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.

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

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

$5,000 hanging from an IV pole.

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.

 

One down and the rest of your life to go.

 

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