I had originally planned to jump in Midna and drive west until I hit the Pacific. I’ve seen the Gulf of Mexico and the Atlantic each several times, but this huge body of water has never had my toes dipped in it.
And no I am not a hipster. Don’t let the beard fool yuh. I don’t wear my jeans skin tight, I don’t do man buns, and my testosterone level is higher than my estrogen level.
But then my cousin Wendi contacted me about the Pulmonary Fibrosis Foundation’s summit.
And I thought, “Suuuuuuuuure! why not? I can leave a month early… take my time getting there. See a few things…”
Around noon I remember stating that, “I don’t care if I only make it to Terra Haute… I’m leaving today!” And just so you know. That’s like… a preeeeeety short drive from Indy.
But I obviously made it onto the road… then a few miles into Illinois… and eventually on down to Texas land.Lets just say the J.W Marriott in San Antonio is veeeeery nice. I think I threw the poor employees at the door for a loop when I drove up.
I mean… I highly doubt they see to many school buses at the top of that hill.
I remember swinging open the doors and asking the valet, “Wheres you RV parking at?”
Dumbfounded? Yeah lets go with dumbfounded… Dumbfounded was the wide eyed look on his face as he stumbled over his words.
He got on his radio asking for directions as to what in the world he should do with a bus.
I jokingly say that whoever was on the other end of that conversation told him to hide it where ever he could. Because they parked me all the way back down at the bottom of the hill.Let me tell you how much I got tired of walking up and down that hill…
Pre-transplant… had there been a million bucks waiting for me at the top. I couldnuh made it up. It was high, steep, and long.
Thankfully…. oh so thankfully. I eventually discovered the entrance over by the convention halls.
Escalators for the win!“But Nick?” you might ask, “Why were you constantly going up and down that steep Hill? Why didn’t you just chill up there at the Summit or in the nice room you had with your cousin?”
Well that is a good question, one my calves where asking also that first few days.
The reason was a fuzzy four legged creature that responds to the name Marin.
The J.W Marriott apparently doesn’t allow pets. Not that I guess it really matters. I wouldn’t have left her home regardless. Even if I had know before jumping onto the interstate.But I’m babbling about a bunch of nothing so…
Onto babbling about the summit!
I really enjoyed the summit and I’m glad I attended. My favorite aspect was getting to meet new people and share my story with them.
I love telling folks what I’ve been through and where I am now as far as my health goes. I’m not to crazy about the attention, but I really like feeling that I helped someone and/or gave them a bit of hope for their journey.
The venue was really really nice. It was clean and spacious.
It did get a little crowded at times… so bringing your hand sanitizer and a mask would not be amiss.
There seemed to be plenty of room to move around with a wheelchair/rollator and/or oxygen. The elevator in the lobby were easy enough to find, but those around the convention halls seemed kinda tucked out of the way.
Not a problem if you are not on O2 or just on low O2… or if you are okay taking the escalators. But lets be honest. Elevators are your friend when you have I.P.F.I do think a few things could have been changed just to better accommodate folks with IPFs/ILDs and those pumping themselves full of anti rejection meds.
Though trust me… this is just me nitpicking and throwing out ideas. The Pulmonary Fibrosis Foundation did a great job.
They had quite a bit going on and I saw lots of smiling faces.
I’d would like there to be more going in regard to transplant. Both pre and post. Though maybe its just something I’m focused on, because Ive been through it.
I want a cure for this disease… I want it super duper incredibly badly… I don’t want anyone to ever have to be laying in that hospitable bed like I was.
I hope one day folks can pop a pill and IPF will be like catching a cold.
“Hey Paul why’d you miss work yesterday?”
“Oh you know, just a touch of the IPF.”
But the thing is transplant is still a reality… and it seems like there are so many ILD/IPF sufferers out there desperately looking for information they can understand on the topic.The second nitpick is no buffets please… or at least an alternative option to them if meals are being provided.
Breakfast had sealed packs of cereal that one could grab. Lunch was individual sack lunches. There was plenty of bottled water, canned drinks, and coffee.
Buuuuuttt… the dinners and most of the breakfast food provided was all laid out buffet style.Now, if you’ve got a nice shiny healthy immune system… you might be thinking, “Whats the matter with buffets? All you can eat salad for the win!”
But you see those of use with a borrowed organ keeping us running are taking fistfuls of pills each day to tamper down our immune systems. Several pre-transplant I.P.F sufferers too.
So eating communal food that might have already been handled or sneezed on or heck… just breathed on. Is risky for use.Okay… nitpicking done. That wasn’t so bad was it? I didn’t think so. Pulling a bandaid off is more painful.
Their were several booths to peruse all related to I.P.F meds, care, treatment and support groups.
As well as rows of posters covered in informative graphs and data… Funny story my cousin Wendi was supposed to have a poster hanging there with the rest of ’em.
But apparently FedEx didn’t get it there in time. I say 50/50 chance she actually shipped it or not before she left home… Just kidding cuz!
(50/50 chance I’m just kidding)The rooms at the J.W Marriott were very nice… Big beds, huge TV, writing desk, desperate shower and bath.
The beds seemed comfy… though I guess I should have asked my cousin for sure if they were or not.
My tuches slept on the bus. (grumble grumble something needy dog…)
Shes lucky shes so sweet and lovable.
If you’ve not been to a past P.F.F summit or couldn’t make it to this one; I would recommend gong to one.
It seems geared a little more towards those within the medical field, but I mean… that’s not a bad thing. A meeting of the folks trying to keep us alive? Cant be grumpy about that.
There was things for patients to do also, and I honestly think from those I spoke to; they want to do as much as they can to expand what they offer.
If I’ve borrowed enough breath to last me til then, I plan to be at the next one in Chicago. (It’ll be a lot shorter drive for me!) Hope to see you there.