Friday, June 12, 2015

Far Guy: One down the rest of your life to go

Far Guy finally had his first infusion yesterday. 

It was a real journey getting this far…from May 18 to June 11th…24 days for people to get their poop in a pile.  May 18 was the official diagnosis day.  Alpha 1-Antitrypsin Deficiency.   For the record he is a SZ…if that matters, one gene comes from his Mother and one from his Father.  We were referred to advocates from Alpha 1 and from drug companies.…the phone began to ring.  I insisted on a special blood test (IgA deficiency or antibodies)that would give an indication of a possible allergy…that test came  back negative.  I read what I could and researched.  Our insurance was notified and infusions were approved for one year.  Home Heath Nurses were notified…they called us and since Far Guy is not homebound our insurance and Medicare would not cover a Nurse coming into our home…they would send a nurse but charge $55 an hour from the time they left a town an hour away…until they returned…BUT they refused to do the first two infusions because of a possible allergic reaction. Medicare and our insurance would cover the cost of administering the infusions in an infusion center.  Then the paperwork or whatever sat on someone's desk for five days…whilst we waited…Far Guy was fit to be tied. 

As soon as the gals in the infusion center got the orders within two days we had an appointment.

Far Guy is the first person our local infusion center has ever treated with this “stuff”…as far as I know it is mainly plasma from someone many donors who don’t have Alpha 1 deficiency.  The “stuff” can carry viruses and other infectious agents, even though supposedly all donations are tested and treated.

Gene Infusion one

He is all hooked up, ready for the “stuff.”

He did great…the anticipation was worse than the actual procedure.

Five Thousand dollars

$5,000 hanging from an IV pole.

Good to the last drop

Lynn  is holding the tubing up to get all of the expensive “stuff” out.  Lynn is my cousins daughter, she is one of two Nurses that we will be seeing weekly for awhile.

Next week I will learn how to swirl the diluent into the powdered form of the “stuff.”  Swirled gently and not shaken.  Once the mixing process is complete and in an IV bag it must be used within three hours.

If next week’s infusion goes well, by the end of week we hope to have an appointment for a minor surgery to place a port in Far Guys chest.  A port just makes sense to both of us.  After I am trained…I can give him the infusions at home, possibly he can even give them to himself. He will have weekly infusions for the rest of his life.

This “stuff” is NOT a cure…but hopefully it will help to protect his lungs from more damage.  If you or anyone you know is struggling with recurrent lung infections or emphysema they should be tested…early detection is the key.  At least the lung part of the destruction can be halted…if it affects your liver there is nothing that can be done.  To date all of Far Guy’s Liver Function tests are normal…and he has blood work done every six months because of his Trigeminal Neuralgia.

Glad it is over 

One down and the rest of your life to go.

Blog Signature

 

I wrote about Gene’s gene previously on May 19 2015

35 comments:

  1. I am so sorry that you both have to go through all this stuff. I sure give you all my prayers and hope things work out. I guess when it comes to your life and you want to stay in this world, you have to do everything you can to make that possible. I sure hope they never find it in his liver! Prayers.

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  2. "One down and the rest of your life to go." That is the point and it is so lucky they have something that WILL work. I am sure life will get back to some sort of normal. Take care you can do this. HUG B

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  3. Sending thoughts and prayers to both of you as you start this journey.

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  4. Sometimes being special isn't such a great thing. . . .
    I'm impressed that you figured this out and then persevered through the Land of Red Tape.
    I look forward to hearing that Far Guy feels better after a few infusions.

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  5. Praying for you both as you start this journey. I am so glad you finally got the "go ahead" on this and that the insurance will help pay. Far Guy looks very relaxed and happy as he sits there. Looking forward to "progress reports". Have a great weekend.

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  6. Thankfully, there is a treatment for Far Guy. Wishing him well with these weekly infusions.

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  7. I think it's mostly because of your diligence on getting this done that it didn't take any longer! And you're right, a port makes sense. I hope this stuff does what it's supposed to do, for all our sakes! FG is a virtual member of my family, too. :-)

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  8. Although the infusions are an inconvenience, am so happy that the two of you have found this helpful "stuff". I have a neighbor who is on a three times a week dialysis and has to have someone take her the 30 minutes to the hospital for the infusions. My best wishes to Far Guy and to you as you deal with this. God bless!

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  9. To dear Gene (Far Guy): God Bless.

    Shirley H.

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  10. Praying this will work. I have never heard of all of this, and am amazed that they have tests and infusions for it. My uncle does his own daily kidney dialysis. I'm happy you have found an answer and the port will help, I'm sure. God bless you both.

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  11. I hope it works and helps the Far Guy dude!!!

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  12. Wow, at least you're doing something positive now, not just treating symptoms.

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  13. In my prayers that this is the answer to helping his health!!!! Wowsa!

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  14. I have never heard of all this before. I'm glad to hear there is something that will help keep Far Guy going and I pray that it will all work out well for him and for you as you learn how to do the infusions. God bless you both!

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  15. Good job, Connie.... Hang in there now.

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  16. It's obscene what these drug companies charge for meds! Prayers for you and Far Guy.

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  17. He looks pretty cheerful. Glad he has a treatment plan and hope it works.

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  18. How complicated! Sure hope it works and he feels better. Waiting and worrying about that first treatment would be hard. Glad the first is done. Those are really good pictures of Far Guy.

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  19. I am glad they did get it all in order. Putting in a port will make his whole life easier. He can't be out on a motorcycle anymore and fall to the ground, that would be dangerous. Once you get trained the job will be easy and Far Guy can pay you $55 an hour. The treatment is amazing and how the story started to the discovery is amazing and wonderful. My wife's friend keeps saying she doesn't want the port but every three weeks with chemo going in will require her to have one. I would think Far Guy will fill a lot stronger once this treatment kicks out the invaders in the lungs. More oxygen is always better.

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  20. Insurance approval is a mess. Right now we are on Cobra which is $1400 a month. My husband was given a severance with coverage for 2 months. We're out the 15th. Hopeing for a response from an interview on Monday. But sorry, this is not about me. Your guy will make it because he has such good support and sounds like you both have a great attitude. Hope he'll see a difference soon.

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  21. Praying all goes well for Far Guy, Francine.

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  22. Keeping you both in my prayers. God bless. ♥

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  23. I hope the worst is over and this journey goes smoothly from here. Far Guy looks very handsome and spirited in these photos. Looks like he has good positive energy to help in the healing, and you are showing that same positive attitude as you support him.

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  24. The first one is over and soon it will become somewhat of a routine, I would think. It's so wonderful that you found this, that it's available, and your insurance will pay for it! Wow, $5000 a bottle is pretty amazing.

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  25. Well I can only say good luck with the rest of his life, and hope it's a LONG one!

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  26. I hope this treament works out well. He certainly looks happy as he's about to start the treatment.

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  27. I am sorry about the delays and frustration. It does my heart good to see FG smile in that last photo. You know I wish you both the best and will keep you in my prayers.

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  28. He seems cheerful and prepared.

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  29. I agree that it is mostly because of your diligence that this treatment is actually happening. With such a rare condition, it is wonderful that the cause was finally discovered and that treatment is available.

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  30. Yes, a port makes the most sense. Sorry it took so long to get things straightened out but, sadly, it doesn't surprise me. Just glad that he is finally getting the infusions and that his liver is good to go. Hurray! May things go smoothly from here on out. *hugs and a little happy dance*

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  31. I'm so thankful you have found out about this stuff! I'm also very thankful you are an EMT, therefore you don't fall apart and can administer the help needed! Small stuff, but huge in the matter of life!

    Linda
    http://coloradofarmlife.wordpress.com
    https://coloradofarmlife.wordpress.com/sherlock-boomer

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  32. Nice to see him smiling:) Glad you have found something to make Far Guy's life a bit better.

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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