My First Flight With LVAD

This will be a toughie. It does involve going to see my spouse’s (domestic partner’s) family and all families do have their challenges. Tensions are high on my part as the outsider. I have known some for pretty much the entire time of our relationship (17 years this coming August 31), but at times I still feel like the 5th wheel.

Well back to the flying part, it will be interesting. I have flown many times over the years, many years I enjoyed have gold level membership with the (then)easy perks of a frequent flyer. I remember my first flight out of Shreveport, LA to Baton Rouge. It was a DC-7 or 8 then, early morning flight around 6:00 a.m. It was pouring down rain when we ran out on the tarmac to board the play (sorry no jet ways then), and it took off in the middle of thunderstorm. Nothing like today when a drop of rain will frequently bring operations to a screeching halt. But very little is ever as easy as it used to be. Now, for the flying itself, it is the easy part. I don’t anticipate any problems with my device (LVAD) during flight. Just keep a couple fresh sets of batteries around and I will be OK.

Fortunately airlines do not have a carry on limit for persons handicapped and/or with medical conditions as long as their Dr. deems the patient/passenger of sufficient health to make the trip and verifies attended equipment as required. I have quite a boat load of gear to take along on board as I can’t check it assuming worst case scenarios. If a flight was to be canceled, or cut short and has to land short of the destination, this gear needs to be with me in case there is an unexpected night spent in the airport or a hotel. The list includes:

Physically Attached: I have a tube which protrudes from my belly connected to a filter for pump exhaust or air exchange); this is in turn connect to a controller which is like a small computer attached to my belt, The controller connects to a pair of batteries, each the size of a large laptop battery weighing several pounds a piece. A pair of batteries usually lasts 4 – 6 hours depending on the level of physical activity.
Close at hand: I also must carry at my immediate disposal (like in a fanny pack”); 2 to 4 batteries as replacements when needed, a spare controller and filters, emergency instruction cards, emergency manual pump which I can do or as I instruct someone else could do, emergency contact information.

Balance of gear to board: My prescriptions- about 26 in all (does include a couple of supplements), the remaining spare batteries (they total 12 between the pair on me, the two spare pairs in my fanny pack leaving 6 with the charger), a 24 hour emergency battery (sealed cell), 6 Battery charger/PBU (portable battery charging unit) which also includes an external display unit (LCD device), power cable, 18 ‘ power tether used for when I am sleeping, blood pressure cuff, pulse oxymeter and other misc. cables.

I have spoke with an airline reservation agent and manager and have been assured there would be no problem as long as it can be stowed overhead or under a seat. They referred me to TSA for further “assistance”. I contacted TSA’s 800 number and received a standardized message that required medical equipment that upon inspection at the airport security will be no problem as they have dealt with electric wheelchairs, breathing assist devices, oxygen tanks, etc. with no problem. Even insisting that I will have equipment totally foreign from what they have seen before (there are not that many of us with LVAD’s who have flown in order for them to have been exposed to what equipment I must carry with me when I fly or travel long distance). TSA has only provided the web site information and contact #’s where I could leave a message, none have been returned. I have even turned to the Travelers Aid staff at LAX, although very supportive; they were at a loss as what I should do. They did provide a local TSA number where I again had to leave a message, but I actual received a callback the next day. Person calling could not help directly, but did assist in me leaving a message for their manager or director at LAX. The next day the director herself called me back directly, reviewed my situation, google’ed my device while I was on the phone and understood exactly what I was referring to as required equipment. I gave her my flight schedule and she assured me they would be alerted of my requirements. She even provided me with the contact information for me to do the same in Columbus. It took a little persistence, but overall, I feel a little better that things might go reasonably well. I will keep you posted.

In preparation I will have a letter from my cardiothoracic surgeon and my general physician releasing me for air travel and verifying my required equipment. I have put together a cover letter summarizing all the components of the gear I will have with me and with references to the patient handbook (which also happens to be directly available from Thoratec’s website). I will all this and a copy of the patient handbook and a listing of my medications available for security. Hopefully I am as prepared as I can be.

If anybody out there who has had experience for this type of situation, I would love to hear from you……

ljbristow@gmail.com

I sure am glad I don’t have to do this every time I leave the house! J
I will keep you all posted as my travel preparations continue.

Have a great day!