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.It started with a phone call at 10:30 Monday morning. I was in the shower and missed it. It was my coordinator telling me about the cultures and how they wanted me on IV Ceftazidime and inhaled Tobi for twenty-ones days. I heard it and called her back immediately. She didn’t answer so I left a message. In the meantime I called the Visiting Nursing Association (VNA). This is my home nursing that takes care of my port. I asked if they could come and put a port in. They said they didn’t have an order written for one at the time, but they would work on getting one and send someone over. Next was setting up the medications. I called Walgreens to see if they carried Tobi. I was told they did not and to try Option Care. That is where I was going to get my Ceftazidime from so that would be perfect. I called them, but they did not carry it either. So I called CF Services Pharmacy. I knew they carried it because this is where I use to get it. I was hoping Walgreen’s carried it though because this place is a mail order and I obviously would not be home to receive it. I was going to be gone until Saturday and I did not want to wait that long to start it. I asked them if they could send it to me in Florida. They said that was fine except they told me that I needed to get a new script because the old one was expired. I then called the transplant center back to try and get a hold of someone. I didn’t want to wait for them to get back to me because I needed to set up the medication for both places and I needed a letter to carry all these liquids online. She said she would get everything together for me and get back to me. I was a little nervous about time so I called Option Care to see when the cut off for same day delivery was. I asked when they needed the order and said they needed it by 3:00. Well it was 2:30. I immediately called my coordinator and told her this. She got right on it and sent the order over to Option Care. She then took care of the order for my port access and sent a script for Tobi. A little while later she emailed me a letter to take my meds on the plane. I called CF services and Tobi was ordered and going to be delivered to my Uncle’s house. Around 6:00 the medicines were delivered and by 7:00 the nurse was here to access me. I was all set to go to Florida the next morning.
It took a lot of calling, organization and cooperation from
these health care facilities, but it was done.
I have a lot of experience with all of this so I knew who to call and
how to get the ball rolling. I still
have to give credit to these places though, because I could not have done it
without their assistance. I gave all of
them hours notice and they all helped me out to make it possible. I was able to go with my grandma and surprise
Uncle Jim.
Boarding the plane was easy. I told the TSA agent about the liquid medications and showed
him the note from my doctor. There was
no problem. I just had to take
everything out of the suitcase and lay it out.
This included the IV Ceftazidime, inhaled Tobi, saline flushes and
Heparin flushes. All of this plus my
daily medications had to be carried onto the plane with me. I can’t take any risk of checking it and it
becoming lost. We were flying direct to
Florida so the chances of that happening are slim. Still, with medications like these I can't afford to go without them so it is
better to be safe.
When we got to
Florida one of the baggage handlers helped push me while Grandma took some of the
luggage. I could have taken all of the
luggage bags while she pushed me, but she wasn’t having that. She doesn’t realize how good I am at that
stuff. It worked out good though because
Grandma went out the door with the luggage while we came up behind Uncle Jim. She hugged him hello and then told him to
turn around. He had no idea I was coming
and was completely surprised. I was a
little nervous he might figure it out because when she called him she said, “We
are here.” He said he caught that, but
just figured she was losing her mind from old age. The brotherly love begins. LOL
Doing the medications in Florida worked out fine. The IV’s were obviously easy enough and the Tobi
showed up two days later. Having to do all the meds really didn’t interfere
much with our trip. It was annoying
though. I have been spoiled with not
having to do a bunch of treatments and I did not miss that noisy nebulizer. I had to do my IV’s and Tobi twice a day. I did it in the morning when I took my pills
and again at night when I took my pills.
The one thing that the IV meds stopped me from being able to do was use
his pool. My port was accessed and I
obviously couldn’t get it wet. I was
bummed by this because it has been so long since I have been able to go
swimming. I had been looking forward to
being able to do that. I guess this just
gives me something else to look forward to at a future date.
The first couple days there I was coughing really hard. The morning was worse as things were breaking
up from sleeping all night. I did not
miss this at all. I really have been
spoiled because I don’t know how I dealt with this all the time. This is driving me nuts and I want it to
stop. It started getting better by the
end of the week so the antibiotics are starting to do its job. Also I was using my walker a lot. I brought the wheelchair for the airport and
for when we go places that include a lot of walking. For around the house though I wasn’t using
the chair at all. At the beginning of
the week I was walking around slow.
Uncle Jim kept teasing me and telling me to walk faster. Well by the end of the week I really
was. I was still getting around slow,
but there was definitely an improvement.
 |
| Honey Badger eating a sweet potato |
Uncle Jim was doing stuff like that at the grocery store a few nights before this. He was running up and down the aisles with me, popping wheelies, and acting as if he was going to run people over or crash me into things. Sometimes while he was running with me, he would give me a push and let me go. Lucky for the both of us I am experienced with the wheelchair. I can tell when I am free flying and I know how to control it. haha He was having too much fun and you should have seen Grandma shaking her head and saying, "I don't know him". It is hard to tell what his favorite part of us being there was. It was either pushing and throwing me around in my chair or Grandma’s cooking. Hard to tell. Haha
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