Showing posts with label waiting. Show all posts
Showing posts with label waiting. Show all posts

Monday, June 15, 2015

Lesson from a transplant

Hi Guys!
Well first off I had yet another doctors appointment this past week.  I met with both the transplant docs and my cancer doc.  Both reports were pretty good.  It's funny because I have had such a change in how I view doctors appointments.  I used to dread going to the doctor, pretty much every doctors appointment meant another hospital stay.  Now I almost like going.  Don't get me wrong it's not that I enjoy spending hours siting in waiting rooms and wasting two days at the airport just to have a doctor look at me for five minutes, but going to the doctor has become an enjoyable experience.  It is a chance for me to see how much I have improved and to show the doctors how good I'm doing!  This visit in particular was met with raving reviews from my cancer doc and his student.  Much to my grandmother's delight, who was with us this trip, he called me the poster child for PTLD!  I also got to see my beautiful X-ray.  I unfortunately did not get a copy of it but let me just tell you it was so big and black!  Those lungs have really expanded and cleared out!  I have a couple more appointments to go before my doc month is over (I see all my docs every 3 months and they all seem to occur at the same time), this time these are here so much less time consuming!  After that I'm a free woman until September!

Few!  With that update out of the way we can get on to bigger and better things.  The real reason for this bolg.  Transplant is a very intense process and it is impossible for a person to go through it without having their life completely change and not just in the obvious ways.  Yes I have a huge scare across my chest and a few more along my neck and stomach but those are a small change in comparison to how it has change me as a person.  In fact their are so many changes that I am going to spare you the novel post and break it up into smaller chunks!  Thats right I'm back on the blog wagon!  Lets buckle up (are there seatbelts in wagons?  Maybe these days!) hold on and dive into our journey of LESSONS FROM A TRANSPLANT:


Lesson 1: Patience
How to Wait

I am no expert in this field, in fact I still kind of suck at waiting for some things.  However I have had a LOT of experience waiting for big things to happen.  Besides the obvious, waiting on the list for lungs, I have spent time waiting to get listed, waiting to go home, waiting to go back to school, waiting to feel better, waiting, waiting and more waiting.  I have spent the good part of the past two years simply waiting.

What I have learned is that waiting just happens.  It's one of the hardest and easiest things to do.  Like time the wait will pass whether you pay attention to it or not and that is the key, to not pay attention to it.  As anyone who has spent time in a waiting room, on a plane or on a car ride knows, the time passes faster when you have something to do, ideally something interesting or fun.  As a person who has spent long periods waiting (were talking months here)  I know that life doesn't stop when you wait and the time waiting is still time.  You can sit around miserable waiting for the time to pass or find something to do.

Definitely the hardest wait for me was the seemingly endless 19 days I waited on the list.  Now I know that sounds super short, and it was, but keep in mind I had already been waiting for about a month after we moved just to get listed.  I was not the greatest at this wait especially at first.  When the call came in that I was on the list I half expected to get lungs that night.  I even shoveled in my food (and by shovel I mean maybe eat at a barely normal speed, I was pre- transplant people I couldn't eat fast remember this X-Ray!  My esophagus was way over on my right there was no eating fast for this girl!), thinking I wouldn't have time to finish before the call came.  Well I did, as hours turned into days I realized the call wasn't coming anytime soon.  As I waited I began my first intense steps down the path for the waiting lesson.  These steps showed me to find something else to do.  I spent my days at rehab, napping, seeing friends and of course at our pitty dinners!  Pretty soon this chunk of the path was over and the next chunk began.

This is a path we all travel all life long but for the next two years my path would change from a fairly flat easy road to a steep mountain pass, covered in a jungle making it impossible to see the end.
As I climbed along I learned some tips along the way.

Another way I have learned to be content with waiting it to change the moment from being one you want to pass to one you want to remember and even possibly enjoy.  As I am currently waiting for my hair to grow back this lesson has been very clear.  My hair is super short and curly and although this is not a style I would have ever chosen on my own I am learning to enjoy it.  There are perks to short hair, its easy to deal with and never gets in the way.  I do have my moments when I really just want to pull it up in a ponytail or braid it but I have to remember that one day it will be long again and this period of short hair will be gone.

I still have a long way to go on this path, as I still struggle to wait for school to start, to be done with school and start my "adult" life, a relationship, my hair, but I have also come a long way!   
Kaelyn and I waiting for our appointments last week

Thursday, May 1, 2014

Ahhh....waiting

I have returned to Durham for yet another bronch and an appointment.  I told my dad last night that it's crazy to me to think that ONLY 6 people have ever bronched me.  He replied that it's crazy I used the word only considering most people haven't even had one person bronch them.  I guess I get a bunch of those.  Anyway I had my bronch yesterday and am currently waiting for the results.  I feel similar, I imagine, to how a person waiting to see if they have cancer or not might feel.  Usually I'm not that nervous about the results but this time my plans are contingent on the results.  I am hopefully going to Mexico with my grandparents and friend from school (who I haven't seen since November) but if I have rejection it might mean I can't go.  I have been reluctantly checking my e-mail all day.  I want to know the results but I also would rather not if there is rejection, it's better living in the world with the possibility of Mexico than the world that it won't happen.  I guess I never know it could happen even with rejection I'll just have to wait and see.  I am also a little nervous about the treatment for rejection.  If I have it this time they are going to treat me with RATG.  This is an IV treatments made from rabbits and people sometimes have bad reactions to it.  I have two friends who recently had it and had a bad reaction.  The thing they have in common, they both have had pet rabbits.  I have too, in fact I have had 7 pet rabbits throughout my life 😁.  Again we will just have to wait and see what happens.

The rest of my check up went well.  The doctor even told me I have beautiful lungs, to which I replied "thank you"! I have never had someone tell me that before and had no idea how to reply to that comment! 😛

In other news: the rest of our Europe trip went well.  We got home on Sunday.  Our last stop was Norway and it was one of my favorites.  We stayed with Sebastian (our exchange student from last year).  His family took us aroud and we got to see the town of Bergen.  It was really nice and pretty.  The area really reminded me of the mountains in Colorado if Colorado flooded!  We took a tram ride (a Pinterest success!) up the mountain and we could look out all over the town.  It was beautiful (just like my lungs 😜, er Freddie Joe's(what I call my donor) lungs). We also got to ride on Sebastian's Grandpa's boat which was really fun too!  I love the water and going on boat rides!  Overall despite the challenges my transplant brought it was an enjoyable trip.  I am glad I was able to go, which was definitely due to my transplant. There is no way I would have survived all that walking with my old lungs!
Talk to you later peeps! (Hopefully from the beaches of Mexico!)
Anna

 A view of Bergen from the top of the mountain.

My Norwegian troll boyfriend!

A view from the boat!

Sunday, October 6, 2013

The foreigner and the pity diner

Why hello internet people.  Yes another week has gone by and still no lungs, in fact I haven't even had a dry run.  At this point I am really starting to wonder if I am actually on the list (no seriously I even sent them an email just to double check :D ) I honestly hope I'm not actually listed because that would explain why after 2 weeks I am still waiting. I know I know in the grand scheme of things even 2 weeks is quick, heck in the real transplant world (not the crazy fast duke world) 2 weeks is nothing.  I really feel for people who have to wait months or even years, it has been hard waiting the past 2 weeks.  The good news is Sebastian, our exchange student from last year, is visiting!  It is great getting to see him again plus he provides a nice change of pace!  Along with the arrival of Sebastian this weekend brought our second trip to the melting pot.  Our first trip was a splurge dinner my mom came up with since we were both kind of tired of being here and discouraged since I hadn't gotten lungs yet.  This past weekend we decided to go back because....well for the same reasons.  It was actually quite fun.  I'm guessing not many people return to the melting pot the following weekend as everyone (staff people) recognized us. (I guess being a 22 year old on oxygen might be a tad memorable as well). This time though we met the owner.  He was very friendly and and we chatted a bit.  After hearing our story he decided to comp our meal which was sooo nice!  We had been joking about making weekly trips to the melting pot our thing until I get my lungs, after that it might just be.  Unless I'm in the hospital you know where I'll be Saturday or Sunday night (both???)
Until then it's more rehab for this kid (how long am I aloud to call myself that?)
Cheese out! Dippin sticks!

P.S yes I am really on the list, the rational part of my brain always knew that but at least now I can shut that crazy idea down completely.