Saturday, August 31, 2013

A few steps forward, a slight step back

Whew! What a week it has been.  They have kept me busy every day for what feels like all day.  I don't think I have been this busy since high school!  I do like it though.  It definitely helps the waiting go by faster and helps me miss home and school less when I am distracted all day.  Most of my days here consist of pulmonary rehab, a short break in the evening and sleeping.  (Yes you read that right no eating, I cheat and do that in my sleep :p). I am really enjoying pulmonary rehab and have found that the time goes by rather quickly!  When I was first presented with the idea of working out for 4 hours straight a day I was a a little freaked out (that's a long workout for anybody let alone someone with 20% of normal lung capacity) I had also heard that people think the rehab is really tough.  Luckily they give us plenty of breaks and aren't all that hard on us.  Yes they make us work but for someone who has gone years trying to keep up with my normal lunged peers a workout class tailored for a weakling with crappy lungs is a piece of cake.  

Everyday we do an hour long floor class and then walking, biking and weight lifting stations.  It reminds me a lot of my aerobics class from high school, only we do the same thing everyday.  For the floor class we all "lay" on mats on the floor.  I put that in quotes because most people have a large wedge shaped thing under their mat so they look more like they are sitting back at an angle than flat.  We use a mix of leg wrap weights, stretch bands and hand weights as we lift different appendages.  It is very similar to a Pilates floor class though WAY easier.  After the class we are split into groups to begin stations.  They ease you into working out so Friday (my 3rd day of rehab) was my first day of getting to bike and walk for the full 20 minutes (each one for 20 mins).  It is quite a scene sitting at the bikes looking out over the gym at all the people huffing and puffing their way along the track or at the weight stations, pushing their walkers along, with several tanks of oxygen and what is practically a gas mask strapped on their face in order to keep their sats up.  I am sure that anyone who walks in the gym without knowing what is going on would be quite puzzled, it is definitely the craziest gym crowd I have ever seen!  After all your stations are complete it is off to the classroom for that days lecture.  The topic changes each day and is meant to prepare you for different aspects of post transplant life.  So far I have attended anatomy and physiology parts 1 and 2.  (a breeze compared to college A&P!)

The best part about rehab is getting to meet all the people.  There are about 15 people in my "class" though this changes a lot.  New people join, older students graduate (occurs after you attend the mandatory 23 sessions) and it seems someone is always absent for clinic visits.  You are only aloud to miss class for a clinic visit and they are way stricter than school.  I had one (clinic visit) on Wednesday and when I got back I had like 5 different staff members asking me where I was the day before!  At least you known they are on top of things!  Other than the attendance aspect it is nothing like PE class.  I had been told it was like a family over there ( meaning the center for living, the place rehab is held) and they weren't kidding.  Everyone is so friendly and we all joke around with each other and have a good time!  It will be hard going to a regular old gym after this is all over.  I have met a lot of people so far and they all seem so great.  It's a neat opportunity as well because there is a huge range of ages.  A few of the people seem like they are pretty close to my age, (I am assuming they have CF too, though I have yet to talk to them) but other than that most of  the people seem a good 30 plus years older than me.  Since I am quite new to this whole adult world, it is interesting to see adults interacting with each other in the normal human way, rather than the way adults tend to act around kids.  I am sure this experience is doing wonders for improving my social anxiety!

As previously mentioned I also had a clinic appointment this week.  I had some labs drawn (a measly 6 tubes this time!), an x-ray and another dreaded arterial blood gas draw.  Luckily this time the lady was able to get it in one stick and I brought some candy with me so I didn't come close to passing out.  Other than the pain of having an artery stabbed this test was easy peasy!  I met with another one of the pulmonologists.  I liked her as well.  So far all the people I have met at duke seem very nice!  She thought that I would probably be ready to list in a few weeks which would be great!  It might even mean getting lungs on September 13th is possible!  (this is the date I picked that I am really hoping to get my lungs, I've already put in my request with the big man and all :P !)  She said that they need me to be able to complete the rehab requirements and that it would be good for me to attend some classes before I get listed.  All of this sounded good to me until she took a look at my blood work.

dun... dun... duuunnn

After checking out my blood work the doc noticed that my immunity to vericcella (or the chicken pox) is borderline.  Unfortunately the vaccine for this is a live virus, which would mean no rehab for a month since people who have had a transplant can not have or be around a person who has had a live vaccine.  The doc is uncertain if getting the vaccine now is the best plan so she decided not to give it to me then and will talk about it with the rest of the team on Tuesday at their weekly meeting.  I have mixed feelings about this because I don't want the chicken pox down the road, if it can be avoided, but I also don't want to wait around an extra month while the virus gets out of my system.  To me the waiting around seems the worst though because it would mean no rehab which is what keeps me busy all day and is my social outlet.  I am praying that the docs decide I do not need the shot and that God allows my immunity to protect me from the virus in the future.  I would greatly appreciate similar requests from my praying blogollowers! (and it wouldn't hurt to ask for my transplant to be on the 13th too!)  

That about sums it up for whats happening here in the trees.  (I feel like I am in the middle of a forest...strike that I am in the middle of a forest!)  I'll write again when I know more, or in a few days, though with the schedule they got me on it is hard to find time to write.
Tootal loo Kangaroo!

P.S. I just wrote that whole post sitting upright without using the chair back for support!  If I keep this up I could be a body builder in no time :P ! 

P.S.S I don't want to be a body builder but I do need to work on the being able to support myself while walking as this is the hardest thing for me in my workouts.  I get out of breath much faster when I am walking and they keep having to turn my oxygen up.  Pretty soon I too will be one of the "gas mask" wearers!


  1. Amazing! This whole process of preparing for a transplant is nothing like I would have imagined it. I love reading your descriptions of what you're doing. Thanks.

  2. Thanks for sharing your journey Anna! It's awesome to see your view as well as your mom's from her emails. Thanks for allowing us to go on this amazing journey with you!!

    Gary and Nan Goodenow

  3. Hey girl,

    I am so hoping and praying that you get the transplant on the 13th! That would be awesome because then maybe you could come back home for 2nd semester! I miss you and I am still hoping to come visit you once you are out of the hospital! Pray that it can work out. I love and miss you bunches!! :))

    She Who Must Not be Named