Common Variable Immunodeficiency Archives - Page 3 of 6

We finally figured out why Gavin has NOT been able to get his life saving medication and you won’t believe the reason

I've just spent the last three hours on the phone, bouncing between Gavin's doctor, the specialty pharmacy and insurance. I swear to God, if I had hair, it would be all over the floor right now. After three fricking frustrating and grueling weeks, we've finally gotten to the bottom of why Gavin's infusion medications are still not available. I'm going to skip the nightmarish phone calls and the fact that Gavin's doctor and her entire office is gone for the whole week, without an on call person, according to the answering service. Instead, I'm going to simply explain what caused this giant cluster fuck and it is/was a giant cluster fuck. I just got off the phone after speaking to a very determined person with Gavin's insurance provider.. We couldn't…

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July 9, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / My thoughts

My wife and I have made a very difficult decision

I haven't heard anything about Gavin's IVIG infusion meds yet and he will be missing his sixth infusion in a row on Monday. As a result, Lizze and I are having to make some difficult decisions. It's completely reasonable to assume that with every missed infusion, the risks to Gavin's health increase. We don't know anything for certain or to what degree the risks increases but I think it's perfectly reasonable to take precautions at this point. With that being said, Lizze and I have decided not to expose Gavin to large groups of people. Things like crowed movie theaters, family gatherings and even the grocery store are needless risks. Again, we know for sure is that he has a severely compromised immune system. We know for sure that he…

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July 8, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

The doctor called and I learned something very interesting

Gavin's awesome immunogist just called and wanted to know what was going on. I explained what I was told by the pharmacy and she was frustrated by it as well. Neither of us are sure what's going on and why there's such a delay. She's going to get to the bottom of this, one way or another. I also learned something very interesting. When I asked her about running Gavin's labs to see where he was at, she explained that when we do that, he has to be off of his infusions for three months. I wasn't able to really ask why three months? What that tells me is that if we can go three months in order to test his levels or see how he does on a break,…

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July 6, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / IVIG Infusion / My thoughts

Even if we’re overreacting, I can live with that

Until we're given other instructions, we will not be taking Gavin anywhere there are crowds of people. I've left messages once again today in regards to Gavin's IVIG infusion medication and I'm waiting to hear back. At this point in time, and in the absence of definitive information one way or the other, we're going to assume that Gavin is at risk. That's simply the safest approach we can take at this time. Currently, Gavin's feeling okay and on the off chance we're overreacting, I can live with that. What I can't live with is not taking this seriously and having something happen.

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July 6, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / Inspirational Posts / My thoughts

The #1 reason I’m so angry tonight

I'm trying to do many things right now and one of them is fight off my anger. I think one of the reasons I do as well as I do under all this constant stress is that I don't get angry. I really don't get angry, and if I do, I don't hold onto the anger. Being angry is like drinking poison and expecting it to effect someone else. It's destructive and has little place in my life. Having said that, I'm fucking angry right now. We've been dealing with this GAMMAGARD shortage for over three weeks and Gavin's last IVIG infusion was on June 18th. Today marks the fifth IVIG infusion in a row that he's missed because we can't get his fucking medication. Gavin has Common Variable Immunodeficiency…

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July 6, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / My thoughts

There are 14 reasons why I can’t stop worrying right now

I've spent the morning on the phone, trying to get ahold of the pharmacy responsible for delivering Gavin's IVIG infusion supplies. I'm not content waiting to find out when his medication will arrive. This is too important to let happen on its own time frame. After a few attempts, I finally got to speak with a person at the pharmacy a little bit ago. As usual, they were very nice and seemed to be equally frustrated that we don't have Gavin's medications yet. This person went over what was going on and it's safe to say that anything that could possibly go wrong, has and continues to go wrong. Let's just review what's happened so far. There is what appears to be a manufactured (purposeful} nationwide shortage of GAMMAGARD. Immunology…

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July 3, 2018

Common Variable Immunodeficiency / GAMMAGARD / Gavin / Immunology / My thoughts

This is life threatening and he needs his treatment

It's now Tuesday, July 3rd and it's been three weeks since we first learned about the nationwide shortage of GAMMAGARD. Gavin recieves at home IVIG every Monday and Friday for treatment of Common Variable Immunodeficiency (CVID). His immune system is severely compromised and this medicine gives him a temporary immune system. It's not permanent and it burns off rather quickly. These infusions are done twice a week in order to keep his levels up and his body fighting off illness or disease. Gavin has now missed four infusions in a row and while we're told not to panic, I can't help but feel this overwhelming sense of urgency to get this resolved. We're currently waiting on his new medication to be dispensed. Everything has been approved and the medical supply…

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July 3, 2018

Common Variable Immunodeficiency / Gavin / Immunology / My thoughts

He’s almost missed 3 in a row and I’m worried

We are very quickly approaching the Gavin hasn't had an IVIG Infusion in over a week time frame and that's making me exceptionally nervous. Since his first infusion all those years ago, he has never gone this long without one. He's never missed three in a row and tomorrow will mark the third missed infusion in a row. I'm going to follow-up today and see if there is anything at all, that I can do to move things along. Realistically there isn't anything I can do but I feel better asking anyway. I'm worried.

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June 28, 2018