Doing Too Much

I didn’t feel too great on Monday.  I was tired and worn out.  I think I might be trying to do a little more than my body is able to just yet.  I feel fine and I want to go, go, go!  I have been sitting around for too long and there is so much to do.  I have to keep reminding myself that my body is still healing and to take it easy for a little while longer.  I have to at least take more breaks... so that is what I did on Monday.  My brother came over to visit and we had some TV series on my DVR that we had to catch up on.  So all we did was hang out on the couch watch those.  We were both very lazy, but we both really needed it.  He had put a lot of hours into work so he wanted a break himself.    Plus I had a busy day coming up on Tuesday.  It was my first appointment to NYC after my transplant and I had to get up really early the next morning.

I was up at 5:15 so I would be up and ready to leave with Gram by 6:45.  The night before I was figuring in my head how much time I should give myself.  I was not sure how long it would take me to get ready in the morning and I wanted to give myself plenty of time.  As I was listing things I had to do I actually counted the vest in at first. I am so use to it being in my routine I automatically listed it.  It was nice to be able to remove that from the list of things to do before I can walk out of the door.  So after some consideration I figured I would give myself an hour and half.  It turned out to be plenty of time.  We got to the airport, took the picture and headed to NYC.

I have a list of tests I have to do before I actually go for my appointment.  I have to have an x-ray, do PFT’s and have blood work.  My first stop was to go and get x-rays.  We went over to the desk and found Paris.  He directed us on how to get to the Herbert Irving Pavilion. The buildings are connected and we just had to take an elevator down.  The wait there wasn’t bad.  I had to register and then go to radiology for the x-ray.  I got my x-ray taken and then asked for two copies.  One copy was for me and the other one was to give to the doctor.

We then went back to Milstein to use the catwalk.  That took us over to Vanderbilt building where I had to go for my PFT’s.  Getting from building to building was a little work.  This hospital could use its own app just for getting around.  Between Paris’s help and some knowledge of the hospital layout from previous appointments we didn’t do too badly.  We had to wait a little while there.  While we were there I had to take my morning medications.  Shortly after that my stomach started hurting really bad.  I had to sit in the wheelchair a certain way just to keep it at bay.  It hurt so much and I was extremely uncomfortable.  Finally they called my name.  I tried my best to ignore the stomachache because
this was the test I was excited to take.  I haven’t done PFT’s since before my transplant and I was excited to see what they were at.  I was so excited to see that my FEV1 is up to 61!
The woman giving the test said it was great to see I have made that much progress already and that they would continue to go up as I heal.  She too gave me two copies of the results and then sent us on our way to the next place.

Our next stop was to Presbyterian building to go to the transplant center.  That is where I had to go for my blood work and appointment with my doctor.  On my way there my grandma was telling me about another transplant patient she was talking to in the waiting room while I was doing PFT’s.  She was three years post transplant and also has CF.  She was doing great and telling my grandma that PFT’s would continue to go up as I healed also.  A few minutes after we sat down in the waiting room my grandma pointed her out to me as she walked in.  I sat and talked to her for a little bit while we waited.  She told me that her stomach was a mess for about a year after the transplant.  Her biggest issue was after medications.  She suggested I try eating some yogurt before I do my pills.  I am definitely going to have to take her up on that advice.  This stomachache was bad and I was willing to try anything.  I had been getting upset stomach here and there, but this was by far the worst.  I was not too happy to hear that it took a year for things to settle down for her.  I know I can’t complain, but I hope I figure it out faster than that.

I got called for blood work and then shortly after we were called for the appointment.  When we went in I talked with the coordinator first.  I went over all my medications and vital signs with her.  She then took a copy of my PFT’s and x-ray and then asked some basic questions to see how I was doing.  She then left and my doctor came in.  She said the x-ray looked great and she was very happy to see my FEV1 numbers!  She also said the same thing that I had been hearing all day… they will keep increasing as I heal.  I then talked to her about my stomach issues.  She said that my second fecal fat collection showed that I was not absorbing all the fat I am eating so I do need enzymes.  She wants me to increase them and see what happens.  She took me off the Reglan too.  Hopefully those two changes with help some of my problems.  About my stomachache that morning, she said I should bring a lunch with me when I come for appointments.  It is a long time to go without food and not eating something with my medications could be the cause of the problem.  Gram and I thought about bringing lunch with us a little too late.  We only brought some snacks and that was not cutting it.  I won’t make that mistake again.

I asked her a question about pictures being taken during the surgery.  In the hospital she found out that some were taken and she was working on getting her hands on them.  She said she would send an email to the surgeons and find out where they might be.  She also mentioned that I had to wait one more week on the staples.  I was hoping to get them removed the following week, but I am going to have to deal with them for two more.  I did however ask her about removing the sutures. When I move I can feel them pull so Jason said that getting them out might make me more comfortable.  I suggested this to her and she said it would be fine.  Taking them out wasn’t bad at all.  I had four sutures total and it was only slightly painful while removing one of them.  The one suture was buried a little in the skin and she had to tug on it a little bit.  Once they were out I moved my arm around and the range of motion was greatly increased.  I felt a lot less restricted with my movement.  I still have to be cautious of the staples, but the removal of the sutures made a big difference.  The incision itself is healing beautifully.  Every night before I go to bed I use to q-tip to put Neosporin on it.  This is helping it heal quicker and preventing an infection.

We then left and Paris helped us find a taxi.  It was a nice quick ride back to the airport and then into the plane to go home. Getting in the plane was even easier than it was that morning since those sutures were out.  When I got home I was exhausted and ended up taking a nap.  I took it easy for the rest of night after that.
Today was my first appointment with PT for rehab.  It took me a while to find a place that would work for me.  Some places weren’t able to get me in right away and there were others that were physical therapy places but not for rehab.  I got lucky and found a place about ten minutes away.  I got to meet my new therapist and had an evaluation to see what they can do for me and how often I will be coming.  I am going to be going twice a week starting tomorrow.  I am really looking forward to getting back into exercising.