twoforjoy

Thanks for all of the support and replies.

We haven’t really gotten anywhere yet. The new PCP my husband saw was unable to refer him to the UM center because he’s contractually obligated to only provide in-system referrals. Even though, as he admitted, there’s nobody in-system who he felt comfortable referring my husband to. But, we were able to get an insurance override to change PCPs faster than normal (there’s usually a 30-day waiting period) and got my husband an appointment to see a UM PCP next Thursday. In the meantime the UM liver tumor clinic is receiving all of his information, so hopefully they’ll be able to get him in quickly.

I feel very positive that they don’t just want copies of his paper records, but have requested the actual images from all of his scans and the tissue samples from the ERCP. I’m hoping that, since they’ve seen this before, they might be able to diagnose based on what’s already been done. But we do feel like the U of M clinic is the best way for us to go right now, and I’m feeling relieved that they’re going to be taking over his diagnosis and care.

Thank you!

I’m already feeling completely worn out. DH is just feeling crappy much of the time. He has no energy. So I feel like I’ve now got all of the childcare responsibilities on me, all of the household responsibilities, plus I’m taking are of DH and doing most of the phone calls/research for his medical care. It’s like I suddenly have three full-time jobs.

Thankfully the babies are too little to really get anything that’s going on, but I worry about my oldest. He is very smart and very sensitive. We’re not telling him much at this point, but he knows that his dad is sick and I’m sure he sees we’re worried. I just feel so badly for them. I mean, as unfair as it seems to me for DH to be going through all this, it seems so much more unfair that our kids have to to through it. It’s just a lot to deal with for such little people.

We’re fortunate that DH’s work is being awesome–they are fine with him working from home as he’s able–and, even though we have no family nearby, we live in a great community with wonderful friends. When we went to the appointment where they were supposed to be able to tell us if it was cancer, we had three families hanging out at our house watching our kids and waiting so they’d be there when we got back. So I can’t really complain. But I am kind of missing the days when I could lay down for an afternoon nap!

Pamela,

Thanks for the U-M recommendation. We were actually wondering about their liver tumor clinic, but didn’t know anybody who’s ever gone there. I actually had my first child at the U of M hospital and didn’t have a great experience there, but I guess childbirth and bile duct tumors are two different animals. We’re only about 40 minutes from Ann Arbor–much closer than Rochester!

We’ll mention that to the new GP. DH has been seeing people at Karmanos, but we’re not really thrilled with them right now. The surgeon he’s talked to has never seen anybody with both PSC and CC (which surprised us, given the high incidence of CC in PSC patients) and that didn’t really fill us with much confidence.

I just wanted to say, too, that I appreciate the advice about not dwelling on the past. (Which is not to say that, if things are bad and could have been prevented by a more timely diagnosis, we won’t be considering a lawsuit. There’s been, at this point, at least 4 weeks of delay due to tests that were unordered, test results that were never sent, and/or test results that were just ignored for a week or so.)

But a lot of my anxiety about this situation is coming out as anger. I’m mad at the doctors. I’m mad at my in-laws for not being here to help us out (DH is still quite sick, and I’m worn out from caring for him and the three kids). I’m mad at the universe. I’m just mad about not having answers and mad about the answers we might get.

The good news, we think, is that the surgical oncologist seemed to think nothing had spread outside his common bile duct. We’re not sure how he could have such a large stricture there with so many symptoms without anything having spread, but we’re hoping it’s true. It also gives us some hope that maybe it’s benign, since while a 3cm benign stricture is pretty rare, it would also be pretty rare, from what we’ve read, to have a 3cm malignant stricture that hasn’t spread anywhere. So, whatever he’s got, it’s rare.

I was so tempted to buy a ticket for the $640 million lotto. I figured that all of this happening to my husband is so statistically improbable that maybe anything could happen and weird luck could work *in* our favor, too.

Thanks, Kathy. Yes, we’ve just started getting copies of all of his records and keeping them in a binder. We have been getting little to no meaningful communication from his doctors, and most of what we know is from his records.

His total bilirubin was about 16 when he was first in the ER. It was up to about 23 at his second ER visit. It went down to about 15 again after the stent was put in (they did do a stent), but then shot up to 22 a few days later. Last time we saw the numbers, it was 10.3, which was the lowest it’s been since all this started.

I’m still frustrated, knowing what I know now, that they sent him home from the ER that first time with a viral hepatitis diagnosis given his bilirubin levels, that his bloodwork was pretty much a classic obstructive profile, and that he had no known risk factors for Hep A, B, or C. I’ll be honest and say that I think he received substandard care because of where he was seen. We live in Detroit, they deal with a population that engages in many high-risk behaviors, Hep B infections rates are pretty high here, and we think they probably just assumed he had Hep B based on that, and overlooked a number of signs that something else was going on.

He’s actually in the process of getting a new PCP. Before all this started, he hadn’t seen a doctor in 8 years. He was assigned to a clinic at the ER, and we are very, very unhappy with the care he got here. At his first visit with the doctor there, the GP basically thought nothing of the fact that he’d lost 25 pounds in a month, was yellow, and had a bilirubin count over 15. He was just concerned that his cholesterol level was high and sat there discussing the pros and cons of cholesterol meds versus diet chances with my husband for about half an hour. My husband was there alone, and he’s not as direct as I am; I would have asked why the hell he was talking about cutting red meat out of his diet when my husband, at that point, could eat hardly anything at all. And the GI doc is really no better, and the resident who was working with him came right out and told us (off the record) that we should switch to somebody else.

So my husband is meeting with a new PCP, recommended by a colleague within the other big medical system in our city, on Wednesday. He’s going to explain the whole story, try to get a referral to one of two very good liver doctors we’ve had recommended to us in the city, and maybe get a recommendation to Mayo. We’d just like to get a move on things. (I’d also like for them to confirm the PSC diagnosis, finally, because once that happens my husband can do things like get a case manager for our insurance to deal with all of the paperwork we’ve been dealing with and start thinking about things like medical leave or disability.)

I guess I’m just surprised they haven’t done more to figure this out. As far as I can tell–I haven’t seen all the bloodwork yet, so I don’t know–they didn’t run a CA-19-9 until his appointment with the oncologist (I don’t know the results). If they’d been considering cancer as a strong possibility, which it sounds like they had, why hadn’t they done more?