Saturday, November 5, 2016

Tests

We spent a morning at the clinic in Fargo this week.  Far Guy is in a five year study.  This is his second year.  They did a CT Scan of his lungs, nothing has changed in the last year…his nodules that showed up last year are unchanged.  They appear to be non cancerous nodules that the Dr is not worried about.

Road between Hawley and Lake Park

Road between Lake Park and Hawley

A few weeks ago he had a Liver Biopsy; he does not have a fatty liver so no change in diet is warranted, he has some damage which is consistant with Alpha 1 Antitrypsin Deficiency. The biopsy made him sore and uncomfortable for a few days.  We are not big alcohol drinkers…Far Guy would not be alive if he drank more than one alcoholic drink a week…that is info straight from his Liver Specialist.

The test for Alpha 1 is a simple free blood test, we wish that more cousins would get tested so that we could help make two and two = four.  So far everyone seems to be afraid of the results.   I can understand that…I was afraid of the results too. Since it came from both sides of Far Guys Family…we can only guess where the lung problems were and where the liver problems are…since both are affected by Alpha 1.

Not everyone that has Alpha 1 is affected, some live normal healthy lives and don’t realize they have it.  That is the hope we have for our daughters and our Grandson. 

The weekly infusions are becoming old hat now, the whole process takes about an hour and thirty minutes.  He is getting much better at sticking himself!  He can do the entire process by himself but I usually help.  Is it fun?  No, he usually spends about two days every week not feeling well…he tires easily and just feels yucky.  BUT he hasn’t had to be in the hospital with lung infections since he began the infusions in May of 2015. 

I wrote an email complaint to the clinic this week.  We had to wait one hour for a blood draw in a perfume filled waiting room.  Four people were working, but the best they could manage was five draws in an hour.

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18 comments:

  1. I am glad to hear that the infusions seem to be keeping things at bay and that giving them is getting easier for Far Guy and you. Sounds as though you both are doing the right things. Prayers for both of you.

    Shirley H.

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  2. Glad to hear that everything seems to be under control.

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  3. Praise the Lord for no sign of Cancer! Glad to hear that things are going as well as can be expected.
    Blessings to you all.

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  4. I'm so glad he is better and/or holding his own. AND NO SIGN OF CANCER! YAY!!!

    Linda

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  5. Sounds like good news though I don't understand all the ramifications. Being a member of a two person team dealing with a serious illness take time getting it right. I'm still working at it myself...:)

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  6. I'm just glad all of this is keeping him from getting any worse or spending time in the hospital--whoohoo! That makes it all worth it.
    Four people working and only five draws in an hour? What the heck were they doing? Not their jobs, obviosuly. Glad you complained.
    Quite a few older ladies here pour on the perfume. You can smell that they have gotten their mail or entered or exited the building long after they are gone--and I am not even known to have a good sniffer like Leah has. Poor FarGuy!
    Glad things are going well, though! :)

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  7. Sounds like you two have a handle on things so far. Have a great weekend!

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  8. Congratulations on the good test results.

    I hope more of the cousins take the Alpha 1 test. Personally, I would rather know than live in limbo.

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  9. I admire Far Guy for being brave and enduring two exhausting days per week because of the treatment. His family needs to take the test, knowledge is power.

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  10. I have to echo troutbirder's comment. It does sound like good news but I don't understand all you and FarGuy have to go through but it sounds pretty difficult. Even having a short wait in a non-perfumed waiting room could make life a teeny bit easier. I hope your complaint results in some action taken.

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  11. Thank you for this very positive update. I have been wondering how it was going for FG.

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  12. It must give you a great sense of relief to find not much change. When you look back you see how valuable the infusions are.

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  13. Good report-- thanks for the up date. The Bennie and Far Guy have
    been doing much better this year.

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  14. Oh the perfume in the medical setting is so offensive! My daughter's heavily perfumed patient liason visited her everyday in the oncology unit until she requested a non-perfumed liason. Bad enough cancer patients get nauseated from chemo. They don't need help from perfumed caregivers/employees. Sorry you had to deal with that yet again. Way to go on the positive update, though!

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  15. Glad that FG doing so well and that validates all the effort with infusions so well worth-it! Plus great to be in a study and have good input/info!

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  16. I am also glad to hear that he has had no further damage to his lungs or liver. That's very good news, so I guess that awful treatment is worth it. He's a real trooper, and you as well. :-)

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  17. I read this but apparently did not comment. Just want to say that I know none of this is easy or pleasant or what you hoped life would be like but I am thankful for the improvement. I do wish relatives would take what you have learned and been through and heed your advice. God bless you both. I hope the upcoming holidays will be very nice for you and the family.

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  18. It is so good that he is taking treatments. It makes you more assured also when he is getting all of the other tests done.

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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