Wednesday, March 4, 2009

Clinic...and study visit 1

It went fairly well today. I got there early since I knew I had to talk to the woman about the Inhaled Cipro study. She gave me the paperwork and I signed off on it all. Sounds awesome to me! Double blind placebo controlled study, which means I may or may not get the drug. But either way I am excited to do it. I had blood drawn, urine test to make sure I am not preggers (passed phew LOL), sputum sample and x-rays. I was only there for 3.5 hours today which surprised me. I thought for sure I wouldn’t leave until 5 or so. But I was out of there and home by 5!!

I had a fabulous time talking with the woman! I learned a lot about Dr H and CF. We chatted about the different schools of thought (i.e. Danish method, genes vs. compliance) and she and I have very similar thoughts. She also has very similar thoughts as my Dr. She was telling me just how well respected my Dr is in the CF world. All the different conferences and lectures he has given on the subject. It made me feel super lucky to have him as MY DR!!!!!! And also that his dad was an Arizona state senator back in the day!! And there is a hall named after him at Arizona University! COOL!!!!!

I must say that now my lungs are KILLING me from all the walking I did. we had to walk around Penn Presby for the x-ray, blood work, etc. And of course it's not like I just walked I had to talk the whole time too. That went well LOL...huffing and puffing but still determined to talk!!! So now I am paying for it was cold out!!!!

Now for my DR visit. I lost 2 pounds (down to 119 - still great) which I had expected given my shitting issues. He said to try Miralax and see if I can clean myself out. It could just be built up sludge in there reeking havoc on my system. So looks like I will be shitting my brains out this weekend, voluntarily! If that doesn’t help I am to call him.

My lungs didn’t change at all. Seriously! My Liters last time were 1.24 and they were 1.24 this time too LOL! FEV1 40%. My HR was 104 and my SpO2 was 94. I didn’t get to see anything else since I was never alone and was always talking to someone. I was busy today LOL!!

I told him about the bloody noses and he said I need to huff more in the mornings so I don’t put so much pressure in my sinuses and pop the vessels and to try this thing called nasal gel which is supposed to help keep you all moist in there. We will see about the gel, I might just kick my ass and get into irrigating more frequently…ok actually doing it!

He also asked about my O2 and HR during the day and I told him it ranges from 100-115 at rest and around 93-94%. So he said to keep track and if I am around that at home to wear my O2 and see if it helps bring me down to around 85 HR. That is the only thing that made me kinda nervous. Almost like telling me full time O2 is needed though he didn’t say it. So I will be keeping a book with me to record my numbers and see how everything goes. I want to also make sure I am saying what I was doing when I checked.

That is all for now!

Oh edited to add:

I should mention that as part of the gene testing for colon cancer I will be seeing a gastroenterologist. So if the Miralax doesn't work hopefully they will have answers! Now if they would just call me back.......................


  1. sounds like a lovely visit woman! regardless of unfortunate 02 news!

  2. Good luck getting back into bowel health. The digestive system is important...and cranky!


  3. Yep, sounds like it went well, but I must admit, I don't like the response to your abdominal pain. I hope the miralax works for you, but if it doesn't, you may need to go to the ER for an ultrasound on the spot the next time you have that pain (or if you can get in to see your doc or a GP same day, that would work, too). Guess cross that bridge when/if you get to it. Hopefully it's just a blockage and the miralax will do the trick!

  4. Amy,

    wow,what a day! Whew! I hope you see some benefits from the study!
    The part about the genetics for colon cancer?? What was that all about, if you don't mind me asking. Mel and I have been talking about cf and colon cancer. We know of several cf'ers that have died or are battling colon cancer. We were wondering if there were any studies going on about it....then I read this on your blog tonight....hmmmm.....interesting.
    Take care, hope you don't 'shit' tooooo much! :0

  5. I hope you get some relief from the "issues." And glad the rest of the visit went well. Rest up!

  6. Can't wait to hear about the inhaled cipro!!!! Also, I would love to hear more about your doc's views :) We would all learn a thing or two I'm sure :) :) :) I'm assuming he's anti-Danish method hahahahah. Maybe he's more like Warwick instead?

  7. Hey Ames I hope you start shitting soon, Shawn says to take Magnesium but I wouldn't do it until you ask your doctor.
    Hot water and lemon in the morning is a nice way to clean and stimulate your system.

    Hey B&W has done well by us so far so good and they are really kicking ass with transplants, when Shawn was in on Monday the team had done two transplants in the previous 24hrs! Practice makes perfect!

    I'll be rooting for your pooping!!!

  8. Have fun with the Miralax. ;-)

  9. Thanks guys!!!

    Jada -

    Colon Cancer is genetic in my family. I am going to get tested for the gene to see what my chances are of getting by age 35. If I have the gene my chances are 70%. A VERY LARGE portion of my family has had it before 35 so my DR is obviously very concerned I will also inherit it. Good genes here, good genes ;)

  10. Wow that was a busy day. I really hope the mirilax will get things going.