Monday, September 14, 2015

Alpha 1: In Training

I was the trainer,  I helped train Far Guy to give his own infusions. We bought a larger mirror so he could see what he was doing.  He did really well…once he stuck himself he said “Is that needle all the way in?”  It wasn’t… I said “Push harder!”   Yeah for a blood return!  He is braver than I am, I am not certain I could access my own port IF I had one.   I THINK he could do the entire process by himself if he had to…it would be frustrating but doable. We both need to switch off doing the various steps so we don’t unlearn anything or pick up any bad habits.  The infusions still make him really tired for a few days.  No, there are no improvements either other than he has not been sick since beginning the infusions in May.  He still walks about 2 1/2  miles a day.

Our youngest daughter finally sent in her sample to the genetics lab for The Alpha 1 Antitrypsin Deficiency test…I am told she used a number of lancets and her fingers were really sore.  We know she is a carrier (either a MS or an MZ, I am a MM and Far Guy is a SZ) and we will hope that she has the same genetic outcome as her sister(MS).

I sent out letters explaining Alpha 1 to some of Far Guy’s Cousins, that way they will know about it and can make their own decisions about testing. Knowledge is power sometimes.  If they test and don’t have it…great…if they do at least when they start to have problems they will be able to save their lungs before too much damage is done.

I sent an email to our niece in Kentucky…it seems she cannot get enough blood out of her fingers for the test. I told her I didn’t care if she had to stick herself a hundred times…she needs to get er done.

I heard from one of Far Guys cousins “If you eat (a supplement she sells) then you won’t “wake” up any genetic conditions…

Well stick a fork in me…

There is no cure for stupid…

Sunset September 13

Sunset September 13, 2015

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  1. Way to go FarGuy oh you two are doing amazing together all things are possible. I do hope the test for your daughter come back the way we all want them to.
    I cannot believe people still believe things that could harm them, your cousin should rethink.. Sad. Hug B

  2. I am very proud of Far Guy for learning how to do his own infusions. Most men would not want to do it. I say team work all the way!!! Hopefully your daughter's test comes back MS.

  3. Some folks really believe in those supplements, and they sound like cure alls. Glad things are going well with the infusions, and good for you for alerting others. What they do with the information is up to them, right?

  4. Knowledge IS power, and I happy that you took the time to inform other family members. Like you said, the decision is theirs, but at least now they are aware of it.

  5. I'm quessing the supplement was not dark chocolate? Darn. You are very brave. I did some of the port stuff with my kid, but I'm not sure I could handle it again. Gorgeous sunrise/ sunset photo. Is it sunrise if my iPad is facing east?

  6. No there isn't a cure for stupid. Ever. I'm so impressed with both of you.


  7. I too am impressed with both of you. You are very brave and get things done no matter how hard. Hope your daughter has desired test result.

    Shirley H.

  8. You are doing a great job on this condition to help Far Guy and relatives to manage the condition. Knowledge is power.

  9. You are so right...knowledge is the key. You are both smart to learn to both do it. Good for you two! As for the cousin..."here's your sign"! LOL!

  10. If something can be done ahead of time then the knowledge becomes power. It is good you both are able to do the infusion.

  11. I wish there was...... a cure for stupid. Sigh.
    You two are being very smart in how you are approaching this condition, checking each other and both learning all the procedures. Good for you for sending out information to relatives who could be affected.
    And Fay Guy,walking 2.5 miles a day - Yay!

  12. Beautiful photo!!
    Yup. No cure for stupid. ;)

  13. I laughed at your cousin's response. That's great that FG can now (if necessary) do his own infusions. And the fact that he hasn't been sick since May is really good. I just wish he could get completely well, but I know we gotta go with what we have now and be happy about it. Sending you both big virtual hugs. :-)


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