Tuesday, April 14, 2015

Making Great Strides in CF

Holy Shit!  I can't believe how long it has been since I last blogged.  Life has been super busy for me.

On April 8th I was fortunate to take part in a guidelines meeting at the CFF in Bethesda.  I felt truly honored to be a part of something so important.  Plus I got to see an old nurse from 1990-1996 and see the CF director of my old clinic in Philly.  To be involved was very gratifying.  I try to do my part, I raise awareness, I make fun crochet goodies for CF fundraisers, I do Great Strides and I blog (well maybe not so much anymore lol).  But this, this was different.  This is something that will affect all of us CF adults in the future.  And it was amazing.  So much so I filled out an application to be a part of the patient advisory council!!!

Currently I am looking into organizing two paint night fundraisers for my walk team.  One will be in the Philly area and the other in the Boston area.  As soon as I get dates and details nailed down I will be sure to post.

I was inpatient in both November and January/February.  The January admission was much needed.  I started pulmonary rehab and I was on 3L of O2 with exercise!!!  I am back to not needing it now that I am out thankfully.  But I was super low, the lowest I have been since I moved up here.  I didn't even get a chance to prepare for my admission.  I went to see her on Tuesday and I wanted to go visit my family for "Christmas" that weekend and I had to cancel.  I talked her into letting me wait one night so I could get my things together etc.  Yeah it was that bad.  But I started to feel better in a week or so.  Unfortunately I didn't bounce back like I thought I would.  I was down to 27% and I only bounced up to 31%.  Down from 34% in December.  I go back April 28th and we will see if I jumped anymore now that the cold weather is gone.

Now for clinic update.  I have been considering switching my CF clinic.  Currently I am seen at the Children's hospital.  Now while I love my doctor, I am not keen on the whole children's thing.  Plus there is a disconnect between the clinic and inpatient.  And there is a lot of pressure to do home cleanouts vs inpatient because of the cost of CF care inpatient to the hospital.  So I met with the NP over at MGH today and I really liked it.  I have to decide what to do soon.  Like I said before, I have clinic on the 28th and I told the NP I would make a decision after that.  My pro con list has been read and re-read hundreds of times.  It is not a choice I can make lightly.  But on the easier side, I can keep all my cancer care and transplant appointments at BWH for the foreseeable future.  I asked both about switching CF centers and that has no bearing on either thankfully.

So there you have it.  Six months of updates in a few paragraphs.  I will be sure to update after my appointment.  And on anything else that may arise in the meantime.  I would like to get back to blogging so bear with me while I get in the habit again <3

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