Hello All, I have been lurking around the site for some time looking for answers and advice. Figured it was time to join and I go further down this road. As you can see in my bio I’ve had this disease for some time but being diagnosed at such young age never really new the seriousness of it. So as a result I lived my life with a little less concern for my disease than I should have. No drugs or crazy things like that just didn’t follow up with a doc regularly. I was symptom free with PSC for the past 18 years. My UC I have battled from day one but again mostly my fault for being hardheaded not wanting to see a dr. Gusss my stupid thoughts were if I feel ok then I am ok which I am finding out the hardest way possible that it’s not. Looking back my quality of life wasn’t that great with the UC and the great lengths and sacrifices I went through to ensure I was always covered. Where is the nearest bathroom and avoiding places altogether. Never gave it much thought then but looking back I was an idiot, but it’s amazjng what your norm can become if you let it. Fast forward Christmas Eve 2017 with family was extremely bloated thinking it was just gas from all the “great” food I had been eating the last few days. All the while I was applying for a new job, blood work comes back work doc says Whoa! You need to see a doc numbers through the roof. January wife starts noticing (she is an ER nurse) what she is sure is ascites I wrote it off as gas or bloating. February ultrasound confirms moderate ascites, start spironlactone no results add lasix boom back to normal. Great! By March energy level was zero was barely making it at work couldn’t even concentrate making numerous mistakes. Start looking for doctors found a lm integrative doc so I thought this is the ticket I can get best of both worlds some natural and some western meds. Meet with him things sound great he is so confident he can help me as he has other folks with similar symptoms. Started off doing some Iv infusions of ozone blood treatments, some cocktails of vitamins and minerals which I was extremely deficit on. Also taking supplements he recommended have a week treatments to start out. Wow I am feeling good, color coming back. Mind you by this time I had lost 30lbs since prolly sept-oct ‘17 and lots of muscle mass. Decided to take leave from work and go see this doc full time for 3 weeks straight didn’t make it one week was getting alpha lipoid acid infusions which we had done mounds of research on (currently had an appt pending in July with Dr Bert Berkson in New Mexico). Take one dose all good. Take another dose huge reaction, shaking,fever, heart rate in the 150s, labored breathing. Go back to the drawing board well low blood sugar I didn’t eat! Get another SAME reaction!! Literally just drained me to near zero levels decide this is nuts go home and make the hardest decision of my life. Go to Methodist in Houston, TX feared the worst and got the bad news exactly what we knew. Fast forward to now just finished transplant evaluation and endo and colonoscopy. Now facing colon resection but first gottta figure out the ascites then transplant. No cancer thank the good lord have a great team of doctors and I am praying I get approved for transplant to save my life and get me back to my family and the things I love. Since first visits energy has improved have gained some muscle and a little weight with good nutrition. Sure there is so much more so if you want to know just ask, I feel like being very open with what’s going on helps.
Thanks for sharing your story and welcome to the forum. I’m glad you got back on track and are now seeing specialists who can get you ready for eventual transplant. You have made the right decision and I hope all goes well. We are here for you along this journey so if you have any questions please chime in any time. I always give at least this piece of advice to new forum members, when it’s time for an ERCP procedure, make sure you insist that it is an advanced endoscopist tied with the transplant hospital you are going through, not a new resident, not a student doctor, not a tech, but this has to be someone that does these procedures day in and day out. If not, you are very susceptible to pancreatitis which can land you in the hospital. Just a word of warning to the wise.
Again, a warm welcome and please keep in touch.
PSC 2011 / Liver Transplant 2015
I do hope you are not being too hard on yourself. I do understand how our “norms” can vary over time and how we can accept “less” than as it become our new norm. I’ve done that with pain. Then when I finally got back surgery in 2010 I’m like why’d I wait so long? The flip side, only one doc would operate. All of those in a hospital Network or Group? - I was still too active and strong. Luckily I found a fantastic spine surgeon who went in, did the job and then some as he was in private practice. No major network surgeon would operate.
My point, sometimes we are not given the best advice even by those that we would expect it from.
All that really matters now is focusing forward and learning from our past actions that we have learned may not have been in our best interest. Story of my life… and I think many of our lives You are taking care of business now and drawing in your team and support - I’m impressed! And in some ways by not living fully present to your PSC, you may be blessed too as I’m not sure this disease cares how “aware” we are of it as it will do as it chooses regardless - I am a pretty darn healthy 53 year old and my PSC diagnosis in Jan 2018 was a complete shock. The hardest part was and still is - sometimes we don’t control our futures or destinies and and I was not raised as such. I was raised, we do everything right and we get to enjoy the fruits of our labor. I no longer believe this. I am working hard myself on living in the “moment” versus feeling like my life and freedom’s have been cruelly stolen.
You’ve had a wonderful past, an awesome family and now you are readying for your next window of Life. You are young and healthy and motivated. The perfect candidate to knock this outta da park.
I’ll be watching for you here. I loved your honesty and ability to look inward. With lots of support heading your way - Peace, Light and Love to you and your beautiful family!
I’m sorry for your troubles. I just finished my Transplant evaluation last week and was approved by the board. Have a few more things to check off, including another endo and colonoscopy. You sound like a strong guy with a great support situation and I’ll bet that your approval will be quick and painless.
Don’t beat yourself up over the past. Just gotta kill it going forward. You can do it! You clearly have a lot to live for.
Hang in there pard. Let us know how you’re progressing.
From a fellow born Texan, (though I got the hell out of there 30 years ago)