Hepato Pulmonary Hepatitis

[Eloracj2]

Hello, my first post!😄

I was diagnosed with Autoimmune Hepatitis in 2015 and Hepato Pulmonary Syndrome last year and placed on the transplant waiting list for a liver in August 2016.

Does anyone have any information on this little known condition?

Thanks

[AyrshireK]

Hepato Pulmonary Syndrome seems to be a fairly common symptom of late stage liver disease. It is changes in the lungs which leads to the breathlessness that many with cirrhosis suffer. Partly what due to toxins in the blood affecting how much oxygen the blood is able to transport.

Quite a bit of fairly simple to absorb information on Wiki (yes I know not always the most reliable of sources but does seem to cover it quite well).

en.wikipedia.org/wiki/Hepat...

My hubby also has AIH induced cirrhosis, he was listed for transplant in 2014 but after a 10 month wait was delisted because he was deemed to be doing too well. I hope your wait is more successful and you don't have too much longer to wait for your 'gift of life'.

All the best, Katie x

[Eloracj2 in reply to AyrshireK]

Hello Katie, thank you for your reply.

Sorry to hear about your husband, I hope he continues to be well never needs to be reamitted to the list.

My AIH is stable, the Drs said it was unlikely that my liver would ever have failed, they said less than 4% of patients with AIH go on to develope HPS. I have done some 'googling' and have seen the Wiki piece, but thank you for the link. There is little known about HPS, so very little information out there, so I was hoping someone with HPS would contact me with their experiences.

Yes, I hope it won't be long too, my son did try to become a live donor, but unfortunately it wasn't to be. Ah well, fingers crossed.

Thank you once again Katie, it's so nice to see that people out there do care, very uplifting😄

Kind regards

Carole

[tyleri]

Hi Eloracj

I am sorry to hear that you are unwell. I had a liver transplant about 10 years ago for hepatic pulmonary syndrome with cryptogenic(unknown) cirrhosis. I had been unwell for about 16 years with no definitive diagnosis.Finally having a mild stroke like episode because my sats were 65 %.

My transplant was a success but I have had residual lung problems.

If you have any questions please let me know. with best wishes to you Tyleri