It has been some time since I last visited this forum, but I wanted to reach out for some advice. Any reply no matter how small would appreciated.
My wife has been experiencing liver pain for almost 8 years. About a year ago, she underwent a fibro scan, which showed a reading of 20kPA. Following this, she underwent ultrasound and MRI scans, and the results indicated that her symptoms were due to an absent hepatic IVC with the right hepatic vein connecting to Indra hepatic IVC and draining backward into collaterals. There was extensive drainage into the azygous system and minimal IVC flow. No cardiac abnormalities were found on the echocardiogram. This issue is also causing portal hypertension due to the back flow of blood. A side note: She’s not been able to conceive naturally and has had 3 M/Cs with medical intervention. We now believe this is the reason behind that.
We got referred for a second opinion at the Royal Free Hospital in a multidisciplinary team meeting. However, they informed us that the options available were either a liver transplant or inserting a stent into the veins to improve blood flow, both of which carried a high risk and they were not prepared to go ahead since she is physically well and is able to go about her day to day without any issues.
Our concern is that although her liver is currently functioning normally, the narrowing or absence of the IVC vein will eventually lead to its failure.
We are looking for recommendations for specialist hospitals, both nationally and internationally, where we can seek additional opinions on her case. She has already been referred to Birmingham for a third opinion, but we would like to explore other options as well. Our current consultants have been incredibly kind.
If you have any questions, please feel free to ask.
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RAAN88
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This sounds like a pretty uncommon issue, certainly the first I've seen. It does though look like your own medical team are doing all they can for you and offering the 3rd opinion seems like they are also exploring the options for you.
Birmingham have some of the top liver specialists in the country. I thinks its now the biggest transplant centre too, but dont quote me on that. Either way you'll get great advice there on what options there are.
The good thing from your post is that all seems reasonably stable. So should there be some form of surgical intervention then chances should be good even with obvious risks. It may also be some time before anything as drastic as a transplant is needed.
Of course any of the other liver transplant centres could also give great advice, I doubt though it will differ too greatly between them.
Agree with other comments, it sounds a most uncommon event your wife has. Now she has this diagnosis I suspect they will carefully monitor her to watch future developments, and should there be a need for change in treatment plan I’m sure that will be put into place swiftly.
I had my transplant at Birmingham, they have a huge team of specialists there, and do more transplants than anywhere else in Europe. If you’re going there, listen to them.
If your wife is able to function quite happily in life currently, then leave well alone from a transplant. It is a life saving op, carries significant risks, and takes a significant time to recover from, with medication for life. It has meant the world to me, but not undertaken lightly.
this sounds a bit like Budd Chiari? To be honest if she’s well then you are probably better leaving alone with monitoring. If she’s experiencing ascites or poor liver function then intervention woukd perhsps be needed. I’ve lived many years with blocked veins and stents through collateral vein blood flow. Stents were only put in when I became ill.
hey, thank you for your response. The consultant said it has all the characteristics of budd Chiari, but it’s something different. Essentially the IVC vein is absent on exit from the liver and the blood up to the heart is being transferred via Newley created vessels. Kind of like using a A road instead of a motorway. They wouldn’t be able to put a stent into the IVC vein but could possibly look at stenting the smaller vessels to increase flow.
My wife and I are really keen on having children and we do struggle to conceive and when she has (3 times) it’s been a M/C. we are hoping to find a treatment plan that can allow her to hold a pregnancy and for it not to be fatal.
I’m so sorry for your losses. It’s so hard that couples have to go through 3 miscarriages before they can access help. You’re probably aware of miscarriageassociation.org.....
I had a miscarriage which I now put down to Alpha 1 antitrypsin deficiency although I didn’t know at the time. I’m not sure knowing the cause helps, although you desperately want answers each time it happens. I have 2 adult kids now, but still shed a tear for the one I lost when I see TV programmes with miscarriages in the story.
Wishing you and your wife a happy pregnancy next time and as many babies as you’d like in the future x
sadly, I don’t think we will ever be able to be parents while she has this condition. And with no treatment plan and only periodic “monitoring” I think we only have to accept it’s never going to happen 🙏🏼
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