Braid My Hair

We finally did it!  Erika and I both got our hair cut and we donated it to Locks of Love.  I have wanted to do this for years and I finally had the length to do it.  I was never able to make the length before because my hair would get too scraggly and I would have to cut it.  I was so mad that my hair starting falling out like it did.  Had that not happened my hair would have been thicker and there would have been more to donate.  Hopefully they can use what I was able to give.  Erika was able to donate a lot.  And she was the one nervous that she wouldn’t have enough!

Doctor! Doctor!

The last couple weeks have been nuts.  Not a day goes by that I am not making at least one phone call that has to do with something medical.  It is either speaking with a pharmacy, health agency or a doctor.  Now that I am feeling well enough I am trying to schedule a whole bunch of doctors’ appointments.  I am playing catch up on a few of them, keeping up with others and obviously going to see my transplant doctors.  Plus I am going to PT, I am not happy with my pharmacy, I am sick, and I am having issues with my hair.  Once I catch up and this Pseudomonas goes away things won’t seem so overwhelming.  Feeling sick like this has got me down a little.  I am not writing about this to complain.  As crazy as things seems to be now, I am OK with crazy.  I am able to keep up with everything that is going on.  I would rather be too busy than too sick to do anything.  This side of transplant is much better than the previous.  I just want everyone to understand that a transplant does not alleviate all medical issues. 

Walking On Sunshine

Quite a bit has happened this last week.  In my last post I told you all that I wasn’t rejecting and my cultures were clean.  Well Monday I got a call from the transplant center.  My cultures came back positive for Pseudomonas.  That nasty bug has reared its ugly head again.  I don’t like Pseudomonas.  Why won’t it just leave me alone!  Anyway not only was that bad news it was horrible timing.  I had plans to leave on a plane at 7:00 am the next morning to go to Naples, Florida.  I was going with my grandma to visit her brother Jim.  I could do the IV meds in Naples, but I didn’t have anything set up in order to do so.  I was determined to still be able to go.  This is when I picked up the phone and started the process.

Can't Fight This Feeling Cont...

Tuesday Jay and I drove to NY.  Before we left I had a nurse come over and access my port. I figured this would be easier than having them put an IV in.  I might as well save my veins while I have this port.  Although we weren’t heading to the city on a good note I was still excited to go.  I was excited that I would be able to see Erika!  I hadn’t seen her since I had left the hospital in August.  I hadn’t had time to meet up with her during any of my other appointments.

Can't Fight This Feeling

The last few days I have been coughing.  I had a few coughs in the morning on Tuesday, but I started noticing it more on Wednesday.  I didn’t think too much of it right away because last Saturday I had a stuffy nose, my ears felt plugged and my whole head just had that congested feeling.  So when I had a couple coughs I assumed it was from all of that. When it didn’t go away by Wednesday I was getting a little worried.  Jason was even more worried.  He immediately said to me, “I think you are rejecting.”  I told him it is probably just a cold or something, but to err on the side of caution I called my doctor.  I talked to the coordinator and we came up with a plan to go to my local CF lung center to get a viral swab.  I immediately called them up and made an appointment for Friday.  It was a good idea I did too because on Thursday it seemed worse.  I was coughing throughout PT and my physical therapist was asking me about it.  On a good note, I am still improving there.  After PT I went for massage and I was able to use my walker and walk in.  The receptionists and my massage therapist were all so excited to see me walking!