James Redford, Robert Redford’s son lost his battle with PSC yesterday. Transplanted in 1998, I believe, with bile duct cancer returning and his patient but losing WAIT on the transplant list.
I’m early stage. Diagnosed January 2018, but have had it a few years prior we are sure based on schlerosing. My symptoms are minimal other than changes occurring slowly and differently in my hepatic and common ducts, plus other smaller issues I’m able to deal with as I learn. I forget sometimes about this evil, but mornings like this it all comes barreling back loud and clear. My time is ticking and even if it takes 15-20 years for me to be sick, I’ll be too old, as a woman, for transplant. It’s not a pretty future to look to retire or look forward to.
I hate this disease and today I reminded why. It cares not for how hard we try, it’s just Who and When. I also find, being single in my 50’s, many men my age are not interested in a future such as mine. I don’t blame them, who wants to retire just to most likely be financially devastated (after all that hard work to retire and LIVE!) and spend days on end in pain watching a loved one fight for life?
Just expressing as so many old feelings and realities once again surface until I push em’ back and Keep Moving and Living… whatever that means when one’s future is so not something I look forward to.
That was disheartening. I had heard he had died, but did not know anything about him.
MzzP, I hate that you are faced with that situation. There is the question I had of whether to hope for a transplant soon meaning get sick quickly, or hope for a good long time before a transplant is needed. It took 4 years, 2 months from diagnosis to tx, so I hope good things(in the long run) happen to you and for you.
Jeff
Mzz P.
I am in a very similar situation as you. I am a 56 year-old male that was diagnosed three years ago. My bile duct stricture seemed to be minimal and moving slowly. I had an ercp last week and they are checking for typical cancer screening, but the doctor was not able to get through one of my bile ducts. I am guessing a stent may be used next time but I do not know much about this process. I am not on any regular medicine yet except for my UC. I feel good 90% of the time and make sure I stay absolutely positive with all of my strength, and of course putting my faith in my deep Christian belief. I believe this is just something God wants me to go through for whatever reason. (May his will be done, not mine)
Of course I would hope to get a transplant when it’s time, but like you not sure if I would be too old. (Perhaps some of the transplant patients Can shed some light on this criteria?) I live a very healthy physical and organic green diet, aside from a couple glasses of good wine here and there. Not sure any of this as much impact one way or another…
I know one thing, staying positive is by far the healthiest thing we can do. I’m especially grateful for this chat board Mark and Jeff and those that are always responding too newbies like us.
I will add you to my prayer list, along with all the others on this board and I pray for…
Thank you Jeff. My pendulum still can swing pretty hard back to Reality when I’m reminded or yet another PSC death hits close to home for me. Not sure why Jame’s Redford’s did, but perhaps I had been living the “dream” just a wee bit too long and I needed a reminder that dreams are just that.
What I have found and am so very grateful for is my recovery - as I call it - from those days or moments or windows of This Sucks. I know, I think, I can never be as low as I was in 2017 - end 2019 and into early 2020. The crawl out of that hell alone was arduous and the only reason I was able to cope was outta pure force to Keep Moving. It paid off. Although there was no joy in Moving my life forward when so depressed and scared and freaked out about my future and how I am to approach it - it paid off. As I’ve come out of my darkness and back into the Light of Life and Love and Beauty of Mother Nature, my creativity it returning and thus my own inner light.
Thank you so much for listening and responding. It means so very much. I am doing much better today as I’ve a few sayings I lean into:
Keep Moving
Each Day we start Anew
Get To Tomorrow
Blessings to you as you continue on your journey on the other side
Jennifer
Hi Mark,
Thank you for your words of understanding. It’s a wild ride settling into a whole new way of approaching end of life window (retirement) when all original plans are dashed. It felt to me my life shattered and I am now finally putting it back together - slow and sure outta pure desire to Live not knowing what that means anymore.
My understanding is 70 years of age is pretty well a powerful cut off. I know a few over 70 have been transplanted, but it’s very rare. Women due to lower muscle mass tend to have a younger cut off of 68ish. The biggest issue is lack of available livers and PSC patients being #5 priority consistently in the recipient list. This is another area that I find difficult to process but law and rules are what they are and rare and incurable diseases are far from priority with regard to transplants.
I believe diet and exercise do matter. There is a study starting at through Harvard on diet alone. Had an awesome long conversation yesterday - Not sure I’ll be eligible due to my ALP not being high enough, but the study is all about gut biome and how the health of it affects so many diseases. I really hope they take me, as I think based on my meat diet and lower ALP it would be very interesting to see if my ALP dropped significantly reducing or removing animal proteins overall. My point, keep up the great work and don’t sweat the occasional wine. Whatever it takes to feel good.
Agree on doing out best to stay positive. I found that I would fake it more often than not over the years as honestly, what other options are there? Again, slow and sure it paid off. We must always be our best and strongest advocates and support. This I have learned.
Take good care, blessings and thank you for adding me to your prayers. I too shall send healing and healthful energy your direction.
Jennifer
You should try therapy with oral vancomycin to see if it helps stay your progression. Would be an interesting experiment. I tried to get Jamie Redford to consider this in 2016. I wish I had been more persistent.
Thanks for your response Jennifer. Also thanks for the information about age transplant.
When you or we say the words “Fake it” I still feel it really is “building strength” and faith in doing so. I have found that it feels like faking it, but it builds my faith muscle. Remember, “Faith” or “fake it” (much the same) is an action, not an emotion. (Emotions are unreliable to me)
In my less mature years I let my faith and actions follow my emotions. (That was immature and put me into a nervous breakdown.) In my older years I have learned to grow my faith and lead my emotions with my actions. “Faith” like love which also usually an “action” should be leading the train, and those feel good emotions will eventually follow. And hopefully health will also…
Thanks everyone for your postings here. I had been feeling down after originally hearing that news earlier this week.
I was diagnosed 20 years ago and was told I had 5 years left without a transplant. Went on ursodial and modified my diet a bit. Somehow it hasn’t progressed…luck? prayers? I have tried to forget about it over the years, other than the Urso. But news like this can hit us all like a ton of bricks, suddenly and without warning. I’m 65, so on the far end of the possible tx list now. So for now I just try to enjoy every day as much as possible, retired now so that makes it a lot more doable.
Love to all
Mitch
Hi Cactusgirl,
I totally understand. I actually went on Vanco for 12 days for a severe cat bite and my ALP was in Normal Range over a week after being off 1,000 mg a day. It was a generic brand. Insurance did not cover.
With Insurance for 12 days: $800+
Without Insurance for 12 days: $600+
I paid the $600 plus.
My hep and current PC is all for trying it. However, I wish to wait until my ALP stays around 250. Vanco is an amazing antibiotic used for so many bacterias that jump ship, even after transplant. I’ve no desire to build an immunity to it. So I will wait for now. AND PRAY one day it does not cost me over 2k a month to live healthfully due to the insane $$ gain by the small few.
Actions are Everything -
Heart over Mind is also so important for me. It’s easy to think something through, but to actually Think, Feel and Believe it to be Truth? That’s a whole other level.
I too am here - never forget. From one Warrior to Another. I get it.
Jennifer
Mitch,
You just made me know I’m on track to slip “off” over a complete stranger’s death of our shared disease. I can appreciate your post on so many levels. Mostly, the level of Hope, which is not easy to come by more often than not.
In another group a friend always spoke of “Waiting for the Other Shoe To Drop”. He is in his later 60’s but with other health complications. And transplant was never an option due to a heart condition.
Each day is a blessing and I think it’s ok to sometimes NOT recognize this and admit it. Mostly, we come back around to it. But on the hard dayze, as I call them, it’s more than normal to feel #$%^&* even when Life Is Good.
Thank You for sharing - part of me always hates to say the negative out loud, but then, Reality was never meant to be ignored, let alone not respected.
Congratulation on retirement! My goal is to figure out how to do it early… no way I’m working like I have another 10… time to travel some, never have. Pandemic isn’t helping either goal, but in the interim, my home is being cleaned out and simplified and a VRBO or Rental to traveling medics in the works!
Jennifer, does your hepatologist encourage living donor transplants? There is no waiting list nor does your MELD determine when you are transplanted if you have a donor match. I was 65 when I was transplanted. My MELD was 16. I had PSC at least 12 years at time of transplant.
Paul
Hi Paul,
I’ve not had this conversation with her. She is definitely a more progressive hepatologist, so I think this is a great question to ask.
Thank you - I just want to be the one to go 30 years or more and then I’m good! Ladies in my family, both sides, have long lives
Jennifer
I’m sorry, but I understand. I’m 67 and diagnosed 5 years ago. Hardest part is I have a husband but he was diagnosed at 52 with Parkinson’s so I’m responsible for almost everything in our lives, plus dealing with this. Seems like 1 catastrophic illness should be enough to deal with. My daughter’s ex-mother in law was picking up our Grandson’s and ask how was I doing and that I’d better wish for the disease to move quickly because in 3 years I’ll be too old for one. Thanks Lady I needed to hear that. Hi just let my daughters think they’ll be able to donate to me, they’ll be happier that way.
Hi plgshoes,
Ugh, I’m so sorry that you are not only having to deal with your husbands struggle but your reality on top. I’m only a shy 3 years in and it has taken this long to really get my head wrapped around it all. I also understand that Enough is Enough. For me, it’s just my body. I swear, every year I a new incurable crops up on my body. That or my spinal stenosis wakes and starts its march to pinching off my nerves in neck or low back. Some days I think I should just throw in the towel and forget about trying to stay in shape and care - however, I’m just not wired to Give In… even if I have days where I just do and must take a day to process harsh realities.
Humans are very insensitive to any person with an incurable disease. My favorite is, We All Die. I don’t know when I’m going to die either. I’m thinking… yeah, save that for your kid or yourself or your loved one when they are diagnosed. Humans are selfish that way. In our world we know liver transplant is all we have to live for and fight for even if a band aid. We know how rare it will be if we live to and then get a transplant due to the competition of Curable Diseases that get liver transplant priority. The Bitch?? is when you are older and the only “hope” is maybe I’ll get plenty sick sooner rather than later - and that’s just messed up too.
I don’t have kids so don’t have to deal with that part. I was raised by a doctor and so I just always put out the Reality regardless to my family (mom and sisters). PSC is what it is and if one is lucky enough to get a second chance - Amen! If not… it’s a shitty way to die.
Hang in there and thank you for sharing. I do hope you’ve a wonderful holiday window ahead! I’ll be celebrating alone… still… but Me Myself and I are starting to finally get along better. lol
lol