Seriously!!!

OK, so we have a plan. Funny thing is that it is none of the plans I had discussed with Dr. Dazzle last week.

I spent part of the day on the phone with pharmaceutical company's this morning. The Amikacin that I need is still out of stock. I was trying to find out what I needed to do to get this drug that I NEED! I was BEGGING for my drug. What I found out is that there are 3 pharma companies that manufacture Amikacin in the US. Two of them had to shut down production at the FDA's insistence, due to violations in the manufacturing plant. The third company was shut down for several months, built a new facility and is now just getting up and running. They are the ONLY company of the three that is able to manufacture Amikacin in the US right now. They order the raw materials they need 18 months in advance. That many months ago they did not know they would be the only one's producing the drug. Basically, they are needing to produce 70% more product with very limited resources. Right now they have NONE. They project that they will have it back in stock in early October. Then they have to fill all of the back-orders, so that initial supply will go quickly. Another reason for the shortage is that Amikacin is a generic drug. It is not expensive and not reimbursed at a large rate. Therefore, it really is not a financial priority for them to develop it. It SUCKS!!! I have never been through this before and neither have my doctors. Getting the medication from outside the US is not even an option, because it is an IV drug and my US docs can't administer it unless they get it in the US. If I lived anywhere else I could get my treatment...but I live in the US and this medication is too cheap to be a priority. Can you tell I'm a little peeved? Was I really calling around trying to find my drug, just to be told it's on back-order? Look people, this isn't a sweater that I really want from a catalogue...it's a medication to save my life!

The Infectious Disease specialist at NIH will not be able to see me for a couple months, but Dr. Dazzle consulted with him on my case over the weekend. Have I mentioned how much I appreciate Dr. Dazzle? He has been amazing! We decided to move forward with a different treatment plan. This is really my only option for right now, so no more decisions to make on my part. Oh, happy day! That was probably the best news I've gotten in weeks! Maybe God does work in mysterious ways? My decision was made for me after all. No Amikacin = no other options.

Next Thursday I will be admitted, have my PICC placed, then start on an 8 week course of Tigecycline, Azythromycin and Lenasolid. The Tigecycline is IV...the other two are orals. We are biding our time. Hopefully, when the 8 weeks of IV's are completed the Amikacin will be in stock. I will then take that nebulized for several months. Hopefully, it will be as effective as it would have been in IV form. I feel like we're putting a band-aid on the situation until we can have access to the big guns. Have I mentioned that I'm a tad bit upset?

On a positive note, I will get to see my son off to pre-school next Wednesday. They allowed me to put off my admission until I could make sure my kids were in school and settled. Yay for flexibility!