So, my partner was diagnosed about 8 yrs ago and we’ve had many years of education with PSC. With many ERCP’s,100’s of blood tests, cholangitis attacks, suspicions of HE, severe cramping, itching, raynauds, hives , jaundice and at least 3 hospitalizations, frequent nausea, trots and gee, so much more… Certain Patterns have been noticed. But, something is off now. Normally jaundice, severe fatigue, brain fog, tremors, cramping, RUQ pain, difficulty with appetite, rising bilirubin, dropping platelets and wbc all coincide with an MRCP/ MRI showing a significant constriction in the bile ducts. Subsequently, An ERCP is ordered and executed and, presto, his symptoms and blood work improves. Well, this time there does not appear to be any major constrictions in spite of the symptoms and blood work. I’m wondering if anyone else has experienced some similar change and if ultimately it indicated a new phase. I’m feeling funny about things. He’s been somewhat stable since his last ERCP about 18 mo. ago. This seems different.
Hi Dolphin5, good to hear from you again.
I am not sure if a new phase has been indicated. That does seem to be the pattern. With psc, as the bile ducts stricture and disappear, the pattern gets repeated. I think I have a bile duct blocked now. A round of cipro cleared the jaundice as long as I was on it, but it did not do anything to fix what caused the jaundice-a blocked bile duct. Now I am off cipro, my jaundice is returning and I think another ercp is on my horizon.
Jeff
Hello, Dolphin5.
A lot of what you’ve written reminds me of me and my partner. We took a similar ride with ton of weight in symptoms then some meds/procedures were thrown in the mix and we were back on track… until another curve on the coaster and we went through the ride again. This went on for years.
I remember there was a period where we were not seeing strictures but his liver numbers stayed high. I noticed he was off in behavior (more so than usual) and sure enough Hepatic encephalopathy was to blame. Soon after that he was in need of banding varices. He was given a liver transplant something like a year later. (We celebrated 2 years in February) Not sure if that helps with your question…
Your partner is lucky to have you!! I felt really alone during the hard times dealing with PSC. Although he was kind and loving, his condition really effected him on every level. This site was a refugee for me. I hope that you can find support here in this community too. If there is anything I can do to help - please let me know.
Stay well.
Thanks, Gloria. Your reply came at a great time as I am fairly certain that the doc is probably going to reccomend my husband to a transplant team soon, (we’ll find out in the next couple of weeks with the next labs what direction his numbers are going) . I have no doubt it is up and there are no plans for any more ERCP’s. I’m certain we are headed that way. If you or others have any encouraging words or tips for what lies ahead, I’m all ears.
Dolphin5,
I get it. I totally get it. I moved about an hour away from my family to be
with my fiance’s family. That created a space between my family and I,
unintentionally, that’s just how it goes though. Everyone is doing their
own thing. His family is small and they worry - a lot. So I kept to myself
after appointments not wanting to worry them. He is the only child. Only
boy of the 3 cousins that live in CA. My friends are young, they don’t get
it. (I’m 32 - I started dating him 10 years ago) So, I kept to myself with
him…and his daughter who is now a tween. (Lord help me) I was stressed.
I came to Ben’s Friend’s looking for some sort of outlet and soundboard.
You can look back at some of the posts I wrote years ago asking for help.
We’ve chatted more than a handful of times. (I think at one point the site
refreshed or revamped or something and I don’t know if posts were lost.
Anyhow…) This site should be a helpful place for you. Get involved. I see
you do but talk to strangers outside of the post board. Make friends here.
We all know what you are going through. (Girl! At one point I was asking
about testosterone levels being effected by PSC because my relationship was
getting…stale.) Point being, YOU HAVE US.
I almost didn’t even see transplant coming so fast. We wanted a TX quickly
and so badly but we waited on the list for a while. Being added to the list
is a process in itself too. Anyhow, there was a period where he was in and
out of the hospital every other month for something. We actually were
getting frustrated by the lack of progress so we started looking into
transplanting in another state. We had chosen New Orleans and started the
paperwork actually. (Have you looked into what your partner’s insurance
will cover?)
One day he was feeling really, really, weak and wouldn’t eat that day. His
cousin came by to visit (which she has never done but for whatever odd
reason she came by). She saw how sick he was an insisted that I take him to
the hospital. I guess I got so used to seeing him so sick that I thought it
was just a “bad” day. I took him in and he was there less than a week
before he was given a liver. (Thank God) Everything happened so fast.
I was like you, trying to figure out how to care for him alone and with a 8
year old that I had to share (with her horrid mother no less). But
surprisingly the hospital makes it really easy to not F up all the hard
work they’ve done to get your partner through the surgery. I mean, think
about it, they invest so much time (and money) into a surgery (that
reflects their hospital no less). They send you home with everything you
need. You’re assigned a social worker that can help you with everything.
(paperwork for disability, ordering meds, etc.) You’ll really not have to
do much in the way you may be thinking. You’ll go to clinic for tending to
the wound and weekly monitoring with the hospital to see he’s doing well.
Meds are taught to you. It’s a lot but they seriously map everything out to
a T. Foods need to be simple so soups pre-made and such work easily. He’ll
sleep so much. Not to say it’s a walk in the park but I really, really
feared transplant and I had no reason to feel that way looking back. The
hardest part for me was time. I was driving back and fourth from the
hospital which is an hour away for his daughter to do pick up and drop off
from school and the exchanges with her mother. I slept in the hospital (in
a chair) because I did not want to leave him. I was glued to the hospital
for a few weeks and that’s draining. When we finally went home isolation
was depressing but I turned to this community. I also had a hard time
getting out of the house to get groceries and refill medicines (use amazon
or safeway deliveries) because I did not want to leave him. I’m tiny,
4’11’’ and he’s 5’11, picking him up from chairs and such was a tad hard
for me before transplant. I should have learned how to get him up and down
using the methods that the hospital showed me after transplant. Again, I
would say, the hardest part for me after looking back now was the time
management and the stress in the moment. Not the actual work tending to
him. We pretty much locked up in the house for a few months and then it was
done. He was out seeing his daughter at softball games by late spring. He
was transplanted in February.
I hope I am not rambling on too much. I’m off to get the kid from school
but wanted to see I got back to you quickly.
We’ll talk soon.