Survivor Sunday: Sarah Lowery

Finally, our first Survivor Sunday is here!! I’m so excited to write about this lovely young lady and her journey with this terminal disease. We are PHighters together and proud of it. Want your story heard? Email me by February 20th so you can be randomly chosen at haley.ann.92@gmail.com

Being diagnosed at Eighteen months old was the easiest part for Sarah and her family after spending what seemed like hopeless amount of never-ending months of trying to figure out what exactly could be causing such problems with their baby girl. They had traveled not only all over our country, but even the world to seek out an invisible disease that no one could quite pin point. Doctors wanted custody of Sarah to perform round the clock tests and even her mother was accused of causing problems. Finally, when they identified PH as her actual issue they were given the news that she wouldn’t live past five because lets face it people, back in these times they didn’t have many treatment options. However Sarah soon got past five and embraced a whole new journey of home schooling, medications and even being put on the transplant list…more than once.

Sarah

Sarah however has done remarkably well without a transplant and is on a successful treatment that consists of Digoxin ,Lasix, baby aspirin, Enalapril and Singulair. Despite her current symptoms (Shortness of breath, chest pains, exhaustion and easily getting sick…I can totally understand you girl!) she has dealt with her fair share of “non believers” and having no support, but is now completely surrounded with wonderful people who provide nothing BUT support. Not being able to have children is a daily struggle and trying to understand why our bodies cant be strong enough for such a wonderful thing. Sarah, we will both get past that. I can completely side with you on this issue and I love you so much because I understand that hurt! Anyways, here we are at a much lower right ventricle pressure in the late twenties (it use to be in the 90’s) and many years later. Not only has God but her bubbly personality pushed her all the way into a wonderful recovery despite what doctors may have thought. She’ll be dead by five years old? No I don’t think so, because I’m writing about a wonderful twenty-four year old who isn’t going anywhere anytime soon. So happy to share with you a fellow PHighter, Miss Sarah Lowery. You are beautiful, strong and have been through SO much more on your PH journey than I have. Keep PHighting love, YOU are PHabulous!!! ๐Ÿ˜‰

-haley.

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Fashion Friday: Surgery Sophistication

So, this is going up on a Saturday because I didn’t have access to my computer yesterday. But hey, I guess it’s just fashionably late. ๐Ÿ˜‰

So while in the hospital, my best friend Candice kept teasing me with how I arrived and departed because I was all sorts of dressed up and she was expecting sweats and a tee. I am a strong believer in that even though I’m going for surgery, I will not be showing up in my pajamas. I will still look like I took my time getting ready that morning. I’m not saying I’m showing up in stilettos but I will be looking put together. But we also need to accommodate to our body and how we will be feeling when we leave. So here is a little guide on what maybe you should show up in for your next procedure or heart cath.

TOPS

So obviously we want something comfortable but not ridiculously lazy. Thank goodness we live in a society that produces cute sweatshirts and things like that where fashion is becoming more centered on comfortable. For a heart cath in the neck, it’ll be a little hard maneuvering things as well as turning your head. You will be sore! So in this case I went with a chunky knit, loose sweater that will hang on you. Its going to keep you comfortable, because it is not constricting and it lays lower on the neck so it wont be in the way of your surgical spot. And lets not forget about the print on the front making you ultimately cute yet comfortable. Seriously, people think you’re just crazy for looking so cute in the hospital when it’s really not that hard!

sweater

Available at Forever 21

BOTTOMS

So I would go with Yoga pants cause those are an all time comfort, but then we would just look grungy. Fight that urge off! So for bottoms, these are super crucial if you’re having a heart cath in your groin/leg because you need to be very careful when it comes to getting into these and out to avoid bursting your artery. So for this I chose my favorite most comfortable jeans from American Eagle. Now wait, you hear jeans and we automatically think tight and constricting. I’m not saying go buy your hoochie, low-cut size denial jeans. These jeans are boyfriend cut, and are made to be just a tad bigger than normal jeans. They are comfortable especially after a couple of wears. Throw them on, let them be baggy and don’t worry about it.

Boyfriend Jeans

SHOES

Flats flats flats!! Cute and comfortable is what we are going for, so pass up on the sneakers (you’ll just have to bend over and tie those annoying strings and you can’t bend over anyways) and pass up on those old sandals you throw on. Instead go for a cute, sophisticated flat that is comfortable and you can merely cram your foot into it without thinking about it. Of course I went for a pointy toe to keep it skinny, and look at those cute hearts!! This is perfect and gives us that little pop of color. This is the definition of looking cute without trying. The clothes are doing all the talking!

Heart Flats

Available at Forever 21

THE GREAT BAG

Oh this doctor bag is just amazing! You need an amazing bag anywhere you go, and especially here. You’ll be given tons of paperwork and things like so that you can stuff into it. A great bag is always necessary, end of story. As for other accessories (necklaces, rings, etc…) leave those at HOME! This is surgery, and you will have to take them off. They just aren’t worth wearing this day.

Doctor Bag

Available at Forever 21

Hope you enjoyed it ladies! You should always be looking your best. Just because we’re required to be at the hospital a little more than usual does not give us an excuse to grunge out. You are fabulous, so look fabulous!

-haley.

Lower Your Pressure

Oh lord y’all, I’m so sorry I was gone forever AND we missed Fashion Friday! I got suuuuper sick and I’m in the process of working past it but I’m much better! Moving on!!

So lately I’ve been on the topic of support and families and I’ve often wondered what it would be like to deal with someone who had PH in my life, and how I would treat them based on what I would want or what us patients need. As a family member, close friend or loved one, what should you be doing for that person with PH in your life? Well lets see…

WE NEED SUPPORT.

We don’t need your half-hearted call once every couple of weeks to check on our physical status support. We need your “all in” support or you can consider yourself “all out”. Support means almost daily communication, not of just our disease and what we deal with but maybe our lives too? We need emotional and mental support just like everyone else. And we can say we don’t need anyone at serious appointments or hospitals, but we do. Also, lets not forget financial support if we aren’t already independent. Having a disease is to say the least, EXPENSIVE. I can’t even name all the things I’ve had done to me and how much we spend a month or rack up with collectors. It’s a burden and we realize that so it is beyond difficult. Get use to that and get use to hearing us complain about it. Be supportive. The end.

WE ARE NOT BREAKABLE

We are not the porcelain doll that you think is going to break every second. That just gets annoying! Yes we like to go out and live our lives just like anyone else and NO we wont die when we pick a bowling ball up. We are (or should) be very aware of what we are capable of and we will let you know if its going too far. But until you see us huffing and puffing, stop asking if we’re dying. It’s a constant reminder that maybe you just aren’t comfortable with our body yet, and we’re trying to get use to our own bodies too.

DO NOT REMIND US OF OUR IN-CAPABILITIES

“Oh, but you can’t do that!” is a trigger word for me wanting to slap you. I know what I can and cannot do, and I’ll be sure to tug your sleeve when I have a concern. Until then, if I agree to go to the gym with friends stop acting like it’s the top story on the news channel. When you constantly remind someone of what they can’t do or what they are incapable of, you are putting more of a divider there than there already is between them and common life. If you have a concern you can simply say, “Let us know if it’s too much.” You’re expressing your concern yet you aren’t shooting us down. Re-think your words.

GIVE US ROOM TO BREATHE

I don’t know about y’all, but I can only handle so many people at one time questioning my health and things like so. When I’m in the hospital I’m ok with my dad and a good friend, but when you’ve brought everyone into the room and briefed everyone on the situation it gets to be too much. Don’t bring all your friends in to see our miracle recovery, and don’t tell everyone what we’re going through. We can’t stand to be introduced as the diseased person, and some of us just aren’t ok with everyone knowing our story. Step back and let us control that part. Stop adding pressure to our situation and let us “breathe.”

As a lovedย  one you are responsible for treatment and recovery too. We cant accept ourselves if you’re a daily reminder of how different, breakable, incapable and smothered we are. Back up and let us be human and let us heal in our own ways. It’s your job to be loving and gentle not loud and over bearing. For that person in your life dealing with this, you should not be breaking these rules. And if you have family breaking these rules, all you need is distance. Dont let you or a loved one start breaking under your pressure, we are already broken in a lot of different ways.

-haley.

Survivor Sunday

Seriously guys, you have no idea what joy it brings me to meet and talk to other people with this disease. I love hearing your stories, where you’re from, what you’re up to and what you and I are struggling with. So its brought me to a new thought and something to add to the blog.

I’m going to start introducing “Survivor Sunday” which will be the last Sunday of every month. I want this post to be about another person other than me that is dealing with this disease or maybe a family member who wants to share a story. I am so excited to read about y’all! Do you want your story to be heard? Email me at haley.ann.92@gmail.comย ย ย ย  I want to hear what age you were diagnosed, your treatment plan, what you struggle with the most about PH and things like so. But I also want to hear about YOU!!! Hobbies, interest whatever you feel like sharing with people. However, I will keep your privacy. Absolutely no last names or emails will be released. If you want to submit a picture you may. I am so excited to read through these to decide who will be posted on Sunday, January 27th. Get your story in before then for a chance to be heard! ๐Ÿ™‚ The “survivor” will be randomly chosen.

Thank y’all so much for the support. The T-shirt situation is still under construction, but as soon as we have it figured out, the blog will be the first to know. Keep reading! Y’all are much appreciated!

-haley.

Heart Cath Survival Guide

Good lord y’all! It has taken me a while to bounce back from my heart cath and hopefully I’ll be good to go for work tomorrow. It got me thinking that usually some people have no idea what they’re getting into with a heart catheterization or it’s been so long since you’ve had one that you forget whats going to be important that week. PH patients have one to not only officially diagnose the disease but they also have one every two years to check on the heart, measure pressures and check your treatment progress. Always figure out what KIND of heart cath you are having whether it’s in the groin, neck or arm. Since I’ve never had one in my arm I’ll be basing my methods off of a groin and neck catheterization. GET READY.

A GROIN CATHETERIZATION

This just makes me hurt. When they go in through your groin, prepare to be exposed. You will be laying completely flat for six hours after the surgery and you wont be getting around for a few days. You need to be ultimately comfy because you wont feel much during the surgery, but you will be sore after accompanied with much bruising. Also prepare for some nerve damage which I am dealing with from my first heart cath almost 3 years ago. So lets start this list.

Fuzzy Socks – These are a necessity for both. You may not get to wear them in surgery, but once you get to take your awful surgery socks off you can slip your comfy ones on and stay warm. You will need these because you’ll be cold!!!! Comfort Food – When you finally get to eat make sure your family/friends are prepared and have comfort food on the way or picked up when you’re released. For me this would be Chinese, mashed potatoes and maybe even broccoli and cheese soup. ๐Ÿ™‚ Heated Blanket – That is the key to comfy. End of story. Favorite Show – Prepare to veg out in front of the TV, become a Netflix zombie and watch your favorite show for a week straight. You wont be getting around much!! Pain Meds – Don’t forget these beauties!! They are fantastic. ๐Ÿ˜‰

A NECK CATHETERIZATION

This one makes me hurt too! However its quick, you wont be as exposed and you leave about 30 minutes after. There has to be a catch?! Oh yes!! There will be a local to numb your neck a tad and of course some slight sedation, however you will feel ALOT of it. And it will hurt. Sorry to burst your surgery bubble but when they’re shoving a giant needle in your neck, you will feel it.

Fuzzy socks, Comfort food, a heated blanket, a favorite show and pain meds are all needed again. Except you can add these lovelies! The Total Pillow – Look this thing up! It is absolutely crucial for a neck heart cath! It will hold your neck nicely in place whether you’re laying down or sitting up. Cute Band Aids – After a couple of days you still need to keep the hole in your neck covered, and I used my cat band aids for this. You should get some cute ones also since it’ll be in a highly visible place. ๐Ÿ™‚

Well that just about sum’s it up folks!! I hope this refreshes your memory and helps for future caths. Remember to always bring a close friend or family because no one is quite back to themselves after surgery and it takes a while to bounce back. Take it easy and breathe, like always. Have a fabulous week and be prepared for a Fashion Friday coming up!! ๐Ÿ™‚

-haley.

 

What Now?

As many of you know I just got back from Houston! I was visiting my lovely specialist and of course I had a heart cath done. But before that, there was a ton of confusion and craziness.

Thank goodness my best friend Candice decided to tag along and made this trip enjoyable! She was right there (along with my dad) to hear everything the doctors said and of course take pictures. And believe me, we shopped like crazy. At the appointment I told my doctor about a recent episode I had (the first one in years) along with all the exhaustion I’ve been having. She decided to look at the veins in my neck then made an off comment. When she came back into the room I only had one question to ask. “Am I in heart failure?” She made a face accompanied with “Well…” and I instantly flipped out and broke down. For the first time ever this disease actually scared me and it was an insane thing to experience.

Candice

From day one this disease has never really scared me, which is hard to imagine considering all the news you’re given. But for some reason, itย  just hasn’t. I’ve always felt like normal “Haley” that could never have anything happen to me. Yes it’s probably part of the being young and invincible mentality but oh well. For a doctor to see something in me then hesitate telling me that I’m in heart failure sent me into a shock I’ve never experienced before. I no longer knew what confidence was, IF I was going to live long at all and what my funeral would be like. Every second, every word and every action for this whole day became questionable. I was also extremely nervous for my heart cath because this would give us the concrete evidence if I was in fact in heart failure. And at that point I began to think “What happens after heart failure at twenty?”

Echo

Needless to say the next day in the heart cath, we found out my pressures are even lower and everything is fine. But it definitely re-opened my eyes that Pulmonary Hypertension can grow on you and after a while you get use to it. It becomes something you live with daily. The needles, doctors, medication and hospitals get old and you somewhat forget how serious of a situation you’re in. I guess always take it seriously because you never know when your body could suddenly reject treatment and before you know it you’re trying to keep your head above rising water. Heart failure scared the living crap out of me for about a day and now it sits forever in the back of my mind. You should always remember this risk, however don’t become a burden to yourself. Live your life and don’t forget what you are capable of. Be aware of your disease, but don’t let it take all the power away from you.

Pre-Surgery

Surgery

Recovery has been great along with all the support! Thank you for the stories as well as all the nice things y’all have been saying. It makes this disease a little easier to PHight and I am enjoying all the comments. Never hesitate to contact me or ask me anything. I am here for support too! Enjoy the rest of y’alls week as well as the weekend!

-haley.

Follow Haley on Instagram haleyann92

T-Shirt Info

OH MY! Sorry folks, I was in Houston having a heart cath done! This week has been insanely busy!

A BIG thanks to the PH Association for featuring me on their website as well as their Facebook page! And of course thank you to all of you who have commented, and have read the blog! It is great to have support!

So about the T-Shirts…I created them with a local company and I must have at least 24 orders from people to be able to place them with the company! And that would be a lot of money collecting, placing and packaging to ship all by myself. So I’m going to talk to the company as well as the association to see if we can work something out to make it easier on everyone! But please stay tuned to see what I will decide and I promise I will hurry so everyone can get an order in! ๐Ÿ™‚

Thank you all so much for the stories, the sharing and the amazingly kind words. You have no idea how much it means to see such inspiration on my page. THANK YOU and stay tuned! ๐Ÿ™‚

-haley.