Consulting with Hematology before and after liver transplant

Posted by katebw @katebw, Aug 21, 2023

Before my liver transplant nearly 2 years ago when I was at one of my worst moments in the hospital, I was referred to Hematology to assess why I had so many fevers of unknown cause and they found all sorts of blood problems. Since then I’ve followed up with more lab work and appointments and I find it completely confusing because it is so technical. My liver team didn’t “order” these follow ups and doesn’t seem that interested but my PCP is. I have a general question- has anyone post liver transplant been followed by hematology? If so, why and how does it affect your care? Thanks.

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Hi @katebw 😊
I always love to see your name pop up! As you know, I am a kidney transplant so I can't help on that end. But it sounds like the blood markers that Hematology are monitoring, may be unrelated to to the liver if your liver team is uninterested in the results. What are the Hematology concerns that you are being tested for? Is the concern autoimmune markers, platelets, WBC, RBC, something like that?

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@hello1234 it’s nice to hear from you! It seems like my liver team is increasingly narrowing their focus and leaving a lot to my local providers (I live 2 hours away from my transplant team). At some point I think I will have to request that hematology consults with my liver team if there is treatment recommended.

Hematology is looking at iron related issues such as iron stores which I’ve had an over abundance of. Also my platelets used to be very low, now they’re normal but low normal. All of this is presumed to stem from my original liver disease as I have no other risk factors. Like I said I struggle to grasp it all and I’m usually able to comprehend better. Hematology is hoping this will resolve but we’re not there yet. Just looking to see if anyone had encountered this.

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Good morning from Canada
I've been seeing a hematologist since my diagnosis 12 years ago and post transplant. I continue to see her as they are monitoring for blood cancers and bone marrow issues. A result on my last blood draw shows an improvement of the white, red blood cells and platelets. Showing my bone marrow is doing it's job. My liver journey has not been an easy one in any form of your imagination. And I couldn't have made it without any of my doctors. Maybe this helps or maybe not. God bless

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@footballmum

Good morning from Canada
I've been seeing a hematologist since my diagnosis 12 years ago and post transplant. I continue to see her as they are monitoring for blood cancers and bone marrow issues. A result on my last blood draw shows an improvement of the white, red blood cells and platelets. Showing my bone marrow is doing it's job. My liver journey has not been an easy one in any form of your imagination. And I couldn't have made it without any of my doctors. Maybe this helps or maybe not. God bless

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@footballmum, I’m confident that @katebw will appreciate your reply when she sees it.

For my benefit, can you share a bit more? Your liver transplant (2? years ago) was because of primary biliary cholangitis, correct? Was this what led to your being referred to a hematologist 12 years ago? What are the indicators that keep you under surveillance for bone marrow issues or blood cancers?

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Good morning
I was diagnosed with primary biliary cholangas formerly known as primary biliary cirrhosis approximately 12 years ago. My diagnosis I was already stage 2 advancing to stage 3 but I was semi stable within about a year things started changing and I having low blood numbers and very low hemoglobin. My hepatologist referred me to a hematologist to try and figure out what was causing the blood issues. I had an enlarged spleen as a result of the cirrhosis and the hematologist said there was no cancerous or blood disease reasons for the blood numbers that it was associated with the liver disease. I continue to see her on a regular basis as they were monitoring the numbers. I continue to see her twice a year to review the blood numbers. I see my family doctor regularly and once a year he does my skin cancer review. Because of some of the way my blood numbers have been in the past I've had three bone marrow biopsies but they've all been negative. I basically go by how I feel on day to day and these days I feel pretty darn good. I hope this is helpful and that it wasn't too much of a run-on. Thank you for listening to me and God bless

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