Out of Stock!

I had a great, 2 1/2 hour long appointment with Dr. Dazzle today. We have a plan...sort of. You see, Dr. Dazzle, would love to start treating my m. abssessus. However, the Amikacin, one of the most important drugs that I need to supress this infection, is OUT OF STOCK! In preparation for my appointment the team attempted to get their hands on some Amikacin and they got the same story from every supplier...none in stock. What the hell!?!?! The hospitals don't even have a back-up supply. So if you are from outside of the US and you think you can get your hands on some Amikacin for me, I am willing to pay top dollar! I feel like it's Christmas time and I'm on the hunt for zhu zhu pets... Grrr!

Dr. Dazzle assured me that we have some time. No major damage will be done in the time we take to figure this thing out. My second culture came back positive for mycobacterium, but they are going to wait the few weeks to ensure that this second is also the abssessus and not avium strain. Dr. Dazzle also wants me to go see the CF/mycobacterium guru. He's supposed to be the best in the US. Dr. O practices Infectious Disease at the National Institute of Health in Bethesda, Maryland. Hence, I'll be packing my bags to head to Maryland soon. I love NIH! So many important medical discoveries have come out of that place. I participated in a clinical trial there about 12 or 13 years ago. I feel very confident going there for another opinion. I do not, however, feel comfortable seeing an Infectious Disease doctor. Couldn't they call it something else? I can just imagine how rampant my OCD is going to be while sitting in the Infectious Disease waiting room. I think I'm going to have to double mask and double glove. No, Dr. O, I will not be shaking your hand! Crap!

Dr. Dazzle also told me some good news about treating the m. abssessus. First, he consulted with some doctors at other centers about the possibility of doing these antibiotics as a combination of orals and nebulizer treatments. There have been a handful of people very recently who have had some success with this treatment method. However, it is a brand new approach and is not proven. My other option is the IV antibiotics. Since I know a few people who have had m. abssessus and have been on IV's anywhere from 7 months to 2 years, I assumed that would also be my plan. However, Dr. Dazzle said that our goal would be for me to tolerate the IV's for 4-8 weeks! That's it! What a relief! The goal will be 8 weeks, but if they get too toxic we will pull the plug. This is the more standard method of treating m. abssessus...a bit more proven.

The direction we go is completely my choice. Honestly, I think I am going to go with the IV's. I don't want to spin my wheels doing something that may or may not help. I would rather do the IV's. If they get too toxic we can pull the plug, knowing that we still have the orals/nebulized option available. It will be so helpful to hear what Infectious Disease guy has to say!

So, Dr. Dazzle and I talked for 2 1/2 hours and not only about mycobacterium. Many other things were addressed. I am vitamin D deficient. I've known this, but have been too lazy to take it seriously. Honestly, I doubt that anyone who lives in Cleveland is not Vitamin D deficient. The sun does not visit us all too often here in C-Town. What I didn't know was that my level is 10, where normal starts at 50. Some very recent studies have shown that vitamin D deficiency may cause increased lung inflammation. Hence, I am starting 2000 IU's of vitamin D daily.

I have also not been on ANY nebs for many years. I always wondered why. It turns out that my previous doctor didn't think they were necessary. Dr. Dazzle thinks I should be on something. We discussed the differences between Hypertonic Saline and Pulmozyme. Since I have a past history with Asthma we decided that we would start out trying Pulmozyme. I get the first month free, so if I don't like it we can always switch to the Hypertonic Saline. So I will now be doing Pulmozyme every night during my Vest treatment. I am also going to continue on Doxy until we get my treatment plan all figured out. It keeps my cough at bay a bit, so why not?

Anyway, I have nothing but positive thoughts about the future. I really feel like Dr. Dazzle has my best interest in mind. It was interesting to find out that he graduated high school that same year as me! I love that we communicate the same way. We both start every sentence with the word "so". Here's how it went...

Me: So what are my chances of becoming diabetic in the future?

Dr. Dazzle: So there really isn't a percentage I can quote you. It's not certain that you will become diabetic and the fact that you are pancreatic sufficient works in your favor.

Me: So what are the odds that I will become pancreatic insufficient in the future?

Dr. Dazzle: So, again, I don't have any statistics to quote you, but as a CF patient you already have a compromised pancreas. It's just that your level hasn't reached to point yet where it indicates that your pancreas is not functioning. However, we typically start enzymes based on symptoms, not strictly on levels. So just keep me updated with your symptoms and if you see any changes in your digestion.

Me: So then I would start enzymes?

Dr. Dazzle: So, yes, but probably just a couple pills prior to each meal.

This went on and on for 2 1/2 hours. It was the greatest! Today's appointment was the greatest! I truly felt heard, and that meant the world to me. I'll be starting some more treatments and packing my bags for Maryland soon! It's slowly coming together :-)

By the way, I'm serious about the Amikacin. For all of my Canadian, British, Irish and Australian friends out there...if we can find a supply Dr. Dazzle is willing to do what it takes to get it here... Let me know!