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Tuesday, November 2, 2010

The good and the bad.

Boy, we are sure enjoying our new home. This is something Ryan and I have talked and dreamed about for a long time. We are so excited to finally make it happen! Thank you to all who helped get us here, you know who you are!

Mr. B is loving his new home also. He has plenty of space to run around and he is loving our driveway. He drags out his tractor and flies down it! It’s only a matter of time before we have a complete wipeout!

Ben 19 months 214I’m enjoying our driveway because my husband can now wash our cars- something we really missed while living in an apartment. Ben was so excited to get out and help Ryan.

Ben 19 months 192He’s going to make such a great husband one day :)

It didn’t take too long for car washing to get boring and for Ben to decide he’d been over-worked thus needing a break.

Ben 19 months 203   Some how water just tastes better when it comes from the hose versus his sippy cup :)

Now on to the potential bad…. Ben’s preliminary culture results are growing a “gram negative rod” which could be a couple things. At the top of the list is the dreaded pseudomonas. The bacteria that we just spent over two weeks in the hospital fighting off. The bacteria that wasn’t supposed to be back for a long time.  This was heartbreaking news for Ryan and I.

However, we aren’t giving up. The final results will be in tomorrow. It could also be the H-flu which Ben has grown before. This will be treated with antibiotics and should go away in time. Or it could be E. Coli which CFer’s can sometimes pick up. This will not be treated, just watched until it goes away on it’s own. Of course, we are hoping that it’s either E. Coli or H-flu because they are a lot easier to treat. We’ll know the results tomorrow. Please continue to keep Ben (and all other CFer’s) in your prayers.

I have also decided to leave the Cystic Fibrosis Pharmacy. I have not been happy with their services for awhile but have stuck with them because I know mistakes can happen. They are supported by the CF Foundation and put money towards research. Something I would like to support.

Well, we were still waiting on our Pulmozyme that was ordered two weeks ago for Ben. We had decided to go ahead and try Pulmozyme since he wasn’t tolerating the HTS so well. Anyways, after I got our culture news, I decided to follow up with them and figure out what was going on. Turns out they sent it to our old address in Santa Rosa over a week ago. An address that I have repeatedly asked them to delete because it continuous held up our prescriptions. Over and over I was told it was not going to be a problem. It was extremely frustrating to find out it was delivered to the wrong address. Thousands of dollars worth of medicine has now gone to waste. While they were extremely apologetic, I asked them to close my account because I couldn’t take the stress of ordering from them anymore.

I do not mean for this post to stop others from using the CF Pharmacy, it’s just something I needed to get off my chest. There. I feel better. Thanks for listening.


  1. I don't like any of the mail order pharmacies..We have a drive-up CVS pharmcy a couple minutes from our house and they are wonderful!!! They always go above and beyond to get things covered for Radek AND if they didn't get an auth or precert in time they will still give us the medicine and take care of the precerts later...I really believe it makes life easier just to deal with a pharmacy close to home, I just feel that face to face contact gets things done MUCH better and it's so much easier to hold people accountable!!!!

    Oh and Rad never gets antibiotics when he cultures the hflu or ecoli..he always got rid of them on his own...Either way I will be thinking of you guys and let me know as soon as you find out!!

  2. I have had issues with the CF Pharmacy as well. I use them to order enzymes, but for anything else I go to the Publix close to our house. They have been great at getting me what Bryce needs in a timely manner. Over time they have gotten to know Bryce so that is really nice. It's nice to actually know and SEE the folks filling Bryce's meds. Prayers coming Ben's way!

  3. OMG, I can't believe your post is about pharmacies too!! I just completely when on a rant about pharmacies (and pulmozyme) this morning. Ugh.

  4. I had issues with CF Pharmacy as well when we switched insurance. I liked supporting them, but it was causing more stress then I needed. I let them know a month before we switched insurance and gave them the information and they still billed the old insurance. The old insurance tried to collect the over 2k, from me, for the monthly dose of Pulmozyme. CF Pharmacy told me I needed to pay it and they would look into paying me for the reimbursement. To make a long story short it took months of calling and checking etc. to finally get them to get the billing right. I refused to pay my old insurance company. I felt I had given CF Pharmacy enough notice and made them take care of it. I did switch pharmacies and have not regretted it. I love Foundation Care and we use CVS Specialty Pharmacy for Pulmozyme and TOBI. Prayers for no PA in the culture!

  5. Oh' what a cute boy! I love him. I agree with you there, "He’s going to make such a great husband one day :)"


  6. We use A-Med, they are based in California and they literally have things delivered to our doorstep in 24 hours. They have been amazing and have never screwed up. If you want info. let me know!!! Sorry about CF services, we used them years ago, and had issues too.


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