A few of you may know, but most don't, that when I was a toddler, I was found to have a liver enzyme deficiency called Alpha-1 Antitrypsin Deficiency. I was sick fairly often at that age, and one those times when I was sick, my pediatrician palpated my liver and found it to be enlarged. They ran some blood tests, and I came back positive for Alpha-1 (which, btw, was completely unrelated to my childhood illnesses). It was a freak thing that probably would have gone undetected until I was much, much older and manifesting symptoms. While I was seeing my PCP last week, I asked to be screened for Alpha-1 again; the results came back today, and yes, I am still positive for it (unsurprisingly; this is a genetic disorder). This particular enzyme is responsible for protecting my lungs, among other organs; any problems I have with it will likely be respiratory. Oct. 30 I go in for a Pulmonary Function Test, and then a week later I will see my pulmonary specialist and come up with a plan. It isn't anything that is serious right now; I may go my whole life and not have trouble with it. On the other hand, I could develop emphysema, COPD, or worst case scenario, need a liver or lung transplants ... so I feel it is important to monitor this as I age. You can read about Alpha-1 Antitrypsin Deficiency here.
9.03.2009
48 Hours Post-Gallbladder Removal/A1AT
My surgery went well. The nursed described my gallbladder as "yucky", so I feel vindicated. I was home on our oversized living room chair merely three and half hours later. I have been sleeping a lot, but sentient enough to do did a bit of homework. Other than feeling stiff and sore, I'm doing great. I was allowed to take a shower today; it felt sooo good getting surgery gunk off me; there's nothing like sleeping in your own grunge for several days, blek. My torso is still yellow from the iodine, but at least my pits are clean! Mom came up for my first night. She was an incredible help to me and to Stephen. With her mommy-touch, she made a pot of homemade chicken noodle soup, did a few loads of laundry, helped keep the dishes up, and even helped to get onto the cats when they were naughty (which they were quite frequently yesterday morning).
Subscribe to:
Post Comments (Atom)
3 comments:
A1AT is not just lungs, but liver and skin medical problems also. Most doctor's do NOT medically watch the liver. That is the cause and the main problem. Your lungs are symptoms of the genetic disorder. I would find out your pheno type MM is normal common A1AT pheno type are MZ MS SS SZ and ZZ, and your aat level. There is also nuls and a "F". There are many of us that have the A1AT disorder. In fact gallbladder removal is one of the more common surgeries for alpha-1 liver patients. Again gallbladder is the dis-functioning liver issues. Please take this genetic disorder seriously. Many of my friend are transplant of the lungs or liver. With many more on replacement enzymes or antitrypsin Those products are Aralast, Prolastin, and Zemaira. I'm personally on Zemaira for both lung and liver issues. Pulmonary specialist are not the answer as the genetic disorder is the liver. Too many patients are treated for the symptoms and not the cause(liver) I would suggest to review the web url www.alpha1advocacy.org
Go to their education area and read about the problems and solutions to testing and other treatments. Ava avaaveeno@y@hoo.com Remove the "@" in the word and send.
My phenotype is SZ.
I will review the website. I admit I am new to this and have so much to learn.
yep! SZ here also...SZ are from stats usually liver and skin affected more that any other symptom...when I hit the 50's it was down hill until the augmentation I hope your antitrypsin lever is better than mine. I'm about 8.5 on the micromolar scale that is the one from 0 to 32. 11 =or> below, you can choose an augmentation to boost your levels and not stress the liver or the lungs. It is a weekly IV which I have been doing that for the past 7 plus years. I'm in the front range of the rockies very close to the divide. What might be your general location? Some area have great alpha-1 docs where other are well not very good..... email sometime and we can chat off blog. I do wish both of you the very best... Ava
Post a Comment