After coming across this forum and learning about the vancomycin, I’ve been talking with my doctors about it with poor results. The last appointment I had was particularly disheartening, to the point of prompting me to write a letter about my experience. I wanted to share that with you all here today. Any thoughts, comments, questions, etc. would be great.
Below is what I wrote and sent to the patient relations office at University Hospital in London Ontario.
I am writing in regards to my recent consultation with Dr. Teriaky of the liver transplant team at the university hospital on Wednesday Feb. 24.
First I would like to present some context regarding my health history.
I received a liver transplant in January 2012 as a result of my Primary Sclerosing Cholangits (PSC) diagnosis 9 years earlier and have been under the guidance of the transplant team at the university hospital in London Ontario. Over the years our interactions have been quite good, with an occasional tendency towards poor communication during some of our different conversations. Some doctors more so than others.
Two years ago in the spring of 2019 my Alk. Phos. liver enzyme number was becoming elevated and the decision to move forward with an ERCP (after an MRI indicating a narrowing of the native bile duct) to investigate a native bile duct narrowing was made. At this point, the attempt to change my Tacrolimus medication to Sirolimus was also made. This procedure led to an allergic reaction to the Sirolimus medication and a bacterial infection of my native bile duct. I was promptly switched back to Tacrolimus with a course of Prednisone to counter the inflammation resulting from the bacterial cholangitis and had a liver biopsy to diagnose the bacterial cholangitis.
From there I had repeating episodes of cholangitis (with antibiotic (Cipro. + Flagyl) treatment) finally leading to a full constricting of my native bile duct which was diagnosed via another ERCP in November 2019. This led to the decision to proceed with a choledochoduodenostomy to remove the blocked bile duct in January 2020. This surgery led to a number of post surgery complications and extended recovery time. Since then my Alk. Phos. blood work numbers have continued to be significantly elevated.
I was placed on the drug Vedolizumab (Entyvio) in an attempt to bring my active Ulcerative Colitis (UC) under control in hopes that this would also reduce the strain on liver. This has had a noticeable effect on my UC, however my other liver enzyme (AST, ALT, Bilirubin) numbers have become elevated with a slow and steady increase in my bilirubin.
After doing some more research in relation to my situation, I came across some clinical case reports of individuals receiving the antibiotic Vancomycin and this resulting in greatly reduced liver enzyme blood work numbers and reduced severity of symptoms (sometimes complete elimination there of) for both PSC as well as UC. Upon further investigation, I found at least one doctor in the USA who is routinely prescribing Vancomycin for PSC with good results. Along with this, I came to find more than a few anecdotal reports from individuals with PSC and UC who have been benefiting greatly from Vancomycin therapy. Naturally I was intrigued by these findings and curious to know why this had not been presented as a potential option for my situation, given the relative severity and poor response I have been having to current therapies.
I presented my findings and voiced my curiosity to both the liver transplant team (Mostly dealing with Dr. Teriaky) as well as my UC specialist. Both replied, basically saying there was no strong evidence to show that this approach worked and at the end of the day, the Vancomycin would not halt the progression of recurrent PSC, but that they would get together and have a discussion on the subject.
Since then, my bilirubin has continued to increase and my other liver enzyme numbers have been consistently elevated. I had an MRI booked for November 2020 to image my liver, however I delayed this procedure do to the current pandemic situation and my uncertainty regarding the benefit of any findings one way or another and the resulting approach to my treatment. It seems that MRI did not actually get rescheduled at the university hospital and there was some miscommunication, thus resulting in my still not having it done as of Feb. 24 2021.
Regarding the MRI procedure, I had asked the transplant team a number of times what the potential options for treatment were after the MRI, depending on what it showed; either constricting bile ducts or bacterial infection were the two potentials being investigated I was told. I did not receive a clear answer and thus was still not convinced this procedure was right for me at this time, given the relative toxicity levels of the contrast injection and my already compromised digestive system.
During this last consultation I was told that in the event of bacterial infection, the likely approach was to cycle antibiotics; in particular Ciprofloxacin and Flagyl, which are broad spectrum antibiotics with many potentially sever side effects. I have been on these before to treat acute bacterial cholangitis and they do work, however the side effects are quite detrimental and once the course is over, there has been a recurrence of infection in the future, thus limiting the effectiveness of this treatment. The overall potential harm these drugs can do is quite high and is a major factor for me when deciding if I want to proceed with their use.
I had a colonoscopy done in January which diagnosed, active mayo score 2 UC. I had a conversation with my UC specialist during that time again about Vancomycin. She, reiterated the lack of strong evidence for its use, and said she would support me in my decisions, but was not willing to prescribe the drug without the support of the liver team. She also agreed to have a discussion with them regarding the use there of. Understandable.
Since my initial curiosity on the Vancomycin subject was raised, I have had 3 – 4 (I forget exactly) consultations with the transplant team, each time they gave me the same basic answers about the evidence not being strong, but that they would discuss it with the team and my UC specialist. As the time went on and my bilirubin continued to elevate and my symptoms continued to worsen, I continued questioning what the harm in trying this approach was, as there was no other viable approach being offered. I was repeatedly told there was no cure for PSC, that there was a 30% chance of re-occurrence post transplant and that the evidence to support the use of Vancomycin was not available. I was also informed that Vancomycin use would not ultimately affect the progression of PSC.
All of this I acknowledge and have understood since the information was first presented to me, but my interest in the use of Vancomycin as a short term approach to potentially alleviate my symptoms of both PSC and UC, thus reducing the current stress on my liver, colon and body in general has not been treated with the level of respect I have come to expect in communicating with physicians regarding my situation. I have been living with these conditions for quite some time, have been through some relatively major events as a result of my conditions and have continued to take an active part in participating in the decisions being made regarding my treatment; all the while increasing my understanding of my situations through self education and communication with the physicians. As a result, I feel as though I should have earned some level of respect regarding my ability to participate in decisions being made about the approaches to my treatment. This level of respect has certainly been afforded me on many occasions throughout my treatment and I am very thankful for it.
In my opinion, this low level of respect was strongly exhibited during my last consultation on February 24th 2021 with Dr. Teriaky. Upon inquiring again as to the position being taken by the transplant team regarding a Vancomycin trial for my case (as the last consultation was again left with them still going to have a team discussion on the subject). I was told, with an air of frustration at being asked again, that they were not going to prescribe the drug for me. I was made to feel as though I did not understand the evidence regarding the use of Vancomycin at all, and that my interest in the potential benefits was completely unfounded. I felt as though it was made to seem as though I were asking for something highly detrimental and that there was a beneficial, alternate approach to my treatment which I was ignoring. There has been no alternate approach presented, other than the reiteration of the statistics that show 30% of post liver transplant PSC patients have a re-occurrence and that this could end up in another liver transplant.
I then felt as though I was being scolded for not going through with the scheduled MRI which I have been hesitant to undergo, given the (in my opinion) limited benefit of the results in determining the next course of treatment (which I had not be presented with) relative to the toxicity of the contrast injection for my body. Upon further inquiry as to the direction that would be taken with the information potentially obtained from the MRI, I was informed that if the diagnosis returned as bacterial cholangitis, a treatment of cyclical courses of antibiotics (cipro and flagyl) would be administered to control the infections. No clear course of action was indicated if the diagnosis was something else, such as bile duct constriction.
I voiced my concern about the potentially damaging effects of these strong, broad spectrum antibiotics and questioned as to why those would be used and not Vancomycin, which appears to have much fewer side effects, have less potential for severe side effects, is easier for the body to eliminate and is not so broad spectrum. I was informed that many of the bacteria responsible for the acute cholangits would only respond to these (cipro and flagyl) type of antibiotics. This may be the case. It may also not be, given the case reports of Vancomycin success with PSC symptom alleviation.
During further inquiry as to why they would not prescribe me a trial of Vancomycin, I was indirectly accused of patient noncompliance for not going though with the MRI, directly accused of “weaning down” (further noncompliance) my anti-rejection medication (which Dr. Teriaky informed me he was told by another member of the transplant team), while reminding me of his high level of experience, but then being told that decisions were ultimately up to me, as it is my body. All this with an affronting air of arrogance, as if I had no experience, was completely new to my situation and making rash decisions, or demanding completely outlandish approaches be taken with my condition.
I denied any such behaviour and reassured Dr. Teriaky that I greatly appreciate all the expertise, advice, and care that I continually receive from the transplant team and that I have been in full compliance for years.
I informed him that I had had a conversation with the doctor, whom he mentioned told him of the “weaning down” of medications accusation, in the past (over 2 years ago) regarding the potential possibility of “weaning down” the medications at some point in the future, if my enzyme numbers were to stabilize. At that time, I also inquired of that doctor if there were any reported instances of other patients in the past coming off their medications; he said there were a few case reports that he knew of. I never declared my intent to proceed with this action, nor did I act on it. He strongly indicated that this was not a wise approach given my situation and he strongly recommended against it. I acknowledged his points and thanked him for his advice.
From this latest consultation, it seems the decisions which are ultimately up to me in this case are only whether or not I comply with the directive as outlined. My interest in trying an, as of yet unexplored (in my case) avenue of treatment, which has documented clinical reports of success, seems to not be a decision the doctors are willing to “allow” me to make.
I was made to feel as though my inquiries on the subject were completely unfounded, my level of understanding was childish, that I was insulting his intelligence, disregarding his level of education and experience and unappreciative of the service I have received thus far.
I was then made to feel cornered and bullied into agreeing to proceed with an MRI without further serious consideration going to be given to the Vancomycin. I was told once the MRI was complete and if a diagnosis of bacterial cholangitis was reached, a discussion among the transplant team would ensue regarding the administration of cyclical courses of the antibiotics Ciprofloxacin and Flagyl.
That was the end of the consultation and I was left with “a poor taste in my mouth” about how the whole thing had transpired. After giving my self some time to evaluate what had just occurred and to collect me thoughts, I was advised that it might be beneficial to write this letter voicing my disappointment with the way I was treated during this last consultation with Dr. Teriaky. This I have now done.
I wish to suggest that a higher level of decorum be employed in the future when speaking with patients, so as to cultivate the best possible doctor, patient relationships. I feel that this relationship is extremely important in the overall well being of patients and helps to foster a certain level of trust and hope, both of which are invaluable aides to a patient’s mental health and by extension their quality of life.
I also feel strongly that it is important to take into proportional consideration a patients level of engagement with the overseeing of their treatment, that patient’s commitment to educating themselves in relevant areas, as well as the overall experience the patient has with their condition when determining the decisions which ultimately get made regarding the next steps of treatment.
I also feel it would be highly beneficial to the interested and engaged patient to have all avenues of potential treatment openly communicated and discussed, along with the potentials for success, failure and possible side effects, given the available information. My experience has generally been one of having to continually press for more information, which often times is only begrudgingly given, and then more often than not is incomplete, with little to no time for proper discussion there of; even though I have continually exhibited a relatively high level of engagement, education and interest in the workings of my care.
I strongly feel that open, honest, caring communication between a physician and patient is of the utmost importance and in my relatively long relationship with different health care workers, I have experienced the great value this can have to my quality of life. I have also experienced the level of stress and unease poor communication and relations can have.
I once again wish to express my appreciation for all the time and effort which has been afforded me over the years by all the healthcare providers I have had the opportunity to work with. I am deeply grateful for the years of service and the wonderful relationships I have experienced during my time and wish only the best for all those involved in the noble endeavour of seeing to the care of other human beings. May we all grow and learn together from my experience.
Thank you.
Sincerely,
Simon Johnson
