Hepatopulmonary syndrome

[Nic01543]

Hiya I'm new to this group. I was wondering if anyone else has hepatopulmonary syndrome? My husband has decompensated liver disease and this hepatopulmonary syndrome he's on the transplant list. Has been for 4 months now. He needs oxygen 24hrs a day just wanted to see if anyone else has this rare complication also. Thanks for reading.

[Will3]

Hello and welcome, I had HPS which I have been told is indeed very rare. I also was on oxygen 24 hours a day starting off with the small tubes up my nose then progressing to a full face mask pushing 50 litres per minute in. Luckily I was never discharged from hospital so didn’t have to have it all set up at home and I was transplanted a few weeks later. I now see the liver team and the lung team regularly and things seem to be going well. I was the talk of the hep ward and all the medical students were at my bedside wanting to study the illness because of its rarity.

Wishing you and your husband all the very best, i’m living proof that there is hope and if you have any questions please don’t hesitate to ask.

Will

[Nic01543 in reply to Will3]

Thank you for replying. My husband is on the top amount of oxygen which still only gets his sats in the 80's he has finger and toe clubbing and cyanosis which is horrible to see. I feel so bad for him has he struggles just to move around, oddly though his liver is coping the hospital have said that's why he's home and waiting for the call. Im glad you've had your transplant and that your on the mend. How long ago was your transplant? Do you still need oxygen now? My husband is under queen Elizabeth Birmingham hospital.

[Will3 in reply to Nic01543]

My clubbing was horrendous, bruising also, it’s only just all gone, transplanted Feb 28th this year. At first they believed I had COPD alongside cirrhosis but after I think it was called a echo bubble test and some Other tests they diagnosed HPS.

No oxygen at all now in fact for a week before the transplant I had none because my SATS were better without it, they also improved when taken from the upper ear rather than the finger (something to do with the cirrhosis). I also remember having such a dry mouth when using the mask and I also was given a nebuliser every couple of hours for my lungs.

I was diagnosed cirrhosis first and spent 4 weeks in hospital then discharged then returned in an ambulance struggling to breathe 3 months later, spent 9 weeks in hospital diagnosed with HPS then discharged after transplant.

Good luck and warm wishes

Will

[Isabelle2]

Hi Nic

No Ijust had a simple transplant. I sincerely hope your hubby soon gets the transplant he needs. Mine has changed my life.

Isabelle xx

[Nic01543 in reply to Isabelle2]

Glad to here you've had your transplant and that it's given you a new lease of life. That's what keeps me going knowing that one day my kids will get to have a dad who can play football with them 😁

[rosemadder4]

Hi sorry to read about your husband’s condition, hope he won’t have to wait too long for his transplant. Wishing you both all the best.

My respiratory consultant advised me in June 2017 that she suspected I may have hepatopulmonary syndrome. I had fibroscan in September 2017 (told liver essentially normal!)... waiting to see consultant next week for results from endoscopy, Hopefully we will be closer to knowing if I have liver problem/portal hypertension which would usually be the case for hepatopulmonary syndrome! Had assessment for oxygen in January, was advised it would not be beneficial as my sats didn’t improve significantly with oxygen!

I’m tired most of the time but manage to work part time.

Take care xx

[Nic01543]

It took a long time to diagnose my husband's hps 2 years in total. Like you they did a lot of other tests first to rule everything out. My husband is also tired all the time think that's commen he sleeps a lot through the day not so good at night. I hope you get answers soon some times the not knowing what's going makes it worse I think. Good luck.