Wednesday, April 29, 2015

Clinic Update

So clinic went better than I had expected.  The past few weeks I have been waking up at night coughing my face off.  I feel like I have a tickle in my lungs that just won't go away.  I prop myself up some more and fall back to sleep once the fit is over.  So I was kind of expecting my numbers to be the same or even down some.  However, they were up!!!  I went to a whopping 37%!!!  1.11L, I haven't been that high since November right after that clean out.  So the cold weather leaving definitely helped.

There is a good chance I have bad allergies so she suggested I see an allergist.  Adding it to my to-do list.  She recommended I try benedryl if my eyes are too much for me.  Right now I have raw marks under my eyes from itching.  First thing she said to me when she saw me (after hellos of course) was "what happened to your eyes!?"

She introduced me to one of the pulmonary resident's at BWH who was making his rounds with her.  So I got to speak with him first.  He said from my chart and what I told him that I probably have undiagnosed and untreated asthma.  Something I have been saying for a few years now but no one listened.  So he mentions Spiriva, and I am getting an rx for it!!!  Kind of excited about that.  I have heard great things about it and cannot wait to see if it helps my inflammation issues.  I am also doing a week of Prednisone to see if that helps my allergies.

And finally, I did it.  I made the choice to leave my clinic and start new at MGH.  I have an appointment for June 2nd tentatively set up.  I was a little hesitant at first because of the changes they want to make with my care, but then when I went to check out and make a new appointment, they couldn't do it because the summer schedule was up.  So I am supposed to call back in June to make an appointment.  But I will just have to call to get some things sent to MGH and then tell them I am leaving.  No need to cancel any appointments huh?

Oh and OMG!!!  I head back from Dr. H!!!  From Philly.  OMG I was so excited to see his email pop up!!!  He told me to stop in any time I am down there and he will make time for me.  I cannot wait to see him!

Tuesday, April 21, 2015

Brushstrokes for Breath!!!

I have launched a tee shirt campaign to raise money for my Great Strides team!!!

If you are interested in purchasing a shirt to show your support visit:

Brushstrokes for Breath tee shirts

I am doing a series of paint nights in both the Boston and Philly areas to raise money as well.  These shirts are the by-product of those fundraisers.

I am super excited and cannot wait for the paint nights!!!

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