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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Doctors,Denial and Difficulties with Chronic Illness polluting planning for future

So, if one has periods of being somewhat asymptomatic, (just fatigue and bothersome itching right now) and it has been 3 or 4 months since the last cholangitis attack, what is the value in going to the dr.? My partner is not on a list for a transplant since MELD is so low (and pretty much has been since diagnosis 4 years ago). We were going for testing every 6 months up until about a year ago. Now he basically wants to live like he doesn't have PSC, yet we are totally unable to plan anything for our future. I feel like we are lost in a land of elephants but can't talk about THE elephants front and center.

I came across a great quote today from a free online booklet that Helena Madsen wrote about chronic illness: (here is the link to her excellent website: http://chronicmarriage.com/ )

Problems related to chronic illness get layered on really fine over time, like varnish, until you get to a point where you just don’t know if it’s possible to get back to someplace good.”

I recognize that is happening to us and it feels pretty sticky/stuck.

Thank you for introducing me to this website.

Like your partner, I feel denial is often the best approach to PSC. I think you need to focus on the moment you have, not on the ones in the future. If you are in a land of elephants, hop on one and take it for a ride. Enjoy yourself... because now is all you have. Sure you have problems, but what are your advantages....things that healthier couples don't have? For instance, do you have more similitude in your beliefs than other couples? Do you have more time together? Perhaps, you don't fight as much, or you find yourself laughing a lot?

It's a matter of framing. The difference between having a serious chronic illness like PSC and not having one is that you have the advantage of either knowing or not knowing what may take you out. But the reality is that anyone can get hit by a bus. There is no guarantee that any of your future plans will actually materialize. The reframing comes from changing "you just don't know if it's possible to get back to someplace good." Instead try to focus on the good that is right in fron tof you every day. Shorten your view. Change your work if that is what would make you happy to get up and go to work in the morning. If his MELD has been low for the last 4 years let him live for a few years as if he "doesn't have PSC". I was told early on that I would not live to be 30 because of my severe Crohn's disease. On my next birthday I will be 60. I have had Cancer twice, both times I was given very short odds for making it out 6 months. It has now been 10 years since the last go round. Don't live your life with PSC held like a gun to his head. Do what you can to maximize health for both of you because it just feels better to be as healthy as possible.

Mmarques: such good advice. Thanks. These are things I know, but have a difficult time hanging on to… especially when financial stress, job loss and health insurance issues spill over onto all the good stuff in my life. It is difficult to talk about financial planning with my husband as i do want to honor his desire to put PSC way in the background of our lives. So, to speak of such things brings the angst in to life, putting stress on his system, but leaving me feeling very lonely in working through my concerns. I remind myself that everything is ok in this moment. I remind myself that at least half of my worries never come to fruition. I know that I have handled very difficult things in my life before and made it through and that life is a mixed bag of highs and lows: the lows offer us insight and opportunity to grow and evolve in ways we might not have done had we not had the trial. A favorite quote on that: “Life’s challenges are not supposed to paralyze you; they’re supposed to help you discover who you are.” – Bernice Johnson Reagon. So, if I figure out who I am from this challenge, I will let you know. (Ha!) I hope to find empowerment and the potential that we are all capable of, if we can find the way.

There now. With the help of this forum and a little stream of consciousness, I have found compassion and solace and will meet this day with a little more hope and pep in my step. I am sure my husband will find my good spirits to be an encouragement too.

And, Stephen: I appreciate you pointing out the importance of keeping track of your progression of the disease. The cholangiocarcinoma (cc) issue had confused me. I had read in some places that you move up on the transplant list and MELD score if you have cc. Then I also read that they don’t do a liver transplant if you have cholangiocarcinoma . So, I went to the mayo clinic website and got clear on that. Here you go if you are interested. http://www.mayoclinic.org/medical-professionals/clinical-updates/digestive-diseases/new-options-patients-bile-duct-cancer . Now I understand why it is important to keep track of it. I do believe my husband is of the mindset that he does not want to go through a transplant, but that could change too… hopefully.

Ok, off to start my day on a more positive note. Have been in such a funk with it all. Enough!.. Until next time… Stop to smell the roses!

Hi

I have never posted, but lost my brother a year ago to PSC/bile duct cancer, and he lived like he didn't have it for almost nine years and one day woke up thinking he had the flu and it was a tumor in his bile ducts, he went through chemo, radiation, and 13 ERCP's in less than a year, and got up on the list and one day found a tiny little bump on his head...biopsy? the bile duct cancer had spread and he was gone in two months... before that fateful day in the spring --I remember him saying "if this is the best I am going to feel, than I am going to live every day to its fullest like this" and although I supported his heart's desire to not be immersed in doctors and visits and tests, it was so hard to deal with the idea that had he gone every six months they could have caught it before it got so large, the tumor was right on the border of their guidelines and they agreed to try and treat it and get him on the list...we were told it was pretty much hopeless, but he, at that point, didn't want to give up, his children begged him to try. I guess my point is that ignoring it and not going to the Doctor, we all understood why he would want to avoid this, and also understand what if's aren't productive. A beautiful man, father of two children and husband to a wonderful wife, is gone. But all of you are here, and have a chance...live like you don't have it every day in between your check ups...make this little sister feel maybe like somehow her brother didn't die in vain...God bless you all, I hope it is ok to be real...

Glass Flower,

I think that there is a difference between denial and acceptance. With denial, you avoid doctors, hospitals... as much as you can. With acceptance, you still live your life as much as you can/want... but still do what needs to be done medically.

I know in the back of my mind that my road will become much more difficult as my liver deteriorates. So it weighs on my mind, but I try to live my life with as few elephants as possible.

Asking the what if's are human nature, but please do not let them paralyze you or your hubby's life.

Seems like your hubby and I are at about the same place with psc. Very low meld, 6 month check ups, fatigue, itching. With as aggravating as it can sometimes be, I am pretty thankful it is not worse. That mindset can help a lot.

This helps so much! Thank you for your insight and know that I am so sorry for your pain, mikes sister. I will keep you posted on how it goes with encouraging my husband to “live like he doesn’t have it between check ups.” You and Jeff DC’s words have given me ideas for how to encourage him in a tender but convincing way. Please know with certainty that you have helped me so much today. His last ca 19-9 blood test showed an elevation and although that could just be due to the fact that he had a flair up at the time, he has avoided going beck to get it checked as his dr. recommended. Thanks so much for your support that I need so very much right now. The differentiation you make, JeffDC, between acceptance and denial is appreciated too. Living with elephants inside ones home is living with anxiety that adds to stress (bad thing for anyone, but esp PSC-ers). Living informed but not burdened by made up stories and worry about the future is futile and counterproductive to living and loving fully today, indeed. Onward!




mike’s sister said:

Hi

I have never posted, but lost my brother a year ago to PSC/bile duct cancer, and he lived like he didn’t have it for almost nine years and one day woke up thinking he had the flu and it was a tumor in his bile ducts, he went through chemo, radiation, and 13 ERCP’s in less than a year, and got up on the list and one day found a tiny little bump on his head…biopsy? the bile duct cancer had spread and he was gone in two months… before that fateful day in the spring --I remember him saying “if this is the best I am going to feel, than I am going to live every day to its fullest like this” and although I supported his heart’s desire to not be immersed in doctors and visits and tests, it was so hard to deal with the idea that had he gone every six months they could have caught it before it got so large, the tumor was right on the border of their guidelines and they agreed to try and treat it and get him on the list…we were told it was pretty much hopeless, but he, at that point, didn’t want to give up, his children begged him to try. I guess my point is that ignoring it and not going to the Doctor, we all understood why he would want to avoid this, and also understand what if’s aren’t productive. A beautiful man, father of two children and husband to a wonderful wife, is gone. But all of you are here, and have a chance…live like you don’t have it every day in between your check ups…make this little sister feel maybe like somehow her brother didn’t die in vain…God bless you all, I hope it is ok to be real…

thanks guys, somehow a bunch of strangers who live it, is almost better for comfort, than a room full of friends, who have no idea what PSC is--I have read every single post that comes to my email before his passing and since...there have been many times I did not post because I didn't want to bring anything that could be construed as negative into such a nice happy supportive place...it really encourages me that you all support each other. Today seemed right because I know my brother really truly lived, he would say each time he had a gnarly mountain bike ride in the mountains he loved so much of Alaska, "today was the best ride EVER" (and then as some of you may understand, collapse in a heap, and nap for two hours or more, totally completely exhausted) he handled the last year so humbly and quietly, he told me he literally felt like every single part of his body was being lit on fire, and being the funny guy he was, he would say um yes, if you are wondering about THAT, it itches like it is on fire, and would make us laugh, at the end, there were no more jokes, or sly comments, he was just so so quiet, ...yet he also managed to compile literally thousands of pages of journal writings to his family during this time (nine years from his diagnosis), he would get up very early, shower, and write, and then be asleep in the midst of us by 9 a.m. ..again, another example of living in the moment and yet leaving something of himself behind. His 56th birthday would have been this past Sunday and his wife treated us to a few pages of his journal entries,one where he recounted his 37th birthday and what he and his son did, and another where he described how summer in Alaska was like a delightful bag of something delicious and expensive that you savor, when you get to the bottom of the bag, dismayed at how it went so quickly and how you just want a few more of that delicious expensive treat, it made me think of him, wish I had one more day, or even an hour to talk...such a blessing though to hear his "voice' in his writings though. thank you for the kind words and it does really help to know that maybe someone out there will perhaps in the midst of their "living to the fullest" which I completely endorse and I know Mike would too, just remember to take one day or so out of many uninterrupted, to go get checked out, eat healthy, no gmo's and processed foods, and yep just "give er' everything you got each day" until the next check up, hug your wives and husbands, and children, don't sweat the small stuff, and breathe deep. Another shout out to Mayo Clinic in Rochester MN who housed him at their Gift of Life Transplant House and made my whole family feel loved and welcome...he was a teacher and when he was asked to do extra work in the summer he would ask them if they could pay him what his summer vacation time was worth, at his Celebration of Life his former principal said she asked him "Ok Mike, I bite, how much is your time worth an hour in the summer?" and he said " A million dollars" and he meant it....truly wish everyone the very best and hope all your days are "the best day ever" like Mikes....

What a beautiful tribute you wrote! It really shows how special your brother was. Obviously, by the show of your love, you are too. Thank you for sharing that. It sounds like anyone with a chronic health issue can glean something from you and what you can share about your brother. Thanks so much for your encouragement, Mike’s sister. This stranger feels better today because of people like you in the world.





mike’s sister said:

thanks guys, somehow a bunch of strangers who live it, is almost better for comfort, than a room full of friends, who have no idea what PSC is–I have read every single post that comes to my email before his passing and since…there have been many times I did not post because I didn’t want to bring anything that could be construed as negative into such a nice happy supportive place…it really encourages me that you all support each other. Today seemed right because I know my brother really truly lived, he would say each time he had a gnarly mountain bike ride in the mountains he loved so much of Alaska, “today was the best ride EVER” (and then as some of you may understand, collapse in a heap, and nap for two hours or more, totally completely exhausted) he handled the last year so humbly and quietly, he told me he literally felt like every single part of his body was being lit on fire, and being the funny guy he was, he would say um yes, if you are wondering about THAT, it itches like it is on fire, and would make us laugh, at the end, there were no more jokes, or sly comments, he was just so so quiet, …yet he also managed to compile literally thousands of pages of journal writings to his family during this time (nine years from his diagnosis), he would get up very early, shower, and write, and then be asleep in the midst of us by 9 a.m. …again, another example of living in the moment and yet leaving something of himself behind. His 56th birthday would have been this past Sunday and his wife treated us to a few pages of his journal entries,one where he recounted his 37th birthday and what he and his son did, and another where he described how summer in Alaska was like a delightful bag of something delicious and expensive that you savor, when you get to the bottom of the bag, dismayed at how it went so quickly and how you just want a few more of that delicious expensive treat, it made me think of him, wish I had one more day, or even an hour to talk…such a blessing though to hear his “voice’ in his writings though. thank you for the kind words and it does really help to know that maybe someone out there will perhaps in the midst of their “living to the fullest” which I completely endorse and I know Mike would too, just remember to take one day or so out of many uninterrupted, to go get checked out, eat healthy, no gmo’s and processed foods, and yep just “give er’ everything you got each day” until the next check up, hug your wives and husbands, and children, don’t sweat the small stuff, and breathe deep. Another shout out to Mayo Clinic in Rochester MN who housed him at their Gift of Life Transplant House and made my whole family feel loved and welcome…he was a teacher and when he was asked to do extra work in the summer he would ask them if they could pay him what his summer vacation time was worth, at his Celebration of Life his former principal said she asked him “Ok Mike, I bite, how much is your time worth an hour in the summer?” and he said " A million dollars” and he meant it…truly wish everyone the very best and hope all your days are “the best day ever” like Mikes…

This is why I love this forum.. the posts here always touch a chord! I read this thread from my phone and I got so soppy that I had to get out of bed (it's past 12:30am here in the UK), go downstairs and bring my laptop back up with me to reply!

Glass Flower: I believe most of the 'patients' here can relate in some way to the way your husband is feeling. I've had Ulcerative Colitis for over sixteen years now. For a large part of that period I too lived in denial of the fact that I had it. I always thought 'if it doesn't hurt me enough to stop me in my tracks... then I'm ok'. I made a decision very early on that I wasn't going to allow it to run my life or my career. And for many years that worked for me.

This year's flare-up came as a shock and in hindsight I see now how complacent I had been with UC. When the PSC diagnosis came in a couple of months after the UC flare-up, it broke me initially. That's when I started doing my research and came across this forum. This time round, I was able to 'accept' the diagnosis much quicker. I was better equipped... not only with knowledge of the condition but also with a wonderful support network consisting of those living the same. Luckily, I am fairly asymptomatic at this stage, aside from fatigue, pains and the odd bit of itching. However, I feel I am more honest with my doctors now and do what I need to do.

The condition being what it is, has indeed prompted me to think about the future and make some difficult decisions... with more still to come I'm sure. At the same time, I won't deny that some habits are hard to break and I am still of the mindset that I won't let this condition run my life or my career.. cos I love them both (",)

As Jeff says, there is a difference between denial and acceptance. Acceptance just makes you more aware of the possibilities and allows you time to better equip yourself for the future.... But that doesn't stop you living the 'now'.

Life is so precious
And each day a gift
So enjoy every minute
As it were you last to live

Cherish your loved ones
Hug them tight
Share with them your heart
And your time

Nothing is forever
And life goes so fast
Each minute that passes
Is one you can’t get back

When troubles arrive
And knock you off your feet
Stand up and smile
And remember life is too sweet

Every morning when you wake,
Decide right from the start,
That “Today will be a good day”
And let it all in with an open heart

(http://www.thepoetrypad.com/inspirational-poems/life-is-precious)

Mike's Sister, thank you so much for sharing with us your brother's story. I am sorry for your loss. It is evident from your posts what a cherished person he was and what beautiful memories / moments he has left behind. You put forward an invaluable lesson for us and I do hope our members here take heed.

As Stephen said, " if your post helps persuade someone to get checked in a regular basis, then you have done us a great service".

Thank you

Stephen, I hear what you say about the need for a balanced approach and accept too how difficult that can be. Though still early stages, I too am facing similar dilemma's. For you, I have the same two words I have for me... if your circumstances allow then 'Carpe Diem'! Take that vacation... travel.. do what you plan to do upon retirement but sensibly so. You can still fulfil your key wishes without blowing that retirement fund totally. We'll still be here when you get back! (",)



Stephen Cox said:

Hi Glass Flower,

Great site. Thanks for sharing it with us.

I can relate to your boyfriends feelings about not wanting to go back to the Doctor so frequently. The problem with this approach, in my view, is PSC is still working away even if we feel ok. It can be slow and it can be fast and we just never know when things might all of a sudden start progressing quickly. The other matter that sticks out like a herd of elephants is the risk of Bile duct Cancer. Securing a diagnosis early is the key to beating this. So monitoring is key.

I get fed up many times living with this disease and feeling like it dominates my life, marriage and basically everything I do. I would dearly like to escape it all. A balanced approach is required but I haven't found it yet. Securing your finances is critical. Even with this I ask myself, do I need retirement savings ? I likely won't be around to use it. But of course I could be but a big part of me wants to drink, eat today for tomorrow is very uncertain. Things like vacations, part of me says, go travel now before I get too sick. Money be damned. It's a huge dilemma.

Dear All,

This was such a deep thread and I almost missed it.

Thank you for the poem Priya.

Take care of yourselves and each other.

PrincessD's Mum