I'm back!!!

Hello!

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!

Day 11

Sorry for the long delay. Sometimes keeping up with all the different forms of communication can get overwhelming. I dropped the ball on Anna's blog. Anna got off ECMO on Wednesday night 10/16. By the end of the17th she had an epidural in place and finally the dreaded ventilator was removed. Anna walked a bit that night. What a huge leap she took in less than a week. Friday night brought her move to the step down unit. After being in the very posh ICU, the step down unit is rather depressing. It's old, the rooms are tiny and the waiting area is pathetic. 

Each day Anna has increased her walking. It's an ordeal getting all her chest tubes (she has had up to 7 of those but is down to 5 now) and IVs situated (I haven't kept track of the IVs. She had at least 12 at once in the ICU, she's down to 2). Anna uses a walker that has arm rests about chest-high. It gives her something to rest on and more stability. She is now up to walking just about 1 mile. I think by the end of today she'll be walking over a mile. Impressive considering her pain level is at an 8 (on a scale from 0-10). The sad news is that yesterday a possible new blood infection was detected. They don't know what it is exactly but her white blood count is elevated. The Drs were concerned it might be related to her epidural (which was providing pain relief) so they took it out. Not good news for Anna. She is in a ton of pain now. 

She hasn't slept much here due to the pain and she's really uncomfortable. She cannot eat or drink by mouth. She would give anything to get even just a sip of water. Her vocal chords and epiglottis are not doing their job of closing her airway and protecting her lungs from food and liquids. She has some exercises to do which may help strengthen things.        

Although Anna doesn't feel strong, I am amazed by her ability to tolerate all she has gone through. She's not up for blogging yet (and probably won't be until she gets out of the hospital---no energy) but when she is, get ready to hear all she has to say. She won't sugar-coat anything! :)

Better Day!

All signs are pointing in the right direction. Anna is still on ECMO and the ventilator but there is talk of getting her off ECMO today. Her blood pressure is stabilizing. She has grown a staph infection and another infection but both seem to be responding to antibiotics. She is alert and communicating with signs and writing. She's exhausted and in some pain but hanging in there. She wants the ventilator out (who wouldn't?) but is tolerating it well. I am so proud of her. She is a warrior!!!!

New Day New Hope

Anna is still on ECMO. She is improving today little by little. She's got gobs of tubes coming out of her, so many she's reminding me a bit of a transformer...maybe she'll start flying :) She's still unconscious. That's best because she doesn't want to feel anything, especially that nasty intubation tube jammed down her throat. I think she told you all about her fears of that thing. Every now and then she comes to and begins to move slightly. I can tell she's saying, "Get that thing out of my throat!" They load her up on pain and sedative meds and she goes off to La La land again.

That's the update for today. I'll tell you more tomorrow.

Anna Has New Lungs!!!

Anna's surgery is done!! She is having some complications at the moment. She is connected to something called ECMO. Like bypass but for the lungs. It happens sometimes when the new lungs are sluggish to function. We'll know more in 24-72 hours.

Anna's Getting New Lungs!!!

Hi! I'm Karen, Anna's mom. Anna gave me the pen to keep all her blogollowers posted :) She got the call this morning around 9:20 am EST. She didn't hear if she was the primary or secondary which she believed meant she was primary. She was right! I'll let her fill you in with all the details from her point of view. She went though the same pre-op prep as she did on Tuesday.  At 2:04 the transplant coordinator called her and told her "it's a go!" Within about 15 minutes they whisked here off to surgery.

So now we wait...

I'll keep you posted :)

Dry run

It was a dry run.  I'll type more this weekend