20 Questions???

Seriously...I've already got 20 questions for my new CF doc! For many years I have given my cancer patients the advice to keep a notebook with them in the days and weeks prior to an important appointment, so they can write down every question that comes to mind to ask their oncologist. Research shows that people on average have 5 questions that they would like to ask their physician, but they typically only get to ask 2 or 3 of them. They either forget, become afraid to ask or the appointment time just runs out. I am going to ensure that I don't forget, so I've been carrying my little pink notebook around with me everywhere. Here's what I've got so far. I know that there are no answers for some of them, but I'm going to ask anyway. Let me know if you think of any more good questions!

This is just a little peek into what's been circling around in my brain for the past few weeks...

1) Can I get a new Flutter? My old one is no longer of use, since my children thought the metal ball inside was a toy. That most important little ball is missing for good...grr.

2) Do you think my symptoms I've been having over the past 2 years are from the mycobacterium abssessus or did the staph I've cultured my entire life just start acting up?

3) What are the dangers of waiting to treat?

4) If I do these long term antibiotics, should I get a PICC or a port?

5) Do I need to start this treatment right away or can I choose when I want to start?

6) Are there any stats specifically for the Delta F508 & R117H gene mutation?

7) Do those with R117H have the same life expectancy as the general CF population?

8) What is the probability that I will get CF related diabetes eventually?

9) What is the probability that I will one day become pancreatic insufficient?

10) I read that people with the R117H mutation are more susceptible than other CFers to getting Pancreatitis. What is my probability of getting Pancreatitis?

11) What are the symptoms of Pancreatitis?

12) I know that one of the side effects of one of the antibiotics I will be using is neutropenia (low white blood count). I already have a low white count. It falls between 2-4, when normal is 4-11. Can I get Neupogen injections to increase my white count and prevent complete immune system failure?

13) I am also concerned about hearing and vision loss with these antibiotics. What would we do to monitor this and how often?

14) How often will I have to infuse (how many times a day) if we do IV's?

15) How long do you anticipate I will need the IV's?

16) How long will I have to be in the hospital initially, knowing that I have to be desensitized from the Clarithromycin?

17) I went to the ER last time I was on IV's for chest pain, which ended up being pleurisy. I have had pleurisy a few times prior to this. I had a 4 day episode again a little over a week ago, but in a different area of my chest. Do you think this is pleurisy?

18) I read somewhere that there is not cure for m. abssessus, except for a lobectomy or lung transplant. Is this true, and if so is the goal of treatment remission and not cure?

19) I also read that only 56% of patients respond to this long-term antibiotic treatment. Are there indicators that might predict success?

20) Last time I was admitted my thyroid level was low. Can we check that again?

OK, ok...I've got a few more than 20! I'm glad I have an hour long appointment!

21) If I likely got this from my own household water, is there a way to check if this is in my water-heater or anything I can do to prevent getting this again?

22) Should I be on Hypertonic Saline? It seems like the cool thing to do nowadays!

23) Right now I do one Vest treatment a day, which can be nixed if I do my aerobic work-out. Should we continue with this regimen, or should we increase the frequency?

OK, now that's all I've got for now. I still have 3 days left, so we'll see how many I have by Friday???