Homeward bound!

I'm going home!!!

Almost there!

We're still working on pain management. Things were a bit better this morning, but I still didn't get much sleep. We think that my muscles may be stiffening up while I sleep, pulling on everything and causing me pain, then taking a while to settle down after I wake up. Tonight we're going try some muscle relaxers before bed and see if that helps. Wish me luck!

One thing I didn't mention is that I've basically been diabetic since transplant. Diabetes is a common CF complication, particularly as people get older, due to pancreas damage. Diabetes is also not uncommon post-transplant due to medication side effects. I was already hovering on the borderline of diabetes before transplant, so this may be the thing that pushes me over the edge. Or it may be temporary while my body heals and adjusts to new medications. Either way, I've been learning how to check my blood sugar and give myself insulin multiple times a day, and will continue doing so for the foreseeable future. Fortunately I'm not phased by needles and am used to medical routines, so it hasn't been difficult. If this is the price I have to pay for breathing, I will gladly take it!

Yesterday we finished the prophylactic IV antibiotics to prevent infection post-transplant, and my other IV medications were changed to oral or nebulizer meds. Since I'm now done with IVs, tomorrow I'm scheduled to have my port removed. A port is always at risk of infection, and I'm at even more risk now that my immune system is suppressed to prevent my body from rejecting my new lungs. I shouldn't need regular IVs now that I have new, healthy lungs, so hopefully I won't need the port anymore. Since I'll already be in the OR and under sedation, we're also going to do one more bronchoscopy to clean me out. And then... There's nothing else keeping me here! The current plan is to send me home on Wednesday!

I have been gradually allowing visitors as I've been feeling stronger. Please coordinate with me so I don't have too many people at a time and to figure out what times are good for visiting. And most importantly, any visitors MUST be COMPLETELY healthy! I can't be around anyone showing ANY signs of illness, or who has been around anyone who is ill and might have picked something up but not be showing any symptoms yet. My immune system is suppressed to prevent my body from rejecting the lungs, which means not only am I very vulnerable to picking up any infection I'm exposed to, but my body will be less able to fight off infections and they will cause more serious illnesses. What would be a simple cold or stomach virus for a regular person could land me in the hospital or even be deadly. Catching an infection can even trigger rejection, so I will be spending the rest of my life being very careful about trying to avoid germs. So if you're thinking of visiting, make sure to be VERY careful about protecting my newfound and fragile good health!

Big progress

We're still trying to figure out how to prevent me from waking up in excruciating pain early in the morning. Thus far no matter what we do I wake up in terrible pain, and it takes hours to get things under control. It's been really difficult, but at least it's temporary and the pain is usually manageable by the afternoon.

Yesterday I was a little more congested, so today they did a bronchoscopy to go into my lungs, clean things out, and see how they looked. Having a bronchoscopy after transplant is pretty standard, but I was doing so ridiculously well that they planned to wait and do mine as an outpatient. Since things were slightly off, however, they decided to go back to the original plan and do it now.

I've never had a bronchoscopy outside of surgery before, so I was always unconscious the previous times. They did this one at my bedside, so that was a new experience that I'd rather not repeat. During a bronchoscopy they put a probe down your throat and into your lungs, and are able to use a camera to see what's going on and a suction tube to take stuff out if necessary. They had me inhale and gargle various numbing solutions, but I have a strong gag reflex and really don't do well with things going down my throat. They also gave me some sedation to help keep me calm and relaxed. We did manage to complete the procedure and clear a bunch of mucus out of my lungs, but it was pretty unpleasant. Unfortunately for me, bronchoscopies happen every few weeks/months during the first year post-transplant. Hopefully the outpatient ones will involve more anesthesia.

On the plus side, I'm breathing MUCH better after being cleared out during the bronchoscopy, so that's nice. And I'm not having any lingering discomfort a few hours later. At least the unpleasantness served a purpose and didn't last.

As of today I'm officially steady enough on my feet that I no longer need a walker. I'm not winning any races, but I'm now able to walk by myself, which is very exciting and an important step towards going home. B"H I'm actually doing well enough that we're talking about sending me straight home, without going to an inpatient rehab, next week! I'll still have to come to outpatient rehab at HUP 3 times a week, but I can spend the rest of my time in the comfort of my own home. I am very excited to have a successful and comfortable return home this time around!!

Steady progress

Things continue moving steadily forward B"H. Yesterday I was able to slowly go up and down a few stairs during my PT session, and today during OT I started working on how to safely walk around, bend down, and pick things up at different heights. Such simple, everyday tasks, but all things I need to re-learn and regain strength in. My appetite is gradually coming back and I'm working towards eating semi decent amounts of solid food. Maybe one day I'll actually manage 3 full meals a day!

Pain continues to be an issue, and mornings are particularly difficult. I take painkillers regularly even overnight, but still have a lot of pain in the morning that doesn't really get under control until the early afternoon. The pain obviously makes it difficult to move around, but it also makes it difficult to breathe, as I can only breathe so deeply before it becomes too painful and I have to stop. Deep breaths are important to fully inflate my new lungs and get them to fill my chest cavity. On the other hand, I can't take too high a dose of pain medication, because that will suppress my breathing. It's very tricky finding a balance. In the afternoon the pain is more controlled, but I'm also more drowsy and out of it from the medication. I seem to have a few good hours in the afternoon and a few good hours in the evening, and can't quite predict when they'll happen. But hopefully as I continue to heal the pain will become less intense and I'll be less dependent on painkillers. Hopefully that will happen soon!

On a different note, remember the lovely family that invited me to join their seder in the hospital? I would greatly appreciate it if you could add them to your prayers. I am fully confident that the numerous people storming the heavens on my behalf has contributed to my amazing recovery, and I would love for some of that energy to help her and her baby as well. Please add Devorah bas Brocha and Tinok ben Devorah bas Brocha (the extra name is because he isn't named yet) to your prayers. Thank you!!

Surgery update 12

Hi everyone, Katherine here.  I just wanted to give a quick update.  So this morning Eliana was having trouble managing her pain.  By this afternoon though, they found the right dosages of meds to provide her relief without conking her out.  Also, she asked me to bring in her molding clay and she officially made her first pole people since the transplant.  For those that aren't familair with the pole people, they are little clay sculptures that she makes during her hospital stays to decorate her hospital room.  When she leaves the hospital, she usually leaves the pole people at various spots around the nurses station. 🙂

Update from Eliana

I'm still here, more or less! Still very, very tired and on lots of painkillers, but I feel slightly more awake and alert right now and decided to try my own update. I probably won't be taking over permanently just yet though.

B"H things have been going really well, far better than anyone expected. The last drain tube was pulled from my chest today, which seems to have taken away some of my pain, so that's a relief. We also seem to have found a decent painkiller regimen, though we're still working on relieving my pain without knocking me out. And today I was able to walk (with assistance and a walker) a little faster and further, so I'm getting stronger day by day!

Of course, "really well" still involves being very incapacitated, just not AS incapacitated as they expected only a week out from transplant. I feel like Facebook, as it often does, gives a false picture of how wonderful things are. Of course all the good things ARE happening, it's just that I spend far more time conked out in bed or on the recliner than anything else. I'm still dealing with a lot of pain, only just graduated from using a bedside commode to being able to walk to the bathroom with assistance, and am still relearning simple things like swallowing. I have come to really appreciate some very small things in life!

Thank you all so much for your comments and messages and support! I've been been seeing them even though I haven't quite had the energy to wade back into the social world just yet. Katherine has been blown away by all the love! Please forgive us if we are less than responsive, or if I turn down visitors. We truly do appreciate it, we're just also completely exhausted!

Surgery update 11

Hi everyone, Katherine here.  I just wanted to share another update. So Eliana is continuing to heal well.  She takes 3 walks a day (with a walker of course).  She has started using the normal height walker rather than the high walker, which means she is getting better at walking.  She is able to eat solid food but only light stuff.  Also, she can't have thin liquids like water yet, only thick liquids.  She has a thickening gel that she can add to water or thin liquids if she wants to drink them.  She asked me to let everyone know that even though she doesn't yet have the energy to answer comments and messages, she sees them and very much enjoys and appreciates them! Please keep praying for her and letting her know how much we love her!!

Surgery update 11

4 days after her double lung transplant.  She is amazing!!

Surgery update 10

Hey everyone, Katherine here.  She is about to take her first walk!!!  She's using a walker thing but she's gonna walk!! Please pray for her!

Surgery update 9

Hi everyone, it's Katherine.  Eliana is continuing to heal and be the determined Eliana that we all know and love.  Right now she is sleeping comfortably.  I just wanted to give a shout out to someone that I see everyday.  Eliana's mom, Eileen.  She is at her bedside every single day and she is always there for her.  I may be the one writing these updates but Eileen is right there with Eliana too.  She is absolutely amazing and I wanted to recognize her awesomeness! Also all of you, her friends.  Your love and support has been SO AMAZING, it's hard to put it into words.  I am grateful to every single one of you for being here and taking this journey with us.  Love you guys!

Surgery post 8

Hi everyone, Katherine here.  I just wanted to post a quick update.  Eliana is settled into the transplant ward.  The big news of the day is that she is currently on ZERO supplemental oxygen! They took her off of the o2 when she moved to the new unit earlier today and she is doing really well without it.  Her body is slowly relearning how to do things like cough and swallow.  Also, she is able to sit herself up in a chair by herself.  She is super determined!  Please keep praying for her!

Surgery update 7

Hi everyone, Katherine here.  I just wanted to give everybody another update.  This morning she got two more drainage tubes removed as well as the catheter. So she only has two drainage tubes left, aside from the numerous iv lines and monitors that she is hooked up to. Also, she just got moved to the transplant floor.  Her recovery is very difficult but she is rocking it and she is ahead of schedule.  I can't tell you how many of the doctors and nurses have commented on how quickly she is recovering.  Please keep praying for her!

Get well card

Hi everyone.  I'm putting together a get well card for Eliana.  The link is below. You can add pics or a gif and/ or a message.  No obligation to participate, I just thought it would make her happy to see how much she is loved.  I'm going to deliver the card on Monday but even after I deliver it to her, you are still able to add to it.

https://www.kudoboard.com/boards/PXdvpk8W

Surgery post 6

Hi everyone, Katherine here. I just wanted to post an update. Eliana is still in the icu.  Recovery is going to be a long road but she is slowly but surely improving.  She had 6 drain tubes coming out of her and today she had 2 of them removed.  She is on supplemental oxygen but about an hour ago they lowered it to 2 liters which is a very small amount.  She is on a lot of meds so she is tired but she is definitely coherent.  They are hoping to move her to the regular transplant floor tommorow which is a very good sign for progress.  Please keep praying for her, this is the first stages of her recovery and it is not an easy recovery.  Having said that, this is Eliana we are talking about so we all know how determined and strong she is!

Surgery update 5

Hi everyone Katherine and Eileen here. Eliana is doing AMAZINGLY well. She is awake and coherent, and as you may have noticed, posting. She has been taken off the ventilator LESS THAN 24 HOURS after her surgery was completed! This usually doesn't happen until the second day post-op. Her determination and strength are showing through!

From Eliana

Brief message from Eliana:

I'm gonna ROCK this

#Overachiever

(this is Katherine, she told me to add to this that it took her 2 hours to write this post so please don't expect her to write or read anything else anytime soon)

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!