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.


Pam said...

Hey Justine, you did a great job on the Lady Gaga shoes. They are awesome! I also signed up to dailymile hoping it will help me stay motivated and I sent you a friend request.
I also commend you for making the tough decision about having or not having children. It isn't an easy decision, but I also decided not to have children and I had a tubaligation with no regrets.
Glad your lungs are better and I hope you don't have to wait much longer for your call for lungs.

Jess said...

Congrats on trying to get off the extra meds, they're great when you need them but its even better to NOT need them. I'm trying to wean off Remeron too, its been rough. Ambien is next on my list.

Amberlyn said...

'The Big Decision' - Smart, I was just told that due to the Coumadin I'm on on top of the Prograf and various other meds, Children wont be an option :( bummer! But I respect your mature decision, and taking care of it now, wish I had done the same!
Congrats on stopping the extra meds, you're right it is VERY taxing, and they need all the brakes they can get!!! Yay on working out, I had to do Pulmonary Rehab before transplant and it was the best decision ever, it helped me get my feet back on the ground quick post transplant! I'm so glad you are feelin better!!! Keep up the great work, it WILL pay off in the end :)

.... and Lady Gaga, woohoo thats pretty awesome!!! :)

Love and Prayers for Texas

Allie Weese said...

Hey Justine, I meant to comment you a long time ago but I got distracted. How has your transplant been going? You have not updated in a long time.
I am similar to your age and I am also thinking about having sterilization surgery, I have thought about it for many years, and for all the same reasons as you.
I also have stopped taking ambien. It was so hard on my body. It felt like it lasted many days in my body and made me feel exhaused during the day.
hope you are doing well!