Bone marrow test tomorrow

[MotherGothel]

Long story short, I've had Autoimmune Hepatitis since 2006 and since June 2020, low platelets, and white and red blood counts. My meds for the AIH were stopped too. GP it because of the medication (azathioprine) and passed me on to a haematologist. They said the same thing. My gastroenterologist said he would go with what the haematologist was saying.

I had an ultrasound done a few months later, that showed an enlarged spleen, course liver and thickened gall bladder. Haematologist then changed her mind and said the enlarged spleen had caused the low platelets, despite not having an enlarged spleen before, but didn't want me to go back on the medication.

Fibroscan was done to recheck things, and I left with a diagnosis of cirrhosis and a referral to Birmingham hospital for the 13th Jan. All the while, my bloods have been getting worse and I'm more and more jaundiced.

Now I've been referred to another hospital, the haematologist has suddenly decided I need a bone marrow biopsy doing, so I've been scheduled for that tomorrow.

All in all, I feel awful! I went back to a&e one day as I felt really ill, only to be basically told off, asked what I wanted them to do about it, and sent home with morphine "just in case". They made it very obvious that I was wasting their time by being there and not to go back.

Really hoping that the Birmingham appointment goes in a better direction, although I am worried about visiting a hospital currently also not sure what to expect with the bone marrow biopsy as it wasn't really explained to me.

[CarpeDiem11]

I'm in a similar position to you (I have AIH and many of the issues you have mentioned), although not jaundiced. I am with the QE and believe me , they won't invite you in for a face to face unless they feel it is really necessary. Please feel reassured they are keeping everyone safe. I phoned to check on my u/s appointment today and was told lots of people are either not turning up or are cancelling appointments because of the current Covid situation. This means there will be fewer people around.

I would ask about the thickened gallbladder because I had one for a while, but earlier this year started having gallbladder problems, and then the other issues you have mentioned. I don't have weight problems or diet problems- it is just the AIH causing the problem.

The QE won't make you feel as if you are wasting their time and they have Consultants who specialise in AIH. They will try to get to the bottom of the problem and give you a proper treatment plan. Don't be put off by the bad experience of going to A and E. They probably have no knowledge of AIH. You have every right to use them.

Sorry, but I know nothing about the bone marrow biopsy, so can't help you there. Do go to the appointment. They will really try to help. Make sure that they put any advice in writing, in a letter to you, so that if you do need A and E, they don't need to take your word for it. They have it in writing from a Consultant. I got this for my current situation and it saved a lot of time explaining what was needed when I went to A and E. I hope things get better for you very soon.

[RodeoJoe]

If anything like mine the bone marrow biopsy sounds awful. Basically a sample taken from the hip, but of course they need to get through the bone. But I can honestly say it wasn't that bad. Compared to a liver biopsy it was a walk in the park. So try not to worry too much about it.

Can't imagine why they prescribed morphine? I thought drugs like that weren't good when you've got liver disease, but I'm no medic, just speak from experience.

The bone marrow test is probably to count out diseases, do you defo have auto immune disease or is that just speculation? I had the biopsy before transplant to count anything untoward out.

[CarpeDiem11]

I have been given morphine and codeine ( a morphine derivative), so they will prescribe this for pain relief, with liver disease, just not for extended periods of time. Just in case others are concerned about this point.

[MotherGothel]

Bone marrow biopsy done. Not going to lie, I think that was the most horrendous thing I've had done in my life 😫. Now for the three week wait for the results! Definitely have AIH, I was diagnosed in Kings College back in 2006 after a liver biopsy. I was diagnosed quite early, so I had no damage to the liver at all when I was diagnosed. I think kts because although they say its the medication and the spleen that have caused the low platelets, they aren't actually 100% sure and have just guessed to come to that conclusion!

[Hidden in reply to MotherGothel]

Well done for getting through the biopsy. Hopefully you will start to get some answers soon, keep us posted.