First Appointment at MGH

Today was a very long day.  But it was worth it.  I really like the clinic at MGH and I am going to stay there.

I had a full PFT appointment at 8:30 am so I had to be up and out the door by 6:30.  It has been raining for 3 days and I knew traffic would be a mess.  It was.  PFTs went well, I have not changed since April which is good.  They did a post as well and I shot up 3% from 37% to 40%.  It doesn't seem like much but it is a 9% increase which is huge!  I got a little panicky in the booth when they blocked the air for the test.  But I only had to stop once.  The woman was very nice and didn't get annoyed thankfully!!!  I never had that happen before.  Good old anxiety haha!!!

At 10:30 I had my clinic visit.  I saw the nurse and we went over everything.  It was probably close to an hour we chatted.  I had to give a history and medications etc since I am new.  I talked about some of the issues I have and things I would like to focus on.  We are going to do another OGTT to see how my sugars are.  I am going to monitor and log my sugars so when I see the Endo I have a good idea where I am at.  I scheduled an appointment with her for September.  I am making an appointment with the PT to do an exercise tolerance test and to set up an exercise plan.  I am going to see a gynoendocrinologist who focuses on hormones etc after menopause.  I never knew someone like that existed and I think it will be great to meet with them.  We are going to do an overnight O2 study to see how my numbers are when I sleep.  I haven't been using O2 when I sleep the past month or so and I have been feeling OK.  But I want to be sure I am not hurting myself by doing this.  I got a prescription for Ativan which I loooooove.  So thankful they gave me one for my anxiety.

After the nurse, I met with my new CF doctor.  He was great.  Very personable and open and I felt very comfortable with him.  We talked about everything, my history, action plan etc.  One thing he wants to do is have a 24 hour urine collection done on me to see how my kidneys are actually functioning.  Since IV Tobra has been off the table for a while but my kidney functions have always looked OK, he wants to see if there is a reason why they stopped the Tobra.  I was never really given a reason just that my numbers were off and we tried different doses and times to fix it but it didn't work.  So he wants to see if maybe there is some kidney damage that isn't showing up on my blood tests.  His main concern is that I am treated by the same family of antibiotics instead of getting two families in there.  So if we can add Tobra back in that would be good.

Overall I was there for 3.5 hours and I feel like I got so much accomplished.  I felt very comfortable there, not like I was out of place at all.  At BCH you get shoved in a room and I always feel like I am a caged animal.  AT MGH clinic I was put in a room but I was able to leave to use the restroom and when I left I didn't feel like I was just another person waiting to check out.  I chatted with the woman at the desk and it was nice.  I felt like they cared and like I wasn't just another patient on the list.  I missed that from my old clinic in PA.  I am so glad to have it back.

So a shout out to my 3 great Cysters to answered my numerous questions over the last few months and helped me get set up to move!!!  You ladies rock!!!

Now to send a good bye letter to BCH...

Drama Queeeeeeen!!!

I feel like a dram queen every night.  I know, me?!?!

The Prednisone has been great giving me energy and keeping the zzz's away, but it hasn't been great opening up my tight lungs.

Last night I started having a small, tolerable, panic attack because I was about to do my FIFTH breathing treatment for the day, only 2 hours after the last one.  I NEVER do that!!!  But I was about to go to bed and  my lungs were so sore and hurt so much, and were so tight, I wanted to try and open them.  Didn't work.  As I climbed into bed next to P, complaining about the pain and the uncomfortableness, I felt like some drama queen looking for attention...

We got home from our cabining weekend away around noon yesterday.  I immediately went into Prednisone induced overdrive cleaning and putting things away.  The laundry room shelves got re-arranged.  The TV stand in the bedroom got cleaned and sorted.  The floors were vacuumed.  The fridge was pulled out and I scrubbed behind it as well as the whole outside of it.  5 loads of laundry were done (4 sorted and put away).  And we took Major to the park to play for a bit.  All of that - besides the laundry - were done by 6pm.

I know I overdid it.  But we relaxed on Saturday and my lungs were having a hissy fit then too.  I am going to TRY to take it easy today, exercise, crochet, read for classes, and see if my lungs don't want to jump out of my body by 10pm again.

I also wish CF doctors could feel this pain and understand that yes Motrin on a daily basis in the dose I was taking is not fabulous for my kidneys/liver whatever, but fuck man, MY LUNGS HURT.

I was able to get an appointment for June 25th to follow up with the regiment I am on.  She said 3 weeks when I left but the scheduling was all screwy so I said I would call end of this week to schedule after July 1.  Decided to make it exactly 3 weeks (which ironicly the appointment I made is the same one I cancelled to go in last week to see her), so that if this does not help, I can get in to the hospital and start IVs before my 2nd summer class starts July 9.

MRI - results

Source

I hate that bright white, loud, claustrophobic machine with a passion.

Ativan helped though!

I was able to survive the whole 40 minutes without freaking out or even thinking of freaking out.  P was funny.  I texted him right before I left to go and he responded that with all the serious things I face, a TUBE scares me!  So true lol.  But fears are rarely rational.  And apparently can be subdued with some good drugs.

It was also nice to have the meds fed through my port.  Betty and I are definitely enjoying the new freedom from PICC lines.

Later on the weekend doctor came in and said the results showed the cyst had not grown since November and didn't show anything sketchy.  But I will wait to hear from my GI doctor before I start celebrating completely.  But its still good news and I will take it.  Now I just have to do this every 6 months to be safe....

WOW Pretty Low Numbers Again!

Its amazing how you can be sick and not even know it!

I had clinic today and we knew going in I would need a clean out.  My numbers were down slightly last clinic and Cipro really didn't do much for me.  I am more SOB and my energy level is low.  I cough all the time, as usual but I mean really cough.  I have an admission scheduled for next Wednesday, the 12th.

Seems I am on a somewhat downward trend.  I get back up but my lows are pretty low!

Today I blew an FEV1 of .93L or 32%.  Last clinic I was 1.10L or 38%.  And the healthy clinic after IVs were stopped I was 1.28L or 44%.  And last time I needed IVs (May) I was at .95L or 33%.  Before that I was 1.08L or 37%.  See where I am going with this?

I go up and then come back down.  I go up and then I come back down.

Oh well....that is the nature of CF correct?

Today though I was completely overwhelmed.  I am working hard to get everything scheduled to be presented in November for transplant and to get things ready for the wedding and starting back to school tomorrow.  I just had a "I want to hide all day in a cave and not come out" kind of moment on the way home from clinic.  I felt overwhelmed by the never ending appointments for CF and LS.  Bu constantly having to do this test and that test and go here and go there.  And all so I don't get cancer and I can stay healthy.

Then I started thinking about transplant again and if I really want it and will it be that bad to not get it and how long might I live without it. I am not dying so I could potentially have another 10 years with these lungs no matter how crappy.  Or I might only have 2 years.  I dunno.  Maybe once I hit the "dying" phase I will be more sure of things?  Maybe I will be more confused?  I dunno.  All I know is that I try to abide by my dad's company name - ODAT construction (One Day At A Time).

And furthermore, as I was leaving clinic I was just so bummed about my old doctor and not seeing him.  I really miss my old clinic. I don't like going to a children's hospital.  I don't like having to wait downstairs for 1/2 hour because there isn't a room ready for me (appointment was at 11 I didn't get in till 11:30 which is rare, usually they are on top of it and I don't wait).  I don't like the traffic and the parking garage and the parking fee and well you get my point.  It was just one of those days ya know....

Anxiety

I never realized just how anxious I was until this past weekend.  And I didn't realize just how awesome a job my anti-depressant did to alleviate my anxiety.

Sunday I had a bridal shower to go to for a friend, her fiance works with P.  I was all hyped up to go, got dressed up in a new dress I bought, did my hair, put on some cool earrings and out the door I went.  Then I hit people driving like slow pokes....and it was much harder to find than I had thought from the map....I was now 17 minutes late.  And no idea when she was supposed to get there (though she did know about it, I didn't want to be walking in with her).  So I find the place, drive in the parking lot and see its SUPER small and there is NO ROOM left. And to top it off, the shower is RIGHT there, out in the open with everyone watching me trying to turn around.  And it hits me, I KNOW NO ONE at the shower except the bride.  My heart started racing, my palms were sweating more than usual.  I knew I would have to walk across the field to get to the pavilion, and I knew if I parked right away and walked up, they would know it was me who was turning around (yeah who cares right?  This girl does cause she is a mental case).  I drove around looking for some parking and settled on across the street in the grass with another car.  I sat there for a good 25 minutes before I decided I was too stressed to go and left.  I couldn't face walking across the field with 100 eyes that I did not know staring at me.

I haven't done something like that in over 4 years....before I went on Celexa.

Do I need to go back on it?  Most likely.  But the chances of me going back on it are slim to none.  I don't want to be on the meds anymore.  I hate having to be on the hormone replacement, but I have to if I want to continue to have sex (TMI?  suck it up lol).  I just never realized I was that bad before.

Transplantation...Is it for me?

Lately I feel like I am hitting the old denial bottle quite hard.  Just thinking about transplant and all the tests I have to get done.  They sent me a list with every test I need done and when it is due to be repeated.  Its daunting.  Especially since I feel healthy and like I might not need to be transplanted for quite a few years.  

The test today, which I couldn't do, just really got me thinking.  If I can't handle that, will I be able to handle a cracked open chest and new lungs?

I just look at everything that needs to be done, all the recoup time, all the tests, medications, appointments and I wonder "is it REALLY worth it?"  What if I end up with shitty lungs again?  What if I reject fast?  What if I die in surgery?  What if...what if...what if?

The choice is mine right?  I know I have a family now, but I can say no right?

Maybe I need to step up my health game.  Maybe I need to kick it into high gear and work on staying healthy so I don't NEED a double lung transplant.  

Life was a lot easier when I was against getting a transplant.  Then again, I could actually breathe back then....