Tomorrow my husband going for his Celiac test.
What questions could I ask the Dr about his PSC too? The last time when she broke the news to us she was a bit harsh and Blunt.
Has your husband's doctor checked fat soluble vitamin levels (ADEK)? How about a bone density scan to check for osteoporosis? Both of these should be checked initially and again every couple years even if there is no current issue.
What does your husband's doctor think about the latest research about oral Vancomycin as a treatment for PSC? What other trials is she aware of and what are her thoughts?
What is your husband's doctor doing about treating symptoms? What is the game plan if your husband experiences a cholangitis attack (script for antibiotics at home if experiencing fever/chills, etc.)? Has your doctor briefed you both about cholangitis symptoms?
How often is your husband getting MRCPs performed to screen for cholangiocarcinoma?
Has she screened for IBD? This should be done even if he is asymptomatic.
For any test or medication ordered, ask why it is being performed/taken and do your own research. A lot of old school doctors still do things the old way, which is often wrong. A lot has changed in the last 10 years and many doctors haven't kept up.
Thanks for the questions.. Oh Boy so much to think about.
Nope she doesnt mention any of the above but just told us.
Bad Luck you got PSC,there's no cure and you could get worst next week,next month or next year.
Its just waiting for time...
which now has make my hubby depressed and in a total shut down mode to me and the kids.
I am struggling to get him to get on this site to read some of the post.
She sent him for Gastronopy for Celiac and tested early signs of it.
Meeting her next Friday for more result on this Celiac and she had not touch base with PSC thingy at all.
I will ask her the questions that you had posted above.. Thanks so so much.
The DR, she's young not old and yet she's so blunt with the whole thing and had F up my family life. No assurance of what we could do.
Sorry to hear. If you aren't happy with your doctor, don't be afraid to try someone else. I've had to fire a number of doctors on this journey.
Jackal, sorry your husband is in shut down mode. While it is a matter of time for a psc symptom to rear its ugly head, I learned a long time ago to focus on the long term and control what you can. it really helps doing both. This disease will test the patient and family/caregiver in the not knowing. Your flexibility and sense of humor will be tested.
I hope your hubby comes out of his shell soon.
Jeff
We are just about heading that path too I think.
jtb said:
Sorry to hear. If you aren't happy with your doctor, don't be afraid to try someone else. I've had to fire a number of doctors on this journey.
It sounds like you need to get to a specialist for his PSC. A hepatologist/gastroenterologist is essential to have on the team... and then a local doctor that is willing to learn and understand , prescribe and test in support of the gastro/hep team.
As for the depression... you can't force someone out of it nor avoid times for going through it. It is a part of acceptance of a disease, kind of like the mourning process... the fact that you have lost something (in this case, health). I am speaking from 6 years of experience; as a partner to a PSC'er. It is rough and there are ups and downs. What your husband is experiencing is understandable and he needs those that love him to offer compassion, understanding for his feeling down, unconditional love, patience and reassurance that you are in it for the long haul and you would like to support him in finding a good team to help you both through this. Reassure him that when he is ready, you want to talk about it.
I've had my own issues to deal with my partners illness. Fear is basically the basis of all of my mental challenges/depression/confusion etc... with our situation. Strength and wisdom can be gained from tough times.... and allowing F-ups (allowing yourself to be human) is REALLY essential too. Sometimes my behavior is less than pretty, and later I recognize it... trying to remain truthful to myself and stay committed to growing and evolving into a better person BECAUSE of my trials and the revelations that are offered through them....patience, kindness, understanding, loving, unselfish... you know...
I feel for you. IF you would like to friend me on this site, feel free and we can discuss further. It helps me to share some of my struggles too.
I'd also suggest to put a question out on this forum for dr. suggestions. What region do you live in? The care and expertise you get for this makes all the difference in the world... and there are a lot of good doctors out there who are knowledgeable and caring. When my husband was first diagnosed his gastroenterologist didn't belabor too many details about PSC. I am glad he didn't because there is too much to process at first. He would answer our questions, but I think was careful not to overwhelm... which I appreciated. Our local GP doctor and support staff is SO honest and we love him for this. He admits he knows little about PSC, but is fine with collaborating with us and the gastro/hep drs. when we need immediate help and when dealing with any other related or unrelated health issues, overlapping labs and procedures and medications.
Hang in there. Go easy on your husband , yourself and the kids too. When you stay strong as a family together, it is the best gift to your dear partner and will make such a difference in his health and quality of life... in the face of stupid PSC!
Hi Dolphin5,
I hope I can just give you a big HUG!!!!!
Our GP is the same as yours, she's such a sweetheart and like a sister to us, so much compassion and
talking to us about what to do and helping us with interaction with other dept which he has to do other test.
I would very very much like to friend you and if you have a facebook or any form of quick way to get in touch would be great if not here will do. We are in Australia.
For now Yeah dearest hubby is getting better and moving on and kids are all good but I am still keeping it together and I know like all of you we can fight this PSC.