Thursday, October 22, 2015

What we pass along

We have been waiting for our youngest daughters genetic test results for the Alpha 1 Antitrypsin Deficiency.  She is an MZ…the M from me and the Z from her Dad.  We were hoping/praying that she was an MS like her sister. Her count is low on the MZ scale…she is just 3 points above her Dad. 

HOWEVER since she knows her status she can seek treatment if necessary before her lungs or liver are damaged.  She needs to have a liver function test at least once a year. Since she leads a really healthy lifestyle she has a lot going for her.  Many people that are MZs have no problems….from what I have read it is like the roll of the dice.

There is nothing we can do…nothing we can do or say to make it all better.  We can only be good listeners and give advice to the best of our ability… and pray.

“If you pray why worry and if you worry why pray.”

If we had known years ago before we had children that they would be carriers…would we have had children?  Probably…but we didn’t know…just as we didn’t know if she would have my hair or her fathers…

Jen and Gene

Jen and her dad  September 2015

Obviously she has my hair! 

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20 comments:

  1. I'm so sorry you didn't get the news you had hoped for, but as you say, it's best to know and be able to take what action you can. What a sweet photo of Jen and her dad, and yup, definitely not her daddy's hair!

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  2. “If you pray why worry and if you worry why pray.” I like this it makes sense. I am sending hugs but knowing is the best defense. HUGS B

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  3. Yes, it's not the best news but knowledge is power. She certainly does have your hair. I was surprised when I finally saw a picture of you and learned you don't have white hair like me. I don't know why I thought you did. :-)

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  4. Wonderful picture of Jen and her Dad. I wish test results were better but as has been noted, knowledge is power. I am so sorry you have to deal with these rolls of the dice.

    Shirley H.

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  5. At least she knows and can take precautionary measures. That is such a nice picture of Jen with her Dad.

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  6. Glorious picture.
    Today's kids (really young adults, I guess) are so much more aware about good eating and good lifestyles.

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  7. Treatment evolve and get better all the time. It's like in our family we know we have diabetes and Alzheimer and we watch for signs and it has shown up in every generation so far.

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  8. With the advances in medical care, Jen will most likely have more options as she ages.

    Love the photo of Jen and FarGuy.

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  9. Sorry to hear this. She looks fit and healthy!

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  10. I did more reading on the net. I hope your daughter can keep herself safe from a lot of those things that are bad to inhale. It is better she can be prepared and know than to never to have found out. I understand your concern now after reading more. It is such a miracle that you found that pamphlet. I call that a God thing.

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  11. Knowledge is power. The Fuch's Dystrophy that Larry has is also hereditary, although I don't think there is any testing for it or anything you can do to make it less serious, but there is treatment for it after it gets bad enough. It is a kind of roll of the dice kind of thing too.

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  12. I do love the quote you used . . . so true, right. But at least Jen knows and has a basis for decision-making. Good wishes to all of you.

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  13. What a lovely pic of Jen and her dad. God Bless her. Prayer is such a valuable component in life....I'm sure it will
    be a great help to you all. It's better to know ahead of time than not, isn't it? She can make good decisions based on her knowledge of the condition. In the years before my mom passed away, she seemed to acquire so many different diseases, and it seems like I'm following in her footsteps. Keeping up those prayers for all of us!

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  14. By searching for a cause for Far Guy's condition, you have given your daughter the gift of knowing early enough to prevent the kind of damage her father suffers. Knowledge is power.

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  15. Sometimes having knowledge seems like a double-edged sword - but knowledge always is power, in your daughters case the power to manage and beat the disease.

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  16. haha Love the hair comment. So many things are a roll of the dice but I think she's got an amazing chance of having none of the signs and the other side is the blessing that you shared with your family the testing so they would know! Love that photo of her and her Dad tho!

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  17. Oh, darn! I'm so sorry. Thankfully today there are things that are known and can be done. HUGS

    Linda
    http://coloradofarmlife.wordpress.com

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  18. Well, luckily she didn't get her dad's hair ;-). Prayers for all of you!

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  19. You didn't know. Life is a crap shoot. I wouldn't trade my Dagan for anything--and on top of all the other stuff he has had to deal with all his life he ended up with glaucoma from my dad to boot. But he's a happy guy and life wouldn't be the same without him. Love trumps genetics every time. ;)

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  20. You had no way of knowing just as bullheadedness is handed down here there may be things we don't know about yet. You found out early. She's on top of it. Medical advances are made every day. It will be fine.

    You and your family are in my daily thoughts and prayers.

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Thanks for stopping by! I appreciate your comments! If you have a question I will try to answer it here. Connie