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…