Organizing Your Health Care

It is very important to be able to organize your health care so that you are always prepared going to all the different doctors and hospitals that become a part of our daily life with Cystic Fibrosis.

First and foremost, I can speak from personal experience that having a great CF team can mean the difference between struggling and thriving.  My pediatric care was exceptional and since my original pulmonologist passed away I haven’t found another center that was as understanding or as caring, especially since I have a-typical CF (a very rare gene mutation R177H).  Since moving to Long Island, I can say that not many pulmonologists will take patients with CF; I have been turned down by so many. So you have to seek out the team that will work with you as an adult as not all pediatric centers will take adults. The Cystic Fibrosis Foundation will surely have a list of doctors that can work with you.

Second you have to be meticulous about keeping good records.  So I was born in a whole other country and I can tell you that this has been a serious issue. Especially because my brother had CF and I have no records at all of all the initial medical treatments that I was put on in Venezuela or how I was diagnosed, which was through a sweat test.  When we moved to Florida, I did not have a whole lot of symptoms because as I mentioned I have a-typical CF.  It mostly manifested as strong asthma and shortness of breath.  I was a professional ice skater for many year so that really helped to keep my health at a really good baseline. And my parents just made sure to keep really good records.  Unfortunately they both passed away early in my life and I lost a lot of my records with them. So I use an Excel sheet and keep track of my own records.  I’ll leave you guys a blank template here:

Print that out every time you go into the hospital or visit a new doctor.

You also have to make sure you have your doctors prescribe 90-day supplies of all your medications and when you get down to the last week, start the process (given any health insurance limits) of renewing them.  Having access to mobile apps really helps.  My favorite pharmacy is CVS because of their app and I can easily keep track of all my medications through the app and then update my Excel sheet.

Another tip is opening a Health Savings Account (HSA) that you can set aside money for paying the co-payments on health equipment such as the Oscillating Vest machines, Oxygen Concentration machines, and respirator nebulizer machines. All the things!  You can open one of those accounts usually through your employer or through investment banks such as Fidelity or Vanguard.

And lastly, insurance.  Oh boy!  Well I can say that I now have a really good job and that it provides me with a really good health insurance plan but that wasn’t always the case.  When my father died, my insurance ended up being cancelled and I had to go without insurance for a really really long time.  That was TERRIBLE.  Especially because prior to Obamacare making special provisions for people with pre-existing conditions, I would be almost always instantly denied or be approved at an astronomical monthly rate. But if you fall into a slump and you need to get on assistance, do not be ashamed to do so.  Medicaid is there for that very reason. There is no shame in wanting to live!

And finally,  some items you just cannot be without at home.  First and foremost, anti-viral masks.  These are non-negotiable for any CF’er.  I use the Curad Individual Wrapped Anti-Viral Surgical Masks because they do come individually wrapped.  They are a bit more pricey and surely any mask is better than none, so by all means get ANY mask you can afford.  I keep these masks in the car, in my backpack, or my purse because you never know when you’ll need some extra protection.  I also carry Vogmasks in my purse as well. These are re-usable and washable and are NIOSH N99 filter efficiency certified.

The other thing I like to keep in my arsenal of things around the house are surgical non-latex gloves. I also love the Curad line of gloves and there are several different types available. Again measure your budget and if you need to use the CVS or Walgreens brand, do that.  Keep them in the house because a) you should never CLEAN anything without using gloves, and b) when I sterilize my nebulizer equipment I wear them to put them away. If you have a port of course its necessary to have them around but more dressing kits do come with sterile gloves.

The other item that I like to keep around my house is a baby bottle sterilizer, I use the one by Philips AVENT 3-in-1 for all my nebulizer parts. I would wash them in a metal strainer with hot water and anti-bacterial soap and then drop them into my sterilizer.  After they are cleaned, I put on some surgical gloves and put them away into mDesign clear lid-based plastic boxes.  I clean those boxes out every couple of months too.

I also have a wheeled metal cart that I bought that holds my vest and nebulizer, I will insert the picture below. I bought it on Amazon (I love Amazon!) and my husband put it together for me.  I also bought a few shelves (3) and installed them above my cart where I keep my stuff. It helps me organize the GAZILLION medications/supplements we have to take. I’ll link those shelves for you, also got them on Amazon.

If you have any questions, let me know by replying below or you can email me at maria@mariaespino.com.

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