92 days of planning ahead!

I wanted to use this blog to share some of what goes into getting ready for a trip of this magnitude with having CF, transplant, diabetes, and sleep apnea. For starters I took inventory of all the pills I have back piled in my house.  

This is no small task! I get a 3 month supply of drugs every month so I do have a good supply of meds. However I literally had to count every pill I have to start planning when I would re-order my prescriptions and what new RX scripts I need to get me covered for the time I am away. For the most part I should be good with drugs but there are a couple that I take that will have to be strategically ordered to make sure I have enough for the 92 days I am away from home. 

The other things I must consider to bring are supplies for my bipap machine - which I am getting a new model before I leave - yay! So I will need a supply of filters, tubing, mask replacement. 

I also have to remember my sinus flushes - bringing salt packets for flushes. 

My port must be flushed every month - I will bring a supply of needles,saline, heparin, and sterile supplies for monthly flushing - not to mention I am gonna teach myself to put a needle in my chest! Wish me luck with this because I am gonna try for the first time today! (I'll do a follow up post on this adventure).!

I also have to bring enough strips and testing supplies for my blood glucose meter, extra needles extra insulin. 

I have Gastrointestinal involvement with my CF so I must also bring some of my emergency supplies for my gut. The good thing is I can purchase my miralax (known in Australia and South Africa as Movicol) in the country so I only need to bring a small supply. 

There is barely any room for my clothes and gifts for people! I will put drugs in my shoes if I need to! 

I am also working on getting my medical records put together for if/when I will be seen in clinic at The Alfred in Melbourne: I have already been in touch with them and they are happy to invite me into their clinic. 

I have also begun the parade of doctors visits. I had to scramble to move around all my appointments so I can see everyone before I leave. I started with a Sleep clinic appointment on Friday and have a ENT (sinus doc) appointment on Wednesday this week. I basically have a doctor appointment every week between now and Christmas!

The other big thing to consider when planning a trip like this is trip insurance and trip medical insurance. I will post about these in a new post to dedicate the time they need. 

All these things to think about and plan in addition to the "normal" stuff of making sure things are taken care of at home. My car is in the shop as we speak getting its maintence as well. 

The good thing is that I am good at organizing and planning - so I am on top of it. I just hope every piece comes together in due time and we have any freak outs before I leave. Staying on top of these things always allows for the mishaps that come with everything especially dealing with the medical system. 

If you ask me what I am up to - this kind of planning is what is up currently! Along with the regular day to day! 

Here is also my first collection of drugs that will be making it across the the ocean with me. This is probably half of the meds I need to bring with. Fun ya!? I am just so grateful my insurance covers a 3 month supply and I am able to make this trip work. I am also thankful I have these drugs to begin with to keep me alive. It is a small price to pay actually for the amazing gifts I have been given in my life. 💊💊💊

 

Almost 6 years Post Double Lung Transplant Update

Wow.  I am 5 years and 11 months post transplant. This is incredible.  The statistic says that only 50% live to 5 years.  I am going strong and just about to hit 6. I have had many ups and downs in this journey.  Most recently I attended the Transplant Games of America in Cleveland where I was not only the co-manager for Team Norcal, but also worked really hard and pushed myself to enter new sports and I even took up GOLF for the games.  I entered into Swimming (7 events), Golf, Bocce ball, and Volleyball.  I did really well in my swimming events, taking home 7 gold medals, and also gold in Golf for a total of 8 gold medals.  I was also very honored to accept the award of Female Athlete of the Year.  It was a tremendous honor to be recognized for my efforts, performance, and sportsmanship.  I have made an effort to push myself every year in my swimming.  I was not able to attend the most recent world transplant games in Argentina due to the fact I had to have a bariatric surgery.  But this year I am all healed, healthy and ready to train to compete!  The next World Transplant Games are going to be held in Malaga, Spain, 2017.  To start off my training season, I am working with a trainer, have been continuing my Pilates class,  going to Orange Theory Fitness, and still attend my U-Jam Fitness class.  I am also going to be starting up my Gyrotonic practice as well.  I am currently working out of water to get stronger and fitter before I get back in the pool.  I have goals this year to really work on my muscle strength to help take time off my swim races.  I don't want to cram all of the updated info into one blog post so please stay tuned as a big announcement is coming  soon...

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