Rehab

This last week has been pretty eventful, but for the most part a good one.  I spent the whole weekend with Erika and Dad and we got to watch some movies.  I have more energy and have recovered completely from the stroke.  I have started rehab and I am on my way to being able to go home.

Friday night Dad and Erika helped with moving all my stuff from my room on floor seven to floor eight.  After they did that they went to the hotel to catch up on sleep.  When they came over Saturday morning Erika was like a new person. Lol  She looked so refreshed. This whole transplant process was exhausting for more than just me.  Right when she and Dad got to my room a window washer was at my window!  She was so excited about this and was taking pictures. Haha  I will admit it was neat to see.  I had never seen this myself and it was fun to watch him. She said this was her new dream job.  One of the nurse’s aides came in while he was hopping around on the building and she said they make good money too.  haha  After all of that excitement my physical therapist came for rehab.  She showed all of us where the two gyms were (Physical Therapy gym and Occupational Therapy gym) and then we went for PT while Erika and my dad went back to my room.

I wasn’t able to do much of anything at PT.  The muscle in my left shoulder was having spasms causing my back to hurt. This was really affecting my ability to do any exercising so she did massage on it.  She also did some stretching to my legs. They were very tight due to all the laying in bed and also the decrease in amount of Baclofen.  The Baclofen relaxes my legs and with the decrease they constantly felt tense.  Afterwards she gave me a hot pack to use in my room.  The hot packs from PT are so much better than the throw away ones on the floor.  The moist heat is so much warmer and goes deeper into the muscles than the little ones.  I had lunch and then shortly after that my occupational therapist came for me.  She showed all of us the OT room and Erika again went camera crazy.  She loved the taxi cab.  (I will make that my picture for the next blog).  Again they left while I did stuff with my OT.  She asked me what I wanted to do and mentioned to me a few things. When she mentioned getting my hair washed I jumped on that one.  I wanted my hair washed so bad.  Early that morning a woman came into my room around 7:00 and helped me bathe and change my clothes.  I found out this is something that they do every morning, however they do not wash hair.  I was going to ask Erika to help me with my hair later that day, but was so happy when I found out I wouldn't have to.  She has been helping me do everything.  This includes transferring back and forth to go to the bathroom.  She is more than a best friend to me and I am completely comfortable around her, but it doesn't make it easier for me.  It is hard for me to ask her for all this help.  My best friend should not have to do these things for me.  So when I found out they could do this I definitely took her up on it.  This way Erika and I could spend the rest of the day just hanging out, not her taking care of me.  To wash my hair they have this really neat thing.  It is a long, flat plastic thing with one side shaped to fit around your neck and then the other side goes into the sink.  This way the water goes over the hair, onto this thing and then into the sink making little or no mess.  It is great.  This would have come in handy all these times at home and in the hospital at Children's.  After that she brushed my hair and had me try and blow dry it.  I was able to do a little, but I needed her to finish.  Blow drying my hair took a lot of energy it seemed and my shoulder/back was still pretty sore making it hard.  After she helped me with my hair she showed me a few things I could do to try and help my back a little.  Other than that we didn’t do much.  So the first day was pretty uneventful due to the pain in my back, but I am excited about it.  The pain is so bad because I am in the bed all day and sleeping on my back all night long.  I am expecting the pain will be less as I work it more.

On Saturday I was also given the results of my broncoscopy.  They told me that I still have some psuedomonas in my lungs. This was not news that I wanted, but it is not surprising.  I had a lot of that in my lungs before the transplant.  Most of it was in my lungs, but there was also some in my chest cavity (which they spent a long time cleaning out), and more than likely some in my nose and trachea.  I have been on a lot of antibiotics since the surgery, but since there is still some pseudomonas in my lungs they are going to give me more.  Last I counted I was on about five or six different antibiotics at one time.  They told me before the transplant I would be on a lot of antibiotics.  They weren’t kidding and right now they are not playing around.  They are serious about getting rid of all of the bacteria, especially because I have a very limited immune system to do it for myself.

The rest of the weekend was pretty relaxed.  Erika, Dad and I mostly watched movies and just hung out.  I have such a good time with Erika no matter what we are doing.  I am always laughing with her and this weekend she really got me laughing.  This is something I have not done in a long time. For the last few years my laugh was a small giggle followed by coughing.  This weekend though, it was an actual laugh.  Yeah, it hurt, my incision wasn't too impressed with the laughing, but for me, it felt wonderful.  I was laughing and saying to Erika, "Ow this hurts" all the while with a smile on my face and continuing to laugh.  The pain I was feeling was nothing compared to how good it felt to laugh.  Dad went shopping for me at a store by his hotel and got me drinks and snacks.  He got me some juice, pop, lunchables, chips and other miscellaneous snack foods.  He also got me salt, pepper, and some sugar.  All of this was greatly appreciated because the hospital does not season their food at all.  Understandable being a hospital, but it was not working for me.  Also I was getting really hungry between meals.  I can’t believe the amount of food I can put down.  This is a picture of me eating a lunchable. Erika took it and sent it to Kelly.  She wanted to show her how I am eating all the time.  My body can't seem to get enough food.

On Monday my dad had to go back home for work.  He has been here every day for two weeks and it was time to go back. His work has been awesome and understanding the entire time.  My dad told them about the transplant before it happened and they said when it happened all he had to do was let them know and then go be with me.  When I got the call he told them he was going and he wasn’t sure for how long.  They told him to go for as long as he needed.   I am very grateful for this because he has really helped me a lot while down here.  He did whatever he could to help make me as comfortable as possible.  That morning came over for breakfast and stayed with me until PT.  He wanted to stay until we got word about when I was going home, but he had a long drive ahead of him.  It was hard for him to leave, but after two weeks we both agreed that it was time for him to go home.  He said he would come and visit me if I was still in the next weekend.  That won’t be the case however, because the rehab doctors had a meeting early Monday morning and told me my estimated discharge date would be August 1st.  When I found out I immediately took a picture of the board and sent it to my dad.  I also called some of my family and friends.  They are all so excited about my discharge date.  They can’t believe how fast I am going to be getting out of here.

Physically, my body is recovering and adjusting to the meds pretty good.  The only side affect right now are the palms of my hands have begun to peel.  The doctors believe it will heal quickly.  It is a little uncomfortable and sensitive to the touch so they gave me some cream to put on it.  They are still having a hard time adjusting my anti-rejection medication cyclosporine.  They want it high enough to work, but low enough where it won't damage my kidneys.  For some reason my body is not absorbing it.  My left shoulder is still sore, but every day is better.  The incision itself does not normally hurt.  I only notice it when I try and reach for things or if I try and lay on my side.  I am still only able to sleep on my back and this is so annoying for me.  Today I was able to get off my chair and use the toilet on my own.  I did flush it, but I won't be doing that on my own for a little while.  Believe it or not pushing down on the handle really hurt my back and the side of my incision.  Still commode to toilet = progress.  Also every day I have to use this thing called an insentive spirometry.  I breathe in for as long as I can and it measures how much air I can get into my lungs.  The last time I measured before transplant it was around 500 (I am sure it got lower).  The first time I used it after transplant I was at 750 and now I am up to 1,000. Jason can do it all the way, it goes to 4,500, and he continues to inhale after that.  Show off.  Lol

Jay also came back from Buffalo.  He went back for his brother’s wedding over the weekend.  I was sad that I missed it, but I was really happy that Jason was able to go and have a good time.  I was really happy to see him and he was happy to see how good I was doing.  Nothing was lingering from the stroke and he was so grateful for that.  Since I was doing so well he decided to tell me a few things that he had kept from me.  He was a little more honest with me about a few things also.  He told me that I was a lot more bloated than anyone has really said to me.  When I would ask about it I was told “Yeah you were pretty bloated, but not that bad.”  I guess that was a lie to make me feel better.  He told me that after my surgery my kidneys weren’t looking too good.  I was not peeing much at all and the little that I did was brown.  Thankfully that didn’t last and my kidneys recovered.  He told me that after I had the stroke I was in a coma for about a day and a half.  I had no idea.  That explains why I couldn’t believe the date when I was moved back to floor seven.  He also said that when I woke up from that coma, I tried to pull the breathing tube out of my mouth.  He had to have my hand tied to the bed because I wouldn't stop.  I do remember a little bit when I was trying to move my hand and couldn't.  I was confused as to why my hand was stuck to the side of the bed.  I hadn't remembered that until he mentioned it to me.

I asked him why he kept these things from me.  He told me that he wanted to wait for me to recover a little bit and make sure I could handle and process it.  Honestly I know I could have handled it at any point, but I love how he thinks of me and tries his best to protect me.

PT went better Monday, Tuesday and Wednesday.  My back is still really sore and I need the hot pack in order to be able to do anything, but at least I was able to participate and do things.  Right now we are working on exercises because I am too weak for walking.  I took a few steps for my PT and she said I am so weak that every muscle in my body is working to get me to walk.  This is not a good thing.  She doesn’t want to cause any injury by doing things too fast so right now the focus is on strengthening.  We are doing a lot with my quads and my core muscles.  I asked her how long she thought it would take for me to be able to walk on my own again.  She told me that for every day I was in my wheelchair multiply that by two. She also said to me that I have a good attitude and that is 80% of recovery so she sees me making progress quickly.  I have been reliant on my wheelchair for about two years, and little to no walking for about a year and a half.  This is going to be a longer recovery than I thought.  I just have to work hard and be patient.

Wednesday after PT I was scheduled for another bronchoscopy.  I have not been feeling too great since I got that done. Yesterday and today I have been nauseated.  I thought it was from the anesthesia, but that should be out of my system by now.  The only other thing I can think of is the fact that they tripled the amount of one of my antibiotics.  I mentioned it to one of my doctors and told them how it was making me nervous.  I have heard horror stories about all of these meds doing damage to the kidneys, plus knowing that my kidneys have already been over worked and had to recover.  I just got a transplant and things are going good.  That is one of the last things that I want to happen.  He told me not to worry and they are watching my kidney function very closely.  I was also told that I am having some rejection.  This really surprised me, but the doctors said this is very common.  Most lung transplant patients will have some acute rejection in the first year.  They are going to give me three doses of IV steroids and I should be fine after that.  For now I am going to go and lie down and hopefully feel better tomorrow.