Tuesday, March 9, 2010

Day of Firsts! - edited with Pictures!!

Well today was the BIG day for me!  My first ever clinic appointment at my new CF clinic.  I decided to go with Children's Hospital since I would like to have my transplant at Brigham and Women's.  Now my current doctor, Dr. H, down in Philly suggested Mass General, but I was not comfortable with going to one hospital for clinic and then switching for transplant.  I like having them all together.

Today was doubly great because I also got to meet a fellow blogging Cyster!  She is currently in B&W so after my appointment I trekked across the bridge connecting the hospitals and made my first ever visit to a CF patient while in house!  Beth is adorable and so what I expected!  She has a fabulous personality that comes through on her Cystic Gal blog.  She was even cuter in person!  So tiny (we even chatted about the size of us being "normal" and not overly small) and she looks great.  If it wasn't for the O2 you wouldn't even know she needs a transplant!!!!  We chatted for a bit and then we got some pics.  She took them on her phone so once she uploads them I will add them to my post.  I am so glad I finally got to meet her and look forward to meeting her again once she is out!  And everyone say some prayers she gets her new lungs soon too!  She has been waiting a little over 4 months for the call!!!

Now for the clinic appointment update...

It was WAY different than what I am used to at Penn Presby but in a good kind of way.  There is no waiting room; they put you right into an exam room and everyone comes to see you.  I had PFT's, weight, height, BP etc all done in my room.  And everyone gowns and gloves up when they come in.  The check in staff were super nice too.  I love nice people they make the visit so much more enjoyable ya know?!

My weight is up to 120 lbs!  Sheesh I need a diet, or to start eating healthier and exercising.  My lungs are the same as always at 1.24L or 42%.  But my small airways improved slightly!  Up to 18% from 14%!  Awesome yes!!!  And my FVC is at 63% which is down from 65%.  Overall it was a great visit from that standpoint.

The part I wasn't so happy about was the doctor I saw  She was nice enough but she was kind of cold.  She harped on me for not being on birth control of any kind, even after I told her the 4 different types I have tried with the same outcome in the end.  She said that is a big concern of hers with me.  I guess I look like I am gonna get preggers soon?  Beats me.  But I am an adult, who MADE the choice to not be on anything as of right now.  If I were to get pregnant fine, but the chances are pretty slim - yes I KNOW I can please don't preach about this thanks :).  So she told me I need to see a gyno asap to figure out what to do.  We will see.

She also questioned a lot of the things my current doctor does and it made me feel very defensive.  It was in the manner she spoke to me about the things - like what he had done was ridiculous!  I take Zithromax everyday, just a smaller dose, which is not the norm.  Most people take it M-W-F.  She was quite thrown off by this and said she will probably change it now that I am more compliant about taking my meds (the reason for the daily is I would never remember to take it only 3 days a week).  And there were other things, but I am not going to get into it all.  Now I am giving her the benefit of the doubt since it was my first visit, and I have never seen another doctor besides Dr. H.  So a lot of what I think I was experiencing could be all me!

She was very thorough with the questions and answered all of the ones I had prepared before I even had a chance to ask them!  That was a plus.

So my game plan is to find a local PCP and GYNO before my next appointment (April 27th).  And to see what Dr H has o say next Wednesday!

Beth and I!!


  1. Amy, I know a girl that has the same doc. If you want I can ask her how she feels about her. I told you they were compliant there as far as no waiting room and gowning up. I'm sure it will take some getting used to but as you said, the beauty of it is they are affiliated with Brigham so your admits(and yes potentially tx) are fairly smooth. If you have any questions let me know(I may have a few shortcuts for you to miss some of the traffic as well). Glad the appointment was good all in all.


  2. dudette, so glad to meet you today and YOU are just as cute in person, as well!

    you know how i feel about dr. d. i do not feel good about her. it's pretty well documented around here, so this is the one time that i will just say it.

    particularly on the issue of adult women, birth control, and the moral/ethical choices we are empowered to make. her philosophy, i believe, is off the mark, or the very least direspectful. in my case, it cost me in the lungs. she was blinded by my refusal to be on birth control and never considered my pulmonary endometriosis as the reason for my bleeds.

    sheesh. that is all i will say about that. there is more, but that's the only part that i really feel strongly enough to say publicly.

  3. Meeting up with Cysters is always a blast :) Can't wait to see pics!

    This is my third CF clinic and I always find the first few months difficult. Hopefully she will warm up a bit over time. As for the Zithromax I take mine daily as well, always have. I would forget to take it if I only took it three days a week.

    Hopefully things will improve a bit in regards to her being cold. Glad every thing else went well though!

  4. Why is that a bad weight?? I think it's excellent! I weigh a tiny bit more, but happy with it! Alice

  5. Changing Doctors can always be hard. I hard to change my PCP and start going to B&W for my transplant at just about the same time. Both my PCP and B&W doctor's have questioned me about not being on bith control but my PCP think that I shouldn't take the pill or depo shot because of bone density issues. My husband and I tried to get pregnant for years...it didn't happen. Since I am married my PCP suggested that my husband gets clipped. I have not brought that up to him yet. Not a conversation I am looking forward to.

  6. Alice lol yes it is a good weight but nothing fits right and I think it is affecting my breathing (probably just in my head though haha).

    Thanks for the comments everyone and CG I know ;)

  7. This comment has been removed by the author.

  8. I just really like your list of things you want to do & have done. I was just wondering how you strike out the ones you have completed? I am considering making a list as well. . . Did I mention I like it :) I would be more than happy to help you with the one about making a scrapbook :) I have done one for another CF friend as well. Let me know, I am serious.

  9. Thanks Jamie!!! I was thinking of doing one either for my trip to Europe or one for my brother and SIL of the kids :)

    to strike you do < s > (whatever you want to strike without the parentheses) < / s >
    and no spaces! I couldn't post it with the spaces.