repost from tumblr cuz i’m lazy

So Friday there was another appointment with the liver specialist.  My mother-in-law came down from WI to go with us, she stayed the week with us.

I figured it would be a very long day because he was scheduled for blood work, then a CT scan, and then the doctor’s appointment but it surprisingly was all very quick in terms of them being on time and getting the stuff done… just boom, boom, boom.

So he had the blood work done, then the CT, and then we met with the doctor.  I really do like his doctor a lot.  He seems like he is always quite happy and positive, he always speaks with a very pleasant tone, he is organized and seems like he would know his stuff even in his sleep.  By the time we met with him about 2.5 hrs after we arrived there all the reports were back on the CT scan and blood work.  Wowza!

The CT scan is standard every 6 months to check for cancer.  It’s a very scary prospect but people with alpha 1 are at a higher risk as are people with liver damage so they check every 6 months because if they catch it they can transplant the liver before it spreads.  There was no mention of them seeing anything on it so I assume that is all good… this was what was causing me the most anxiety.  They also didn’t detect any fluid in the abdominal or pleural cavities which is awesome.

The doctor seemed shocked in a very happy way that his blood work concerning all the liver stuff is staying extremely stable, in fact some of the numbers are exactly what they were when we were there in the beginning of January.  He kept chuckling and going ahh that is amazing, this is very good news! The doctor said that it is possible that this could go on for quite some time.

The only downside is his kidneys are not happy with some of the meds.  Because those levels are off it shot up his meld score a few points (the meld score is used to determine how sick the liver is).  They start transplant proceedings at 15+.  His is currently at 13 but the doctor calculated what it would be if the kidney levels were normal and it would be an 11, which is what it has been (fwiw, a normal healthy individual without liver damage is 10 and under).  I asked if the kidney levels were restored to normal if the meld would go back down and the doctor said most likely.  So the doctor decided to tweak some meds and have him redo blood work in 1 week and then they can recalculate the amount of meds if they need to or if he has any issues he can call them and let the doctor know.  Basically they’ve just got the get these meds at a level where the kidneys are happy.

The only thing that sort of irked me is that, the last time we were there, the doctor ordered another Alpha 1 test.  Now we already knew with 100% certainty that my husband has Alpha 1 Antitrypsin Deficiency and he has the ZZ phenotype, so I was kind of baffled why they ordered the test again but just figured they wanted to confirm it for their own records.  This seemed to be the case but during this appointment the doctor told us that he had been doubtful of the original diagnosis.  I dunno why but it irked me.   I wanted to ask why he thought that but I didn’t which I kind of regret now because I just wanted to know why he doubted it, yah know?  All I can figure is they so rarely see it and it is even rarer to see a liver affected Alpha, especially one in his age range (liver affected alphas are usually babies or young children and older men in the 45-55 age range).

It was a pretty short visit with mostly good news and if everything goes well we don’t have to make another trip until June 13th.

My husband has done an amazing job at maintaining a healthy lifestyle and really changing everything he does around.  I know that it can’t be easy and I am so proud of him.  I know that the work he is putting in is what has kept his liver stable.  Not to mention he’s also been doing a lot of  mental preparation for when the day arrives that he needs a transplant.

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