Saturday, October 30, 2010

some more waiting? don't mind if i do!

down in pre op.  waiting for the visual go ahead on the other end.  when we get that call they'll take me back.  until then, we wait.  maybe an hour.

Ate my first immunosuppresive drugs

SoluMedrol 1000mg IV  - steroid
Prograf 3mg
Cellcept 1000mg

Pills down the gullet at 3:18 and IV started.  My nurse said the plan is for them to come get me at 5am to take me down to preop to get me prepared. 

Waiting to sign some release forms now . And owie, my arm... solumedrol in a dinky peripheral iv kind of stings. 

Today I got THE CALL

I mentioned to several people that because I was going to spend so much time and money on my Halloween costume this year, I would probably end up not getting to wear it because I got a call for lungs.

It was 2:30 this afternoon, I was at the salon, my dear friend Jackie was helping me with my Gaga wig for tonight.  Chris' family had a Halloween party and it was going to be my big costume night for the holiday.  She was teasing the yucky synthetic hair and Kayla brought me my phone.  It was ringing and the caller ID said "Fairview"... I stopped and said, "Oh my god.... Hello?"  It was my coordinator, she asked how I was doing and I asked the same, she then said, "How do some new lungs sound?" I think I replied with 8 or 9 "okays" before she could tell me to calm down (I think at this point Jackie asked me "Is this the call for lungs?" and I was nodding my head) - and then we got disconnected.... so I waited a second for her to call me back, meanwhile, dialing my dad on the salon phone.  I got the info from my coordinator, hugged everyone goodbye and drove (sped) home while calling mom, dad, aunts, boyfriend and other important people.  I think I made 6 phone calls on the short drive home.  I ran inside, grabbed the things I knew I would want (in addition to the bag I already had packed in my car) and went back outside to meet Chris, who had dropped by my house to kiss me goodbye.  We pulled out of the neighborhood just as my mom was pulling in, so she met us at the hangar to say goodbye.  The plane left about 4:15 to minneapolis and we arrived in my room at the hospital at 7 after an ambulance ride from the airport.

When I got here I immediately showered with the special (code for nasty) soap.  They drew lots and lots of blood, did a chest xray, started me on iv antibiotics and ALMOST gave me my first dose of prograf and cellcept BUT the coordinator called just as i was lifting the cup to my mouth and said hold off on taking them, because the people on the other end were still trying to find homes for the other organs.  All I know is that the lungs were holding up fine the last I talked to anyone which was a couple hours ago.  At this point we don't know if it will be minutes or hours before we hear anything more. Anesthesia has been in to talk to me and they told me to get some rest - yeah right!

I will try to text an update when I hear something, but if I don't get the chance, my mom should be updating my caring bridge site:

As Rocco says in the Boondock Saints  "I'll catch you on the flip side!"

Friday, October 29, 2010

2/2: e link to the right for updates from mom! Xoxo love you all!
1/2: Got the call about 245, on the plane now headed to minneapolis for lungs!!! Will update when we land and get to the hospital! Check caringbridg

What's next?

Tuesday morning did not go as planned.  My doctor decided she did want to do conscious sedation during the procedure, so I had to get an IV placed.  The nurse blew the first vein but got it in the other arm.

I've never had to take out my contacts for conscious sedation before, so I was unprepared to do so, leaving me nearly blind the rest of the time I was at the hospital.  They wheeled me back and the last thing I remember was looking at the lights on the ceiling thinking "I wonder if they've already given me something" and just then the anesthesiologist says "you're going to feel some medicine"..... An hour later I am back in my bed, first thing I do when I open my eyes is say "Did it work?" and my doctor just shook her head.  Cue groan, roll onto side, pull covers over head.

What I found out later was that my doctor tried unsuccessfully to locate my fallopian tubes for 30 minutes.  This whole procedure from start to finish should take only 5 minutes.  Because it's the wrong time in my cycle (thanks to insurance and administrative errors delaying us), my uterine lining was too thick to have good access to my tubes.  Usually a patient is prepped for this procedure with 30 days of hormone treatment to thin the endometrium, but because of my previous history with blood clots, I wasn't able to do this and we tried to time it with my cycle.  Now my options were to try again in 3 weeks and hope it goes better or to have a Lupron Depot injection and try again in 3 weeks.  The injection suppresses estrogen production and prevents endometrial tissue growth.  Thus for the month that the injection is active I will experience menopause symptoms: hot flashes, emotional lability, night sweats, headache etc... I opted to go with the injection because I would rather only do this once more than possibly twice more.

After a shot in the booty, I was on my way.  My doctor gave me a hug yesterday and told me "You might hate me, but it will be worth it"... I hope she's right... about the being worth it part.  I hope this works!  So far I'm not a raging bitch, my right cheek is just a little tender.  I'll give it a few days before I decide whether or not I'm willing to do time for homicide.

Friday, October 22, 2010

Loaded Update

The past three weeks have been extremely busy and I will do my best to cover it all!

The Big Decision

I've always been uneasy with the idea of having children, knowing that as someone with CF, I would be passing on a copy of one of my defective CFTR genes.  After several years of thought, I've come to the decision that I don't want to have children of my own.  I don't need to elaborate on all of the reasons here, but this is what I've decided.  My doctor and I have decided that I will undergo an Adiana procedure, which will block my tubes off (similar to tubal ligation, without any incisions) and prevent pregnancy.  I'm actually very excited about it.  It's something I've wanted to cross off my list of things to worry about and now I finally get the chance to do it!  I wonder if this will earn me a Darwin Award?


When I was admitted several weeks back, I had made a decision to stop taking Ambien.  I have been taking it for over three years and do not want to be on it anymore.  I had my last half of a pill the first night I was in the hospital.  Going off sleeping pills in the hospital turned out to be a great plan because they were getting me up at 5:30 in the morning for my first CPT, and I didn't have time to take naps during the day.  I was ready for sleep at night and slept well, despite the fact that people were in and out of my room through the night.

A little over two weeks ago I also began tapering off one of my two antidepressants (Remeron).  know it will take several weeks for my body to adjust, and when I go back for another check-up, we'll discuss going off the other one.  I feel like right now is the best time for me to be ridding my pill box of unnecessary pills and my relieving my liver and kidneys of extra work.  Post-transplant immunosuppressive drugs are very taxing on these organs, and the fewer medications I have to take, the better.  I feel like I was put on antidepressants prematurely, at a time when I was just learning that I would need a lung transplant, at the age of 21.  I don't know whether it was time or the drugs that eventually had me less terrified of the prospect, but I feel like now I've developed sufficient coping skills and healthier outlets for the many emotions that accompany chronic illness.  It's time to see if I can fly solo!


Right before I left the hospital, I began using the pedal machine to get my legs ready to hit the ground running (or walking).  I joined the dailymile (friend me on there to follow my workouts!) and got three in before I was discharged on the 29th.  I expected to have extreme exhaustion and muscle fatigue accompanied by lots of low blood sugars after I got back to my normal routine at home, but experienced none of those things at all.  I'm not complaining!


I went home on 1 week of IV vancomycin, which was manageable.  I do feel TONS better than I did when I went into the hospital.  I'm still having occasional pains in my lungs, but not constant or consistent.  Ibuprofen seems to take care of it.  They are staying clear and for the most part I feel well!


For Halloween this year, I decided to go big - Lady Gaga.  I'm making my costume for the first time ever.  I don't know how to sew but I do have a vague idea of how I'm going to go about this outfit.  The shoes are finished and they took me about 8 hours to do.  I will post more pics as it progresses, but here are a few teasers.