Living with Gastroparesis

After I returned home, as I predicted, I got a little sick, dehydrated and had a few ER trips. But, I’m feeling much better now and am ready to unveil my ultimate TSA and traveling wisdom! I want to thank Sea-tac mostly for being very understanding and seemingly educated on all my equipment and medical needs. Perhaps it is due to the GP awareness that stands out here in Washington, and the amount of them just going through the airports, or maybe it is because of the amazing people at G-Pact making their rounds with TSA and other government run agencies that will ultimately need to deal with medical equipment and the people that use them. I don’t know, but I had a very easy and enjoyable time getting through the checkpoints at Sea-tac even with my service dog, Ellie. Regardless, here is a list of things I recommend when travelling with any sort of feeding set up or require special attention at checkpoints or at the gate.

• Make sure to visit each of your doctors within two weeks before your flight to make sure you are healthy enough for the trip and to have all your medications filled so you don’t run out while you are away
• Print out and complete the Travel packets found on the Oley site (download the whole packet so you can fill it in on your computer if you want and discard the info that isn’t important for you)
• Have your doctor sign the documents you printed out (I printed out 4 copies – 1 for me, 1 for each airport, and 1 for the hospital should I need to be seen while away)
• Call ahead and have your TPN or Formula and all your supplies for the time you’ll be away, shipped to your destination. It eliminates the fear of forgetting something important. Most companies have offices around the country and can easily ship to anywhere you go, even out of the country. Make sure you know the exact date your shipment of supplies will arrive at your destination and that there will be someone there to take care of it. I know my TPN had to be taken immediately to the fridge as Arizona is HOT outside and will kill my TPN if not taken care of properly.
• Check-in online 24 hours before your flight so you can change seats, trying to get one with more leg room
• At check-in (checking baggage or not, I did) ask for an escort pass – I had my husband, and my parents on the way back, escort me through the checkpoints as it made it easier for them to keep an eye on my things (and my dog) as I was taken aside and patted down
• Tell TSA everything you have before even starting the pat down. Some, it will be their first encounter with your setup.
• GO THROUGH THE CHECK POINTS HOOKED UP TO YOUR FEEDS, it just makes it easier for them to believe you and be comfortable with everything
• They will swipe down all of your things that cannot go through the scanner (pump, backpack, medical supplies, formula) and make sure there is no bomb residue on it
• Your escorts can go straight through to the gate if you want. I find having people there helps with the anxiety. It was my first attempt to fly since the rules were changed last December.
• If travelling with a service dog, like I did, tell the flight attendants before you board to make sure your seat will be good enough for a service dog (Sea-tac kept the seat next to me open – I opted for the isle seat – so that my dog would have more room when they learned of my service dog…again, Sea-tac is amazing)

I think that is all. If I remember anything else, I’ll be sure to update the list. But this is what I did to prepare for my short little 3 day weekend trip. I was also travelling with my service dog, so I had to make sure she was up-to-date with all her shots and had enough food, treats and whatnot. It was all a huge learning experience. Here are a few pictures from the trip =) Our next big trip will be for my sister’s wedding in December. That trip will be much longer (2 weeks) since it will also include Christmas! Yikes! I’m still debating on whether or not my Ellie will come or not =)

Ellie at my feet on her first airplane ride; she did amazing!

She was super shy at first; we weren’t there long enough for her to get used to all the other dogs

Always good to meet up with family; I miss them so much!

Catching up with my first dog Riley who I got when I was 16. Ellie I got when I was 26. Amazing creatures and best friends =)

Share via email

Well, getting myself to AZ even for the weekend has proven to be quite the adventure. I don’t leave until the 30th but I’m already feeling as if I don’t have enough time to get everything ready. People comment, “oh you have plenty of time.” Obviously, they do not know all that is involved. I like to compare it to having kids…um, a LOT of kids. That only covers the stress level though. I feel bad for my homecare in charge of my TPN and such. They have just as much to do when I go out of town. They are in charge of contacting Phoenix (another branch of my homecare – thankfully they have one located so close to my parent’s house!) and organizing my TPN and supplies to be delivered to my parent’s house for the three days I’ll be there. Unfortunately, I am going to be there in the middle of a delivery so they have to split my order, half to Kirkland and half to Arizona. They ended up sending me two orders of TPN to last me through until the 5th, minus the time I’ll be in Arizona, so I don’t have to worry about getting that when I get home. If any of that made sense to you, I applaud you, because I don’t even know if it made sense to me! But that’s how it is.

All my appointments are scheduled so I see my doctors before I leave for any prescriptions I’ll need refilled while I’m gone or signatures for papers hospitals or stingy TSA jerks might want. I found my gastric neurostimulator card as well as my port-a-cath card so that’s also a plus. I determined that I’ll be flying while hooked up to TPN because I found that in the past with tube feeding, it was easier to get through security if they see how everything works, while it is working. Even though it will be way early and totally throw off my schedule, it should be worth it. I’ll figure out a way to get back on schedule somehow.

In other news, my amazing Facebook groups are making awesome GP/CIP, or what is commonly now referred to as DTP (Digestive Tract Paralysis – a combination of all digestive diseases that slow down motility), awareness videos! I have made one too. Here are the ones so far. Enjoy!

Share via email

It has been a long time since I have had the energy to stay at my computer long enough to write anything of worth on my blog. I trust those who suffer from any sort of chronic illness understand. I have been in the longest flare-up of my life. It has been complicated by week-long migraines that completely paralyze me in pain; pain that makes my ever so constant nausea progress to vomiting. The only thing I could do to make it bearable was to head to the ER for IV pain medication, fluids, anti-nausea medication and at times, oxygen. Four hours later, I would be sent home, only to return the next night, requiring the same treatment.

They’d preform more tests, only to come up empty handed. I had CT scans, X-rays, lumbar punctures, and blood tests. I would continually ask what to do when another attack came, looking for confirmation and assurance that what I was doing was right, and they would say just to come back. So that is what I did, many, many times; thanks to my husband who drove me to and from the hospital day after day.

Along with the migraines I was fighting, I had GP flare-ups. I am not eating anything, save for sherbet ice cream at night. TPN is pretty much my sole source of nutrition. I run 2000ml over 20 hours. I find that being on more of a continuous cycle helps a bit with the migraines. Not a whole lot, but some. It does not, however, help with flare-ups. On the scale of uselessness, I live in a continual state of 8. I manage that fairly well. When it bumps up into 9, that is when I have problems and start breaking out medicine and patches to try to control it in order to avoid a trip to the ER. I have lidocaine patches and oxycodone for such cases. I’m also taking ultram 3x daily and use fentenyl patches for pain. I have liquid phenergan and IV zofran. IV zofran is daily and the liquid phenergan is when the IV stuff isn’t working. That is sort of how I play things, always having a back up. I want to know I did all I could at home before I rush myself to the ER.

Anyway, that is, in a nutshell, why I haven’t been updating my blog. I feel I have things more under control for now, and will be on more often to write more about my battles with GP and overall life. I will be making my first trip outside the state on TPN next week, so that will be quite the adventure. I’ll be sure to write about it, in case others are planning something similar and are curious as to the process. I’m nervous about making it through security at the airport. I haven’t traveled since the new rules went into place. I have a gastric neurostimulator on top of a port, so I imagine, getting through security won’t be much fun (on top of the syringes and other TPN materials I need to bring with me for the day). That’s for another entry. Hope you all are having a great Father’s Day and a good tummy day as well! Take it easy!

Share via email

We are chameleons, and our partialities and prejudices change place with an easy and blessed facility, and we are soon wonted to the change and happy in it. ~ Mark Twain: Mark Twain at Your Fingertips

My first experience with the Evergreen ER followed by the Hospital was not a good one. I wrote of this experience as a chunk of hospital experiences as I went from one hospital to the next in the course of a month or two. My review of this hospital was not a favorable one. I wanted to take the time to change that review to one of praises. I often look back and wonder why my experiences before were so horrible. I can only blame the time in which I entered the hospital, Christmas Day. The holidays, I guess, is a bad time to be anywhere but home – a place I couldn’t get to this year.

I spent a little over a week in the Blue cardiac ward of Evergreen Hospital. I have nothing but good things to say of my stay there, from janitors, to nurses, to doctors and to administration. They all went above and beyond anything I could have asked for to make me comfortable. I was admitted on the 15th of March due to horribly low potassium levels, scary abnormal EKGs, excruciating abdominal pain and migraines. My resting heart rate at admission was 130. I was released on the 21st with a resting rate of 100 with the hope that it would continue to stabilize with now normal potassium levels and controlled pain levels. I am still working on the pain thing as usual but again, everyone there was amazing and I recommend this hospital just as I would any other hospital I have been to. I feel lucky to live 5 minutes away to such an awesome healthcare network.

A special thanks to Nurse Habiba and Dr. Kubesh. You both were wonderful! Words cannot fully express my gratitude.

Thanks again Evergreen. If I find myself needing emergency care – you’ll see me again. With GP…it is something that will happen more likely than not. Sad but true fact. At least I know there will be wonderfully awesome people waiting to care for me!

Share via email

It has been a difficult past few weeks and I am trying hard not to “leave the stage in the middle of a song.”

Share via email