Port Flushin

I have had a port in my chest since I was 19 years old.  I have had 2 ports total.  My first one came out the day my new one went in.  I remember that I got my newest during the campaigns for the 2008 elections.  I remember very specifically cleaning my incision with the TV on and McCain announcing that Sarah Palin would be his running mate.  So I have had my current port for 8 years.

What is a port some of you may ask?  A port is short for a por-a-cath implant.  It is a small tunneled central venus access device.  This means it is "easy access" into my blood stream for any infusion I may need.  I have horribly small veins in my arms and early on I had to get a port to be able to administer the IV therapy I had to do frequently with my CF lungs.  Many transplant patients are not allowed to keep their ports anymore because of the potential risk of infection or blood clots.  I am not sure how I have gotten away with it but my docs have let me keep mine, which i am eternally grateful.  I need it every 3 months for an infusion I get for my bones.  I cannot tolerate the oral drugs they have now a days for osteoperosis so i must get this infusion which eases my suffering of flu like symptoms when i take the other medications, so I don't mind at all. Anyways, I have been a very compliant patient taking very good care of my port and (knock on wood) have had no problems so far.

For maitneance of the port you must flush it with saline and heparin to keep it from clotting.  I have done this at home for about 13 years. Early on Casey learned how to flush my port so I did not have to go in to the hospital every month to get my port flushed.  My first port was so deep in my chest there was no way I could have gotten the leverage to poke myself.  It took a 1 1/4inch needled to get in.  I was vain and wanted the port in my breast tissue.  It was great by vanity stand point, but difficult to maintain.  When I got my second port the doc suggested to have it further up my chest.  I obliged and now you can see my port a bit, especially since I have gotten much thinner in the past couple years. So now you can see it well and it is easy for me to try to access it myself. But until yesterday I had never tried before.

I have been thinking about doing this myself for a few months - before I even concieved the idea to travel to Australia by myself. But now, since I am going away for 3 months I need to be able to flush the port on my own.  It was a great push to do it myself.  So yesterday I stood up to the challenge and got it done!  I was so proud of myself that I finally did it.  I was worried i would sit there shaking for a couple minutes before attempting, but I was strong and solid - except for my normal shakes I have from the drugs I take. 

The one thing I did learn is i need to make sure I have sterile gloves that FIT me.  It would be much easier with those.... HA!  Here are some pics from the process -

 

Setting up the stage with a sterile field and everything laid out to stay clean

 

Cleaning the site- I clean first with alcohol then with chlorhexadine

The ultimate focus to get that needle in! 

 

 I did it!!! 

 

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. 💊💊💊

 

The Swimcation

     I have been receiving a lot of questions about the details of my Australia trip.  I figure I should explain them on here so everyone has the answers.  But first off, thank you to everyone who has provided such amazing support of my decision to go on this incredible adventure. Your love and support of me and this time in my life means the world to me.
    The plan is that I will be going to Australia Jan - March.  The first couple weeks I will be traveling Eastern Australia, then settling in to my apartment in Melbourne for 10 weeks to train. I will be staying as long as my visa allows, 89 days.  I will be swimming, weight lifting, continuing Pilates and also my favorite Gyrotonic work out.  I will miss U-jam and Orangetheory Fitness while I am away - but it will be a good time for me to focus on my swimming for a while.  I will be going with a training plan for the pool and have every intention to stick with it and work as hard as I can to gain as much strength and fitness in the pool as possible.
     I am also excited to have such great friends in the transplant community in Melbourne as well as spread out through Australia.  I will be visiting them all at some point or another and I am also being invited to participate in Organ Donation Awareness events.  It is going to be a great time to work on my fitness, my spirit, exploration of another country as well as deep within myself.  All while doing the stuff I love - promoting organ donation, working out, eating, and having fun!
     This idea of swimming in Australia actually came about quickly and came to fruition even quicker - call me impulsive but sometimes life places opportunities in front of you and it is your choice to choose to take advantage or look the other way. There are a million reasons why I should not go - but plenty of reasons why I should.  Instead of letting fear of the unknown and all the shoulda-coulda-wouldas I choose to jump in with both feet.
    There are a lot of magical moments in life but they don't just happen - you have to look for them, work for them and earn them. My goals of getting fitter, faster, and breaking records won't happen with me sitting on the couch.  I have to go out and work for it.  The final result may be magical but it is going to take a lot of blood, sweat and tears - but I am ready.  I am motivated and I can't wait to get to Australia for this amazing Swimcation adventure!

Big Things are Coming

I spoke of being almost 6 years post transplant and in those 6 years I have done a lot of traveling.  It could be debatable that I have done more traveling in the past 6 years than my entire life before my transplant.  Always having CF I never felt that good to travel.  I would do some trips, often close by and when I did travel internationally it was usually to club med or to a tropical island. I never could go and travel abroad and live in another country because my health was never stable enough.  Since my last post on this blog  before I started writing again it was my FIRST of THREE trips to South Africa.  I just got back from my 3rd trip at the end of September from visiting my friends Alice and Chris in South Africa.  I think it is safe to say I have caught the travel bug.  Well in my planning of training for the 2017 Games I came upon a very interesting idea.  I had planned a trip to Australia already - my first international trip all by myself.  And I thought of this crazy idea to stick around and stay for 3 months to train for the games. I will borrow their summer and their 50 meter pools.  I am taking a leave from work, and my life here in California.  I am renting an apartment and doing it up like an Aussie for the first part of 2017.  I realized I will be in another country for the inauguration of our next president.  How bizarre - after this heated election.  Depending on how that goes, maybe i won't come back home! HA!  But I am doing it - I have never left the bay area for more than 3.5 weeks - let alone live in another country for an extended period of time.  I am so excited at this opportunity.  I am re-starting this blog to chronicle my experiences.  What is it like to plan for a trip like with with CF, Diabetes, Double lung transplant?  I want to share my preparations, my thoughts, my training plans,  my fears, my excitement.  This is an amazing and new experience for me.  I hope you enjoy the ride as I share my perspective of being a short term Expat in Oz
    

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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