I have recently been diagnosed with PSC (Wednesday) and obviously right away went to Dr Google to get as much information as possible. I am a 32 year old male, married with two young children and another on the way in January.
I have suffered from Ulcerative Colitis for over five years and was diagnosed with a new condition called Alpha-1 Antitrypsin deficiency (live/lung disease) in April. I have never smoked, drink on the odd occasion and keep myself in relative good shape. Probably could tone up the middle if im honest but that’s by the by.
Obviously from reading the posts and internet this condition is actually much more serious then the specialists made on. They were quite calm and said that I am now under their care and was immediately given bile replacement tablets and dates to see them again… Blood tests etc. This is on top of already being seen by the respiratory and gastroenterology teams.
I feel a bit like on autopilot at the moment, not to sure what to think and obviously thinking the worst on occasions. I have 4 life long debilitating conditions and just think what next!!! My family have been calling me and crying, my wife is upset but I don’t think the news has set in for me yet.
That said I was on the train into work this morning and all of a sudden I felt myself welling up and getting teary eyed. The lump in my throat was virtually protruding my skin. I had to get out, go to a closed off point and let out a few tears before composing myself.
I am still learning about this condition and as I said only told on Wednesday. I don’t know what to expect and before my mind literally blows up with my thought process, I was wondering if anyone had any advice or anything to give me hope or faith.
I am grateful for any support or replies and hope to get to know some of you better.
First of all I’m very sorry to hear about your new diagnose! I can imagine it can be very scary when reading about the disease on the internet!
I think it’s only natural that you felt the tears coming up. You already have so much health problems and I can understand that sometimes it’s all too much and very overwhelming!
My doctor was very calm when he told me the news as well, so the seriousness of the disease didn’t really hit me until I read information online.
However: a lot of the information on the internet is outdated!! So maybe that can ease your mind a bit?
I don’t know if you’ve been diagnosed because of symptoms or after a check-up?
Sadly there is no way of telling how, when and if the disease will progress. Some people have no symptoms for over 20 years… And others need to have a liver transplant after a few years of diagnoses.
So basically, there isn’t a way to tell how it will go. It is very unpredictable but a lot of people are doing relatively well despite the disease.
I hope this site will help you to learn more about the disease and have support from people who understand what you are going through. This site really helped me to understand psc better! And everyone is very kind and helpful
It is a very serious disease, but it isn’t the death sentence that some sites make it out to be!
Thank you Sophie, very reassuring and of course I will keep everyone updated with my progress. If my story can help at least one person on here that this is seen as an acomplishment in my eyes.
I suppose with all my other conditions i’m just concerned that the odds are already stacked agaist me and as you said can get overwhelming.
Hi Kieran,
Sorry to hear about your situation. It is a lot to take in and having an emotional response and getting teary eyed is a normal reaction. You should not blame yourself in anyway for getting any of these conditions. Even people who are in top physical condition and young children can get PSC. It has nothing to do with being in good shape. I am the mother of a recently diagnosed 17 y/o boy with UC and PSC. I wanted to let you know about a great organization, PSC Partners for the Cure http://pscpartners.org/. They have terrific and reliable information on their website. I just attended their annual conference in Cleveland and learned a lot about this rare disease and got to meet other patients and caregivers. Many living normal and productive lives. They are having a conference in Sacramento California next summer. It is a wonderful community and I think it would also be helpful to your wife. They also have a facebook page. I am just learning about the disease myself, but one thing I have learned is that people have very different experiences with PSC and there is a growing body of research on interventions to treat PSC. I agree with the other post, that the information on the internet is quite old. The most important thing you can do at this point is to find a hepatologist who has experience treating PSC. That is really important.
My very best to you.
Alina
Hello Kieran,
Thank you for sharing your story about your recent PSC diagnosis. We welcome you to this forum especially dedicated to the discussion of PSC liver disease. I want to first of all assure you that although PSC is an incurable disease at this point, that there is hope, there is help and when and if the time comes, there will hopefully be a cure with a liver transplant. I know how you and your family feel, concerned that all your dreams and hopes may not be realized, your children’s future, etc. I went through those same battles of thought. One important thing you have got to do for the get-go with this disease, is you must educate yourself all you can about the ins and outs of PSC. You’ve got to understand it, then educate your family about it. You WILL need their support throughout this whole process. Take your wife or some other family member to EVERY appointment that will take notes, help you remember the questions that need to be asked and willing to be your advocate to fight for the answers you need when your body doesn’t feel like fighting. There is hope my friend, so don’t be discouraged.
As you were told in your welcome letter to this forum, it is VERY important that you place yourself under the care of a hepatologist. This is not your local ordinary GI doctor down the street or your family doctor but is a specialist in the diagnosis and treatment of liver disease. They preferably need to be connected with a transplant center for you will need them to be your advocate when/if the time for listing comes. Stay as active as possible getting regular exercise. Go ahead and plan for your future, don’t just bring life to a stop but press on. Your body will tell you when you need to slow down, rest more, go to bed early, etc. You will learn also to know when you need an ERCP intervention to clear the bile ducts so you can get more flow of bile. Just listen to your body and live your life normally.
We are here for you to help in any way we can. Take care!
Keiren,
I am sorry for your recent diagnosis! In August 2016 my 13 year old was diagnosed with UC. In May he was diagnosed with PSC. Needless to say it has been an emotional whirlwind! Our doctor is fabulous but was also very calm. Reading things in this group has been so helpful as a caregiver. Ask tons of questions and listen to your body. One thing I learned here is it is okay to be scared… just dont become paralyzed with fear. This diagnosis petrified me, but I believe new developments are happening all the time.
Keiren,
When I was diagnosed with psc post-ercp, the doc told me the name of the disease. I had him write it down as medical terminology goes in one ear and out the other. He told me there was no cure, but it would lead to the need for a liver transplant.
Afterwards, it took some time for the diagnosis to sink in, to learn what psc is, what it can do… The best thing about psc is that it usually progresses pretty slowly. But you need to be ready at any time when a symptom rears its head.
Having to deal with 4 health problems must be tough to handle. I had uc too, but had a colonectomy/jpouch in 2006. Diagnosed with psc in 2013, transplanted in 2017.
It is understandable that your wife is upset. In my mind, my wife thought that her security/teddy bear was threatened. Don’t doubt for a second that spouses go through a hard time when their spouse has such as disease. In your case, this makes 4. You will both need each other’s support.
I was turned over from my GI to a hematologist pretty quick. As Mark said, getting care from a hematologist is important.
As Sophie mentioned, psc affects different people differently. It is definitely unpredictable.
I had read that the average time from diagnosis to transplant is 12 years. Mine was 4 years.
Many have more than 12. For the first two years, I was mostly asymptomatic; the last year was somewhat tough.
So, is there hope, yes. Keep researching psc, because knowledge is power.
Jeff
Hi Kieran. So sorry to hear this. My husband was diagnosed last summer. They figured he had had for about 10 yrs. In 2005 he was diagnosed with uc. I am on here to learn and meet people. As a caregiver this has been so helpful and gives me answers. Your wife to can belong as a caregiver. Take care.
