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,
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
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...plus 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
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.......................