What's up Nina? Thoughts from a Cystic Fibrosis Survivor & Lung Transplant Recipient

My Transplant Story: Part 7 – Coming home & Now

I had to stay in Seattle only a few weeks after that ordeal. Since I was almost 2 months post transplant and I only live 2 hours from the hospital the doctor said I could return home! YIPEEE!! We were so excited, and so was our families little chihuahua Fuego, since he was my buddy all this time while I sat at home sick on the couch.

As soon as I got home I was up and running, literally. I started walking on the treadmill everyday right when I came home, rode my spin bike other days, and after a month or so I started a running plan. Soon after that I started hiking, biking, lifting weights, and of course just being a normal person. I could now shop, as in walk around with people who shop like their life depends on it, keep up with them and not get tired!! I was able to complete a 4 mile race as well as a 2 mile one, I was also able to ride my bike 26 miles and then a 13 ride that was mostly hills. I have also had the privilege of getting a puppy, as I had wanted to so badly before. I have been taking my puppy, Axel, to dog training, and working on his soon to be running buddy skills. All in all, I have never felt better, and I am stronger than I have ever been in my life.

So far I have had to be on an oral antibiotics as a maintenance a few times. I have had IV once due to some bacteria in the new lungs, but it seems to have cleared it up. I have had a few issues that led me to need quite a few bronchoscopys but better safe than sorry I say! The amount of medications I am now taking is a lot but I have gotten used to it and it is nothing compared to the rigorous treatments faced by the normal Cystic Fibrosis patient as I had done all my life. More recently rejection was found through a bronchoscopy where they had taken biopsies. I am being treated for that now and will soon be re-checked, praying that it all went away!

Now whenever I do something, such as run or ride my bike, I just think… this is so amazing. But then I started thinking. EVERYTHING is so amazing, because I wouldn't even be here right now if it wasn't for my amazing doctors and surgeons, nurses and family and friends, and of course my donor and their family. If you think running a race is amazing, I cant forget that walking to the bathroom by myself without oxygen is amazing, considering what I could do before, this is way beyond amazing, they don't even make a word for it.

WAKING UP IS AMAZING.

Thanks for taking the time to read my story! If you missed any of the previous part of the story they can be found in these links:

My Transplant Story: Part 1 – Listing.

My Transplant Story: Part 2 – The Call.

My Transplant Story: Part 3 – Waking up in ICU.

My Transplant Story: Part 4 – More ICU & Ventilator Troubles.

My Transplant Story: Part 5 – Released from ICU.

My Transplant Story: Part 6 – Issues.

My Transplant Story: Part 6 – Issues

A few days later I had another doctor appointment and by this time I couldn't make it to the appointment (stomach acting up very badly) so we went straight to the E.R. Once we got in the emergency room they found out that my heart rate was over 220. They double checked it and sure enough… all the nurses and doctors in the E.R. came and game me an IV, then and IV medication to help calm and slow my heart. We had previously gone in for the stomach aches and vomiting but they seemed to be more worried about this (as it probably would have been cardiac arrest if I had been older).

To say the least they chose to keep me, I was admitted and then seen in the morning for my stomach problems. I think they decided the high heart rate was due to pain in my stomach. When they saw the CT scan of my abdomen they wanted to take me into surgery right away, only 3 weeks after my transplant. So my mom and I look at each other all sad, and then I go off back into pre-op. I did not have to wait long as I already had IV's and stuff and they wanted to get in there as soon as possible because my intestines were so backed up they could have burst. So they did the surgery, placed an epidural and I was back in ICU.

This time I woke up off the vent, HALLELUJAH, but feeling HORRIBLE. The pain and discomforts was like 1,000 times worse than the lung transplant. I feel for anyone with abdomen problems as it is ROUGH! I was not allowed to go home until I had a few regual bowel movements which took days, so I ended up being in the hospital for another week. Due to the placement of the epidural I had no feeling in my legs at all. Meaning I could not walk or more AT ALL. Not only could I not walk that week but when I got the feeling back in my legs I could not walk very well due to the abdominal pain I had.

Since it was really important that I walk and stay active for my new lungs I had a hard time for while. And for my mom and I, it was back to stay in seattle. Only this time a wonderful family allowed us to live in the apartment underneath their home! So I was out of the hospital once again, I could breathe, but I was staying on the couch a lot once again, it felt just like before, except worse, I felt horrible for not using these lungs. I knew I probably just needed time to heal but I still felt guiltily. Right out of the hospital the first time I was walking miles and hills. Now I was barely getting around the house, and boy had I lost leg muscle!

Read part 7 of the story tomorrow!!

If you missed the previous stories, you can find them using these links!
My Transplant Story: Part 1 – Listing.

My Transplant Story: Part 2 – The Call.

My Transplant Story: Part 3 – Waking up in ICU.

My Transplant Story: Part 4 – More ICU & Ventilator Troubles.

My Transplant Story: Part 5 – Released from ICU.

My Transplant Story: Part 5 – Released from ICU

I was then released from ICU, only a day after the vent was removed, and sent to the regular floor, where I was free of a lot of cords and IV's and I got to take my first shower!!! Which was awesome, you'd never know how much you miss water and showering when you have not gotten the chance for over 3 weeks. I also never want to see a baby wipe again! The other amazing thing (that I had not been able to do for over 6 months) was that I was able to shower by myself with ease!! Completely amazing.

Mom and I in my new regular hospital room.

After a day or so on the floor I was completely off all my IV's, eating good, walking, and people had been visiting. Besides how good I was doing I had very bad cabin fever and wanted to be home, the only bad thing about that was, I had to stay in Seattle for a while. For 3-6 months or whenever the doctors said I could return home.

In my regular room, only a few days off the vent and I finally got to wear REAL PAJAMAS!

I was only in the hospital a month (3 weeks ICU, 1 week regular floor) which after pretty much just getting out of the ICU we thought was pretty soon, but I was doing awesome and it was safer to be out of the hospital anyways. Going back to the thing I said about being sliced open and having one of your main organs swapped out, you would think that a month in the hospital isn't long at all! So my mom and I got a condo-like hotel in Seattle for the week, since it was my birthday that week, and a couple groups of our friends came down to celebrate it with us. Talk about the BEST BIRTHDAY PRESENT EVER. The gift of life!!! Really, tell me what can top that! My most amazing birthday celebration ever celebrating not only my birthday but my second chance at life which my donor and their family had given me so generously.

The only thing bad about my birthday is I had been getting sick over the past few days. Stomach issues, nausea, and vomiting. My mom and I were super sad since I had walked over a mile from the hotel just a day after we had checked in. As my tummy gpt worse I wasn't getting around as well and wasn't keeping food down. It was sort of off and on and we saw the doctor the next day and they gave me some anti-nausea stuff and said to try that as we thought I was just having trouble with all the new medications.

Read part 6 of the story tomorrow!!

If you missed the previous stories, you can find them using these links!
My Transplant Story: Part 1 – Listing.

My Transplant Story: Part 2 – The Call.

My Transplant Story: Part 3 – Waking up in ICU.

My Transplant Story: Part 4 – More ICU & Ventilator Troubles.

My Transplant Story: Part 4 – More ICU & Ventilator Troubles

It was super awesome that a bunch of my friends and family came to visit but each time was a bummer because I couldn't talk and I was pretty cranky most the time. I was pretty proud that a couple of friends flew a long ways to see me in the hospital. While others drove a long way, each person who came to visit meant a lot to me, even the ones I have no recollection of seeing (but they were there for my momma too!).

(We made a fake race bib because my mom had just ran a race and had the bib in her bag and we decided that going through the surgery was like running a race!)

While I was on the ventilator I used my computer a little bit, painted a horse sculpture thing, and annoyed my mom a lot. I tried really hard to distract myself but it was pretty difficult. It's weird how bad I wanted to be off the vent yet most of the times I was able to try to reduce support from the machine I would panic and have to let the machine breathe for me for the rest of the day. I realized that a lot of me getting off of the ventilator was my lungs and not me, as the whole time I sat there I thought it was my fault and that I was doing something wrong, even though they assured me I wasn't, I just wanted anything to speed up the process.

In the chair on the ventilator! (much harder to do that it looks)

After a few rough times trying to reduce the breathing support I began to worry about my new lungs and how it would be to breath with them. A few times I did really well, and after I started asking to stay on the amount of support I left off on overnight, I started progressing more rapidly. As opposed to going onto full breathing support overnight so my body could rest while I slept, I stayed on the reduced support that I had practiced on that day. After a few days of less and less breathing support at night I had gotten to the point where I would soon be able to be off the ventilator. Which I was both extremely nervous and excited for at the same time.

I had finally made it to the limited support they wanted me to be at and me breathing more on my own with the ventilator in. After that it was just waiting, day after day, for them to say the vent could be taken out. I knew they had to be careful, because its dangerous if it had to be put back in where the lungs were sown in. BUT I WANTED IT OUT!!! Then one day, the respiratory therapist came in, and yanked that tube out, and I don't think I have ever been happier in my entire life! My mom said my face looked just like it did when I jumped out of the plane skydiving, a HUGE smile.

Me, first day without the ventilator!! (fake tattoos on my hand that my friend brought haha)

So after I got that out, the next goal was FOOD! But since I had the vent in for so long I had to wait a few days to make sure I didn't get food into my new lungs. When the lady came to check my swallowing they decided NOT to let me eat until like the next day in small amounts. I was mad but waited and then was very excited for eating since I had not eaten for over 3 weeks and did not get much real nutrition because my feeding tubes had been acting up the whole time I was on the ventilator.

Read part 5 of the story tomorrow!!

If you missed the previous stories, you can find them using these links!
My Transplant Story: Part 1 – Listing.

My Transplant Story: Part 2 – The Call.

My Transplant Story: Part 3 – Waking up in ICU.

My Transplant Story: Part 3 – Waking up in ICU

I went in to surgery with the plan to ventilate one lung and transplant the other, ventilate the other lung and then transplant the second, but since my lung function (17% a month or more before) was not strong enough I had to be placed on a heart lung machine. In doing this they were able to, and they took BOTH LUNGS OUT, yes, I was laying on a table with NO LUNGS. Awaiting the surgeon to put the new lungs in, that to me, is just CRAZY… actually, crazy doesn't even begin to explain that.

I also got to meet some awesome cystic fibrosis and post transplant people while I was in the hospital!

Chillin on the vent pretty much...

Now waking up in the ICU was a whole other story. I was still vented when I woke up. Which is sometimes common but they said you would get off the ventilator in usually a few hours to a couple of days. This was not the case for me. I was handling things somewhat well so the started taking me off the sedation pretty quick. A couple times I sort of panicked on the ventilator. But after a few days I was going better. Every once in a while I would have a hard time or hard day, but I have to say, NOTHING about being awake on the ventilator is fun. Since I had been awake on the ventilator for 3 weeks I was going back an forth with my ability to handle the huge scratchy tube down my throat and the machine breathing for me. Sometimes I would gag and vomit nonstop. Once I started having trouble it was almost impossible to get my bearings back.

One of the reasons I was on the ventilator for so long was due to a perfusion injury that the new lungs suffered before or during the surgery. The other reason was because I had to start breathing on my own before it could be removed, so they would slowly change the percentage the machine was breathing for me and sometimes I had setbacks where I almost had to start over. At this point if it wasn't for my mom being at my side everyday coaching me to breathe I might still be on that thing!!

Walking… all those white containers hanging on the walker were hooked to TUBES coming out of ME!!! (by the way we counted 8 tubes, that octopus ain't got nothing on me!)

The reason I was awake the most of the time (as they would normally sedate you) was mostly because they had been trying to keep Ventilated ICU patients awake and walking so that they would not have problems from being sedated, bedridden, and that kind of thing. So yeah, I was up and walking, which I am thankful for everyday they made me do it! Because it made all the difference in my recovery. Even though it was HARD, and I really did not want to walk with all those tubes hanging out (we counted 8, 4 chest tubes, neck IV, ventilator, catheter, Port IV accessed, feeding tubes, among other things), I did it, and I believe it is the only reason I am able to run as much as I have 6 months post transplant.

Above: Walking in the ICU on the ventilator.

Initially lung transplant patients would wake up already off of the vent, if not a day or two at the most, and probably sedated, besides this ICU was trying to keep people awake, they sedate you at first to see how you handle the vent. So this is not what I was expecting, waking up to 3 weeks on a vent was a lot to sit through, especially with limited communication ability AND NO FOOD OR DRINKS. All I have to say is, extremely frustrating!!! I was NOT PREPARED for this, I am not sure what could have been done to prepare me, but it was a shock to say the least.

Fresh out of surgery with a fresh set of lungs!

Read part 4 of the story tomorrow!!

If you missed the previous stories, you can find them using these links!
My Transplant Story: Part 1 – Listing.

My Transplant Story: Part 2 – The Call.

My Transplant Story: Part 2 – The Call

The day I was re-listed (for the 3rd time) I didn't really think too much of it, as I had been listed multiple times before and nothing happened, while I sat on the list for months at a time. Never having any dry runs or anything I really thought it was going be a 6 month-1 year wait. Everyone was pretty excited I was at least on the list because I had gotten so sick but we didn't even get a chance to tell everybody when my dad came home that night to tell us we already had received the call.

We were pretty much in shock, as we were expecting that 6 month wait. We had not even had our go bags prepared yet! So my dad and I left for the 2 hour drive while my mom stayed behind to pack in case we ended up staying down there. (My dad and I just wanted to be there early as well, just in case) There was not one thought in my mind I would be having a transplant that day. I thought dry run, dry run, etc. And that's pretty much my thoughts, besides HOLY SHIT I might be having a lung transplant today. Although I was ready for transplant at this time, like entirely ready, and I needed it, I still didn't believe it becoming real. A surgery like that is really beyond comprehension.

Well that morning (after I slept in the ICU room overnight, not sure how I even slept to tell you the truth) some friends and family came and it was a little nervous feeling all around. Or at least I was nervous enough to poop my pants. Lol. They doctors kept pushing back the time they were suppose to take me into pre-op, we were just about to start a game, and then randomly they just showed up saying they were ready! We had waited for so long for this and I was finally being wheeled into pre-op.

Oooooh dear!

The thought of being completely sliced open in what you could be a few hours and having one of your most vital organs just swapped out for someone else's is almost impossible to comprehend. That happens with cars, computers, but with people?! Secondly my thoughts were also with the family at the bedside of their loved one while choosing to donate their organs to possibly ME as they take them off of life support and loose them on earth forever, an extreme mix of emotions. But really so many it almost becomes numb, since there is also that one thought…I really might not wake up, and if I do, I will have the whole world in front of me like never ever before. I will have new lungs.

So there I go, rolling back for new lungs. I don't even think I had feelings left at this point because it was so incredibly overwhelming siting where what was potentially minutes away from a surgery I had been waiting for nearly 6 years, and never really knowing if I would make it there. I knew for sure at this point I had nothing to loose, I had made it to my lungs end, and if I did not wake up, I fought hard and lived it up, so all I had now, was prayers for the donor and family, and the excitement of potentially waking up with the breath of life I had never had the chance to breathe.

Well there I was, in pre-op getting all ready for surgery, after butchering my wrist for an arterial iv and some other iv's they hooked me all up and I rolled away from my momma and dad. I think at that point I was a more scared for them, in case anything were to happen to me in surgery. But there was also the chance I wake up without lungs, the same as when I went in, if the surgeon decided that new ones were not suitable to transplant at the last minute.

All I have to say is, that was no dry run! I was rolled into the fancy operating room with a million machines and even a million more buttons, like something from TV. Some nurses were comforting me and they put a jelly pillow behind my head. And that's the last thing I remember….

Read part 3 of the story tomorrow!!

If you missed the previous stories, you can find them using this link!
My Transplant Story: Part 1 – Listing.