Liver Appointment at Fairfax Hospital

Yesterday, Mike and I had our scheduled appointment with the Center for Liver Diseases at Inova Fairfax Hospital to discuss a repeat liver biopsy.  As I’m sure you recall from our last post, Duke’s Dr. Berg felt that a repeat was in order, because the information obtained from the first biopsy at Duke (elevated pressures) was not consistent with the liver function tests, ultrasound, and CT results.  From our understanding, yesterday’s appointment was to be a formality, as most doctors want to meet their patients before putting them through any procedure.

As we were discussing a possible biopsy with the physician’s assistant, we learned that Dr. Younossi – vice president of research and executive director of the center – was pondering the necessity of another biopsy.  The PA explained that Fairfax wanted to obtain the slides taken from the biopsy at Duke and have their “world-renowned” pathologist and researcher read the slides to determine if they were interpreted correctly.  If the slides were read in error, then a biopsy may not need to be performed.

Dr. Younossi then met with us to answer any questions we had and to discuss what the elevated pressures in the first biopsy could possibly mean.  He stated that the elevated pressures may be due to three possible causes:  Portal hypertension (an increase in the pressure within the portal vein (the vein that carries blood from the digestive organs to the liver)), which would indicate cirrhosis; Cystic fibrosis induced liver disease (presenting with elevated pressures with no cirrhosis); or An incorrect reading of the biopsy slides. 

Obviously, we are holding out hope that the slides were read incorrectly and that a repeat biopsy will not be necessary.  At this point, however, we’ve learned to expect the unexpected, regardless of what that may be.  Unfortunately, we won’t know anything further for another 2-3 weeks and the waiting begins again.

 

Liver Biopsy Appointment Scheduled

We got some more information about the request for a new liver biopsy from Dr. Carl Berg.  Here’s what Cindy sent us last week:

“Carl is hopeful she’s not going to need a liver transplant based on her normal coagulation studies, platelets, Liver Function Tests and CT scan. However, her liver biopsy is worrisome, based both on pathology and the gradient numbers (note from Cindy: “gradient numbers” reflect pressures inside the liver. Anya’s are high). He doesn’t fully believe the gradient numbers and wants her to undergo a repeat transjugular liver bx with wedge pressure measurements at inova.”

Basically, three of the four tests (coagulation studies & platelets, LFTs, CT Scan) came back mostly normal.  One test (liver biopsy), did not.

When Anya had her first liver biopsy at Duke almost two months ago, they were supposed to go through the big vein in her neck (transjugular), but they couldn’t do it due to one reason or another, so they ended up either going through her pelvic area or her abdomen.  We’re not really sure which one, since there were three different noticeable entry points on her.  Anyways, the liver biopsy test showed irregular “gradient numbers”, which were of concern to Dr. Berg.

Dr. Berg asked us to come back down to Duke to see him on April 16th.  He ordered a CT Scan to get some more clues.  The CT Scan came back mostly normal.  Here were the findings:

  1. No significant morphologic findings of cirrhosis and no definite suspicious liver lesions seen.
  2. No findings of portal hypertension.
  3. Prior bilateral lung transplantation with groundglass opacities and areas of bronchiectasis partially visualized at the lung bases.

The only thing of concern in the CT Scan was:

There is a questionable 3 mm subtle focus of hyperenhancement within the inferior liver (series 5, image 32) seen on the arterial phase images only. 

Ultimately, based on all of the clues, Dr. Berg doesn’t fully believe the first liver biopsy, but it doesn’t mean that the test results are not accurate, which is why he ordered another one.

Dr. Berg made a call to Fairfax iNova and scheduled an appointment with their liver team for us.  Our appointment is next week.  We’re hopeful that they will schedule the liver biopsy shortly after the appointment.  And we’re also hopeful that they gradient numbers will be better than the first one.

On a better note, Anya seems to be feeling much better now than she has in the past several months.  She’s even been able to gain a little bit of weight.  I think the pulmonary rehab (3 days a week) has really helped her get stronger and feel better.  She still has a little bit of a cough that she can’t seem to get rid of, but it hasn’t gotten any worse, which is a good thing.

Anya told me that she walked a little over 1300 ft in 6 minutes at pulmonary rehab last week and only on 4 liters of oxygen.  At Duke, two months ago, she walked a little over 1100 ft in 6 minutes with 8 liters of oxygen, so it’s definitely an improvement.  Unfortunately, her pulmonary rehab stint ends next week.  I’m not sure if it’s an insurance thing or a Fairfax hospital thing, but the 9-week program ends, and apparently, it cannot be renewed.

With that said, Anya’s gonna try to keep the rehab going at home.  We’re working on getting a treadmill now.  Luckily, my parents have one sitting at their house that we can borrow.  I might even put our chubby dog, Remy, on it. 🙂

Who me?

Duke Finally Called

After waiting all day, and barely getting any sleep the night before, Duke finally called around 7:15pm tonight.  Talking about last minute.  Dr. Berg, the liver specialist, was the one who called.

It’s hard to say what they’re really thinking, but Dr. Berg wants Anya to get another liver biopsy as soon as possible.  Contrary to what our transplant coordinator told us last week, he said that the CT scan of her liver two weeks ago wasn’t as bad as they initially thought and it’s possible that Anya may not need the liver transplant.  He said that there were 3 good test results on the liver and 1 bad one, but it may just be a result of CF related liver disease…whatever that means.  (Is CF related liver disease different than regular cirrhosis of the liver???)

I’m not quite sure what to think about this.  I have so many questions.  Not having to transplant the liver really changes everything (for the better), so the fact that it’s back on the table now is really good news, but what changed in two weeks?  And why the need for another liver biopsy when one was already performed about 5 weeks ago?  I guess they want to see if there is any improvement with the biopsy, but what if there is no improvement, then are we back to square one?  If there is improvement, then will it be definitive enough to say that a liver transplant is not needed?

It’s pretty frustrating waiting for the unknown, but in the end, I’m sure that the Duke team is just trying to explore all options possible…leave no leaf unturned.  I really do trust that they are the best at what they do, and I also trust that they’ll do whatever they think is best for Anya based on all of this data that they’re gathering.  That’s really all that we can hope for.

Anyways, the plan now is to get a liver biopsy at Fairfax hospital asap, then wait for Dr. Berg and crew to analyze the results.  Thankfully, Dr. Berg is going to make the call to Fairfax hospital to setup the liver biopsy, which should help with the waiting time.  He said that we should hear something within a week after performing the liver biopsy.

Again, we find ourselves twiddling our thumbs; unsure of what lies ahead.  Overall though, I would say that today’s news was welcome news.  I still have a lot of questions, but hopefully they’ll be answered with this upcoming liver biopsy… to be continued…