Hawaii

Well I survived the trip…hahaha.  I had a great time with my family and celebrating my great uncles 90th birthday.  We went to 7 or 8 beaches, I lost count.   Another one of my must haves when in Hawaii is shave ice, we got shaved ice 5 times, yummy!  No it is not a snow cone…it’s completely different.  It is shaved ice from an ice block, not ice pellets.  Anyway that is your Hawaiian lesson for the day…haha.

Things I learned or thought of on this trip:

  • Traveling alone with my medical equipment (oxygen WITH extra big battery and nebulizer) for me to carry is not the easiest thing to do when you have 37% lung function.
  • The salt air is great for my lungs but does nothing for lung pain (will explain more).
  • It never fails that my gate is at the end of the terminal that I have to go to
  • While walking to said far far away terminal with oxygen on people pass me by while I am having to stop and take breaks (if time permits).
  • Don’t take for granted, good lung people, that you can get where you need to go quickly if you need to.
  • My family was great about dropping me off at the beach or restaurants so that I didn’t have to walk as far.
  • Walking ON the beach is difficult with little lung function, I already knew this but it gets harder and harder the sicker I get.
  • I can only “fake it” for so long before I have to throw in the towel and call the doctor/nurse. (more on that later)
  • The is was the first time have done this trip by myself and it might be my last until I get new lungs because it was a lot of work for me. I usually have my husband there the do the heavy lifting and carrying of things.  He also pays attention better than I do and I just follow his lead…hahaha.  I don’t want to get into a situation where I end up really sick and not have my husband there.  I’m not ashamed to say that he is my security.
  • I feel guilty for having people to make adjustments for me like dropping me off then going to park or waiting for me while I catch my breath.
  • Basically I feel more guilty about those kind of things the sicker I get, I don’t want anyone to adjust their life for me.  I have to live this life of CF, everyone else doesn’t have to.
  • I’m thankful for those who choose to live this life with me…family and friends.  It takes some strong people to love and care for a person with an incurable progressive disease.  It’s hard on the sick person but sometimes it can be harder emotionally for the loved one at certain times.
  • There are a lot of hikes in Hawaii I want to do when I get new lungs!

Now, as you know I did 10 days of IVs before I left for Hawaii in hopes that it would get me by.  I guess you could say it got me by until I threw in the towel while on vacation asking to be seen the day I got back.  I have lung/rib pain which hurts pretty bad.  I have a high pain tolerance in general but when it comes to my lungs and fractured ribs or pulled muscles from coughing, I give in.  I can’t NOT cough or breathe so it hurts all the time but much worse with coughing, deep breaths and bending over.  I have been having this pain for about a week or so before I left but it has gotten worse.  On top of that pain I have been having pain in the area where my gallbladder is.  I know I have gallstones because they have been seen on scans before but they don’t do anything with it unless there is a problem.  Well, Houston we have a problem!  It has been hurting for probably a month.  I  thought it might be where my Nissen Fundoplication surgery was done.  I was nervous to say anything and hoped it would go away.  I have had a fear of the Nissen failing.  If you don’t remember I had a heck of a recovery with that surgery and I don’t want to do it again if at all possible.

With all that said, I have appointments tomorrow for a chest x-ray, ultrasound of my gallbladder and to see the nurse practitioner.  We shall see what the verdict is.  I honestly think it is just a matter of time before my gallbladder has to come out anyway, why not just do it for fun now.  hahaha.  I just want the pain to stop or be better managed until it stops.  I’m not asking for a unicorn people, just some “simple” pain to go away.  I shall update after I know what the plan is, if any tomorrow after I see the NP.

Until next time…

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