I Will Survive

I was moved to floor seven on Monday July 15th and was there for five days.  Although I was better health wise, this was probably the hardest time for me.  I was alert and knew what was going on, but physically I was sore and could not do anything for myself.  I lost any independence that I had and I had to lose my modesty.  I needed help with everything. I knew things would get easier as days went by, so that is what I did.  I went day to day knowing things were already better.  I knew it would be a journey even after I got the lungs. I didn't expect it to be easy.  I got the lungs so there was not much to complain about.

Monday, July 15th

Waiting to see if I can move to the OR

Today I was moved from Medical ICU to floor seven.  I was not put in the room that I was originally put in the day I had the stroke, but I still got a room that had a view of the Hudson River.  Dad and I were both happy about this. However, coincidentally this was the same room I was put in on July 6th while I waited to see if I would have new lungs.  The start of the day was pretty good.  The surgeon that removed my donors' lungs came in and talked to me.  I asked him about pictures of my old and new lungs and he told me they had to be somewhere and he would look into it for me.  He also told me how well I was progressing and said the last x-ray showed that enough fluid was drained from my lungs to remove the last two chest tubes.  This was awesome news to hear.  The tubes were extremely uncomfortable and I was ready to get rid of them.  I had to be careful how I moved and I was constantly reminding people where the tubes were.  When nurses were repositioning or moving me for some test they were always getting caught on something and pulling of any kind was painful.  The doctor started explaining to me how he would pull them out and what I had to do while he was doing it.  I was told that I would take a deep breath in and then bear down on my stomach until he told me it was ok to stop.  This was important because he didn’t want any air to get in while he was pulling the tube.  He explained to his resident that the surgeon made a stitch that would pull closed when the tube was out.  He was telling him how this was a hard stitch to do and how beautifully the surgeon had done it.  He warned me it would not be pleasant, but I already knew that.  I had Dad in there with me so I could hold his hand through this.  I have a high pain tolerance, but I knew this was going to be more than I would like and having a hand to squeeze always helps. Side note:  This is something I learned from a PICC line nurse.  Always offer your pointer and middle fingers, not a hand, when helping someone through pain.  No matter how hard someone squeezes those fingers it will not hurt you.  A hand…that will hurt.  Try it on yourself if you don't believe me.  :)  So I took my dad’s fingers and got myself ready for this.  He then told me to take that deep breath and bear down with all I could.  I did.  I took that deep breath and started squeezing with all the abdomen muscles I had.  While I was doing this he was pulling the tube.  It hurt so bad and I wanted to stop squeezing but I knew that I couldn’t.  It was finally out and he told me that I could relax.  It didn’t last a long time, but it sure felt like it did. When it was out it felt so nice on that side.  The moment however was bittersweet, because I knew I had one more.  He gave me a minute and we then repeated what we just did.  After he was done he told me that things went good.  He then told me that a nurse would be in to remove my catheter right after he left.  He was right because as he was walking out the door in came the nurse.  I expected this to be a little uncomfortable, but to my surprise I felt nothing.  I don’t know if that is normal or if it just felt like that because I had just had the tubes removed.

After the catheter the only tube remaining was the feeding tub.  I still had the oxygen, a heart monitor and pulse ox attached to me, but that was minimal annoyance.  The one downfall to having the catheter removed was now I needed a commode. I could not walk to the other side of the room to use the bathroom.  I was still hooked up to a few things and I did not have the strength to go that far.  I actually needed help just to get off the bed and get to the commode.  Once on the commode I could sit on it and pull my pants down, but I could not stand up and pull them back up myself.  It was embarrassing to have people helping me do this, but I had no choice because I could not do it on my own as much as I wanted to.

After all that was done Dad and I just hung out in the room playing the waiting game.  We were waiting for Gram and Betty to come, but we were also waiting for someone to come and give me a swallow test.  I was not able to eat any food or drink water until I had this test done.  This was because after the stroke I had thrown up and aspirated into my lungs.  This is when food, drink, or stomach contents go into the lungs.  I had to have a broncoscopy and have this material removed. They suctioned everything out and I tolerated it well, but this is not something they want to happen because it can lead to rejection of the lungs.  I was supposed to get a swallow test on Friday before I moved out of ICU, but they were busy and ran out of time.  I was then told maybe Saturday, but my dad found out that they were not even in on the weekends.  I was very upset that I would have to wait all weekend.  I remember trying everything in the book to get my dad to at least give me some water, but I failed and he would not buckle.  I even tried "If you love me Dad..."

Gram and Betty showed up around 2:00.  I was so happy to see them.  I was also very happy when Grandma gave me my glasses and my phone.  I was so happy to be able to see again.  I was having a hard time focusing on things even when I put the glasses on, but between surgery, not having my glasses since Friday, and everything else that happened to me, I knew it was something that would get better.  One of the first things that I noticed after I got my glasses was the board on the wall of my room.  It had a lot of the hospital information, the name of my nurse, among other things, but the thing that stuck out at me was the date.  I could not believe that it was July 15th already.  I had no idea that many days had gone by because it sure did not feel like that at all.  I mentioned to my gram and dad how I couldn't believe that much time had gone by.  It only felt like a few days to me, but I can only imagine how long it felt like to my family.  Getting my glasses was not the only reason I noticed the date.  I was also becoming more mentally aware of what was going on around me.  I was retaining my memory and understanding what was going on.  Another thing that I hadn't noticed was the huge black and blue mark on my wrist. I could not believe it.  I was told it was caused when they had to do the continuous ABG's on me.  If you are interested in seeing it, click here.  The more aware I be

My gram and Betty were so happy to see me and told me that I looked really good.  I didn't feel great, but I was told that I was looking better and better every day.  We all caught up while we waited for the swallow test.  When the PA came by we told her that we were still waiting.  She said she would find out what is going on.  She came back to us and told us they ran out of time.  They promised I would be the first one seen the next day.  That didn’t make it any better for me.  I still would have to go another night with no food or water.  I wanted to eat and I was so over sucking on a sponge for water.  No one was happy about this, but there was nothing we could do about it….

Tuesday July 16th

Dad and Grandma came over early in the morning.  Dad said he would get me whatever I wanted so I told him I wanted a doughnut for breakfast after I had the swallow test and then some French fries for lunch.  I was promised that I would be first on the list for a swallow test so we were expecting them early.  The PA came in late morning and we told her that I still had not gotten this test.  She said they were busy and were on their way.  I was pissed!  I was told I would be first, not fit in when it was convenient for them and I told her this.  She said she would contact them and get them here as soon as she could.  She felt bad, but had no control over what they did.  My dad ended up going and talking to patient services and filing a complaint because of this.  While my dad was gone talking to patient services, they actually showed up.  She gave me a glass of water and had me swallow a very little bit while she listened to my throat with a stethoscope to make sure I was swallowing it correctly.  I passed the test, took a little more and passed that too.  The whole process was less than five minutes and she was gone.  I was annoyed with them because seriously?  They have been backed up and couldn’t fit me in? That was the easiest thing ever.  I got over it relatively quickly because Dad promised me French fries after I passed the test. He went down to McDonald’s and got me some French fries and chicken nuggets for a late lunch.  I was so happy to be eating!  I was chowing down on those French fries and then went over to the nuggets.  I was eating a little too fast and my dad told me to slow down.  I couldn't help myself though.  I was so hungry and it felt so good to be eating something.

Things were pretty good for a few hours.  Jay was back from Buffalo and I was really happy to see him again.  We were all talking about some site seeing Dad, Gram and Betty could go and do.  They were talking about going to see the 9/11 Memorial.  I really wanted them to get out of the hospital for a little while and enjoy themselves.  Being with me at the hospital everyday is boring and I wanted them to enjoy the city at least a little bit while they were there.  It was Gram’s first time ever being in NYC.  She had never even been though the airport there.  While we were all talking Jason tried to set me up with the computer, but I could not use it.  For one thing I was having a hard time sitting up high enough to use it comfortably on the table while sitting in bed.  I was only able to sit in a chair for five to ten minutes at a time before I had to lie back down.  I was having a lot of pain in my left shoulder blade and that was really making it hard to do much.  My back was really weak and I definitely couldn’t sit up in the bed on my own yet.  I was also having a hard time entering in my password.  I knew what it was, but typing it out almost seemed impossible.  I was having a hard time spelling it in my head. I was hitting the keys, but not sure what key I had just hit and what key to hit next.  It is really hard to explain the confusion in words.  I had to give it to Jay to enter because every time I entered it in, it came back incorrect.  It was frustrating to the point I didn’t even want to use it.  If I couldn’t type in my password how was I suppose to make a status on facebook?  I told jay that I didn’t want to use it yet and he understood.  Right after that my PA came in to go over a quiz I had.  It was full of questions asking things about transplant.  What anti-rejection meds am I on?  What fruits interact with my meds?  When should I call transplant immediately?  Things like that.  We were getting through it and all of a sudden I got confused. We were asked, “What do you have to do before you go to the dentist for a cleaning?”  I looked at Jason wanting him to answer it.  She then asked me another one and the same thing happened, I looked at Jason with a blank look.  She asked me if I was tired and I told her that I was.  Jason then asked me where was I and I told him Dunkirk, NY. Right away they took me down to radiology.

While laying in the bed waiting for the tests, I was talking to my PA.  I was completely lucid and knew exactly what was going on, I just couldn’t find the words I wanted to use or I was using the wrong words for things.  My PA was awesome. She stayed with me and talked to me for awhile and she understood.  She knew that I was there and just messing up my words.  I was definitely not as bad as I was the week before.  I told her how upset I was that this was happening.  My family was suppose to go out for awhile and enjoy themselves and I had a feeling they were going to skip all that because of me. Here I was scaring them yet again.  I was angry at myself.  She told me not to be mad about it and she told me that my family was not mad at me either.  They were there for me and just worried and wanted to know what was going on.  I knew that was true, but I was still mad at myself for putting them through this.  Of course they weren’t mad at me, I was mad at me.  I just wanted to go back to my room and sleep off what was going on to me, but it didn’t look like that was option for the doctors.  I went in for a CAT scan and it was the same as the previous one.  Then they decided to do a CAT scan with contrast.  In order to do this they had to put a needle in my arm.  They kept saying it wasn’t working and they didn’t know why.  It took nine tries to get the contrast in!  They kept sticking me and telling me that it was going to hurt.  I was ready for it…it hurt and after the fourth or fifth time the pain was there, but it was barely phasing me.  I just wanted them to get it so we could get this testing over with. I was thinking to myself this is unnecessary.  All I could think about was what my family was thinking while I was down there.  I wanted to go back to my room and let them know I was ok.  A woman came over and she finally got the contrast in and they did the test.  I felt like the entire thing was a waste of time.  I knew I was talking strange, but I wanted to sleep it off.  I was then wheeled out and waiting to be transported back to my room.  While I was laying there I started to get nauseous.  The woman transporting me gave me one of those pink buckets just in time for me to throw up.  I was really worried about this.  The last thing I wanted was them to take away my food again.  I had just gotten it back and all I was able to eat was French fries and nuggets!

When I got back to my room I asked my nurse about dinner. I had missed dinner being delivered and I was wondering if I was going to get anything if I was even allowed.  Luckily the doctors did not take it away and the nurse said they were going to find something for me.  This was an interesting conversation because I was using incorrect words.  My grandma and Jason figured out what I was asking.  I had to almost play a game with them and try and explain it using words that came to me.  They would guess correctly what I was talking about and then I would move on to the next step.  Like the game taboo I was trying to get people to know what I was talking about without being able to say certain words.  On top of that I was a little warm and I wanted my fan that Jason had in the car.  I kept calling the fan a gazebo and that took awhile for them to figure out too.  When Jason figured out what I was saying he told me he would go out to the car and get it once everything was set up for the EEG and I cooperated.  I wanted nothing to do with the EEG.  It is a whole bunch of crap on my head that was heavy with a lot of glue to keep it all on.  I remember my mom removing all the glue from my head after the first EEG.  I didn’t want all that crap in my hair again.  That and I didn’t want to be hooked up to something else.  I was getting things removed and it felt so good.  I didn’t want to take steps back…and that is what it felt like to me.

That night they had a nurse’s aide stay in the room with me the whole night.  My grandma also decided to stay with me too since the nurse had brought in a bed earlier.  The aide was very nice and that was a good thing because I kept her busy that night.  For one thing I had to go to the bathroom quite a bit.  I was on a medicine called Lasix which is a water pill.  This was to remove the fluid that was on my lungs, a common thing after a lung transplant.  I was still unable to go to the bathroom on my own so every time I had to go she had to help me out of bed.  I was also very sore and could not get comfortable.  The only position I could sleep in was on my back and I am normally not a back sleeper.  Plus my right shoulder was really painful.  I kept asking her to help me reposition myself.  It definitely was a long night.