Hi everyone! My name is Heather. I’m here hoping to gain some valuable knowledge from these forums. I’d also like to make some friendships and provide support where I can. I’m looking forward to becoming a “regular” on here.
My husband, Steve, (33 years old) was diagnosed with PSC about 2 and a half years ago.
He has a raging case of Ulcerative Colitis as well. That was diagnosed about…5 years ago? I say raging, because it hasn’t responded well to ANY medications on the market. He’s tried every option available, and he’s on his last one now. A combination of Entyvio infusions and Imuran.
Regarding the PSC…he was diagnosed shortly after we decided to make a huge life change. We moved from small town Illinois to Mesa, Arizona. We were really happy and excited with our move/new life and then BOOM- PSC diagnosis. It was found after his liver enzymes were elevated on a routine blood test.
I’m gonna be honest, we haven’t really focused on it much over the past few years because he didn’t have any symptoms from it…and it was just easier to live/enjoy life NOT thinking about it…at all.
But lately it’s been harder to ignore. Over the past year- Steve has definitely noticed muscle loss, slight cognitive issues, loss of strength, frequent migraines with stroke like symptoms, slight fatigue, and according to his latest blood tests- his liver enzymes numbers have doubled since his last test.
He’s also been GAINING weight…which is weird. Because ever since he was diagnosed with UC- he’s always kept weight off pretty easy. But even when he tries to eat healthy lately, he gains a pound here…a pound there…even while losing muscle. I think that’s when we noticed for sure, that something was changing.
Sigh. I deal with a lot of anxiety. Healthy anxiety has plagued my mind since I was younger. I’ve recently let go of some of it- but I feel it rushing back with this.
It was easy to live/enjoy the past few years because we put this on the back burner and tried not to focus on it.
I never really pushed my husband to alter his lifestyle at all. He’s EXTREMELY stubborn when it comes to eating a strict diet. Any time I try to encourage something new, or talking about a diet change, or cutting out alcohol…I can tell THATS when the severity of this disease hits him and he gets quiet. And I don’t blame him. So I feel bad and try not to push too much change on him. He’s all about trying to live as normal of a life as possible without focusing on his ailments. He doesn’t want to be defined by his diseases and he doesn’t like people feeling bad for him. While I admire his attitude- I feel that he needs to learn that there can be a balance of both.
Anyways- we’re at a crossroads now…because I feel it would be better if we were living by family, if this happens to get worse. So we’ve been going BACK AND FORTH about whether to stay in AZ or move back to small town IL.
Obviously my husband isn’t happy with altering our entire life for “what ifs” but I keep assuring him it’s just good to have a solid foundation of help/stability to better handle what may come.
I don’t know where I’m going with all of this…I HATE reading things online. I used to do it all the time with my own healthy anxiety…I was a constant worry googler…and I’m TRYING to avoid it as best as I can with this.
So I guess I’m here to try and gain some insight from those who know about his the best. You guys. Doctors have been very quick and surface level with my husband. I have found MUCH more information from all of you on this site- then I have from any dr at MAYO so far…
I’ll make a different post in the future with some questions I have…but for now I’ll leave my background story and a hello to you all. I’m going to try and stick with this site primarily when it comes to research. I’d rather not dive into the scary parts of the internet for my own mental sanity.
Have a great day everyone.
Hi everyone! My name is Heather. I’m here hoping to gain some valuable knowledge from these forums. I’d also like to make some friendships and provide support where I can. I’m looking forward to becoming a “regular” on here.
Welcome to this PSC group. We are here for you and will do our best to provide you with as much information as possible to answer any questions you may have. Is your husband under the care of a transplant hepatologist yet? If not, he needs to be connected with one. He needs to be reminded that PSC is not a curable disease at this point and that the only cure is liver transplant. If he continues to drink alcohol he will never qualify to receive one. He needs to cease and desist from using it in any form. It also causes destruction of the liver to increase even more rapidly. PSC does lead to cirrhosis and alcohol will only compound that by many times over.
We’ve got a good group of folks here and many that have also suffered with UC that will surely chime in with some additional advice. I look forward to hearing more from you and please don’t hesitate to reach out to us. I wish you and your family the very best.
PSC 2011 / Liver Transplant 2015
I appreciate your reply. I would like to state that my husband doesn’t drink more than the average person. A few drinks here or there. Definitely not more than the norm. I suppose it’s hard for him to give up those few occasional drinks because that was one of our favorite things to do. Sit on a sun drenched patio, with a cold beer, enjoying the palm tree/sunshine view. Lol. So it’s hard for him to give up those moments.
But I do understand where you’re coming from with your advice, and he hasn’t had alcohol for some time now.
I am however, wanting to make some drastic changes to his diet- as I’m sure we can improve some of his day to day symptoms by eating better. Or even trying some helpful supplements.
A question to your comment, should he be speaking with a TRANSPLANT hepatologist only? Not a REGULAR hepatologist? Sorry if this is a weird question, I just want to understand what you’re saying.
We’ll most likely be moving back to the Chicago land area, so I’m hoping I can find a good team of drs there. We’ve been pretty disappointed, surprisingly, with Phoenix Mayo’s care (or lack thereof) in terms of both the UC/PSC. Doctors there have been very short, quick, non informative, and hard to communicate with…even on the patient portals. I’m hoping we’ll have better luck somewhere else.
I was considering making an appt with Dr Bowlus in Sacramento, while we’re still somewhat close to there, and speak with him about Vancomycin. I’m not sure of any other drs close to me that would try that treatment. Mayo has no interest in trying it.
Besides my first question Mark, can you let me know if there’s ANY hope of regaining SOME muscle at this point? If he follows a high protein diet, can we expect to see at least SOME results from that? Or is his angry liver determined to take it away from here on out?
Thanks for your reply by the way, I appreciate it.
Let me clarify what I meant about a transplant hepatologist. It’s good he’s seeing a hepatologist. My mentioning of transplant hepatologist was to be sure that the hepatologist he is seeing is directly associated with a major medical center that does actual liver transplants. This association will allow his doctor to get him referred much quicker for possible listing when he gets to the point of needing a transplant. Sorry for any confusion on that.
Regarding his diet, if he’s already exhibiting signs of muscle wasting a high protein diet is a must. Not having seen his labs, from what you are describing he probably at the point that transplant evaluation may be possible sooner than later. Have you run his MELD score lately? Go to this link and enter in the values from his most recent lab work and let me know what you find. https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
He does need to start a regular exercise regimen. Even if it’s just walking on a treadmill or around the house for 30 minutes a day. He needs to work on building up his core strength. He needs to be as strong as possible to be able to make it through a liver transplant with as few problems as possible. Depending on what you find out with his MELD score, he may or may not be a good canidate for Vanco. That will be a question for his hepatologist. You certainly need a doctor that is dedicated to seeing your husband survive this disease. You need someone you can contact by email, phone, etc as needed. Make sure you are going to all his appointments and advocating for him in every respect. Make sure he has signed a health care power of attorney as well as durable power of attorney so you can act in his behalf both health wise and financially. The further along he progresses you need to be sure you as the wife understand everything about your finances, how to pay bills, make sure you are on all bank accounts, etc. I know these things are difficult to think about but you need to be prepared in every respect for the good and the bad should it come to that. I came to the brink of death with I believe only a short time, but I made it and I survived and so can your husband. It’s got to be a family team effort. He will need all the love, compassion, strength that you all can give him.
Finally, you mentioned that he’s been gaining weight. The doctor needs to check to make sure he hasn’t developed ascites. If he has, they will need to drain off the fluid and may have to do so until transplant. From all you describe I believe these are important decisions you are making now, and now is the key, not later. I hope this helps.
Thanks for all your info Mark. It will prove invaluable when the time comes.
I checked his MELD score. Weird thing is- his last blood test showed bilirubin at .3. On that site- it doesn’t let you put in something lower than .5. I put .5 just to see the score and it came up MELD score 6.
I never put his latest blood test numbers because I was too lazy to get up. I FINALLY got up…here they are:
Alk Phos: 567 (usual range over the past few years has been 180-450)
AST: 163 (usual range over the past few years has been 38)
ALT: 185 (usual range over the past few years has been 35-50)
Because of these suddenly high numbers, they wouldn’t give him his Entyvio infusion. And they’ve stopped all medication to see if the numbers will come down.
So he currently isn’t on anything for his UC at the moment.
We noticed the weight gain happen over the past couple months. Ironically enough, it seemed to have started shortly after they doubled the UC meds he was on. They doubled the amount of infusions to twice a month, doubled his daily Imuran, and also put him on Prednisone for a month. I felt like this contributed to the liver number spike…but they deny it was the cause. Seems like a huge coincidence to me.
Is it normal for people to have spikes in these numbers over the years? For them to go up so quickly and then down?
I know this is an introduction section, so if you’d rather I post this in a different section, please let me know. Thanks.
Oh I should also add that his MRIs have always come back with no change until his latest one at the end of last year. Showed “slight changes” in scarring.
And his last few blood tests have shown slightly elevated WBC. Is this something that should be talked about? No one has spoken about it with us as if it was a concern…
So glad to hear his MELD is only 6. That’s very good news. Although MELD is not the only indicator of PSC progression, and in fact some PSC patients keep a low MELD and yet are very sick, but it is a good indicator in my book. It’s not unusual for the Alk Phos to be high, but the upper 500’s does seem quite high. Mine would stay in the 250-350 range generally. I will say though that the AST and ALT are really higher than I ever had. I would certainly address all this with his hepatologist. I can understand why they waited on the infusion. They don’t want to make matters worse and put his organs in further distress. Hopefully things will settle down soon enough. I hope they are following up with further labs very soon.
Over all from all you have described, I’m more encouraged. I still like your idea of pursuing another hepatologist if not for anything more than a second opinion on all he’s currently going through.
Mark, I want to follow this discussion with, I’m glad you were able to get your transplant and I hope you’re enjoying every day of life. I wish I could give you a hug. It’s truly a situation of…no one understands, unless they’ve been through it. Thank you for your insight and your advice. I look forward to it in the future. You’ve been very informative. Have a nice night.
Hi Heather. I’m not one of the medically smart folks on here. I can only speak to may own experience. I can tell you first that I can feel where you and your husband are both coming from on lifestyle and dietary changes, and that I am very sorry that you have to deal with it at all!
I continued to drink a bit socially for a few years after diagnoses because it was something that I really enjoyed, and my doctor didn’t have a problem with it. Not daily, or even weekly, but occasionally. I decided to stop that several years ago just because I figured that at the least, it wasn’t helping anything, and I didn’t really need to do it. I also began to notice that I felt a little different, so that was that. As for diet, I very recently ate my first spinach salad in my whole life. LOL It wasn’t too bad. 50 years old and I eat like a four-year old…
I was diagnosed with UC over 20 years ago, and was very well controlled by sulfasalazine, and for the last 8 years by Apriso / mesalamine. I cut out lactose years ago and that helped a great deal too. A good friend of mine has had a few tests done to determine foods that she should eat and foods that she should avoid. It is very comprehensive and is similar to an allergy test. It was fairly expensive, but she found it very enlightening. Many things that she thought were really good for her turned out to be “not so much”! She has a great point about finding out what is best for your body to run at it’s optimal level. Might be something that your husband would respond too. I’ll bet that he wouldn’t put low octane ethanol gas in a fast car.
I have had PSC for 12 years or so , that I know of, and have had ALK Phos numbers over 1K for years. I was in the high teens on the MELD for years too. My only point in saying that is that nobody knows how long he has. The nutritionist at the transplant center has had me trying hard to get 100+ grams of protein a day for a few years. I have certainly lost weight and some muscle mass, but am still pretty toned. I think that protein intake has helped. I use liquid supplements in addition to my food. I also exercise a fair amount.
I would encourage you to love each other and your life together. Don’t put off living your life waiting for the axe to fall. Take care of each other and do the best that you can.
If I can help with anything, don’t hesitate to reach out. I may not know much about medicine, but I know a bit about living life, and I can listen and sympathize. Peace, Doug
Would you mind sharing the name of that test your friend tried to find out which food she has allergy to?
Thanks for your response. I appreciate your kindness. Honestly, talking on this forum today has helped my mood greatly and has really helped me start more of a dialog with my husband on steps to take next. It’s definitely helped give me more confidence moving forward knowing I have somewhere to turn for advice or those “little questions” along the way. Like I’ve stated before, our doctors up until this point have been extremely unhelpful and uninformative about ANYTHING. We felt very defeated and hopeless.
I know I can’t find a magic cure for my husband and his angry organs…but my goal is to help him start to feel better in our daily life at least.
In response to what you’ve shared…I too, would like to know the name of the test your friend took to determine food allergies…and what kind of Dr does that? This could prove SOMEWHAT helpful in shaping a better diet for his UC symptoms.
Also, we’re going to focus on a higher protein diet and I’m interested to know if you supplement with any protein bars/shakes? If so…which ones? Is that a complete no no for people with PSC? They originally thought his levels were high because he had had some protein bars that week. Saying it could mess with your numbers. But he’s had them in the past with no issue.
Anyways. I’m off to bed. I look forward to your response.
I’m actually excited to read through these forums a little more. I feel so much more informed which I think will help me be a much better advocate for my husband’s health. I regret not starting sooner.
Well wishes to all.
Tala…I will get the exact name of the test today. I don’t know exactly, and don’t want to tell you something incorrect.
Hi hezzera. I will find out the exact name of the food test and who administers it. Hopefully, today.
I’m sorry that your doctors are so unhelpful! That must be VERY hard.
Yes, I do supplement with shakes. For me, this was on the recommendation of the dietitian at the transplant center because of my absorption issues caused by PSC. She prescribed Boost VHC for me. 25 grams of protein, and 500 calories. They are very sweet and got to be a little much at times. I found Premier Protein that has 30 grams of protein and 1 gram of sugar, and use those too. Walmart sells a knock-off of the Premier Protein that is less expensive. I don’t know about others, but it has helped me.
I’ll comment when I have an answer on the food test.
Thanks for the info. He gets protein bars from WalMart. I don’t remember the brand name. But I’ll make sure he starts having those daily along with some extra protein in his meals. That’s honestly my biggest concern for him right now. He’s lost a lot of muscle over the past few years so my focus is getting SOME of it back…
My husband stopped his hepatologist before he tried running quickly out of the room, and asked about muscle loss- and his dr responded with, “Oh yeah…lemme check your hands” (to look for atrophy I’m assuming)…did a quick check and said, “Oh, you’re fine” and ran out…
Just baffles me how they couldn’t care less. CLEARY we can tell he’s lost a lot…I give him a hug and all I feel is bones…sigh.
hezzera, They targeted 100 grams of protein, minimum per day for me. I really don’t think that I have lost much muscle as a result. I think that it has been more fat lost, as my weight hasn’t dropped much over the last couple of years, but I have lost “bulk”.
The test for food is called the Alcat food sensitivity test, and costs around $850. My friend swears by it. https://cellsciencesystems.com/patients/alcat-test/
Hi Tala. The test is the Alcat food sensitivity test. It costs around $850. https://cellsciencesystems.com/patients/alcat-test/
Hey Heather. Like your husband, I also have PSC+UC, live in Gilbert, AZ and go to Mayo for my hepatology and GI appointments. Its shocking to me to hear you’ve not had a good experience there since I’ve only had good experiences with my doctors. I’ve been seeing Dr. Carey and shes been great. Granted, I’ve only seen her twice (diagnosed two months ago). Everyone I’ve spoken to has been very helpful, very compassionate and easy to talk to. Wonder if you can request a new doc at Mayo…
Regarding alcohol, my doctor said to stop, so I’ve really stopped. (My brother is getting married in a few months and I’ll have one drink with him, but no more). As Mark has said, alcohol is a no go after diagnosis. When we need a transplant, the docs will know if you’re a drinker or not and recommend (or not) accordingly. Why risk it?
My wife and I have been debating on moving to CO where all my family is from because among other reasons, I know I’ll need a good support network when i start to get sick and need a transplant. So moving back to Chicago to be close to family isn’t such a bad idea
I’ve not posted much on here, but from what I’ve read, this site is an absolute plethora of good information, good support and good people. Glad you found us!
Thank you SalmonRiver001. Very nice of you to find that for me
Hi Hezzera. I’m glad you joined this group. I totally understand you. My partner has also PSC and that is why I am here too. He was diagnosed in 2016.
My medical knowledge in this regard is limited but based on experience and reading extensively the only conclusion we came up with in terms of keeping the enzyme levels low is by controlling his diet. I know this topic maybe still sensitive for your husband given the reasons you provided. But something to ponder about in the future. In my partner’s case managing his diet helped a lot. Recently he goes for blood test every month after we add/ remove something to/ from his diet to figure out the food he is allergic to. Overall the is doing much better than when he was first diagnosed.
I hope we hear more from you and that your husband feels better.
I’m glad you found the group but I’m sorry you had to.
My partner has UC & received a transplant at 32 (2015) due to PSC.
A lot of worries sound like mine. My heart aches for you. I hope that I am able to give you the same support I received from this group.
Regarding the muscle, our doctor prescribed topical testosterone. I think it helped. Muscle loss was huge mental hurdle for my husband. Unbeknownst to him I was also adding Ensure/Boost mix to his shakes.
As far a diet, I was feeding a Portuguese man. He loved meat and potatoes, bread and wine. (And now he’s Vegan!! by choice!!) I slowly started changing the way I cooked. Little by little I added spices that worked in favor of his liver and eliminated salt, then told him we had been salt-free for months. I would “forget” to buy his favorite junk foods or claim they didn’t have a good cut of meat at the grocery store. I worked in foods that are good for the liver putting them next to his favorite entrees and then slowly changed the portion sizes. I stopped keeping alcohol on hand for weekends or when guests came over and when we were out I’d ask if he would share a beer with me because I didn’t want a whole one but then I’d drink 75% of it just so that he wouldn’t order his usual whiskey sour or a glass of wine. I slowly turned myself off alcohol in front of him and he followed suit unknowingly. It was hard to ask him give it up because of his PSC; Not because he drank heavily but because it was just another sign he was different than other men. I have a stubborn (kindhearted) man. I get it how hard it can be to ask them to give up their ways especially when it comes to how they eat.
I encourage you to love your man hard but try not to tip toe around him. Involve yourself in every appointment, discussion, decision, etc. but try not to emasculate him. Easy to say to you now, but man was it hard for me then.
At times I was terrified of our future but shoved it deep down while clinging to my faith, to him, to this group; clinging to hope that we would live a better day - and here we are now, living a beautiful full life. Please look to your future with optimism!
Sending you and your husband the best wishes for a life well lived together, big hugs,