Greetings all,
I have just had my first experience with esophageal bleeding. I ended up in the ER, then in the hospital for a few days, for endoscopy and tying off the varices that looked like they might have started bleeding.
I’m wondering if anyone else has had problems with such internal bleeding and what you found as the best way to manage it.
Warmly,
Steven
Hi Steven -
Sorry you went through this. It’s another step of the progress of this disease, and no fun. Fun isn’t a big part of PSC, is it?
My doctor did an endoscopy as part of the standard routine for cirrhosis, found varices and put in two bands. He prescribed a beta blocker for help with portal hypertension, but it made me dizzy. After discussion we decided that rather than another pill (I already take 12 daily and 2 more weekly,) he would routinely check me every three months for more varices, Next time he banded five more. I still ended up in the hospital, after two endoscopies. There was no active bleeding, but apparently there had been some earlier; my main symptom was black stools (so scary!) I was feeling faint too, and was found to be anemic, so I was given a unit of blood. Since then I have been banded twice more - I have more than twelve, I think, and can have more as needed.
To sum up - I’d rather have the procedure than a take meds with side effects. It’s a really good thing that you were treated when you were, because that kind of bleeding is very dangerous.
Good luck! Looks like you’ve got things under control.
Thank you for sharing, that is helpful. Yes, I’m glad I went in as well. The plan now is another re-banding (or several until its cleared up), continued monitoring. The GI doc used the term “Meld Score Purgatory”. Too healthy of a liver to be on a transplant list (my MELD is like 8), but then having all sorts of other issues pop up.
Hello! I also am currently experiencing the varices veins in my esophagus. I was told by my G.I. and liver specialist that it is caused by complications of my P.S.C. liver disease and they have me have procedures for banding and taking a small dose of carvedilol.
Aaron
MELD Score Purgatory is the perfect term!
I was just entered onto the transplant list, but with a MELD score of 13 (sometimes 14) I will have to wait a while. My cirrhosis symptoms have landed me in the hospital twice within a year, but I’m judged too healthy in other ways.
It’s been explained to me that MELD is not a good way to handle PSC patients, who as you say have a different variety of symptoms. There are docs who are working to change how PSC transplant candidates are handled. I hope they make headway soon!
Hoping it all goes well with your procedures.
Yes, exactly. Hope they do make headway soon. In other parts of the world, live donor transplants are more common. Just wondering those systems work.
A key point to keep in mind - in addition to MELD score pergatory - PSC can take you downhill unexpectedly and very fast. I was functional and at work, and told by Doctors I’m no where near ready for the waiting list - and then ascites, comatose from amonia poisening, toxic shock, hyponatremia (deathly low sodium), loss of half my body weight, finally kidney failure and a 3 days to live prediction, emergency live doner liver transplant - all within 3 months. Perhaps also, URSO tends to unfairly minimize the MELD number (I think) I don’t remember mine ever got high. Also don’t underestimate the varices bleeds, that represent a risk while on MELD score pergatory. I was lucky to get through mine without knowing the danger, but an acquantence of mine ,waiting for liver transplant for a non-psc liver disease just died last week from an esophageal varices bleed that the hospital could not stop. Sorry about this, I am torn between words of encouragement and ‘hang in there’ stuff, and the need to shout warnings on behalf of the people that don’t make it to do so. Harang your doctors to give a ’ PSC factor’ in the MELD score. Look that up online, print and wave the literature in their face (politely/professionally), educate your medical team, don’t assume they are on top of it.
RJM
Hi RJM,
Yes, I’m aware of the possibility of going downhill quickly or falling off the cliff. Over the past six months I’ve had more issues than for the past several years. I’ve been exploring live donor transplant ideas, as they have become more common.
thanks for the words of caution.
Steven
Hi!
I can share my experience - psc for 4 years, doing all the routine monitoring knew I had massive hepatosplenomegaly (sign of portal hypertension which causes the varices) and was just about due for an endoscopy when I coughed up blood at work (I’m a doctor). Eventually my colleague convinced me to go downstairs to the ER and I had bled 5 units of blood into my stomach. This became the main factor pushing toward scheduling a live donor transplant from my brother (coming up this fall) despite a meld of only 14-15.
I’m on propranolol AND got endoscopies every 6 weeks for about 6 months until they finally had banded them all down. The beta blocker is still important if you can tolerate it - varices can pop back up quickly and have a very high morbidity/mortality.
I’m happy to answer any questions about my experience you would find helpful and informally/generically answer medical questions as well (obviously best option is to ask your doctor, but I know sometimes it’s hard to get through).
I was in this round robin hell as well, and we went the living donor route as quickly as we could.
I had two doctors arguing over “severity” as I laid in a hospital bed. I finally told one, I’ve made a decision and I’m going this way, which was transplant. If I waited probably another month to make that decision, I would be dead.
Press them, get the data, get the information, take it seriously and listen to your body, it will tell you the truth. Also, be aggressive in advocation and getting the process done. Go to the appointments, take all the tests, listen to the changes you need to make, food, exercise, medications and most importantly your body.
Anyway, god speed.
To give you some context, I was diagnosed with Autoimmune Hep in 1998, UC in 2004, PSC overlap in 2010 and then transplant in 2021 (living donor). From 2018-2021 was a nightmare and the last six months were, just horrid. Like RJM, I worked until the very end, and it was practically the only thing I could do and sleep.
Thanks so much for the information. That must have been unsettling to start coughing up blood. Yes I’m on Nadolol, small dose. Just started yesterday. What do you mean by “if you can tolerate it”?
I’ve an appointment with Vanderbilt in about two and am going to explore with them the potential for a live donor transplant. Glad you have yours scheduled and hoping it goes well for you.
Thanks so much!
Hi WQC,
Thanks for taking the time to share. I’m going to be exploring the live donor route as well, with my doctor and Vanderbilt in a couple of weeks. Part of the issue is starting to feel better, and then thinking, “why go through the transplant when I’m fine”.
Diagnosed in 2005, and except for one major bout of infection about 5 years ago, and the recent issues, I’ve been pretty good. but always in the back of the mind is that potential up coming cliff to fall of off.
By tolerate it I mean if your blood pressure doesn’t go too low and you don’t have side effects (dizziness, e.g.) that are bad enough to make you stop it.
To echo what someone below me wrote — I’m really struggling with getting a transplant (and putting my brother at risk as a donor) when most of my symptoms are mild (fatigue, messed up sleep cycle, leg swelling, some breast tissue growth). I don’t want to go through a transplant and then feel worse than I did before it … and have all the risks of infections and bile leaks, etc that come with it.
But the varices and now a small gall bladder polyp, even if not causing me problems most of the time, are big enough risks that it’s time
Absolutely. I will say this, the best I felt in months was the day before my admittance to the hospital for transplant, talk about irony. I walked into my wife’s hospital room and told her “it’s ok if you don’t want to do this, this is the ask of a lifetime doing what you are about to do…” it could have been adrenaline the last few days, since adrenaline is a hell of a drug, but I did feel great and I thought, heck, why do this when I feel good.
Problem was I was dying and my liver and everything else was grinding to a hard stop. I’m 100% certain it was the right decision.
If I read your post correctly, your transplant was recent, is that right? How are you doing now?
Yes, 6/29. I am doing amazingly well. One minor complication post surgery with rejection, 3 days from surgery that was resolved with a ton of steroids. Left the hospital after 13 days and came home. Little tired, but numbers are all trending in the right direction, LFTs are almost normal and bilirubin down to 1.5 from 15 pre surgery. So, thanks be to the big man upstairs and great doctors. But it’s a long haul and I figure 3 months is minimum for healing. So month one was good, hoping it continues and I can live out my life uneventfully.