Your will, your want, your way!

Hey PAH Warriors,

This blog is all about YOUR WILL, YOUR WANT, YOUR WAY!

If you are reading along it is likely that you have some sort of illness and you are looking for advice or facts that will make your life easier to manage. After 17 years of battling PAH I have learned a ton of interesting life lessons that I believe I would not have learned otherwise. If it’s ok with you I would like to share them.

Love Yourself First! For some people self-love is not an easy commitment. Maybe you're a parent, sibling, aunt or uncle, care provider etc. Maybe you have the intention to treat yourself but you forget? Whichever it is, making sure you come first everyday is a matter of life and death when you are facing a terminal illness. Consider completely changing your routine so that it allows time for nurturing yourself. Why? 

Without YOU there will not be shoes for you to fill. There will not be tasks that lie ahead. You can't go anywhere or do anything if you are no longer on this beautiful earth. This is the reality of people with terminal illnesses and it does not mean that you have to hide from the world or just give up. Welcome change!
What things can I do to put myself first so that I can be BETTER everyday:

Sit down and drink a cup of coffee.

Read a book every night before bed.

Practice some yoga moves.

Craft something special.

Paint on a canvas and see what comes out of you.

Make a gratitude journal.

Plan a trip!

Look in the mirror often.

Dress up and go ANYWHERE!

Smile at others and give compliments. It will make your heart beat w love.

Learn to say NO. Why is this such a hard thing to do? For some reason I do not like to say NO. Does it mean I was defeated? There will be so many times on this journey that you will not be able to do what you want when you want to and accepting that is part of the new you. Personally, I feel that the sooner you accept this, the happier you will be. More than likely you will have to say:"No" because you aren't physically able to do whatever it was that you had planned. People will understand and if they don't then reconsider who you have in your life. Do they support you and make you feel good about yourself? If they don't, let go! So now your at home and your upset that you can't make it out. Keep in mind that the only thing we can control is our attitude towards the things that are happening in our life. So will you get over it and start loving yourself or will you stay angry at an invisible illness and self-sabotage?

Have it your way! Do you ever fell guilty when you are being nice to yourself? Do you accept help and compliments? In the beginning and even now, sometimes, I forget that I am living my life to please myself. Why care so much what others think? This was no easy task but through the past decade I have evolved into a person that cares more about my personal opinion vs the opinion and thoughts of others. Social media can play a huge role in this process. We are constantly letting the internet dictate our thoughts and flood our minds with other peoples posts and comments, likes and thumbs up etc. Handle YOU the way that YOU want to. If you want ice cream and Netflix, then serve it up! You have one chance to make your life the best that it can be. Now, after trying to go back to a FT job and having to leave it because of my health I clearly see that putting my health first is a priority. If you are on disability do not feel ashamed. You have an illness that not everyone could handle and you're here handling it, so dammit have it your way!

In Colorado Springs 6,035 above Sea Level

Hey PAH Warriors,

Welcome back! It’s been a while since I have made it out into the world. I am now taking Orenitram (oral) and have since had my Hickmann removed. This next trip is one that I have made a habit of. I like to use reasons to go there such as: my bff, my workshops etc. Truth is that every time I find myself driving into the Springs something magical occurs. My mind is liberated of everyday stressors and I rise to mountain level literally and figuratively. If you have not yet visited Colorado please add it to your bucket list. You will not regret it. But wait, its over 6000 feet above sea level! How will I manage?

That is a very fair question and always one to consider when you have breathing issues. Some research has  suggested taking folic acid reduces breathlessness. It is also advised that you should heavily hydrate due to speedy dehydration in the higher altitudes because you are a mile closer to the sun. However, if you’re on a diuretic this will be a challenge. Prepare your body one week prior to your departure. I also take into consideration that altitude sickness can happen to ANYONE. Symptoms are: extreme headaches, fatigue, nausea and basically feeling like a piece of crap (stinky). In the image below you’ll see that I visited the Garden of the Gods for a level ground hike on the pavement. I make sure to wear tennis or hiking shoes that I am comfortable in. I also bring my medicine, inhaler and water in my backpack. When I have a travel buddy I ask them to carry my pack. But I also use a fanny pack around the waist, it is so much easier that way.

On top of Pikes Peak 14,111 above sea level.

Pikes Peak was unbelievable in so many ways. Did you know that people often hike this mountain in 24 to 48hours.  Wow, talk about fun facts! I personally would love the challenge but PH might slow me down a little, lol! Yes, that was a PH joke, please laugh! I’m pretty sure you can see from the image that my lips are blue. But it does not mean that I was feeling blue. Man, I was on top that day! The drive was scary as hell! Just corner after corner of narrow winding roads covered by an incoming storm. By the time we made it to the top it was sleeting and we were all forced to seek shelter in the gift shop. Hmmmmm? I was also forced to drink hot cocoa and eat mini doughnuts. It was pure torture! When we walked out to the summit my hair was standing straight up as if I had just been electrocuted. Why? Research shows that lightning may be lurking, so take it serious!

Tip:Yes, it was a lot harder to breathe and walk from my vehicle to the gift shop. The air was very thin and I did get a little light headed so please deny you’re sudden urges to sprint across the mountain top.

Alaskan Adventures Sept 2016

Hey PAH Warriors,

It took me long enough to tell you all about Alaska, so here we go! I flew out alone, just my pump and I not knowing what to expect when I arrived. My friend Antionette lives in Anchorage, AK., so I planned on spending a few nights at her place. Flying in was so beautiful I didn’t want to shut my window, but all the vampires on board were hissing so I had too. The entire world changed once we were in Alaska and you could see it all around you. It was enormous and breathtaking and I wasn’t even off of the plane.

Alaska from above     

I was supposed to meet my best friend Chris in Seattle (connecting), but he missed his flight. Unfortunately,  I had to go on without him and secure the rental car. The hardest part for me at the airport was pulling a suit case and carrying a bag over my tunneled Hickman line. I didn’t know that the airlines had offices by the luggage corrals and offered courtesy carts so that you don’t have to juggle your disability and your luggage. I got the keys to my car, which turned out to be an egg and zoomed off into Anchorage, AK. After getting showered up and rested Chris’s plane arrived, so me and my buddy Antionette from picked him up and went out for food and drinks.                    IT IS SO IMPORTANT TO REMEMBER THE THINGS THAT YOU ENJOY DOING!!                    1st Stop: The Undergarment Room-Chris_Antionette_Sophia(Me)

The next morning we hit the road for 6 hours up to Fairbanks, AK..Doing the most! In order to see the Aurora Borealis, Cheyna Springs and the Ice Museum we had to earn it in miles. The scenery was a treasure, I had a tough time keeping my eyes on the road. It also got very cold about half way there, so much so that we had to stop and buy a sweater because we looked like lost Texans. I was enjoying every bit of not knowing what was ahead of me. How many times in life do we get to experience things like this, pure moments that just captivate us? Look what I found in Fairbanks.

Aurora Ice Museum





The morning after Fairbanks we hit the road again and made a pit stop at Denali National Park hoping to see some wildlife. Instead we hiked to the top of a rock. Yes, I had a lot of trouble breathing but I took my time and brought a pulse ox. I also sat down at the top of the rock so my heart rate could come down before continuing.

Top of the rock at Denali National Park

Ok, we got the fun bug out a little and were headed to a small town known as Talkeetna, AK. We had rented a yurt for the experience and just had to spend a few hours in it at the least before our long drive the next morning.

The Yurt Experience


The yurt was super cool! You must do this once in your life even if it’s in someones back yard. Now we were headed all the way down to Turnagain Arm to see if we could spot some Beluga whales before our final stop in Seward, AK. We didn’t see any whales because at this particular inlet the lunar phases draw back the tide and the inlet is completely drained of ocean water. It’s not until the moon is further away that a wave 1 mile long comes all at once to fill the inlet once again.



Turn Again Arm Inlet headed to Seward, AK.  

The drive to Seward was astounding as expected from Alaska. I was so in love with everything this land revealed, how was I going to bring myself to the understanding that I had to get back on a plane that was going to take me home. Seward, AK. was where we spent the night so that we could leave on a catamaran in the morning that would take us out into Kenai Fjords National Park. This park is mainly accessible by boat and led to the glaciers that are still slowly breaking away. It was a total of 6 hours in the Alaskan Gulf Coast, rolling waves and ice in the wind. What more do you need to remind you that you are ALIVE!!

Sewards backdrop was insane! The sky was reflecting on the water.
Aialik Glacier measures 1 mile long
On the catamaran we saw bald eagles, otters and other people!How to get an egg stuck in the snow.

In conclusion my blog followers, I am forever changed after challenging myself to the visit of a lifetime. I saw a moose, otters, a speck of a bear, a glacier, and happy people! I also got stuck in the snow so when you are in foreign territory do not venture out too far!


Caribbean Queen*3 Countries*One room



Hey PAH Warriors,

We’ll shortly after returning from Alaska I remembered that my parents, myself and my hubby were all paid up for a caribbean cruise going to 3 countries. I was sooooooo exhausted from being in the climate extremes of Alaska and bearing the stress if worrying if I had packed enough medicine. But I had a cup of coffee and it was like magic. <Insert glitter effect here>


My hubby first vacay that was not a deployment!!

After 6 deployments I owed it to my husband to show him the beautiful world and remind him of what it feels like to leave it all behind, including your CELL PHONE! My parents are in their 60’s now and don’t really travel much either unless I nag them. So I won this battle and we were off into the blue! Any cruise as you know offers FREE FOOD, come hungry and skinny! Oh my were we in for the surprise of our life when we saw all of the buffets and ice cream machines! Our first stop was going to be Cozumel, Mexico, a lovely place to visit. First our guide took us to the Mayan ruins off the coast of Cozumel.

Kayaking through a Mayan village 

Still in Mexico, we were now about to hike to the hidden river. The water here was spring fed and so completely clear you could see everything growing underneath the kayak as you pedaled by. Once we made it to land on the other end we arrived at the still operating Mayan village where we were greeted with homemade dishes from their hard working community.

My dad and I not swimming in the sink whole. #IVPROBS

We continued ahead on the trail for the cenote, a mayan word for “sink whole.” There was a swinging rope that I plan to revisit once I get the implantable pump under my skin. Tip: I wrapped my pump in a ziplock and then placed it in a waterproof pluck around my neck before getting near any water. I packed an additional pump, batteries and dressing change kit.

Back on the ship and off to our 2nd country which is Belize. This place is struggling and survives primarily off tourism as do many caribbean areas. Education is not free nor is healthcare so you either do or you don’t in this country. We decided to take a city tour that led us to the Belize Zoo 1hr away from the port. Here I was able to pet a Lampir, as seen below.

The Lampir of the land.

I was NOT supposed to touch this animal but I was drawn into his peacefulness and couldn’t help myself. It wasn’t until after I left that I realized I am the foreigner with the bacteria that could upset their ecological balance. Thankfully I had washed my hands! The rum a this gift shop was only $6 a bottle and so I had to support their efforts by buying several. I still haven’t tried it yet but it was a great souvenir. The bus didn’t have a restroom so I was miserable. I didn’t want to drink water so that I wouldn’t have to pee. But as you PH’ers know we have to alleviate our fluid retention ASAP because of our enlarged hearts. Tip: I just peed every chance I got and I sipped on water as opposed to chugging bottles. I also caked on the bug spray so I wouldn’t come home with the mosquito virus of the century. Wear thin long sleeves and pants, baseball cap and tennis.

Belizians for a day

Here we ate the best coconut shrimp of our lives and shopped until we dropped!                                                            Next stop the beautiful Island of Roatan, Honduras.







Tortuga Island turtles weigh over 500 lbs.

Thank you Roatan for all of your talent, hard work, kindness and allowing us to be a part of it for a day. On this Island we rode flying chairs or our private beach where we ordered pina coladas. Then we went on to our kayak ride that ended at Tortuga Island or Turtle Island. The gentlemen there named Antonio let us get in the pool with these gentle creatures and feed them. I even kissed one on the head and then asked Antonio  him if he needed an assistant. After returning to our covered chairs we were able to leisurely enjoy the day. I attempted to get in the ocean waste deep with my husband’s assistance so I could tell a better story when we got home. Here I started to notice a ton of tiny red dots all over my body. I asked the nurses station about it and they said they were bites from sand mosquitos and they would go away in 24 hrs. I didn’t feel sick and had a great appetite so I didn’t worry too much. I just kept on spraying bug spray and drinking water. Tips: ALWAYS bring your extra pump, batteries and dressing kit, ALWAYS! Wear sunblock and drink more water than anything else!

The Island of Roatan experience.

An easy way to pack up your IV meds.

Hey PAH Warriors,

The last 2 months I have traveled from North Carolina to Alaska then back to Texas. Then I went from Texas to Mexico-Belize-Honduras and then back to Texas. Guess what the vey next day we hit the road to come back home to North Carolina. How do you travel whether for business or pleasure and not have to worry about mixing your cassettes in a sterile environment?

Recently Accrued RX included a short informative medication “How to” that states you can safely pre mix your cassettes as long as you stay with in a 14 day window and are mixing with diluent.* I always remind folks that I am not a doctor. I am only a patient that has lived with PH for 16 years and been on IV therapy over 8yrs. Since this is my second time around I really wanted to make a difference in the lives of others that may be wondering how to make the transition easier.

You may have read in my previous post that I traveled with all of my supplies so that I could mix when I reached my destination. Recently I changed my process to alleviate stress and luggage space. Not to mention the full on interrogation process at the airport. LOL. (I have a new way to get you through this too.) Before leaving to Alaska I mapped all of my mixing days out on a calendar by putting a large X on the days that required a cassette change. DO NOT PASS 7 CASSETTES6 pre mixed Remodulin Cassettes

I totaled 7 days, so I mixed 7 cassettes on the morning before my flight. I packed my Remodulin because it is the most expensive item that Accredo would have to ship in the even that I should get delayed on the other end. Supplies are usually easier to ship and less expensive. If requested Accredo can loan you an additional pump when you are traveling outside the continental U.S.Here is a break down list of the other items I packed for my IV therapy:

  • Remodulin(Keep it cool and sealed)//Batteries//Dressing Change Kits//Aqua guards//Transpore tape 2″//Extension tubing for every cass. change(7)//Q site adapter w/green tip// Additional pump//Zip Lock bag for my pump

How to get through the airport with privacy when you are disabled. After going through 6 airport security gates in less than a month I must admit that I was a little offended at times. It had nothing to do with not understanding national security or respecting the lives of the passengers that I was traveling with. It was the process. For instance I told the 1st TSA rep. “I have a pump attached to my chest that keeps me alive” then the next representative would raise their voice in panic saying ” Mam your pouch please, you need to remove that pouch!” I had to go through the X-Ray machine twice and the pat down twice because the TSA rep’s had never seen a patient on IV therapy before. After this I decided to ask the TSA supervisor about privacy for patients like me. I figured a private pat down would benefit both of us because they could take their time with us and not leave us standing for so long in front of hundreds of people pushing and shoving. He apologized and mentioned a new program T.S.A Cares that allows you to register on-line before arriving to the airport so that the TSA representative know to expect you and can better assist. WOW! This is perfect for all disabled folks! Here is the info.:

Transportation Security Administration CARES: 855-787-2227 Mon.-Fri. 8am to 11pm Weekends 9am-8pm

Any questions fires away and good luck on your future travels!

Smoky Mountain Adventures

Hey PAH Warriors,

The Smoky Mountains are named after all of the ashy clouds that roll through its ridges. The mountains are home to the Blue Ridge Parkway and a ton of beautiful waterfalls that people travel from all over to see. I am trying to see as many as I can but each one presents it’s challenges. There are some waterfall trails that have long walks, steep hikes or tons of steps. I remember arriving at Mingo Falls in Cherokee, NC and looking up at the steep stair climb and thinking, “oh my goodness I am going to use all of my energy just getting to the top.” Have you ever felt this way? Pulling over to the far right or the slow lane has always been a relief, similar to when we are driving on the highway. What I used to think would be embarrassing or annoying for the line behind me has become a very rewarding journey. What I tend to find is that we are not as alone as we may feel at the very beginning of our diagnoses.

Remember PAH Warrior? I truly believe that we are strong, admirable individuals who posses a strong desire to live. This is why we are out there living, even if it is one step at a time.

There are tons of pictures that can be taken at anytime on any day, so I try to only take a few memorable ones. Think of how nice it would be to not have a phone obstructing your view while your out in the world exploring.

SOCO FALLS CHEROKEE, N.C/Must hike down to this waterfall, slippery.
LOOKING GLASS FALLS, PISGAH NATIONAL FORREST N.C/ Paved walking trail to this waterfall
Quick stop to take in the earth around me.
Quick stop to take in the earth around me.

Tip: My backpack always has my cell phone, water, an inhaler (if you use one)dressing change kit, and an energy bar.

Laurel Creek Falls, Boone N.C
Laurel Creek Falls, Boone N.C Aug 2016/ Less than a mile hike

Puerto Rico!!

Hey PAH Warriors,

As a commitment to this page I promised myself that I would update and post all of my travel adventures so that others with illnesses, specifically Pulmonary Hypertension, would feel support in their decision to venture out.

Puerto Rico had me at mojito. I started going back in the early 2000’s because tickets were so inexpensive and you do not need a passport to enter this U.S Province. I paid 500$ Round Trip and I split a condo that we found on ( a site that allows private owners to rent their properties) with a group of couples. 1 week, an ocean front condo with a remarkable balcony view, only 250$. The rental car was $475. These numbers are important to share because of a lot of folks with PH are on a limited budget. When we arrived we bought groceries and cooked most of our meals at the condo. This freed up funds to do exciting things and forced us to return and rest in between our excursions. What did we do:

Went through a maze of palm trees!
Went through a maze of palm trees!
Found this cliff in Cabo Rojo and didn't dive off of it.
Found this cliff in Cabo Rojo and didn’t dive off of it.
Kayaked in the Bioluminescent Bay!
Kayaked in the Bioluminescent Bay!

I always make sure to look up the weather before leaving for the day before venturing out. Sometimes it’s safer to choose one excursion over the other, especially if it involves the ocean! Memory: Here I am in Puerto Rico on IV Remodulin, riding an ATV in the rainforest. I was completely distracted by iguanas and horses so I did not realize that I was hunched over my IV fanny pack. Apparenlty my buckle was hitting the stop button on my CADD Legacy pump the entire ride. We headed back to the condo for dinner and I am pale as a ghost and vomiting. When I checked my pump I noticed that it was COMPLETELY OFF! Worst night mare activated!

Just because one person with PH has a little more wiggle room to try things this may not be the case for you. You know yourself  very well and your limitations. Sometimes we want to be the people pleaser when we are in a large group, especially if we are the only one that is slowing them down. It’s not worth the trade off. Tip: Please don’t get to carried away, always check and double check your pump, site, meds. Without these essentials we would not be able to go out and enjoy ourselves.

How do I exercise if I’m always sick?

Hey PAH Warriors,

So here’s the thing, we are all wearing different shoes and I can’t account for the tremendous differences between the degree of our illnesses when I refer to having energy or trying to exercise. One thing that we can all relate to is humanity and the will to survive. For instance, if you didn’t posses the will, the want or the way you would probably be on Netflix or Facebook instead of here looking for motivation. So congrats to you on step one, showing up:

Step One: Showing Up! You’re here and you care. Now what are you going to do about it?

It’s a tough love kind of world, and the years will fly by, the time to create beneficial change is now! Step two is acceptance.

Step Two: Focus on the things that you can do and accept the things that you can not. Allow your focus to be clear so you can continue to persevere and achieve your goals.

Once you’ve committed and accepted that you are different but still able, things will change inside you. You will wake up like a baby lion that wants to learn how to roar for the first time. We are resilient and have to adapt to the changes that each new PH therapy brings. Even those of us toting around IV pumps can workout and have weight loss goals and be successful at it. All of these changes start by you believing in your will, your want and your way. So what’s your personal plan?

Step Three: The plan! You’re plan may be someone else’s advice or something that worked for you in the past. Whatever it is, own it! Commit to it, because it has to work for you and not for the yoga master inside your T.V. Bottom line is that if you’re not grooving with it your probably going to abandon it the first day. Please be sure to follow your doctors advice when you are taking these steps.

Exercising w/ an IV Fanny pack
Exercising w/ an IV Fanny pack

I promised in my health post that I would attach a fitness pic from my slim and trim days to show you’ll what happens when you commit. I used to be 141 lbs. 5’3″ for years and couldn’t loose weight for the life of me. What I failed to realize is that I was living in fear of what I had been advised by my docs. Which was the basic “don’t do too much” line. That wasn’t working for me anymore and at that time I had also got dumped so I needed some major soul therapy. This was when Adele released her first album 19 and I had moved to a Loft Complex that had a climate controlled gym. YAAAAASSSS!!!! I put my Adele playlist on and walked into that gym with fury towards all of the things that I have been told that I CAN’T DO BECAUSE OF PAH. As of that day I said no more and never again since then.

I started light just stretching and toning and using free weights. I did all of the things that I learned in Yoga just so I looked like I knew what I was doing in the gym. I had my heart monitor on so I could keep an eye on my HR and Pulse Ox. Guess what? It worked. Everything that held me back for over 12 years with PAH had been set free because of a heartbreak, go figure. I use to cry with Adele and lift weights at the same time. I didn’t care what the people around me thought but I remember the feeling of liberation and strength all at once. I LOST 20 lbs and went from a size 6 to a size 2. I’ve done that twice in my life now and I am at it again. When I lose weight it’s not about making an impression for anyone but myself. I want to be proud of myself in the mirror and say, “Im going to live longer, and my heart will too!” You don’t have to loose as much as I did, sometimes I get carried away! There will be people that are negative and will try to slow down your positive progress. This is when you can make a change for the better in your complete and immediate life.

I didn’t always feel like going to the gym so I used a pre workout that was approved by my doctor. You have to be extra careful here y’all.

Mountain Biking In N.CTip: Your pre workout shouldn’t have a lot of caffeine or creatine. Too much caffeine combined with exercise can be bad for your heart and creatine causes the body to retain water. Look for a nitric oxide blend which allows more oxygen to travel to your muscles. Follow up with taking branched chain amino acids(BCAA). They are essential to your bodies recovery process. Please look up these things and learn for yourself. You will feel more confident about your decision to start a workout plan.

You’re living room can be your gym, its all about your attitude and commitment. Give yourself a break when you need to rest. Remember you do have a disease that will slow you down in between your workouts. Never push passed the feeling of light headedness or a tight chest or the heart rate that your doc recommends. Sometimes you will have to call it quits before your mind wants you to. Your will, your want, your way!!!

How to get the energy to travel and do things around the house?

Hey PAH Warriors,

Most of you know that you don’t have to be buff to be considered a fit individual. But most people that are in shape do eat healthy. I like to stay healthy but I find myself  falling off the wagon every time I smell movie popcorn. Is anyone out there guilty? Sometimes I have a little pouch by the time I realize what I have been doing to myself. I seem to pay more attention to my overall health right before I go on a trip. Why? Well, I certainly don’t want to be attempting to hike to a glacier or be on a cruise ship in the middle of the Caribbean and feel like a cream-filled doughnut.

Most of the reasons that we feel crappy despite our health, is what we are eating. Remember that good ole’ saying, “what you put in your body is what you will get out of it?” Do I sound like your mom yet? Sorry, but it’s true and here is a short cut for those of you that like to procrastinate or just like eating what you want until the very last minute, JUCING. Yuck! It’s really not that bad and you can tailor  it to your needs. Take me for example I think I’ve mentioned my diarrhea, no shame, it’s bad. Because of my digestive track I am hesitant on juicing. However, my logic is that I am going to have this problem either way so I may as well be getting something out of it. What do you get? Micronutrients, basically all of the purest forms of vitamins that your body needs. I start with:

*2 strawberries, *1 orange, *spinach and kale leaves, *1 kiwi,* *a few slices of cucumber, *half an apple,* 5 mini carrots and then I add 2 cubes of ice along with a 1/2 cup of Almond Milk. Then blend away and I guarantee you it will taste like magic. Use this drink every morning to get your oral meds and daily vitamins down the hatch. You will be immediately full but it will burn off fast which is a good thing so be prepared to follow up with a healthy snack. (banana, almonds, tuna tray) Tip: I use a NINJA Juicer.

What juicing looks like . Drink once a day for 2 wks.
What juicing looks like. Props to my NINJA
Other ways to eat your fruits!
Look for your local Farmers Market and stay fresh!

In one serving you will have handled your entire day like a healthy adult. Dayyyuuuummmm your awesome! But it only works if you do it! Commitment is key! Noone is watching you. Noone will spank your hand and tell you that you have been abusive to your body. Only you can care for yourself, so will you try it? Taking this step will not only give you the energy that you have been craving but it will also help you to drop pounds instantly. It has worked for me in the past. I am going to attach a fitness pick to my exercise post to show you’ll where my commitment was and so I can get back there again as well. Keep in mind that most of us are working against fluid retention so take your water pills as directed and hydrate accordingly.

Any questions, fire away? Good Luck and please tell us all about it!

Traveling while on IV Remodulin

Hey PAH Warriors,

This is my second go on IV Remodulin. Always because I have to and not because I want to. I love the beach life and its always a sad day when I have to put the bikinis away. But then I remember pictures like this one where I couldn’t even see my pump and my heart was shrinking because it didn’t have to work so hard. Then Waah Laah! Like magic I’m inspired and round two is off the ground. So, I m going to Alaska you’ll!

Can you see my IV?
Can you see my IV pump?

First: As soon as I know I am going on a trip I start setting aside the extra supplies that I have. It seems like there is always extra! I save one set of the original labeled bag for each of the items that I am taking. For Remodulin that list can get pretty long! However, I do pre-mix several cassettes (carry-on) to eliminate having to take an excess amount of supplies with me. This makes me a happier person and alleviates the load. I add 5 days of additional supplies to my travel stash. I fill all of my other oral medications and pack them in my carry-on, NEVER under the plane! My pill case stays in my purse empty to avoid getting asked what each pill is. Tip: To make sure that you don’t forget anything try to use the invoice slip that comes w/every shipment as a checklist. If you are traveling in the U.S ordering supplies will be alot easier if you do forget something.

Second: I ask my doctor if she can recommend a local doctor or clinic where I will be vacationing. For Alaska she couldn’t find any PH doctors so she looked in Canada and still no joy. She gave me the number to a cardiologist in Washington Sate. However, I know a bunch of PH’ers on-line that live in Canada so I will network. Get on Instagram and look up #pulmonaryhypertension or #phaware and see who and what you find. There are tons of support groups on Facebook or just search by starting with they are a one stop shop. We must utilize our resources, we are so lucky to have them at our fingertips. Puerto Rico had a PH Support Group on-line which is why I felt so comfortable going there not once, but three times. Hawaii also had a tons of clinics and docs for PH.

Hiking Pipeline Pass in Anchorage, AK.

Third: Considering the climate I must pack accordingly for every trip. Everyone usually does this regardless of having PH or not. But I always look up things like the sea level to determine how I will be breathing on this trip. I’ll never forget my first trip to Colorado, 6,256 feet above sea level at some points, I was miserable the first few nights. Acclimatization takes time and thinner air usually means trouble for those of us that have lung issues. Some recommend taking folic acid to improve your red blood cell count before you travel. For Alaska, even though I went in September it was still in the 40’s, so I packed thermos and hoodies. From glaciers to whales,  those areas were chilly and windy. The last thing my Hickman needed was Pneumonia as a companion.

Fourth: Call the airline or travel station. The lady I spoke with was kind, but they aren’t always this way. Don’t let that ruin the fun that you have planned. I tell them that I am disabled and cant stand for long and that I will have liquid medication in my carry-on luggage.  You can get a disability pass and get into the shorter line. Sometimes the line goes off into a side room where they are a little more thorough with their search into your medicines and will wipe down your pump to test it. Sometimes security will recognize when a person is on IV therapy, but try not to be offended if it’s new to them.

Airports = a long day, so my tennis shoes are laced up and I usually chug a Monster (the vitamin one), no judgements. GRAWWLLL!! Put your game face on!

Fifth: I do take some extra steps in protecting my Hickman line once I am on the ground and ready for adventure. For instance, I may put an aqua guard over my tegaderm, in case I may be in a splash zone. I also bring Saran Wrap to secure my Q-syte right before I head into the fun. I do not leave it wrapped all day because that tends to create moisture.

Yes, I know were aren’t supposed to do A LOT of things but some of us just do. In case this is you, you may as well be as safe as you possibly can when you’re out in the wilderness of the world.

Kayaked in the Bioluminescent Bay!

Once I went kayaking and only my bottom got wet. Thankfully it was in a lagoon and there weren’t waves to splash up on me. Shhhhh, don’t tell anyone! Either way I still had my pump in a ziplock inside of a fanny pack. Then I wore it as a neck sling so that there was no way it could get wet or fall off. After a hike or a long day at the sunny beach your tegaderm will more than likely want to fall of your skin. Be kind to yourself and pack extra kits and tape so that you don’t have to worry as much. I have taken my pump to the beach & spent the day on the sand like every one else. I just left my bag around me the entire time. I put a large nude colored band aid over my tegaderm to blend it when Im in a bathing suit. Works like a charm! Tip: Please keep in mind that I do these things at my own risk and I am only sharing with you so that you can have a safer experience should you attempt a little adventure.

Sixth: Good luck and have fun!!! Have questions or comments fire away!