Wednesday, November 27, 2013

Turkey for this Turkey!

Tomorrow is Thanksgiving and it is looking like I will be joining my fellow Americans (who are aloud to eat) in stuffing myself on turkey day! ( not that I actually like turkey, but who knows maybe now I do). Anyway, things have been going really well for me the past week.  I have had energy everyday and have not had a nap in 6 days!!!  I still occasionally have moments of nausea or other weird feelings but I am starting to feel good more often than not.  I have been working on eating and am slowly beginning to cram more stuff down in there at once.  Tonight I pretty much ate a full meal! (It may have taken a few hours but I got it down and didn't feel completely awful!) The real test will come tomorrow. :)

The break brought along some visitors, providing a nice change of pace.  My mom switched with my dad and step mom and got to go home for the week.  My friend Jenna got to visit this weekend and yesterday my sister came!  I have been having a really good time with my visitors and it has really helped me to feel more like myself.  I think I am ready to go home now and get back to regular life.  If things continue the way they are moving I may be able to get home in a few weeks!
I hope you all enjoy your turkey day!
Gobble gobble :D

P.s. it's flu shot time! Be sure to get one if you haven't yet.  Protect yourself and people around you like me (immuno compromised peeps!) 

Thursday, November 21, 2013

Moving forward

Hello again lovely people of the Internet.  Its been a bit since I last updated you all and a lot has happened.  We moved! I can eat some food!!! and some time has passed.  I am doing pretty well.  I feel tired almost all the time and sleep quite a bit.  I know I am getting better but some days it is hard to see. I also find it a bit difficult to grasp the concept that one day I will be better.  I will be able to run and dance, swim, laugh,, you get the point.  I know the day will come when I look back and this is all just a distant memory but in the moment it is hard to imagine and truly believe.  And yet, I can look back and remember my hospital days when I felt even the small progress I have made wouldn't happen, heck a week ago I couldn't even eat and felt the day I could eat would never come, but it did!

My first meal!
Yes you are correct I can officially eat food.  I am not back to normal eating but I am aloud what is called a chopped diet.  I call it soft foods.  It has opened up many doors for me and I definitely feel better knowing I can have some food go through my mouth.  I have my next swallow test on Tuesday and am hoping I get cleared for thin liquids so I can finally have something to drink, that isn't thick and gooey.

I finally got some pics from the hospital and of my staples for those of you who want to see that.  The picture bellow is from the hospital.  The tubes you see are some of my chest tubes.  I think I had 7 total, though as I count the holes now there may have been 8, either that or one of them split into what looks like 2 holes.   In the bottom right corner there is a red blob.  This was one of my chest tubes.  I had 2 tubes like this one.  They were smaller than the others and had a little ball thing attached to them and they drained right into that.  The rest of my chest tubes were connected to these big plastic containers that kind of reminded me of the thing people use to test pool water.  I am not really sure if there is such a thing, as I am no pool expert, but I feel like I have seen people checking the water with a rectangular shaped box that scoops up the water and then has different chambers that are different colors.  If you know what this is than great you now have an idea of what the chest tube drain boxes looked like and if not, or if such a thing doesn't exist, I just described it so you are set too!  The next picture is of my incision line.  I have staples in for now.  I tried to count them, quite a difficult task, and I think there are about 100 of those pesky little buggers in me.  They really aren't that bad, probably due to the fact that I am still partially numb around my incision, but they do pinch on occasion and I am looking forward to getting them out. (Which should be in the next few weeks here.  I am at week 5 post surgery already, can you believe it!?!)

Pretty cool huh?

Mom and I have begun to settle into our apartment and our new routine.  Its funny because I thought I would be giving stuff up and have a less complicated medical regimen after transplant, just a bunch of pills right?....WRONG.  I have WAY more to do now than ever before.  Luckily I think as I continue to get better and as time passes the regimen will get less and less.  Being able to swallow my pills will also add to the easiness, its a little hard to put liquid meds in a pill box!  Each week seems to bring lots of procedures.  Just when I think I have had every medical procedure known to man done to me, my doc surprises me with another procedure for me to do.  This past week brought my usual monday morning blood draw, x-ray, pfts (pulmonary function test) and blood gas.  Then I also had a bronchoscopy done and finally the easiest thoracentises I will ever have.

For those of you who do not know a bronchoscopy is a test where they put a smallish tube down your nose or mouth and into the lungs.  The tube has a light and a camera on it so the doctor can see the inside of the lungs.  They can then clear out mucous from the lungs, simply look around and take tissue samples.  The bronch is the only way they have so far to check for rejection.  I will automatically have one done 3,6,9 and 12 months after my surgery and then once a year for the rest of my life.  The bronch I had this week showed some mild rejection so I will have another one in a few weeks to check and see if the treatment for my rejection was successful.  They have a few different ways to treat rejection.  Since mine was only mild and it is my first time I got to be treated with a high does of iv steroids and then an oral steroid taper back to my normal does.  I had the iv at home which was super easy.  Other than making me a bit sick to my stomach and sending my blood sugars on a nice dollar coaster ride, it went fine. 

A thoracentises is a procedure where they take fluid out of the cavity between your ribs and your lungs.     The doctor looks with an ultrasound to find the fluid and then puts in a needle to suck it out.  My last x-ray showed some fluid so I had to get it removed.  The procedure was scheduled for friday.  I went in and was sitting on the table having the ultrasound done, when the doc declared there was not enough fluid for it to be worth taking out!  That was the best news of the week, no big needle in my back, at least not yet. 

Confession time!  I typed this on Saturday, maybe even friday (its been so long I can't remember!) It is now Thursday so naturally things have changed.  This week brought another doc apt on monday (lab draw, x-ray, pfts and abg (blood gas).  We also met with the nutritionist, diabetes doc and my pulmonologist.  Things are looking good.  I also got the okay to stop the bi-pap (yay!)  As long as things keep progressing well, my doc thinks the idea of getting home by Christmas could be a reality!

This week has been a marathon of doctor visits as well.  I was able to get another swallow test scheduled for tuesday, I passed and am just waiting for the doc to give me the official okay for eating normal food and.....DRINKING!!!!  I am so looking forward to a nice big glass of thin liquid!

Yesterday I had another 24 hr ph probe test.  I will have to wait find out how that went.  Hopefully it was good and I will not be needing the stomach wrap surgery.

Well its time for rehab so I got to go.
Later ya'll!

Saturday, November 2, 2013

I'm back!!!

After nearly 3 weeks of silence I am back to typing.  3 weeks, wow! Where do I even begin.  I guess I'll start at the beginning.  It was around 9 am or so when my phone rang for the second time with an unknown Durham number.  I answered and heard the now slightly familiar reply "Anna, we have lungs" followed by instructions on what to do.  This time Sebastian and Dave were with us so the four of us made the short drive from the hotel to the hospital ( we were in a hotel for the week while Sebastian and Dave were here)  The hospital was a whirlwind as they prepped me for possible surgery.  After only a few hours of waiting I got the second call, it was a go!  We sat around for a few minutes saying goodbye and then it was off to the operating room.  I had two lines put in, one in each hand glanced at the clock, it was 2:57 and that is the last thing I remember.  When I finally woke up I didn't really know what had happened.  It took a bit to process I was post transplant.  I was still on the ventilator and spent some of my first few remembered minutes trying to get off.  I knew I needed to breath so I just kept trying to do that.  Unfortunately due to the complications of my surgery I had to stay on the ventilator for several days (even while I was conscious).  I have no idea how I made it so long on the ventilator without freaking out.  I can only point to God and just know he carried me through.  He really has brought me through the whole process and still continues to each day.  

Before my transplant (it is so weird even today to type that, it still doesn't feel real) I had been told that it would be the hardest thing I have ever done, and probably ever would do.  Yes, yes it is.  So far the process has been the craziest rollar coaster ride ever.  Add to that all the drugs in my system and well.....yeah.  The hospital was definitely the hardest.  Although it is exciting being out of the hospital and at our NC home I still have a LONG way to go and each day is a struggle.  My pain has gotten pretty good and I hardly ever take anything for it so that is a definite plus.  

For me the two hardest things are not being able to eat or drink and being on bipap at night.  I am aloud to have 2 sips of a thickened liquid per hour, but when you have had nothing to drink for 3 weeks that hardly cuts it.  I really just want a nice big glass of water.  It is amazing how much we take being able to have a drink whenever we want for granted.  Each moment is a struggle.  I have times when I am okay, my mouth feels wet and I can forget a bit about not drinking, but then the ferocious beast of thirst shows its ugly head and it takes everything in me not to rush to the kitchen and chug all the drinks we have.  I now really feel for the people in countries without access to clean drinking water.

And then there is the bipap.  Due to my complications during surgery my lungs are still not completely good.  I have been having trouble getting the CO2 out of my blood especially at night.  Due to that the docs felt I would benefit from using a bipap machine at night.  This is  hard for me because it means wearing a mask that forces air into my lungs at night.  I hate being hooked up to things at night especially on my face.  I think the hardest part for me is that I did this transplant to have healthy lungs and ditch the o2 and yet I feel like I have almost taken a step back.  I had always been able to avoid the bipap pre-tx, I have a hard time believing that I have good lungs now that I need it.  Everyone tells me it may be temporary and my lungs need time to heal.  I know this somewhere inside but it is extremely hard psychologically to truly grasp.  

My days are pretty insane.  I have the craziest pill regimen ever, mostly due to the fact that I am not aloud to swallow my pills.  The kitchen looks like a chemistry lab most of the time and Beth and my mom are constantly busy crushing pills and mixing concoctions to give me.  When we aren't busy with pills we go out walking.  I still have an aversion to walking but I can do it and I don't even get out of breath (crazy right!)  When I was in the hospital I had to walk laps around the halls.  The first few times I did it the pt people with me would check my oxygen saturation and it was usually in the low 90s.  This always shocked me I haven't had an oxygen saturation on room air that high in maybe 7 or 8 years.  After a few days I began to be able to walk and talk, again that is not normal for me.  

I am pretty tired all the time and my chest feels very heavy.  I have all kinds of scars almost from head to toe (they cut off around my thighs)  I pretty much look like I went through a car crash, or shark attack as I like to claim!  My incision is huge and goes all the way across my chest, in a sweetheart neckline fashion.  It is really quite crazy to look at as it is filled with staples.  

I start rehab next week.  I also have my first post tx check up.  Ill update more later but I am pretty tired right now.  
peace out home dogs!