Cirrhosis Support Group

Hi everyone. I thought I'd learned everything to know about NASH and liver cirrhosis during the last few years. Currently, I'm feeling fairly good after second TIPS, MELD is down to 13 right now but I've noticed increasing shortness of breath, blue fingernails and achy muscles. Mentioned to my hepatologist during my regular six month visit and he immediately became concerned and ordered a echo with bubbles. It was a positive test for hepato pulmonary syndrome, no cure except for a liver transplant is my understanding...waiting for further word from the liver transplant team regarding the course of action...doctor on vacation for two weeks so I'm left to worry and imagine all the worst. Does anyone have experience with this unexpected diagnosis?

it is my understanding that this diagnosis can qualify.your meld score be raised to 22 if your oxygen saturation is in certain parameters. A friend of mine on another support group was just diagnosed with this as well. If you private message me I can give you the group and her screen name.

I've been looking into this. I don't have much for symptoms,a little shorter on breath with exertion. I have noticed that on blood tests my monocytes which have been coming down but were still in normal range, have suddenly dropped to 166 well below normal. I've researched this a little and found that this can be the first indication of hepato-pulmonary syndrome. I wonder if your blood tests show the same thing? Thank you.

Peace and Joy

Paul

I need to get out my binder to check all my former lab test results but the recent draw shows a LOW 0.6 of monocytes which seems far below expected range of 4.3 - 13.5% Absolute monocytes are 0 with an expected range of 0.2 - 1.2 K/cumm. Does this lab use a different scale than yours maybe since you mention a 166 result? Is there another name for monocyte I'm missing?

I think our labs use different scales. The normal range is 200-950 cells/uL so at 166 mine are out of range. but expressed as a % they are at 6.4% which seems to be in normal range. I have no idea how that is possible. I'm pretty sure monocytes are an early indicator of HPS so I'll ask the hematologist on thursday, I'll let you know how that goes. Thanks for the information.

Peace and Joy

Paul

Hi cgraupman

Very interesting post. From what I understand Low Monocytes are common in 15% to 20% of patients with Cirrhosis.

It is also common in non liver related portal hypertension, Smoking , patients receiving chemo and those taking corticosteroids.

However in patients with portal hypertension it is almost universal.

The question is are the 15%+ Cirrhosis Patients with low monocytes just waiting for symptoms of Heptopulmonary syndrome or it there a smaller sub group of those that go on to develop HPS.

Monocytes are part of the immune fighting part of the white blood cell. When they are high it usually indicates infection. When monocytes enters a cell they can become macrophages,When they are low it can be because they are being sequestered (Much like the spleen sequesters platelets) in pulmonary microvessels ,Which may actually cause HPS In at least one study a antibiotic call Norfloxan was use to reduce the bacterial contamination in the intestinal tract.Thus reducing the macrophages , Which showed promise in reducing the progression to HPS.

But of course as with all things liver related more research is needed.

I also have low monocytes with sudden drops From 7 to 4.0 to 1.7

OK I went to the Hematologist today, personally my favorite doctor, but my pcp nor the gastro doc. had sent my file over to him. So he asked me a few questions and examined me. Then he sent me for more blood tests, so the nurse asked which arm I wanted to use and I said it didn't matter because I'd be back next week to do the monthly for the platelets etc.. Anyway one of the questions I asked the hematologist was whether or not low monocytes were an indicator of Hepato-Pulmonary syndrome, and he said he didn't that much about that condition. The gastro said that the hematologist would know, the hematologist said the hepatologist would know. Maybe I can start seeing a hepatologist on a regular basis out of this. Otherwise I'll just keep my eye out for shortness of breath and blue fingernails. I'll post here again when I get more information.

Peace and Joy

Paul

Paul

I'm sorry you didn't get any real answers. I know it's frustrating.

I would think a pulmonologist would have more answers than a hematologist.

But that would require you to see a new Dr. If you do call ahead and ask if the Dr deals with Hepto pulmonary patients it might save you a trip.

Do let us know what you find out.

Gail

Not quite the same but when they thought Jim might be developing Hepato Renal syndrome, a nephrologist would be consulted. I would assume the same thing...pulmonologist is required.

I'm pretty sure they don't think I'm very far along yet and maybe not really headed that way at all. Remember I start worrying about these things way before any of the doctors do, much like the liver disease itself.

Paul