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!