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Need info on Hepatopulmonary Syndrome
I am my sisters caregiver. Diagnosis of cirrhosis was 3 years ago. Stage 4. She is 61 and has just been diagnosed with Hepatopulmonary Syndrome and will be going for liver transplant evaluation the week of 01/11/15 at Vanderbilt Hospital in Nashville TN.   I can only find one post on Med Help regarding Hepatopulmonary Syndrome.  Her PO level was 59.  She is on oxygen now.  Her HE is really bad most of the time.  She has some varices. all small and stable at this time. I know the wait can be long for a liver transplant.  

I guess what I want to know is this a death sentence for her while we wait?  If you have any info, the good, bad and ugly will be appreciated. I need the cold hard facts!

Thank you in advance for any information you have.
CandyJean
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446474 tn?1446351282
Hello.

Hepatopulmonary Syndrome occurs in about 15%-30% awaiting liver transplantation. It is characterized by abnormally large number of visible terminal vessel branches, in the lower lungs interfering with the intake and exchange of oxygen. Leading to abnormally low level of oxygen in the blood which can be measured using pulse oximetry.  It causes shortness of breath and the person has feelings associated with impaired breathing especially when performing any activity. “Clubbing” of the fingers is also a common complication of Hepatopulmonary Syndrome.
Hepatopulmonary syndrome is an indication for liver transplantation. Transplant is the only therapy currently available for patients with significant low blood oxygen that can reverse the hepatopulmonary syndrome. The pretransplant evaluation should include a full workup of the patient’s pulmonary issues. Patients with a PaO2 < 60 mm Hg are granted higher priority for liver transplantation.
Resolution of hepatopulmonary syndrome generally follows liver transplantation, but extensive and prolonged care may be required both pre-and postoperatively for go outcomes.

I have a friend who received his liver transplant 2 months ago now and had and has very bad hepatopulmonary syndrome. He required oxygen for months before his transplant and was in ICU for 22 days after his transplant due to his continuing breathing issues. It hasn’t been easy but he is now at home on oxygen and has caregivers helping him 24x7. The doctors have told him it may take up to a year for his lungs to recover so that he will be able to breathe on his own. He has two full time caregivers there with him 24x7 and 2-3 others, including myself, who have been trained to support him as he has had other complications since his transplant as well.

Hopefully your sister’s case isn’t so bad. From my own experience with my friend, I would say having a good and solid support team for her pre and especially post transplant is criteria to her recovery. I’m sure the transplant center will say the same. So now is a good time for her to put in place a good caregiving team. Remember this is a marathon, not a sprint so that is the mind set caregivers should have otherwise they will get burnt out very quickly should any additional post transplant complications arise. It is best to be realistic about the realities of transplant so when issues arise it doesn't come as a surprise. Rarely does everything go according to plan. There are often what we call "bumps in the road". Some issues are to be expected. So it is good to know that and not be overwhelmed by it.

The Nashville region has one of the shortest wait lists in the country so she shouldn’t have to wait too long for a transplant lucky. Hopefully she will get listed and transplanted soon so she can start to recover her health.

Best
Hector
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