Infection

Symptoms & Treatment
1

I’m looking for some help.

I had a transplant (tx) June 2021 and for all intents and purposes the last three+ years have been a nothing burger. I’m healthy, gaining weight (which I lost a ton of before transplant) and feel good.

Friday (3/14), we had a dinner party at my house and I felt just fine, in fact, better than fine.. it was a fun event around 9pm everyone left (we ate lasagna in case anyone is wondering). Around 9:30pm, I laid down on the couch to watch TV with the wife. I fell asleep and woke up around 10:30pm shivering and in pain (body pain, fever, chills, etc). I thought, well maybe something didn’t agree with me, and went to sleep it off.. well, that wasn’t a good idea and I suffered the entire night until my wife found me around 7am completely delirious, completely out of it and writhing on my office couch (my wife thought I was having a stroke). She called 911, ambulence took me to the ER and after a battery of tests there I was diagnosed with a severe blood infection (ultimately determined to be klebsiella pneumoniae). My vitals were crashing, it was bad.

The hospital hooked me up to high powered antibiotics (IV Ceftriaxone, IV Vancyo, IV Zosyn). I was there five days and discharged on Thursday (3/20) and I feel better, and I’m doing well with a 2 week antibiotics (Cipro) by mouth course of treatment.

The hospital performed an MRCP and CT PET. The PET was negative and MRCP showed no indication of recurrence of PSC or inflammation specific to bile duct inflammation. In fact, the GI doc went out of his way to let me know that no beading, strictures or any sign of PSC recurrence was active in the MRCP.

My transplant doctor ordered the PET CT, which came back negative. The hospital wanted to do an ERCP, but that procedure was nixed by my transplant surgeon since none of the regular instruments will work on my anatomy (good to know, didn’t know this before) and doing an ERCP could have caused more harm than good.

I left the hospital with NO idea what could have caused this blood infection in the first place.

Here are my questions:

  1. I’ve had three (3) other random "fever, chills, feeling like an infection events (colangitis-like) after transplant. These were not horrible, but they all felt VERY similar. These events were increasingly worse in impact (each time they happened), what I mean is that the first event was very low grade, but the third event took me out for a few days, but I recovered without an ER or hospital visit. This time, I was layed out and was in full blown blood infection (septic) and crashing.
  2. Has anyone experienced these kinds of colangitis events post transplant? and if so, what were they llke?
  3. The general consensus theory was that a bile obstruction or some latent (old) bile in my redone bile structures (post transplant) somehow made it (The GI called it reflux) into my blood stream and caused the infection. I’ve not had any diagnosed bile leaks or any issues with any of my new plumbing (roux en y) post transplant, so it seems odd that a leak would be infrequent and/or happen randomly to cause an infection? I’ve read typically, bile leaks occur shortly after transplant, not 3 years later.
  4. Does this sound silly or possible?
  5. Has anyone experienced a “reflux” of bacteria from the small intestines into the biliary tree and back into the bloodstream?
  6. I’ve also struggled with Crohn’s disease, but this has been in remission for literally 15 years. I have yearly colonoscopies and they show inflammation from time to time, but I’ve been literally symptom free for 15 years.
  7. Could something happen here to cause a blood infection via my colon? Where my crohn’s disease is present?
  8. I don’t think so, but I wanted to ask.
  9. Are un-repaired hernias vulnerable to blood infection? I have two that I’ve had for years due to prednisone use but I haven’t bothered to do anything since they really don’t hurt or bother me, they are annoying yes, but not life altering? Again, I don’t think so, but I wanted to ask.
  10. How does an infection go from zero to hundred in two hours. What bothers me a lot was the speed of this infection and feeling totally normal two hours before feeling like I’m about to die.
  11. Has anyone experienced a severe infection post transplant that moved like the speed of light?
  12. What I mean by speed of light, I was totally fine, upright and active at 8:30pm and by 10:30pm I was in full blown crash mode, thinking I could sleep it off and suffered the entire night before an ambulance trip to the hospital.

Again, I thought I’d post here and see if anyone had any similar experiences post transplant (tx).

To reiterate, I’ve had three (3) separate similar “colangitis” type events post transplant. Each one was similar in that they started with body aches, fever, shills, nausea, etc and eventually resolved themselves without having to visit the hospital. However, each event has gotten progressively worse, the first event was a day, the second event was for a couple of days, the third event was like a week of malaise and general discomfort and this last one nearly killed me and moved from zero to one hundred in like 30 seconds, so the infection velocity was crazy fast. Listen, I get I’m immunocompromised and that I’m at risk for all kinds of nasty stuff, but this one scared the bejesus out of me. It will take a few weeks to get back to normal, that I get, but man, this one really rocked me.

Hoping to get some feedback to understand better what is happening. I will be working with my own doctors at UCSF to sleuth this thing further, but I’ve never been afraid to ask for help. Thanks in advance for any answers.

2

Will,
Hello and thank you for your post.To give a brief answer before I elaborate, YES, I have been where you are presently. I will share a little of my situation to give some perspective first.

I was transplanted in 2015. I went 7 years with pretty much no problems except a few minor adjustments to meds early on. Then in the fall of 2022 the trouble started. I woke up one morning not feeling the best, then by mid day I had chills and fever so went home from work. Throughout the afternoon things got worse with fever hitting 103, the shakes, chills, etc., so we headed to the ER at Duke. I had a full blown infection of my bile ducts. I was in the hospital for a week maybe then after doing all the tests, etc. I was sent home. A few weeks later the problem returned, and returned. Finally they decided to do go in through my side directly into my bile ducts and take look around. They found that my anastamosis had closed up almost so the bile was not draining out causing infection. This started the started a process of inserting a tube and a drain. The infection would return time and time again even with the drain bag so they went up in the size. After 23 recurrences of infection and maxing out the size of the tube they could use, they decided it was time to open me back up and see what was happening. They found that a cyst had grown under the anastamosis that kept forcing the bile duct closed with the pressure of it. That was removed.

Things started to improve for a while then bang, here we go again. After many MRCP’s, CT’s, etc, they determined that my Roux-N-Y was getting reflux that was forcing GI drainage from my small intestines up my bile ducts and reinfecting things. My surgeon thought that if he moved the Roux-n-Y further down that maybe the reflux woudn’t be able to reach the ducts, however that did not solve the issue either. So now we have had 3 major surgeries including the transplant.

I have had some in and outs in the hospital but as of today we are pretty much managing things ok. I started out with 500 mg of Cipro twice a day, at one point was on 750 Cipro but I had a lot of side effects affecting my mood and attitude. Now I am on 250 mg once a day, but have to at times go back up to twice a day. In addition to the Cipro I’ve been on 250 mg of Vancomycin 4 times a day for several years now. I requested the Vanco which has kept the inflammation down in the bile ducts which I believe is a big help.

They may want to go into your bile ducts and make sure there are no strictures which they can repair while they are in there. This is all done through interventional radiology. Just make sure an attending physician who is an expert in the liver to do it. Refuse allowing a resident doctor to do it as they don’t have experience needed from my experience.

Bile duct and blood infections can get real bad, real quick. When I was on IV antibiotics in the hospital the most common drug was IV Zosyn. Each time it was pumping for 4 hours, then 4 hour break and then again 24/7. It is an excellent antibiotic though. I’ve had IV Vanco as well.

I smiled when I thought they might try and ERCP. Someone didn’t read the chart carefully, glad they didn’t try that one.

If you want to talk sometime, private message me and we can exchange information. I live in North Carolina and I noticed you are in California. I hope this helps at least give a little perspective. Feel free to reach out.

Mark Wilson
PSC 2011 / Liver Transplant 2015

3

Thanks Mark, you and I talked before my transplant in 2021, your story sounds a bit dark, but truth is truth. I’m curious why they didn’t see the cyst on the MRCP?

I’m feeling better now, on Cipro, my body hated Zosyn, it gave me god awful headaches, so they switched me to IV Ceftriaxone, which is just a 30m drip, instead of the 4 hours. Anyway, I gaining strength, and I’m still a bit tired. I’m working with UCSF now to get a better idea on what to do next, since I think I have a better understanding on what maybe happened. The doctor in the hospital insisted the MRCP looked great and he saw nothing in terms of strictures, beading on blockages. The PET CT came back totally negative..

The scariest thing was the velocity of this infection, from normal to crash cart in 2 hours.. that was really really really scary.

I’ll let you know what I find out, but for now, I’m gaining strength and feel better.. Tho, it feels like I’m sitting on a time bomb.

Best,

4

one weird question for you, could weight gain be a catalyst for this reflux event? I was 125 lbs as I entered the hospital for transplant, I gained “some” weight post transplant, but I kinda maxxed out at 150 lbs.. stayed there for about 3 years and only recently has my weight gain returned. I’m at 175 holding steady, but anatomy wise, things are a bit tighter around the scar, I’m curious if weight gain could do something or move something or make something worse as a result of gaining weight? Again, I’m not a heavy person, but 175 is totally normal for my size, I’m 6’-1" and until PSC started kicking my butt, I was 180 for the vast majority of my life.

Just thought I’d ask…looking for anything that could be a catalyst.

5

No, I don’t think weight gain has anything to do with it. Unfortunately, I’m around 228 right now. I do have right much scar tissue from all the surgeries in my abdomen.

Have you had A lot of G.I. issues with all this? I still can’t seem to stay out of the bathroom multiple times a day especially on this Cipro, which I’ve been on now for over a year or more.

6

No, not really. I didn’t eat anything for 5 days in the hospital, but I’m back to two meals a day now, very high in protein. Nothing out of the ordinary bathroom wise. In the hospital I was peeing every 15 minutes, but that has slowed to normal.

I ate lasagna the night of the dinner party. I’ve had it before, no issues. I was reading another post on another board where a PSC patient tied it back to overeating and that obstructions somehow made their way up the roux en y and into the bile tree.

I don’t know. It was certainly reassuring that the images came back normal. The doctor went out of his way to indicate no indication of PSC recurrence and it looked great as far as he could see. So, I’m trying not to worry about the worst. However, I do want to understand the why and what precautions I can take in the future? Does that mean I have a 2 week course of cipro on me at all times? Things like this, where I can immediately do something and then get higher help. Or if a procedure is required, do this sooner rather than wait.

What is interventional radiology? Is that a fancy name for an ERCP? I’ve not heard that before and no, UCSF said no procedures to be done by any doctor except UCSF trained transplant doctors. So I know this now.

7

Will,
Yes, I would certainly ask your transplant team for a Rx for Cipro that you can have on hand. When you recognize the tell tale signs of an infection start the antibiotics immediately. And then contact your transplant team immediately for further guidance. Maybe you can get to the hospital sooner than later and get the infection under control before it goes bad again on you.

Interventional radiology is a procedure as in going into your bile ducts with a wire, tube, etc. occurs under live xray. They inject a contrast into the duct that guides the doctor and shows him what’s going on inside the liver ducts. (This same radiology is used for heart caths and stroke caths, etc). This is the ultimate Gold standard to know exactly what’s happening in real time. MRCP’s are great but they don’t compare with this. Of course this is an invasive procedure just as an ERCP was pre-transplant, but a necessary one at times. I had it done so many times that I knew the folks down there on a first name basis. They even gave me the doctor on calls pager number so that if I had an emergency I could go to them directly instead of going through the ER. But everyone’s situation is different so this would be something to discuss with your team.

Mark

8

Will and Mark
I’m really grateful this issue is being addressed here, since I’m experiencing the same symptoms.

Quickly, here’s yhe upshot: Ask your doctor to prescribe a low dose of Ursodiol, which you probably took pre-transplant to make your bile more viscous.

I had a transplant via living donor in Jan. 2024.
I had cholangitis-like symptoms three times within six months. The first time I took the antibiotics I kept on hand pre-transplant. The scond time I called my post-op team. They said it was probably a bug, and that I should stop taking the antibiotics, since I’m still on anit-rejection meds. I told them I was sure it wasn’t a bug.
My third chills/fever/loss-of-strength episode, Feb. 6th, landed me in the hospital when I fainted the next morning. Liver numbers were up somewhat, but not alarming. Creatine was up because I have Stage 4 CKD caused by meds and probably “insult” during my liver transpant. My creatine level seemed unaffected by my chils/fever episodes.
After all the blood work and imaging, and a three-night stay, the releasing doctor was candid when I was discharged. “You’re an enigma.”
They could not make a diognosis.
My hepetologist’s threory now is that some blockage might have evolved at transplant site. Not a PCS recurrance. I had an MRCP last week, with nothing remarkable, but they can never see everything. Phew! She’s now has me on Ursodiol, and my hunch is that it will work. So far so good. If the problem persists, next step would be a surgical scope and possibly a stent. I’m hoping the Usodiol is enough.
So ask your Doctor about that, and all the best.

9

THIS IS Exactly my experience, minus the kidney issue. My creatine was high as well when I entered the hospital on the 14th, but came down to normal range after a couple of days. My electrolytes were in the basement along with my CBC (which is kinda normal for someone who is septic).

I would prefer not to go on anymore meds, but it’s good to know what you are doing. Yes, the doctors explanation feels like a bit of gaslighting and frustrates me, but I’m already in the world of science fiction with a liver transplant and I should not expect to have a completely normal life experience. That said, I would like to understand where the land mines are and your experience sounds just like mine, even the timeline feels similar.

I had my first experience about a year after transplant and it lasted a day, quite literally, I felt fevers, chills, layed down and felt find the next day. The second experience was about a year later and it lasted about three days, but very mild by comparison of this recent experience. The third one hit me hard, but i didn’t head to the hospital, I gutted it out for a week with some left over Bactrim and felt better. This last one nearly killed me and was scary as hell.

Thanks so much for posting this, it’s good to know I’m not dreaming up symptoms and feeling this way because of some mystery.

Can I ask where you got your transplant? I got mine at UCSF under Dr. John Roberts and my wife under Dr. Nancy Asher. I think they are considered some of the best surgeons in the world, and while I was in the hospital this time, Dr Roberts called me directly, which I found really odd but reassuring.

Thanks a bunch for writing this, I feel a bit better, tho you are in the same boat as me, in that we don’t know the why, which I will work hard on trying to understand.

10

Yes, knowing you’re not the only one with symptoms can be reassuring, for sure. Glad I could do that!

I think Ursodiol is actually bile salts, and not toxic in the way that, say, Prograf and Cell Cept are. As one point it was a controversial treatment, but I don’t think that’s the case now.

I don’t think my post-op episodes has been as bad as yours, but my pre-op experience with cholangitis was pretty harrowing, including out-of-your-mind sepsis, Somehow my cholangitis attacks stopped as my cirrhosis worsened.
Then I got out-of-your-mind Hepatic Encephalopathy!
Not fun, and so glad to have gotten through it. I see my current issue as a fairly minor bump in the road. There will be bumps in store for us, but hey, we got new livers!

11

When I started having issues again post transplant they put me back on Ursodiol. It basically to thin the bile to make it flow better. Also the Vancomycin has kept the inflammation down in the ducts which I think is helping in my case. I’m on 1200 mg of Ursodiol at the moment.

12

WQC,
Welcome back. Sorry you had this experience.
To answer your quesitons:

  • Has anyone experienced these kinds of colangitis events post transplant? and if so, what were they llke?

Yes. I have had three. They had similar symptoms, but can differ. One had an instant sensation of exhaustion. About an hour later, chills and a high fever. By the time I got to the urgent care place, my blood pressure was 60/58.

  • The general consensus theory was that a bile obstruction or some latent (old) bile in my redone bile structures (post transplant) somehow made it (The GI called it reflux) into my blood stream and caused the infection. I’ve not had any diagnosed bile leaks or any issues with any of my new plumbing (roux en y) post transplant, so it seems odd that a leak would be infrequent and/or happen randomly to cause an infection? I’ve read typically, bile leaks occur shortly after transplant, not 3 years later.
  • Does this sound silly or possible?

WQC, it is very plausible and the suspected cause of my three bouts of cholangitis; two went septic.

  • Has anyone experienced a “reflux” of bacteria from the small intestines into the biliary tree and back into the bloodstream?

Yes. The docs think that the infection was caused by something coming up the roux tube from the small intestine. When it got into my bloodstream, that caused the sepsis.

  • I’ve also struggled with Crohn’s disease, but this has been in remission for literally 15 years. I have yearly colonoscopies and they show inflammation from time to time, but I’ve been literally symptom free for 15 years.
  • Could something happen here to cause a blood infection via my colon? Where my crohn’s disease is present?

Not qualified to answer this, as I have no experience with Chron’s.

  • Are un-repaired hernias vulnerable to blood infection? I have two that I’ve had for years due to prednisone use but I haven’t bothered to do anything since they really don’t hurt or bother me, they are annoying yes, but not life altering? Again, I don’t think so, but I wanted to ask.

No idea.

  • How does an infection go from zero to hundred in two hours. What bothers me a lot was the speed of this infection and feeling totally normal two hours before feeling like I’m about to die.

The body works in weird ways, like the instant sensation of exhaustion.

  • Has anyone experienced a severe infection post transplant that moved like the speed of light?

The cholangitis/sepsis I have had, with the exception of instant exhaustion, have taken several hours (4-6) to build to a crisis.

After being diagnosed with chronic cholangitis and in an effort to keep me out of the hospital, my doc has given me a two week supply of Cipro to take if I have any symptoms. I had to take them last year when I had symptoms. I kept my transplant coordinator aware of what was happening.

Just listen to your body. Look for the symptoms of exhaustion, chills, high temperature and low blood pressure. Make sure you have a blood pressure monitor at home.

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