Wednesday, July 15, 2009

Clinic Appointment Yesterday

Well I will give the good news first.

My DR was very happy to see I got the results of my genetic testing, even if it means that I have the cancer gene. At least we can be proactive about it now. He apologized for not having much knowledge in the area of Lynch Syndrome (which is what this mutation is called), but said he was willing to learn with me as we go along. He also found an article that he printed out for me to read. AND he has been calling the genetics DR religiously to make sure they called me for an appointment...see he does care!!!! He asked me how I was handling the news and told me to take it piece by piece so I don't overwhelm my self.

This is one of the reasons that I adore my DR to no end. He admits he doesn't have the slightest idea what this will entail with CF but he wants to learn and he sent me to someone he trusts for help. And he suggested that if I wasn't comfortable with them to go to someone else I may feel better with. But given that he knows these people and trusts them I am prepared to work with them. Also, that he was following up with these people to make sure they saw me and found articles related to this is awesome! See I love Dr H!!!!!!! :)

My weight is the same, at 118lbs so that too is good. My blood pressure was low for me. And he doesn't think that my occasional stints in the low blood sugar range are anything to worry about as of yet. He said to just be careful of what I am eating and I seem to know what to do to get the shaky, dizzy feeling to subside.

Now to the bad news...

I am avoiding the hospital by the skin of my teeth. If it wasn't for the GRE test this weekend and my SIL's shower next weekend I would have gone in. But I want to be out for both so he is calling in Colistin for me to try. I have to call him next week and let him know how I feel. Then 2 weeks from today I am going back in to see him. If there isn't a marked improvement I am being admitted. I'm down to 35% and 1.1L. Though not horrible and only down a little from my base line, I still need to catch it now. Plus getting SOB easily and being so congested is not good either. When I wake up in the mornings I can breathe out and mucus will practically fall out of my mouth - so sexy I know. Good news is if I do go in at least I can have the colonoscopy and endoscopy done while in. Kill two birds with one stone haha! I've never had a dramatic improvement from any inhaled abx (except inhaled cipro - which jumped me up then dropped me back down before the study was over), so I am not expecting to be all better from it. We will see, maybe it will work wonders for me.

So that's my news for the day. I shall keep everyone abreast of what happens I promise!!!


  1. Your doctor sounds awesome!

    I hope your able to get those PFT's up to avoid the hole if you can!


  2. I hope that the colistin does the trick and you can avoid the hospital!

  3. I'm thinking of you, and hoping you can avoid that hospital stay.


  4. I'm so glad you have a great doctor! I hope you can stay out of the hospital...I'll be thinking of you...

  5. Hey Amy!

    I just wanted to add my two cents. I used Tobi for a couple of years on an 'as needed' basis (when I was sick or needed a boost) and although I don't have factual evidence, I personally feel like it contributed to it being less effective for me. I assume you are cycling something already? I was reluctant to commit to cycling anything. But when I did start cycling, it just didn't work like I felt it should.

    I don't want to scare you away from using Colistin just when you're sick, but I just wanted you to know my experience. I use Colistin now and it is AWESOME.

    Good luck staying out of the hospital!