on Rifampin ongoing since I was diagnosed 4 years ago. I tried going to one capsule a day at times and even skipped a day or two from time to time, but the itching would always come back with a vengeance. I decided then to just stay on the twice a day regimen. I have had two hepatologists since diagnosed at Duke and both have given me clearance to take the drug continuously.
Just as a side note, and I know this may sound really way left field, but while taking Rifampin, the last two or three years I have not had one cold. I can't explain it, but that part has really been a blessing while dealing with the seriousness of PSC.
Mark
Thx Mark. Will be discussing at upcoming appt. Itch so far is on and off (mostly off thankfully) but when it's on... can last 4-5 wks. Tried Naltrexone which provided no relief, though I baled out after a few days due to side effect of extreme anxiety. No thx..
Alix,
Let me know how things turn out. I know everyone is different in how they respond to meds, but it has truly been my sanity at times. I had tried just about every cream, etc. to find relief and then when he put me on Rifampin the itching went away. The only side effect which is kind of a bother is your urine turns orange. Just think of it as your new PSC non-itch color :-)
Mark
Mark - I don't care if my urine turns neon purple with green pin-stripes -- whatever it takes to reduce/eliminate the itching which at times has been distressing, debilitating and generally #$)*#*%*#ing unbearable. Usually starts after a cholangitis flareup and sometimes manageable with sedative effect of Gravol (Dramamine) at night, then daytime settles reasonably for a few hours of semi-peace, but I've had a few wicked sessions worse than any pain I've experienced. I'd like to have a Rx for Rifampin to keep on hand to start next time this kicks up badly. I can't see that creams would do any more than soothe a little.. if that.
Thank you everyone for all of your support it is wonderful. I can give you an update. found out that he has Psoriasis which is also part of the autoimmune category. Doctor put him on Prednisone which he has been on since Thursday evening. Made a comment last night that it is the first time he has not itched in a long time. Spoke with the doctor directly and got very direct answers back. His outlook on life has done a 360 and have my same loveable husband back. I think until reassured your not dying take a lot of stress off of him. Question though does anyone know why the liver enzymes would change without putting in the stint. The Liver enzymes have been gradually raising since Sept(last blood test) We started getting the blood test every two weeks because we thought we were getting close to putting in a new stint. Then out of the blue between Feb 27 and Mar 3rd they dropped
Alkaline Phosphatase drop by 21, ALT drop by 54 and AST drop by 115 points
we have not changed anything. anyone have any ideas.
Again thanks for all the support
Hi, Alix,
Dark orange urine can also happen if your PSC gets worse (from high bilirubin). Please make sure that is not so in your case.
Stay strong!
EAD3
fcmmark said:
Alix,
Let me know how things turn out. I know everyone is different in how they respond to meds, but it has truly been my sanity at times. I had tried just about every cream, etc. to find relief and then when he put me on Rifampin the itching went away. The only side effect which is kind of a bother is your urine turns orange. Just think of it as your new PSC non-itch color :-)
Mark
Quite true.. and I'm no stranger to dark orangey urine - by that time am usually in pretty bad shape or well on the way! Meanwhile, been enjoying a blissful stretch of no itch (occ'l niggle maybe). Pleeeease let this continue..
Super, that is good news about your hubby. Following my previous surgeries, my wife said to me, "I want you back."
I told her that I wanted that too.
Jeff
Super Chevy said:
Thank you everyone for all of your support it is wonderful. I can give you an update. found out that he has Psoriasis which is also part of the autoimmune category. Doctor put him on Prednisone which he has been on since Thursday evening. Made a comment last night that it is the first time he has not itched in a long time. Spoke with the doctor directly and got very direct answers back. His outlook on life has done a 360 and have my same loveable husband back. I think until reassured your not dying take a lot of stress off of him. Question though does anyone know why the liver enzymes would change without putting in the stint. The Liver enzymes have been gradually raising since Sept(last blood test) We started getting the blood test every two weeks because we thought we were getting close to putting in a new stint. Then out of the blue between Feb 27 and Mar 3rd they dropped
Alkaline Phosphatase drop by 21, ALT drop by 54 and AST drop by 115 points
we have not changed anything. anyone have any ideas.
Again thanks for all the support
Hi Super --
It is my understanding that ups and downs are just the nature of the disease. I think it has to do with infections coming and going, sludge backing up behind strictures and clearing, and so on. Also, the two times I've had major flareups, one of the big guns they used to clear it was prednisone. It brings down infection. So if there's a correlation between starting that and the enzyme numbers going down, that's a good bet.
Bob
that was the funny thing is that the numbers were down before they put him on the prednisone. They put him on that just to get rid of the rash. The only thing that was different is that he gets shots for his allergies and it was just at the beginning when the serum is extremely potent.
Bob said:
Hi Super --
It is my understanding that ups and downs are just the nature of the disease. I think it has to do with infections coming and going, sludge backing up behind strictures and clearing, and so on. Also, the two times I've had major flareups, one of the big guns they used to clear it was prednisone. It brings down infection. So if there's a correlation between starting that and the enzyme numbers going down, that's a good bet.