The Maze

Yesterday was another appointment for NYC.  I have to go to there every week for about ten weeks and then they will be a little less frequent.  Before I talk about the appointment however I will briefly mention last week.

Friday I was able to make dinner for Jason, Courtney and I.  I have not been able to make dinner for us in I can’t remember how long.  It was so nice to be able to do this.  Jason and Courtney did help me a little.  By the time everything was done, my legs were so tired and I needed to sit down.  It didn’t matter though because I was able to do it.  Right before the transplant it was work to make myself a peanut butter and jelly sandwich and I had just made a pasta dish.  I felt great.  The soreness was just a reminder that I worked the muscles in my legs.  They were strong enough to get me through making this meal.  It was chicken
cooked with tomatoes and spinach.  I made the Alfredo sauce from scratch out of cream cheese, half and half, Parmesan cheese and butter.  I then added some tomatoes to the sauce for some added flavor.   I then put everything over angel hair pasta.  This was one of Jason’s favorite homemade meals and I was nervous it would not come out good.  It had been so long since I had done it that I almost forgot some of the steps.  To my surprise though the dinner came out great.  The chicken was a little dry, I cooked it a little too long, but that is something I will get in time.  I have to learn to cook chicken all the way, but not make it dry.  I challenge I am up for. I was so proud of my first dinner that I had to take a picture of it.  And even though the chicken wasn’t perfect everything tasted great and I was so excited to be able to eat it.

PT is going very well.  My right thigh has been a little sore.  The muscle feels like a pulling/burning feeling.  It is hard to describe.  No pain no gain.  My left ankle is very weak so Monday we started electric stimulation.  It is an electrical pulse that causes the muscle to contract.  She placed it on my lower leg to get my toes to come up.  It pulses and when it is on I have to try and pull my ankle up with it.  This teaches me where the muscle is and how to access it myself.  We did that for about eight minutes and I was able to find the muscle along with the stimulation.  Yay for progress!

My spirometry numbers are getting higher as well.  My spirometry is up to 340 and my incentive spirometry is up to 1650. My stomach issues are also getting better.  They are not gone, but my stomachaches are less frequent.  Eating yogurt before I take my medications seems to help with that part.

Monday night I also sat around a fire with Jason and Courtney.  We have a fire pit out back and it is nice to go out there and sit around it.  I hadn’t done it since I had been home due to being so tired this week.  I had the energy to go out for a little while and I was happy I did. I want to enjoy the nice weather for as long as possible.  Sadly you can tell the summer is going away.  This makes me sad, I hate the cold.  Haha

Tuesday I had another appointment.  Gram came with me to this one again.  Same thing we flew with Wings Flight.  When we got there Paris was not working.  We figured we would be fine finding all the places on our own because we had done it the week before. That was a mistake.  I have no sense of direction and I think that was passed down from my grandma.  Thanks Gram.  Lol.  First we went to the wrong elevator to get to Herbert Irving Pavilion.  Figured that out pretty quickly and went back to Milstein.  We then headed to the correct elevator, but OMG it was taking forever.  Whenever an elevator came to the floor it was full.  Finally we found out that there was another way to get there so we tried that.  Well long story short, it did work but it was long and out of the way.  We really should have just waited.  This hospital is huge and you can easily get lost in here.  It is like a maze if you don't know where you are going.  Well by the time we got to radiology it was lunch time.  We sat there and waited for them to call me in for an x-ray. Finally I was called and less than five minutes later I was done.  That is something I hate, having to wait over thirty minutes for something so quick and easy.

After we finally got out of there it was time for PFT’s.  I was looking forward to them again.  With all the progress I was seeing at home I knew they were higher.  When we got there I saw there was a few people ahead of us so I pulled out my lunch and started to eat it.  Of course when I did that they called me.  I was happy to see the results.  My FEV1 is now up to 74!  I LOVE seeing those numbers increase.  This totally made up for the horrible running around me and Gram did this morning.

We then went up for my blood work.  After I got that done Gram and I waited in the waiting room for the appointment.  While we waited we were able to eat lunch.  Like I said, we were learned our lesson last time.  We were finally called into the appointment and that was great news too.  My x-ray was beautiful and there are no signs of fluid on my lungs anymore.  Because of this she took me off the Lasix medication.  She was very happy to see my PFT’s.  She said that the if someone was just reading this and it did not have post lung transplant on it, they would not know the difference and consider these normal PFT's!  This really made me smile.  She told me I was doing so good that I don’t have to come for an appointment the following week. The news just kept getting better and better.  The travel is a lot easier with Wings Flight of course, but it is still great to hear we will be able to do what we want next Tuesday.  I know Joe, the pilot, will be happy to hear this too.  The one concern I mentioned to her was my voice.  It is still a little scratchy and sometimes my voice will crack.  I will be talking and the pitch might change or I lose it for a second.  I was wondering if that was something that would heal and if so would it heal on its own?  She said that was normal due to having the breathing tubes and broncs and to give it a few months. There is a way to fix it medically, but they prefer it to heal on its own.  I am not sure exactly what that would entail.  I didn't ask because I will wait a few months and see what happens before I worry about it.

While talking about skipping the next appointment she was telling me that she wanted to move my broncoscopy for the following week.  I was disappointed to hear this because I really wanted those staples taken out.  I was told the week before I had to wait one more week and now I am being told another week.  She looked at me confused asking why I wanted the bronc so bad.  No one ever asks for a bronc to be done sooner.  I told her about the staples and how I wanted them out so bad.  She looked at me with a smile and said if I wanted she would take them out right there.  I told her I thought they had to be removed during bronch.  She explained to me that she does normally take them out at the same time as the bronc because timing wise it normally falls like that, but it is not necessary.  I had to think for a second because I wasn't sure how this was going to feel.  I wanted them out bad though so I told her to give it a try.  She pulled out one to see how it felt to me. I didn't even notice it so I told her to go ahead and remove them all.  As she was removing them she told me she didn't think I would feel it because it seems like I have a high tolerance for pain.  She didn't want to say anything though because some people don't feel a thing while others are in tears.    It only took her a few minutes to remove all 91 of them.  The only ones that were a little uncomfortable were the ones on the side.  She said they looked a little red and is more than likely due to the fact that those are affected by my arms moving.  When they were all out I felt great.  I thought it felt good to get the sutures out.  This was 10x better.

When we got back into town I met up with Erika!  She was in town for a residency interview.  I hate that she is so far away.  It worked out that we were both in NYC for my transplant, but now that I am back home I miss her that much more!  I was so happy she was able to squeeze us into her busy schedule this week.   I love seeing her. We all went out to eat at Gordon Biersch where we had a wonderful server.  The one and only Courtney!  It was the perfect end to a great day!