Hi, I’m Gaspard, I’m forty and live in a rural spot in southern France with my wife and my two kids.
I’ve been diagnosed psc, when I was about thirty but by then it came almost as a relief. By then I’ve had hard times from my “unidentified liver problems” for almost half of my life.
At 16 I could have outslept a sloth and got easily nauseated every second time I ate. So an awful lot of blood work, old school liver punctures and spinal taps were done which lead to such wild misdiagnosis, that at 19 I was dead sure that I would sure be dead in a non-distant future.
I also was diagnosed with osler’s disease, which didn’t come as such a surprise. It’s the only ‘real’ family heritage we had those last five generations…
That’s where I decided to stop seeing the specialists altogether. (I admit : maybe not such well balanced and smart decision, but on the other hand in four years they only achieved to drive me half crazy)
Ten years later, at 30, I found myself quite surprised to still be around.
Even though the jaundice, the itch (and the issuing insomnia), anemic states, catastrophic blood work and my overall rather poor shape had not made it easier: I had finished my studies, moved to france and was about to found my family.
Several fits of acute pancreatitis made me getting back into the ‘medical circuit’…
ln a matter of weeks my wonderful new hepatologist in Montpellier diagnosed PSC and fixed me with urso (800mg), which took away most symptoms. Almost ten years without an itch or major nausea and almost no change to my bile ducts/liver. Fine.
Until last year… the latest MRIs don’t look as good, and frankly: I quite feel it (months of abdominal pain, sore back, etc)…
After ten years not quite on the transplant list I think I’ll have to move on… I’m still in good shape but apprehend the results of the upcoming MRI in February.
Generally I’m still fearful about the whole transplant issue… You probably know how it feels: it is maybe not the best liver but I’ve got such a mileage out of it… Somehow it’s pretty hard to give up on it…
Well, that’s about it. And thank you for running this place! You look like a great community of empathic and well-wishing people. That really decided me to join here rather than somewhere else…
You’ve had a long road with your liver and psc. I hear you about the trepidation with what may be on your horizon. We have to deal with the physical part, but the mental part of this is just as important. I hope you get good news next month.
Jeff
Gaspard,
Your story gives me renewed hope at what we and our beautiful bodies can endure. And I like that you have such respect for your liver and all it has done for you. Imagine what that poor beastie has been going through lol
Thank you for sharing and hang in there as you do and have been.
thanks MzzP and JeffDC,
I have the hypothesis that PSC has its very own zen to teach, at least it got me accustomed to appreciate every day without major pain as the wonderful moment it is. even though they’re far from being equal. sometimes I just have to keep the bed but, hey, at other times I hike the polar wilderness or swim around tropical islands, as long as I can share it with somebody close everything is just ok.
after 25 yrs I feel I can count on constant change, which sometimes comes as a comfort, not only as a challenge…
I tried to tell my story that way (not sure if I was successful?) seeing all the posts from adolescent fellows or their families who still wrap their mind around the whole issue which can be quite a nut.
I’m getting increasingly conscious that, psc or not, our vital organs (original or customized/transplant) are keepin’ on 24/7 and reaaally stick to their job. we’ll go far.
When i have something new I’ll let you know.
thanks g.
2.5 months ago my 33 yr old husband was at the end of his road. He was not qualifying for a liver and was in and out of the hospital…matter of fact we left the hospital on a friday and we got a call the next night and could not be more relieved.
I think that the worst part was getting to a point where we might not get transplanted…the transplant was seemingly easy…(I know this sounds crazy…but he was so sick for so long…looking back we realized that transplant is nothing to be afraid of when your liver is done.) ( i should say…worst case-he did go into rejection which was scary but our doctors told us that his immune system was “doing what it was supposed to, fighting back” they did not act like it was a bad thing…they knew what to do.
HE IS A NEW MAN! We have our life back. He is currently off of work as a teacher and now at 2.5 months singing and laughing, wanting to drive our 3 kids to school, grilling and living like a normal man. He still cannot lift over 5 lbs…but he is ALIVE AND HAPPY! It is the GREATEST gift we could have gotten. We know that each day is more than what he could have had…we would have taken a liver long before when he qualified for one if we knew how much better it would make his quality of life.
What a whirlwind.
I was very skeptical of how easy drs told us this would be…even his pain (bc they sever your nerves) was not as bad as either of us was anticipating. His meds were not nearly as expensive as they told us they would be (being a teacher has a few perks…lol)
Live each day and enjoy your babies and your health. Be thankful. Say no to what stresses you out. Say no to people that suck the life out of you and pull you down.
Transplant is beautiful…in so many ways. Just the thankfulness you will have for your donors family, that in their time of grieving their loved one they decided to save others lives. It is incredible and something beautiful to be a part of.