Surgery update 4

She's awake!

Surgery update 3

Hi this is Katherine.  Just wanted to share an update on Eliana's condition.  She is still in the ICU under sedation.  They are weaning her off slowly so that her new lungs can start doing more of the work.  I will update later today when we know more. Please keep her in your prayers.

Surgery update/ part 2

Hi everyone Katherine here. So the doctor just came out and talked to us and the surgery is complete and everything went well. They are going to move her to the ICU in a little bit after they are sure that she is stable enough to move. She is still intubated and they are not going to wake her up until tomorrow but the surgery part of her journey is completed.  Please keep her in your prayers!

Surgery update

Hi everyone, this is Katherine.  I just wanted to post an update.  The organ procurement team has checked the donor lungs and determined that they are a match and that there are no problems with them. They just prepped Eliana and brought her back to surgery.  The surgery is expected to last anywhere from 8 to 12 hours. Thank you so much to everyone for all of the love and prayers.  The surgery team said that we probably wouldn't hear anything for about 6 hours but I will update the blog as soon as we hear anything.

New lungs here I come!

I’m on my way to get shiny new lungs!!!!

(Assuming it isn't a false alarm. There's always a chance they'll find something disqualifying during the final check, so nothing is guaranteed until they're actually putting me under. But the doctor says everything looks good on paper and he's very hopeful!) 

It’s a loooong surgery, so don’t be alarmed if it takes a while until you hear any news. While I’m incapacitated, my mom and Katherine will be posting updates on my blog at https://laughteristhebestchestpt.blogspot.com.  On the web version there is an option to follow by email if you want to make sure not to miss anything. Please go there to keep up to date on what’s going on, as they obviously won’t be able to reach out to many people individually.

For those who who would like to daven, my Hebrew name is Keren Eliana bas Sara. 

See you on the other side!!

Almost there

As part of the transplant process you get a Lung Allocation Score (LAS) from 1-100, which determines your placement on the list. A higher LAS puts you higher on the list and closer to transplant. When I was discharged, my LAS was 42, which was already decently high. When I went to the ER, it jumped up to 59.

Today, it's 86.

I'm pretty much at the top of the list now. My doctor says the transplant could happen any day, and he's even hopeful that maybe it will be this weekend. Which is great, because I've been having a really rough time. I've continued struggling with nausea and GI issues on top of struggling to breathe. I'm basically bed bound, because the slightest exertion drops my oxygen. I spent most of the last couple days in a haze of discomfort and misery.

Today I was really struggling with feeling like I was suffocating, even when my oxygen levels were ok. Turns out that's a known thing called "air hunger," and it's treated with... Oxycodone. So I'm feeling MUCH better now. I'm fine with just being high until transplant, that absolutely works for me. I feel like that would definitely improve my current quality of life!

Everyone keeps telling me I'm almost there. So I'm hanging on and hoping I get there SOON!

...but not for long

Well, I managed a week and a half before going back to the hospital.

Going home ended up being MUCH harder than anticipated. The in-home oxygen concentrators were strong enough to keep my oxygen up while I was at rest, but not during exertion. I had oxygen tanks that were stronger, but I couldn't rely on them because they'd get used up too fast and I needed to save them for going to appointments or for extra-exerting activities. Unfortunately, even just walking to the bathroom was enough to drop my oxygen levels. Not only was this uncomfortable and utterly exhausting, it also meant that I was way less functional than anticipated. I ended up spending most of my time either in bed or on the couch or recliner because I couldn't cope with doing anything else. A lot of the time just talking was difficult because I was struggling so much to get enough oxygen. I was still bringing up LOTS of thick mucus, which meant frequent coughing fits, which was another thing that all too often sent my oxygen plunging. I also woke up coughing every hour or two all night every night, so sleep wasn't going well. And on top of all that, I was dealing with nausea and almost no appetite. I basically spent most of my time curled up in a miserable ball, with the occasional hour or two of feeling somewhat better.

Katherine has been a trooper and a godsend. She's basically been waiting on me hand and foot for the last week and a half, while also having to cope with all the emotions involved in watching me be an utter train wreck. I truly don't know what I would do without her!

I was very torn, because on the one hand I wanted to be in the comfort of my own home, but on the other hand it was so very hard. We already knew within the first few days that I wouldn't be home for long, because it was clear that my oxygen needs would soon be too high to be maintained outside of the hospital. What we did not expect was for my oxygen to abruptly plummet yesterday. For reference, I was discharged on 7 liters of oxygen at rest, which kept my oxygen level around 94-96%. Anything below 90% is not good. Yesterday I used tanks to put myself on the highest oxygen level I could get at 15 liters, and I was still suffocating. After a few emails back and forth with my doctor, I was off to the ER.

Once we arrived I got to see what happens when you come to the ER with a REAL emergency. My oxygen on 15 liters was below 90%, so they immediately whisked me back to the ER's Resuscitation and Critical Care Unit, which was quite the intense experience! There were around 10 doctors and nurses waiting as they wheeled me into my bay, and I suddenly had a bunch of people bustling around and hooking me up to various things all at the same time. One of which was high flow oxygen, which helped IMMENSELY. Within half an hour I felt more awake and functional than I have since leaving the hospital. It was SUCH a relief!!

Unfortunately, high flow oxygen can't be done at home, which means I will now be inpatient until transplant. It also isn't exactly comfortable, though it's definitely more comfortable than constantly feeling like I'm suffocating. On the plus side, being on high flow bumps me way up the list, so hopefully I won't have to wait too long.

So here I am, back at HUP, my home away from home. This time I even get a special room with fancy monitors near the nurse's station so they can keep a close eye on me. Because we all know I like to bring the drama!