PBC Bleed 7. The Vesuvius Within Me. Crashing in the Same Car.

Good thing I finally got around this month to describing November’s bleeds 5 and 6 in this continuing realtime account of me and my PBC (primary biliary cirrhosis) because now it’s already time to move along to bleed 7.

This was a rather dramatic one, occurring in the wee hours of January 18, 2013. My hemoglobin [hgb] dropped to a personal worst of 6.1, I landed in the ICU and then on the cardiology floor, and required 3 transfusions. A couple of days ago my hgb was 10.5, mildly anemic, but I feel great.

Why the ICU and cardio unit? Because when your hemoglobin drops that low (normal for post-menopausal women = 11.7 to  13.8), it means none of your organs — including your heart — are getting enough oxygen.

What went right this time was that the Asheville ER got a gastroenterologist in to perform an endoscopy immediately, while I was still actively bleeding. Except for my first bleed, in Huntsville the doctors waited 20 hours or more to ‘scope, after drugs and IV fluids had stopped the bleeding.

You can’t be sure of the source of the bleed if you don’t see the bleed.

The Asheville GI theorized what I had this time around was a Cameron’s Erosion. This is erosion in the stomach near the diaphragmatic haitus which is a hole where the esophagus passes into the stomach. The junction should be below the diaphragm, but if you have a hiatal hernia, as I do, then it is above the diaphragm. Usually, hiatal hernias cause no bother other than indigestion. But I have other things going on as a result of the PBC, namely protal hypertension and gastric and esophageal varices. (If you search “cameron’s erosions” + “portal hypertension” + pbc, Google comes up with 75 results, which in the Googleverse is close to zero.)

Now as it happened, I had an endoscopy and visit planned with my hepatologist, Dr. Brendan McGuire, at University of Alabama-Birmingham’s Liver Center for January 22 and 23. So immediately after leaving the hospital on the 21st, we headed south.

Dr. McGuire scoped me Tuesday morning and reported he agreed with the Asheville doctors. He described the area as not unlike a scrape on a kid’s knee that scabs over, but before it gets a chance to heal completely, keeps getting banged up. He didn’t see the site of my first bleed until a few weeks had passed but thinks this one was in its vicinity if not the same place.

So it could be like I keep crashing in the same car, having the same bleed over and again. Since I wasn’t scoped during bleeds 2 through 6, we’ll never know.

Why not fix the hiatal hernia? Too risky: its position, the sites of the erosion and varices, the amount of scar tissue, the thinness of the veins — lots of reasons.

What can be done: double the dose of beta blockers I’m taking to slow heartbeat and of antacids to reduce stomach erosion. And hope that the Vesuvius within me remains dormant.

And what about my primary biliary cirrhosis? I’m doing just fine there, holding fairly stable. It could be years and years before it is bad enough to warrant a transplant. There is something called a MELD score. Normal people’s is zero. Those near dead of liver failure have a score of 40. I’m at 8. Bleeds don’t factor in.

So all I have to do is hope I don’t erupt.

But what we need now is a little relief from the dreariness of reading about me going on about vomiting blood.

I suggest a segue to youtube to view some loveliness: David Bowie singing “Always Crashing in the Same Car.”

You can choose between this one with a particularly happy Bowie, or the GQ Awards show where Bowie wore sandals with socks, or this with a sassy Bowie around 3:18. Or all and more (like here, where he isn’t playing the guitar and seems not to know what to do with his arms).

—————–

PS: Although it doesn’t have much about PBC, this site has a cool diagram of possible diagnoses related to liver trouble.

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PBC, Bleeding Varices. Bleeds 5 and 5.5. Or 6.

Yes, it has been months since I last posted, and, yes, my next-to-last post was on this same topic (Primary Biliary Cirrhosis [PBC], Portal Hypertension, My Perfect Endoscopy Results and My Fourth Bleed) in my continuing series of what my experience with PBC is like. I’m beginning to understand why there aren’t so many real-time chronicles of progressively worsening illnesses.

You may recall that back in early October 2012, I had a routine exploratory endoscopy with perfect results, followed a few days later by a bleed I was told was from a tear in the esophagus which was patched up, and no other problems noted.

Bleed 5.

November 6 I drove from Asheville, NC back to Huntsville, AL to spend the 8th with my son on his 23rd birthday. Before dawn on the 8th I started throwing up and defecating black blood. I really, really did not want to go to the hospital. I didn’t want to ruin my son’s birthday. I had so looked forward to this. But even less did I want him to discover me bled out, so I told him, and he insisted I go to the hospital. We ended up visiting in a room of the same hospital where we were 23 years previously, to the day.

Next day, the 9th, another endoscopy. And behold, the GI discovers two varices needing banding. He also reports that he saw no evidence of the tear I was told was the cause of my October 5 bleed, with repeated emphasis on the word tear. Huntsville GI added he wasn’t impressed with the Asheville GI’s work and that I had a good deal of scar tissue. Because my hemoglobin creeps up to 9 (12 is normal lower limit), I’m not transfused and am released that day.

Bleed 5.5 or 6.

Between November 8 and November 20, I felt worse and worse, like I was practicing being dead. I didn’t read or write or sleep, just stared out the window.

I was with my daughter at her doctor’s on the 20th when I started throwing up blood. Again. This time was a bit different; t some red mixed in there with the black, not quite as much as in past bleeds, but enough so I am on the verge of losing consciousness.

It was two days before Thanksgiving, and I had really, really been looking forward to spending it with my family and new friends.

The GI on call from the practice I visited to schedule October’s exploratory endoscopy paid me a visit in the ER. This made the sixth I’d seen from that practice. I never will believe that I had a spontaneous tear after the exploratory and not a nick, but GI #6 is simply preposterous. He claims that with PBC patients, low hemoglobin, as low as 8, is preferable to the normal 12-14 because less blood means less likelihood of portal hypertension. How stupid does this man think I am? He’s the doctor and I am not so I refrained from telling him his job or the role of oxygenated blood in maintaining life. But man, why don’t we just take a few pints of your blood, drop you to 8, and then let’s discuss quality of life.

Fortunately, a new GI did the next day’s endoscopy. She reported that I didn’t have varices that bled. Instead, the bleeding was caused by ulcerations around the two bands placed by the Huntsville GI (who was, you’ll recall, unimpressed by the Asheville group’s work).

So was this Bleed 5.5 or Bleed 6? It wasn’t a varices bleed. But then again, neither was Bleed 4 (the nick bleed).

There was a good thing about Bleed 5.5 or 6. It got me some blood. My hemoglobin had dipped to 6.7, an all-time personal worst for me.

I thought after the doctor visited Thanksgiving morning that I would be able to go home when the second transfusion ended. But a nurse said it would take 12 hours to wean me off the IV which was delivering a drug to help stop internal bleeding.

Despair. In comes Thanksgiving Day hospital turkey.

However, when the hospitalist came around, she said since this was not a varices bleed, I didn’t need to be on that drug, and so didn’t need to be weaned from it. I could leave.

Joy.

No one can give me an answer beyond bad luck for how in hell two varices burst on November 8 when on October 2 and 5, there were no signs of developing varices.

I’m going to Birmingham to see my hepatologist at UAB in 10 days. It is worth it to me to drive 6 hours for an exploratory endoscopy with someone I trust.

Image

Thanksgiving 2012. My left arm. The other looked about the same.

Primary Biliary Cirrhosis, Portal Hypertension, My Perfect Endoscopy Results and My Fourth Bleed

This post updates my last one, Primary Biliary Cirrhosis, Portal Hypertension, and the Frustration of Knowing There’s No Way of Knowing What I Need to Know, in which I discussed what a relief it was going to be to have an exploratory endoscopy in which either I would discover that I had no varices on the verge of bursting and causing a life-threatening bleed, or if I did have varices, they would be banded and so I would not be at risk — for the time being — of a bleed.

Well, here’s what happened. (Fair warning: This blog isn’t for the weak-stomached today.)

Tuesday morning: endoscopy. Great news! No varices! The GI suggested that maybe I could go a year before the next scope.

Wednesday: Normal life, until evening, when it was a struggle to stay focused enough to watch the debates.

Thursday: I felt really poorly, headache, no energy, unable to focus or think or read, light-headedness. I thought, Gee, it’s a good thing I had the endoscopy Tuesday or else I’d be sure I was starting a bleed.

Friday, 1 am: Urgent need to use the toilet. Expelled globs of old digested black blood, then started throwing up black blood. Simultaneously. Really disgusting. Yelled for help, husband came, call into 911, off I go in the ambulance.

Now, this bleed wasn’t as bad as bleeds one, two, and three because my blood pressure never dropped low enough so that I lost consciousness. I was even able to talk the EMT out of starting an IV in my rolling, uncooperative veins en route to the hospital along winding and bumpy roads.

So what happened? How did I manage to go from A+ to F in the esophageal health department?

Next day the founder and boss of the GI practice did a much slower endoscopy. He found a tear in the esophagus and repaired it with two clips.  He wants to call it a Mallory-Weiss tear, which can follow extreme retching. But the only retching I did was sudden and swift vomiting of blood. In fact, no retching was involved. More like spouting.

He can call it what he wants. There’s no way of ever knowing what caused this tear. But the hospitalist, the nurses, anyone without a vested interest in it being a Mallory-Weiss, is likely to agree with me: I got nicked during the Tuesday morning endoscopy.

It happens. I’m not irate. I know that endoscopy is an invasive procedure and that there are risks. According to the Mayo Clinic, tears happen in “an estimated 3 to 5 of every 10,000 diagnostic upper endoscopies.” It is a good thing that I was conscious, coherent, and creditable, and returned to the same hospital where the exploratory endoscopy had been done. Without a history to work up a diagnosis, this could have been as bad as a burst varices bleed. The mortality rate is 20% when the esophagus is already compromised and because

the diversity of clinical symptoms and signs combined with a lack of individual experience [among doctors] regarding this particular condition may impede rapid identification of this potentially hazardous situation. Accordingly, delayed diagnostic work-up may hinder timely and appropriate treatment with a negative effect on patient outcome.

Well, that’s not real encouraging, is it?

So now what? What do I do in six months’ time?

It is, you see, a classic damned if you do and damned if you don’t, between a rock and a hard place, etc. situation: in trying to eliminate the risk of a burst varices bleed by exploratory endoscopy, I incur the risk of a bleed from the endoscopy itself.

Well, I’ll tell you. I’ll have the scope. But I’ll either have it with the hepatologist at UAB even though that means a five or six hour trip, or maybe I would have it here — but only if the bossman himself does it.

Someone who can do the math can combine these odds, just for fun. Incidence of having PBC in the first place: 2.7/100,00. Incidence of tears in upper endoscopies: 3-5/10,000. Incidence of having PBC and having  a tear following an endoscopy = ???

Primary Biliary Cirrhosis, Portal Hypertension, and the Frustration of Knowing There’s No Way of Knowing What I Need to Know.

I haven’t had a post recently on primary biliary cirrhosis. One feature of this blog is the occasional post on what it is like to have this autoimmune condition.

In the past two years, I had three bleeds as a result of esophageal varices bursting as a result of portal hypertension, itself a result of liver damage caused by damage to the bile ducts.

The first was in August 2010 and I required four transfusions. A year and two weeks later I had my second bleed in August 2011. Then at the beginning of this March, six and a half months later, I had my third. After the second and third bleeds, I had two transfusions.

As you might guess, when August of this year rolled around, I worried. I got through August fine, and September as well, that is, no bleed. Tomorrow I am having an exploratory endoscopy to band any varices that look like they could cause problems.

Twelve hours, and I will have dodged a bullet. Or maybe I will be informed that there was nothing to worry about, that no new varices have developed. But this doesn’t mean varices won’t develop later this month. Or maybe not til November or December. Or maybe never.

This is what I mean by the frustration of knowing there’s no way of knowing what I most need to know.

There’s no predicting these things. You can catch them before they happen with endoscopies — and luck.

Endoscopies aren’t painful, but they require twilight sleep anesthesia, and they are invasive procedures with the usual risks. It just doesn’t make sense to have one every week, or month, or two months. How about every three months? Four? Where to draw the line?

When the varices burst,  there are no warning signs until it is too late to do anything but react. With the third I had an inkling that I had started a bleed when I began to feel faint for no reason. Within 15 minutes I was vomiting blood. When the paramedics arrived, they were hopeful they could get me out the door to the stretcher. It didn’t happen. I stood up, and next thing I knew I was in the ambulance with IVs adding fluids to raise pressure to keep blood going to the organs.

When there is no science, magical thinking takes over. You look for patterns to make sense and end up thinking that if in the past two Augusts you’ve had a bleed, why won’t the pattern continue? If the time elapsed between the first and second was roughly a year, and between the second and third was six months, does that mean the fourth will be six months after the third? — or three months? — or maybe never or maybe there is no pattern.

It’s hard not to think that each day that passes without a bleed simply means you’re one day closer to the next one. Or that every time you don’t feel quite right the next thing to expect will be blood.

And there are places it would be worse to be than others. On a hike in a remote region, alone on the road on a rural highway, up in the air mid-flight. You start to curtail yourself, and let the threat define the parameters of your life.

Whether varices are found tomorrow or not, I’ll be safe from this threat — for a while, anyway. But how long a while?

Third Time Around: PBC, Portal Hypertension, and a Routine Bleed

This one’s for that small audience of folks with primary biliary cirrhosis or other conditions that lead to portal hypertension, which can lead to burst varices usually in the esophagus or stomach, which result in a disgusting and alarming expulsion of fresh red or older black blobs of blood. I’ve received comments from people with PBC that they have looked for information on what these bleeds are really like. I’ve been chronicling my experience with PBC for a couple of years now, so here’s an update on this emerging story.

It happened to me again Sunday. This one wasn’t too bad — just two transfusions and two days in the hospital.

Continue reading “Third Time Around: PBC, Portal Hypertension, and a Routine Bleed”

PBC, Portal Hypertension, and a Bloody Inconvenient Route

My last post before my world changed on August 28 was “Another Bloody August. Mysteries and Muddles. And Hospitalists” about my second sudden gastric bleed in two years and my second misdiagnosis by Huntsville Hospitalists and GIs who insist I simply have bleeding ulcers and refuse to consider portal hypertension, a common complication of liver failure, which is the end result of primary biliary cirrhosis.

If you are new to this blog, you are likely confused. One of my recurring subjects is my life with primary biliary cirrhosis, an autoimmune disorder that causes the bile ducts to self-destruct; the back-up of bile leads to cirrhosis, and cirrhosis to liver failure. At the top of my homepage I recently added a link to a permanent page listing both my postings on this subject and some of the most useful websites I’ve come across. I’ve considered pulling these posts and putting them in their own blog, but for now, they are staying here.

I write about this because it is a rare enough disease that firsthand accounts of living with the illness year after year are hard to come by. The blog format gives a new opportunity to illness diarists, a sort of real-time history of our decline. Readers can extract only the posts tagged PBC and see a sort of sped-up version. Like in my case, my first post about having PBC was two years ago, November 13, 2009,  Varicose Veins in my Esophagus? when I was surprised on my annual visit to Kirklin Clinic to learn I’d have to start having endoscopies to check for esophageal varices. Then I decided it was time to write about this illness because I wasn’t going to be able to ignore it forever.

I was right about that; in August 2010 I had a bleed requiring 4 transfusions, and this year another requiring just 2 transfusions. That one landed me in the ICU, however (two weeks later that creep beat the hell out of my daughter, by the way. He knew I’d been very sick. Prince of a fella, that one. I digress).

This August, the Huntsville Hospital staff GI did an endoscopy 20 hours after the bleed and decided I had ulcers. After all, I had had them last year. Only I hadn’t.  In September I visited another GI in Huntsville who determined that portal hypertension, not bleeding ulcers, was the culprit; he started me on beta blockers. Then in October I took a little break from the domestic violence battles to have another endoscopy by the good man Dr. Brendan McGuire of UAB down at the Kirklin Clinic. He rubberbanded several large varices that could have burst, essentially destroying the vessels.

So yesterday, fresh from the non-trial debacle, it was time to return to Kirklin for my annual November pow-wow and bloodletting with McGuire.

I was worried that I was going to find out that my PBC had advanced since I had had a second portal hypertension burst varices bleed.

But no, my blood chemistry remains stable for a person with PBC.

So why the bleeds?

It’s a mechanical issue, according to Dr. McGuire. The blood wants to get up to the heart and lungs. It wants to go through the liver, but the PBC has blocked its usual routes. It could decide to take stronger, wider vessels in my back, for example, as its detour route. But no, instead my blood has chosen to detour through my stomach and esophagus, taking routes that can’t handle that volume of traffic, stressing vessels not meant to handle such loads. When these routes are stressed to the breaking point, they break, and the endoscopy road crew has to come and clean up the mess and patch up the leaks, About the only thing otherwise that can be done is routine maintenance — that is, endoscopy to check out potential problems and band the varices — block the routes — before they have a chance to burst.

So April I’ll have another endoscopy. And who knows, maybe I won’t have a third consecutive bloody August. That would be nice.

 

Another Bloody August. Mysteries and Muddles. And Hospitalists.

Update: The current (November 2014) hypothesis among my doctors is that whatever they were called in my past posts — Dieulafoy lesions, Cameron’s erosions, or bleeding ulcers — all these bleeds have their source in the portal hypertension which comes from cirrhosis which is caused by my auto immune system attacking my bile ducts, that is, my primary biliary cirrhosis.

Silly me. I look back on my post from earlier this month, An Uneventful Day, Unlike Last August 2, and wonder. There I wrote about how on August 2, 2010, I had an arterial lesion burst where the esophagus meets the stomach, and how nice it was that this August 2, 2011, was so comparatively uneventful.

Little did I know that just 11 days later I’d be back in the ER. Circumstances weren’t quite as dramatic this time around — no ambulance — and I got only 2 transfusions compared to last year’s 4. But in some respects, this episode of vomiting blood was worse.

Why am I inflicting this on you? Actually, I am writing primarily for my readers who like me have primary biliary cirrhosis. There’s more not understood about that disease than is known, and I feel it might prove worthwhile to use the internet as a way to compile and compare histories.

I accept last year’s diagnosis of a Dieulafoy’s lesion, which I attained after consulting my hepatologist, not content with the GI’s conclusion that I had a spurting gastric ulcer. This year the diagnosis is gastric erosion, but I’m not convinced for some of the same reasons I wasn’t last year. While swallowing is a problem some times, once food hits my stomach, all is well — spicier the better.

It seems too weird I can go a year without a stomach-ache while having such a torn up gut that I end up in the ER — too weird considering I am at risk for esophageal varices as a result of portal hypertension as a consequence of PBC.

My intuition tells me the PBC was at least a contributing factor to the Dieulafoy’s lesion, and to this latest event as well.

So this is what I want to know: has anyone else out there with PBC landed in the ER vomiting blood not from varices?

And Now for the Muddles. And Hospitalists.

I keep copies of my medical records. Last year I discovered from the hospitalist’s history that “I got dizzy, and came to the emergency room.” When I complained that this wasn’t an altogether accurate way of describing arriving via ambulance, lights and siren, IV’s in both arms, on O2, my objections were dismissed. This year, I found out that I had been vomiting blood for 2 days when I came to the ER. Wrong again. First, I’m not an idiot. Second, I told the zillion people who had to have the day’s events recounted, that I had vomited twice that afternoon before coming to the ER.

Why can’t these hospitalists listen?

And what, you ask, is a hospitalist anyway? If you are a slow learner like me and it takes you years to realize your [now ex-] general practitioner is too indifferent to bother with hospitalising her own patients, you are stuck with a hospitalist “managing” your case. In my experience this year and last, they are, at best, obstructionists.

This year’s example of foolishness:

In the triage room, I felt really bad, clammy and sweaty. Then I was on a gurney being rushed to the ER trauma room. It wasn’t like fainting, because it wasn’t gradual (when I’ve fainted, usually things turn black but I can still hear what is going on, and then I’m down). I wasn’t out for long, and the ER staff started getting fluids in me as quickly as it could. Seems to me an obvious case of hypovolemic shock. This happens with blood loss.

But the hospitalist saw things differently. He wanted to know about my history of seizures. I don’t have one. What, this has never happened before? Well, yea, once, last year, when I was throwing up golfball-sized clots of blood. Ah ha, so you do have a history of seizures. No I don’t.  How I hate being in no position to resist.

Next thing I knew I was wheeled away and my head was in the damn doughnut — a brain CT, looking for the cause of my “seizures.” CT was normal (duh), so the next day in comes the EEG woman to stick wires on my head. EEG normal — well a bit of excess in the betas, probably related to anxiety (does exasperation count as anxiety?).

This year, 20 hours passed before I had an endoscopy to look for the cause of the bleeding, compared to last year’s 4. Meanwhile, my hematocrit kept falling. Finally, when it hit 7.3, 32 hours after my arrival, I was transfused, compared to pretty much immediately last year.

Was there a connection between the relative slowness of dealing with the problem (blood loss) this year and the the hospitalist’s obsession with seizures?  I don’t expect to ever know the answer. It was, however, most definitely an annoyance I didn’t need.

At Risk for Esophageal Varices and I Nearly Bleed Out from a Gastric Ulcer: How Weird Is That?

Update: The current (November 2014) hypothesis among my doctors is that whatever they were called in my past posts — Dieulafoy lesions, Cameron’s erosions, or bleeding ulcers — all these bleeds have their source in the portal hypertension which comes from cirrhosis which is caused by my auto immune system attacking my bile ducts, that is, my primary biliary cirrhosis.

If you’ve read any of my posts on primary biliary cirrhosis (PBC), you were probably surprised by yesterday’s post that there wasn’t some sort of medical muddle involved. Wonder no longer: there was. It’s just that my emphasis was different so I left it for today.

I’ve written about being at risk for esophageal varices as a result of having PBC. These are swollen veins (like varicose veins), caused by portal hypertension (itself caused by cirrhosis [in the case of PBC — there are others. Click through to a site devoted to patients’ experiences with it]) in the esophagus. Left untreated these could “burst and bleed into the gut.”

But I had an endoscopy just this past January that showed only a trace of varices, and in such cases, 96% of people are trouble-free for at least 1-2 years (then they do another scope).

Of course, that means 4% of people aren’t.

So as soon as I regained consciousness in the ambulance, I alerted the chief EMT to tell the folks in the emergency room about this. And when I got there, I told them myself.

I will refrain from elaborating on how it feels while being transfused to have to repeatedly explain primary biliary cirrhosis and spell Urso Forte [the drug I take for it] to the ER nurses, and later my floor nurse and abdominal ultrasound technician.

However, following the endoscopy performed there in the ER trauma room, the GI who did the procedure reported that I lost enough blood to require four transfusions not because any esophageal varices burst, but because of a “gastric ulcer spurting blood.” He repaired it with three hemostatic clips and put me on pantoprazole.

But how weird is that? To be at risk of burst esophageal varices and have a gastric ulcer burst instead?

I reviewed my endoscopy report (high marks to the GI, who actually gave me a copy of my own medical report!) and found the location of the ulcer to be the cardia. Googled that, and discovered it is right where the esophagus becomes the stomach, and, in fact, for many years there was debate as to which organ it belonged to.

Now then, there is a new kid on the block at the hospital: the hospitalist. This person is sort of in charge of patients who come in through the ER and whose regular doctor doesn’t admit or have any role in their care. Like me. It took me two days to get someone to tell me who was really in charge of my case: the GI who did the procedure, or the hospitalist.

When the hospitalist visited me, I explained about my surprise that my bleed was gastric and not related to portal hypertension [PBC]. I told him that I didn’t have a local GI, but that I was under the care of a hepatologist at the UAB med center.

So the next day he returns, and says, “Good news: you don’t have to have a liver transplant.” I thought yeah, duh, but let him continue. He told me he had set up an appointment with the hepatologist who would do another endoscopy. And I said that sounds great, but what about this report from the GI deeming the cause of the bleed to be a gastric ulcer? The poor guy looked confused. I suggested he go back and have another (an initial) read of  my endoscopy findings.

But the hepatologist’s office and I agree that I should be seen by him. I have so many questions: can a burst esophageal varice adjacent to the cardia be mistaken for a spurting gastric ulcer? Is it really possible to have such an awful gastric ulcer and no abdominal pain? Can portal hypertension cause a gastric ulcer? Will this happen again? And will I have no warning other than feeling steam-rollered before it does?

And just how weird is it, if it was a garden variety gastric ulcer, for this to happen to a person who has to worry about bursting varices?

Stay tuned.

Two Novels and Two Liver Transplants: Peter James’ Dead Tomorrow and Abraham Verghese’s Cutting for Stone

I’ve posted several times about primary biliary cirrhosis, a condition for which the only certain cure is a liver transplant, and recently by chance listened to two audio novels in which liver transplants function as plot devices. How weird is that? In all other ways, Peter James’ Dead Tomorrow and Abraham Verghese’s Cutting for Stone couldn’t be more different.

Continue reading “Two Novels and Two Liver Transplants: Peter James’ Dead Tomorrow and Abraham Verghese’s Cutting for Stone

PBC Re-cap by Comment

I like most things about the WordPress template I use for this blog, but if you read posts on the home page and don’t click through to the page for the individual post, you’ll miss the comments.

And I had such a thorough response to one of my posts, PBC: No Varices for Me. Well, Just a Trace, that I didn’t want you to miss it. You can read all of it here, but I want to respond to some of dsars’ remarks because I think her comment sums up a lot of the points I’ve tried to make  in this series of posts.

Missed Diagnosis:

I can’t stress enough how much we need to doublecheck our own lab reports and to question our doctors. I told you how in 2006, the year I was diagnosed, I went back and got hold  of  as many lab reports as I could from the past  and found that  in April 2001 my alkaline phosphatase was through the roof. Here is dsar’s story:

I, too, could have been properly diagnosed years before I was actually diagnosed. I went to see a dermatologist for darkening patches of skin and itching. I specifically mentioned to the doctor that I realize that some skin conditions are indicative of a more serious disease, and that I wanted to make sure I wasn’t going to die of something. I was diagnosed with having hypo and hyper pigmentation (I lost some pigmentation from scratching so much), and was prescribed an old anti-depressant (pre-SSRIs) that has a side effect of having anti-histamine qualities. The doctor ordered blood tests, as the medication is processed by the liver…and she didn’t even mention whether there were abnormal numbers in the lab results. Years later I went to my family doctor for jaundice.

The Connotations of Cirrhosis:

Seems it’s not just me who’d rather not tell people what I have if it means suffering their assumptions:

 Also, the potential social stigma of having the word “cirrhosis” in the name of the disease and the likelihood of people to associate it with alcohol or drug issues has kept me from sharing with some friends/co-workers about this disease.

Here’s a modest proposal. We can keep PBC; we know what it means. We can tell the rest of the world we have Primary Biliary Condition, that is, PBC. If they are sincerely interested and search for “primary biliary condition,” they are going to reach “primary biliary cirrhosis,” and then the objective authorities can explain to them about the cirrhosis bit.

All of a Sudden, Varices:

Commenter dsars, whose biopsy places her at stage 4, writes:

I’m seeing my second Gastroenterologist, as I recently switched insurances. Having been treated for PBC for about 2 years, endoscopy and varices was never explored with me. All of the sudden, this new doctor is telling me about this big bloody blow up mess, gives me the literature on the procedure, sends me off on my merry way and goes on vacation.

Frankly I don’t understand why as soon as her biopsy indicated stage 4 dsars wasn’t sent for an endoscopy since the varices come, if  they do, with cirrhosis, and the “big bloody blow up mess” is not a surprise you want.

Get Critical About Your Care:

I’m grateful to dsars for having written since it is good to know the work I’ve put into these articles has been of some small use. She concludes:

Reading your blog also made me realize that perhaps I need to connect with some of the support systems available via the internet (I’m willing to bet that nobody else has the same diagnosis in the itty bitty Northern California town I live in).

Yes, dsars, you should visit pbc.org. And there maybe you can find what hepatologists others in your area are using.

I’m willing to bet that you are right: in your “itty bitty” town you are the only pbc-er. And you know what that means? You are your gastroenterologist’s only pbc-er.

I fear you could be hours and hours from San Francisco, Sacramento or Portand. I’m lucky enough to be just a 100 miles from a major university medical center. I was ready to yell at you:  get a hepatologist — but now I’ve stopped myself.  If she could, she would.  I wish I could help.