Good Times

That last ten days have not been too eventful, but there are a few things to report and talk about.  I want to start by explaining the picture of my fingernail.  The last couple days I have noticed how there is a dip in the nail and how it is growing back straighter.  As you can see in the picture the nail really curves and points down.  Also the side of the nail bed goes back pretty far on my thumb.  I have had clubbing in my nails for as long as I can remember.  Over the last few years however they have gotten significantly worse.  I would see the dip in my nail and the new nail coming in would be even more curved.

Well now I am seeing the opposite.  I was told that some people will see clubbing decrease or disappear after transplant while some don’t see any change.  I was always hopeful my clubbing would go away, but I was not counting on it.  Now that I see this I am a little excited.  I am taking a picture now to see how it will look in a few months.

Jay got back home on the 16th.  He called me on his way home telling me that he thought he had strep throat.  This made us both a little nervous with my decreased immune system. I called my coordinator and she told me to call her once Jason got the results back.  He had the test and it came back negative, but the doctors there gave him meds for it anyway.  I told my coordinator and she said for the time being we are not going to do anything.  They don’t want to give me antibiotics unless necessary.  So when Jason got home we stayed apart and he slept in the spare bedroom.  The next day he felt pretty horrible.  I had to go to Quest for some blood work so we decided I would bring back some Duff’s chicken wings for lunch.  It was on the same street as Quest so I figured it was perfect.  After the blood work I went into Duff’s with my walker and brought out the chicken wings.  May not seem like much, but this is a big deal for me.  I have not taken my car and picked up something by myself in a long time!  You have to think I just started driving again about a month ago, and before that it was over a year.  Plus I did not only drive somewhere, I walked inside and got the food!  For awhile before I stopped driving, walking in somewhere to get something was exhausting.  Just walking into a store like Walgreens exhausted me.  I would be winded before I got to the door.  I love being able to continue to report these milestones.  They may be simple things, but for me they are just that, milestones.

I came back with the food and we ate it.  It was nice to be able to do something for Jason for a change, especially when he doesn’t feel good.  Luckily he is better and I don’t have any signs of it.  My incentive spirometry is up to 2100, still climbing. My spirometry however is down to 290.  It fell after the broncoscopy and has not gone back up since.  Not sure what is going on there.  I was hoping it would be back up by now.

On September 23rd Jason headed back to Florida for work and Bobby came up to stay the night.  I had a doctor’s appointment the next day and he was going to go to with me.  So he came up the night before to hang out.  The next morning we headed to a small airport in Lancaster.  Joe wasn’t able to fly me this time so we were flying with a volunteer pilot named Mahesh.  He was a very nice guy.  Bobby talked to him more than I did because for some reason I fell right asleep once we were in the air.  I don’t know why, but I was tired.  Anyway we found out that he doesn’t get to do too many flights for wings flight.  People normally have doctor’s appointments during his work hours, but he does a lot of flights for animals.  He goes to shelters and transports the animals when needed.  I think that is awesome.  I have a friend on Facebook that is really big on getting awareness for that too.  Down south there are a lot of kill shelters so shelters up north will try and save some of the animals down there, by bringing them up here to be adopted.

The appointment itself went very well.  Bobby and I went straight to PFT’s since I was able to skip x-ray.  The wait there was a little long again, but not horrible.  Bobby and I had some lunch while we waited.  I was then called in for PFT’s.  My weight is now up to 95 pounds and my FEV1 is 83. I was sad to see there was no real increase this time.  I guess I am not too surprised considering my spirometry is down a little.

I mentioned this to my coordinator and my doctor when we went in for the appointment. They both said the same thing.  Sometimes it can take a couple weeks to really recover from a broncoscopy.  They told me not to worry about it. My FEV1 did not go down so there was nothing to be concerned about.  I asked about the temperature sensitivity in my hands and feet.  I was told that can be a side effect to Cyclosporine.  It should get better as my levels become more controlled.  If not there is a medicine they can give me to take care of it.  There is still nothing on the pictures of my lungs from the surgery.  I asked again and she said the surgeon still has not sent them to her.  She emails him and he says he will send them to her and then he never does.  She is going to keep trying for me though.  I also asked her about flying.  Jason and I are talking about a vacation to Florida and I wanted to make sure it was OK for me to go.  She gave me the OK to fly as long as I wear a mask on the plane.  I also asked her about swimming with dolphins.  My friend Kelly works with them down in Florida and invited me to come down there and swim with them.  She said I could go and see them, but I could not get into the water with them just yet.  That is a slight bummer, but I am so excited about being able to go on a vacation I am not upset at all.

When the appointment was over Bobby and I went outside of the hospital to get a taxi back to the airport.  The driver told us $65 and claimed he knew where we had to go so we got in.  After we got into New Jersey it was obvious he had no idea.  He turned off the main street and started going into a residential area.  I asked him where we were going.  He didn't seem to know much English and looked really confused.  He didn't know what I was trying to tell him.  Common sense should tell you that an airport is not going to be located in a residential area.  Bobby ended up pulling up the directions on his phone and giving him step by step directions.  When we finally got there he told me the total was $90.  I told him sorry $70 was all I had.  He didn't seem too happy with that.  That was too bad.  He said $65 and to be honest he is lucky I gave him any extra.  The last three times have been like pulling teeth to get back to the airport.  We then met up with Mahesh.  It didn't take too long to get everything together and get out of there.  It was a long day and I slept most of the way back.

Here is a picture to compare a set of PFT's before transplant and now. The first row of numbers is called predicted.  This is the amount that I should be able to do based on my height and weight.  The first set of numbers is post-transplant.  The row labeled actual is the number I got and then %Pred is my actual compared to the predicted amount.  The set after that was my PFT's from Children's shortly before I was called for transplant. The graph on the bottom of each shows me taking in a deep breath and then blowing out as fast as I can.  Post-transplant I am able to inhale about 6 liters.  Pre-transplant I was only able to hold about 2.  The graph also shows how fast I can blow out.  You can see the huge difference in the look of the slopes.  The decrease in how fast I could blow out was due to all of the obstruction in my lungs caused by the mucus, infections, and scar tissue. As you can see the numbers before transplant were very low.  I had a few that were lower than this.  I used this one because this was the last one taken before transplant and because this is where I was hovering after a tune up.

Earlier today I got a call from my coordinator.  My Cyclosporine level is really high.  That is my anti-rejection medication. They want the levels between 250 and 350 and it is 438. I was told to stop it for two days and then decrease from two three times a day down to one three times a day.  Also my white blood count is high so they are putting me on Augmentin as a precautionary measure.

For dinner my mom and I went to the Melting Pot.  This was her birthday present from me.  I wanted to take her out to eat here because she had never been and I had eaten here with Dad and loved it.  The last Wednesday of every month is Ladies’ Night so we thought that was perfect.   The special was a three course meal.  This worked for me because I can’t have salad anyway.  The one problem with melting Pot is that a lot of the dippers are fresh vegetables and fruits.  I was still able to eat everything though because the waitress put everything in the microwave for me.  It made the apples a little soft, but it still tasted fine, especially after dipping it in the cheese.  Cheese makes almost anything taste better. Haha  We both really enjoyed our dinner.  The food was great and it was nice to be able to do something just the two of us.