Hi, All - And my Dilema

[Guest guest]

To start out with, this is really long, better make sure you have time to read this.

Also, I have attached a more recent image of myself.

"PSC and Me, and How I've Been Wronged"

Hi, people, I haven't written to this list yet, I haven't had much a need to, so I'm just going to start now I guess. Lately I have become very stressed and upset about the way SLU and the doctors I see have been caring for me, treating me, you name it. I just would like to tell my story my side and what I think instead of having 20 different doctors (at least 5 new ones each time) tell me different things about my disease and treatment.

Some of you might already know this but here's a quick timeline of me and my PSC:

July 2000 - noticed itching, yellow eyes

July-End of August - went thru extensive tests to figure out what was wrong with me.

At the end of August, they did my first ERCP which they biopsied the inside of my bile duct or whatever and discovered I had PSC. This is also the first time I ever got so sick as to notice it (besides the itching - I thought that was real bad dry skin or laundry detergent).

I stayed in the hospital for the first time sick after that ERCP, they also put a stent in with that procedure. I believe that they were not able to put a stent in the other main one because it was too clogged, etc.

Ever since then I have had a few more ERCP's, and ever since the first ERCP periodically I would get a bile duct infection and end up in the hospital - even got these infections when on oral antibodies, when I had to goto the hospital I was told that IV antibodies would clear up the infection and that oral couldn't do that.

Ever since that first ERCP I have been on pain medication because I would have a full feeling kind of pain in my side. I've taken percocet when I got out of the hospital, went off for like 2 weeks once then had to goto darvocet, and then recently, Vicodan. Was told the pain was normal because of the disease. (Never had the pain before the ERCP or before I was "told" I had PSC).

Was fine with antibodies, other various meds and pain medication again until 2 weeks ago. Up until that point I generally felt a little tired (less tired if I exercised), and didn't goto work, and the pain meds made me have no pain. I was functioning pretty much OK with the antibodies, stent, and pain meds.

2 weeks ago I started having real dull "liver" pain even with taking the vicodan. As a few times before, I figured I had another bile duct infection, as I had forgotten to take my antibodies occasionally, and was told sometimes while taking oral antibodies, these infections "happen".

Well 2 weeks ago I was resting taking it easy, laying in bed with these periodic bouts of pain, I figured I was comming to the point of infection again, and would probably need to get on IV antibodies for a few days, as I had done before. Well it was late at night, so I had to goto the emergency room. Well apparantly, (I guess like with all hospitals, I don't know) SLU doesn't keep good records, etc (once I was told I never had gotten a prescription to percocet, just told to take some tylenol). So I told them about my history, and of course they X-Rayed me etc etc. They had me stay in the hospital and took some blood, and I believe they told me the liver enzymes were a little bit down, but normal. For the record, I was told when the stent was placed it would need to be replaced every 3 months or so, and it was getting about that time. So they couldn't figure out "why" I was having pain.

When I am in the hospital, my "main" doctor as like to call him hardly sees me, I am seen by the 'fellows' and various (too many in my opinion) other doctors. None of which seem to have my story straight or know exactly what my history has been, so they say things that I have been told are not true by my "main" doctor, and recommend procedures, etc that sometimes don't even need to be done.

Here's the important parts:

So about this pain, well they decided to do an ERCP and check out my stent. They did so, and I was told the stent had slipped down a bit, and that it was taken out, and I was also told that the other "main" bile duct was infected, this being the reason for my recent pain. Note that I was almost "pain free" after they did the ERCP and removed the stent. One of the "fellows" whom I did not particularly agree with in many instances of treating me while on this visit came into my room the day before Thanksgiving and told me he thinks that the pain is caused by an infection in the other bile duct along with stones in it. (the one that never had a stent in it). I had figured my pain was probably a result of this kind of infection, as I have said at the beginning of this mail and several other times. So now they "think" the pain (which by now I was having not much of) is caused by an infection and that "Antibiotics cannot help this kind of infection, they cannot get in there and help it (or some words like that from the doctor). Note that they couldn't get into or thru the duct with an ERCP. So the doctor whom I don't particularly care for comes in my room and tells me he thinks I should go ahead and go through a procedure called a PTC. He explained that they stick a long needle in between my ribs, into the bile duct thats infected and then slide a thin tube into the duct which comes back out thru the needle opening into a tube and a fluid bag which is at my side. The external part comes after the needle is retracted, of course. He said I would wear this bag for a "couple of days" (6 days) and that all of then infection and sludgy bile would drain out into this bag and that on tuesday they would take everything out. Note that my other non-infected bile duct that just had the stent removed was "opened up" and letting bile flow. So I have the procedure done, and some red infected looking bloody fluid and sludge and things I am told are 'stones' come out that day, and for some of the next day. Then for about 4 days, the bile looks normal, and little sludge here and there, but other than that, yellowish (sometimes darker) FLUID. No sludge. The orginial pain I came for, was gone, most likely because of antibiotics and all the sludge/infection they drained out. The pain from the actual procedure and the fact of still having it in is still there because of the tube inside me (very intrusive).

So I go back Tuesday (yesterday) to have the bag and tube that were placed removed. First I had to go through the usual miscommunication about appointment times, etc.I then start telling the person I saw first (an indian nurse) about how I am going to be glad to have the bag taken out, because how much of an inconvience it was, how much it HURT (it actually hurts bad the whole time it is in, I was prescriped to a Fentynal Transdermal Patch which was for pain, and is really strong - I don't eat much, I sleep alot, and haven't had a BM since the procedure). Then back in the radiology prep room I am "explained to" by this Indian (there are lots of indian doctors there) doctor with horrible english language skills and equally horrible artistic ability(well!) what they were planning on doing. From what I got from him, he was telling me that they were going to leave the tube in and possibly take the bag off, but definatly that the tube was going to stay in because I needed it in for my bile to drain. After explaining to him what I understood was going to happen, he continued on with this theory, and I became upset and tried to explain that I was supposed to have everything removed, because the other duct was clear, and was able to drain bile (keep in mind the duct they had to go into with the PTC had been blocked the whole time I've had this disease, it's never been unclogged or stented). He continued on, acting like I did not understand what is wrong with me or what is happening. I became very upset/angry and my eyes welled up and my voice became shaky as what happens when I become upset. He continued on with his talking. To try to clear things up, I asked him if my other bile duct that had previously been stented was open and draining bile. He confirmed that yes it was. So I will still trying to get this all straight in my head and clear him up at the same time. I had to sit down and think for a minute because my head is cloudy from strong pain medication and early morning. I was thinking - "He of course knew that the duct they were working on with the PTC and such had been clogged and I had been operating just fine (just fine being not real sick, able to function) with my stented bile duct, right? He knew this of course - or So I thought. So I just figured he knew this, therefore I could not understand why he was telling me all of this. This of course caused me to become angry/upset and gave me a feeling of helplessness, after all, he knew what he was talking about right? (probably, I figure, but he just doesn't know my case/history).

So the doctor doing the procedure came into the room to pretty much just acknowledge me. I was still confused at this point. So then the Indian Nurse that I thought was mistaken, talked to the doctor doing the procedure (he didn't know my case history well either, this I knew because he said "You've done this before, right" when I spoke of what the nurse had told me about having to inject saline in my tube that I was 'still going to have in'. So therefore I knew he didn't know the case), and gave the radiologist the wrong idea also.

So then as I waited, I tried to get everything straight in my mind, as it is very frustrating when you have the doctor who ordered the PTC telling you one thing, and the nurse/radiology doctor telling you something different that they thought was the truth too. So who's right? The fact that I couldn't tell and hadn't talked to my main hepatologist scared me. These people are doing these things to me, but do they really know why? Sure they can assume it is for one reason, but every case is unique in reasoning, I'm sure. So I decided I would go through with the procedure, and just talked to my main hepatologist wendsday (today) and clear this all up. So today I will see him, but about the procedure.

I went ahead with it, as the radiologist came into the room he looked at my existing bag and said "Oh, it looks great", meaning how clear and fluidy the bile looked, not all infectious and sludgy like it had when the procedure had first been done. He local anistetic`d the area, proceeded to give me fentaynal and versed (keep in mind I still had my patch on) to relax me as I had requested to him. I was awake the whole procedure, awake after 5 of VerSed and 150 fentynal. He got in and then told me he was going to have to replace the tube because it had become 'messed up' so to speak. So he proceeded to do that, and he used a bigger tube this time then last. As he placed the new, bigger tube in it hurt bad - felt like someone was gutting me. He kept telling me 'it will lessen up it will lessen up' as I explained my being in bad pain to him. After about 15 mintues it did enough to not be in "severe" pain but it was still pretty bad. I went into recovery and laid there for a little while because I was kind of drowsy, but it wasn't that long before my mom went to pull the car around to take me home. When I got up to get in the wheelchair, I was still surprised about how the pain was, I could barely barely move without bad pain - but I managed. The first tube I had in didn't hurt nearly as much putting it in, and for the 6 days I had it, caused significant pain -hence the fentynal patch- and during those six days while moving around/walking/sleeping I would get bad pain in that area - and also the right upper side of my neck, my right shoulder and right arm would get real sore - sometimes I felt like I was paralysed in my right side - imagine my reaction to what the doctor told me yesterday about keeping the tube in. I haven't eaten much, been in a lot of pain since yesterday when I left the hospital. Still throwing up sometimes because of the pain patch (its too strong but what am I to do) and not able to do much. Bowels still havent moved since after they put the first one in.

So what it comes down to is this, which is I am sure my doctor(main hepa) will assure me of when I visit him today.

I went into the hospital with a certain pain. Something was done about it (ERCP). They went further and relieved that certain pain completely (PTC) but inflicted more intrusion and pain than before (in other words, the pain I had going in was LESS than what I was in comming out). Tuesday they were supposed to take the tube and everything out. Apparantly lack of communication and/or lack of knowledge about my case within the doctors I saw tuesday(yesterday) STOPPED (delayed I hope) what was to be what would take the pain away, and inflicted more pain/stress.

I have gone on feeling pretty good for the past 3 months with one clear duct, and one clogged up duct. So wouldn't it make sense that if I didn't have the tube/bag at all, since the original pain I even came to the hospital with is gone, that I should be left alone with my one clear bile duct and other lessed clogged uninfected? Before the tube I:

1) Was able to function pretty normally.

2) Wasn't on the Fentanyal (stronger than demerol) patch, therefore I wouldn't get angry for no reason, wouldnt throw up when I ate, would eat, wouldn't sleep 20 hours a day, and wouldn't be depressed like it has caused me to be this past week? (It causes all these thing to me.) All to help (not totally) relieve the pain for what I think was unneccessary measure tuesday? (I felt better with the prehospital pain and vicodan than with the post-hospital pain with a fentaynal patch - at least the vicodan would nearly totally relieve the pre-hospital pain).

Today I am going to tell the doctor that I want this thing totally removed from me ASAP. I don't believe I have any symptoms that call for this. The orginal pain is gone. My other bile duct is clear. My eyes arn't and haven't been yellow for the past 5-6 months, nor have I been itchy.

I believe that I have been involved in a very bad situation - bad because of what the doctors have done when it's totally obvious that what they did was not/IS not needed, and only made things worse for me and my family.

I don't normally speak out against my doctors, nor do I normally claim to be a victim of some wrongdoing. But in this case, I definatley believe STRONGLY that I am, and can say that I want something done about it.

I am 19 years old, they needed to start explaining exactly what they are doing to me when I am in a correct state of mind (not immediatly after a sedation-requiring procedure) , so that I understand it, and stop talking to me like a child and informing other people who's intentions are good, but whose problem this IS NOT. After all, it is my body, and I am smart.

Thanks for reading this novel, writing this has made me feel better, and has helped me explain WHAT I THINK and HOW I FEEL better than any way I have before (i.e. verbally). I know this is long, but thanks.

Perhaps I will even print this out and show it to my doctor to save everyone the confusion.

L.

PSC dx 2000

19 years old