has anyone dealt with Hepatopulmonary Syndrome?

[patsyanne]

I have been on the trans list for liver since 2002.  I have been complaining about shortness of breath.  I just thought it was due to my spleen being so enlarged.  I was wrong.....
Last Monday I saw a pulmonary doctor.  He reviewed my history, took notes and sent me for blood gases and PFT.  Then, the next day (Tuesday, April 8th) I has a T.E.E. (trans esophageal echocardiogram).  I had a hard time bouncing back from that (with every EGD I've had, it always took me awhile to snap out of the sedation).  
This coming Monday (April 14th) I am to have a VQ scan.
I am slowly panicking.  The results will either move me up (yey) or off (not yey) the transplant list for a liver.  Someone help to calm me down....Anybody?

[Kande]

patsyanne, I did not have this problem, but I know about it. I will be very honest with you, and tell you only about 10% of the people have this problem. Yes honey some doctors will not transplant. For that reason I have found some information that may help you. I have found a hospital in Toronto, Canada that is doing some research on this disease. They are doing a study to see if an antibiotic, "norflaxacin" will help with this disease. Eligibility will require that you are not over 70 years of age. St. Michael's Hospital in Toronto is accepting 20 people for this study. It will only last 4 weeks, and testing will be done through 2009.  I will give you the information you need : phone # (416)- 864-5412 or email at : ***@****   You will need to speak with Marie Faughnan. All of this may not be necessary, probably everything will be fine! I wanted to give you other options. Don't panic, hold onto your faith!!  Let me know if I can help you with anything else. I'm sorry this took so long, but I had a hard time getting this information. Take care, and much love!  ~Kande

[Kande]

Oh, I totally forgot we cannot post email addresses!! Sorry I will pm the address to you. ~Kande

[D977]

Hi there,

I do not know much about this disease until you posted it here. I am praying for you that the good Lord will see to your needs and as Kande said hold on to your faith.
I am learniig about  hepatopulmonary syndrome.

Liver disease affects the lungs. The majority of patients exhibit mild to moderate arterial hypoxaemia essentially attributable to an alteration in ventilation/perfusion matching and limited by an increase in ventilation. A minority (some 10%) of patients exhibit a “hepatopulmonary syndrome” defined by severe hypoxaemia with arterial PO2 below 60 mm Hg, dyspnoea, cyanosis, digital clubbing, orthodeoxia, platypnoea and demonstrable pulmonary vascular dilatations causing a true pulmonary shunt and a diffusion/perfusion imbalance. The hepatopulmonary syndrome is incurable but resolves over time after liver transplantation.

After reading this i  have learned about what a  VQ scan is

The ventilation-perfusion scan is a nuclear scan so named because it studies both airflow (ventilation) and blood flow (perfusion) in the lungs. The initials V-Q are used in mathematical equations that calculate airflow and blood flow. The purpose of this test is to look for evidence of a blood clot in the lungs, called a pulmonary embolus, that lowers oxygen levels, causes shortness of breath, and sometimes is fatal.

Forgive me for asking but if the tests come back as a bad VQ then it is yeh for a transplant?
I am rapidly learning.
so after the test:
The results are usually available within a few hours, because the test is done only when you are suspected of having a potentially life-threatening condition (pulmonary embolus). Your doctor can interpret the pictures to determine whether your probability of having a blood clot in your lungs is high, low, or intermediate. If the probability is high, usually your doctor will order bloodthinning medicine. If it is low, he or she may not give immediate treatment, but will want to examine you again in a short time. If you face an intermediate risk, or if the V-Q scan cannot be clearly interpreted, your doctor may order a pulmonary angiogram (see page 8) to help determine whether you have a blood clot. This test is more definitive than a V-Q scan, but because it is more difficult and risky, the V-Q scan usually is done first.

I hope and pray for you to get well, i think Kande is on to it above..
Dan

[Kande]

How are you? We are all waiting for a good report. Give us an update when you get your results back. We all send you love and prayers :o)  ~Kande  (((HUGS)))

[patsyanne]

I don't have HPS!!!!  Praise God!!  I had extensive testing done last week and then some more tests done this past Monday (I am going to have my own episode on DISCOVERY HEALTH CHANNEL if this keeps up -hee hee!)
I had blood gases and PFT's done, then the T.E.E., and finally the QV scan......
So - what is wrong? you may ask yourself>>>>>
COPD from all my years of smoking cigarettes...
emphysema to be exact.....so I have an inhaler....2 puffs, 4X daily....and a new doctor on my "staff" to monitor me....
Thanks for all your prayers....  Patti
p.s.  I went to work yesterday for the first time in over a week....it sure cuts into the social life....can't talk on the phone, go to the frig and get something to eat.....(sarcasm)

[Kande]

WONDERFUL!!! Time to celebrate!!! Keep us posted about everything. Our own celebrity!!  Much love ~Kande

[mikesimon]

That is really wonderful news! I know what a great relief this is to you. I am so happy for you. Stay well, Mike

[patsyanne]

thank you!  what a great web site!